The Princess Leah Diaries

2012-02-19T15:17:00.000-08:00

We're broadcasting you Leah's Birthday party, LIVE from UCLA!

Come Join us!

HAPPY BIRTHDAY LEAH!!!

2012-02-17T13:44:00.000-08:00

Today Leah turned 1 this morning at 4:18 am, a miracle as we had many doctors tell us that she may not make it to a year. I took the day off from work to be with her today on her special day. It's been very busy trying to coordinate everything for her big birthday party that we're throwing on Sunday 2/19, although luckily we've had a lot of help from our friends and supporters. If you don't know about the party, the invite is here an all who read this blog are welcome to join us! http://www.facebook.com/events/272815919452413/

I'd like to give an update, since it's been a while since the last post. We were told by our neurologist yesterday that she received the genetic tests back, and it has been confirmed as a mitochondrial disease. It's similar to the gene mutation of Leigh's syndrome, but it's a completely new mutation that has never been documented in anyone, so they still don't know what the effects will be or what the prognosis could be for her. I still consider this good news, since it's unknown, there's nothing that says that she'll get worse or better. I have to believe that she'll get better. I have to believe that she'll live, and I truly believe that having that mind set and making sure that she is loved and supported, that it will help her recover. I believe in Leah and I never want her to sense that I don't. Of course, it's hard to hear that she has a disease that is untreatable, and anyone's first reaction would be to think of the worst possible outcome. But, everyone's last day on earth is unknown, so why not think about the positive outcome? Why torture ourselves living in fear of her getting worse or dying, when we can visualize her living, and surviving this disease.

When Leah first got sick, I thought why? Why has this happened to us? We're been through so much is our lives. Even though I'm young, I suffered a pretty traumatic childhood. I lived away from my mother for 8 years since I was 10, and I lived with my aunt who would beat me on a daily basis for things as trivial as not taking the trash out, or smashing my face into a wall and breaking my glasses because I couldn't find something she needed from her bedroom. My father died 8 months before I was born, so I never knew my father, etc. All these horrible experiences, which in the end made me stronger, but where very difficult to go through. And then to find the perfect person and have a wonderful marriage and life together and have our beautiful baby girl and live in bliss for a coupe months. And then she gets sick, and it's like, "Why?!, after everything I've been through, why this? why now? why MY baby?" And i realized yesterday that all those things weren't punishments, they were practice. Both Zev and I needed to go through really difficult experiences in our lives so that we could have a bigger purpose, which is to be Leah's parents. Not only be her parents, but be the best parents we could be for her. And in order to do that, we had to be strong, we had to never give up hope, never stop fighting for her. I know now that I'm not destined to be a great animator, or a great art producer. My true destiny is to be Leah's mom. She is already changing the world, she's bringing people from all over the planet together. She's showing us that human compassion and love for another is still something that exists. She's taught so many people to appreciate their loved ones, to appreciate their kids and parents. And I actually feel lucky and honored to be her mother, and even if we had known from the start that this is how things would have unfolded, we would do it all over again. She is our hero.

I'd like to thank everyone who has been there for us throughout this ordeal, both here on the blog and on facebook. The Princess Leah's Angels group has also been so supportive and amazing in helping us with anything and everything we need. We also have received so many messages and presents for Leah, so thank you to all of you who have done that as well. The avalanche of support we receive and the amount of prayers and positive vibes that are being sent towards Leah is amazing. It's gotten so big it's almost hard to wrap my head around it. Sometimes, we are so involved with her and our own lives that we forget just how many people actually know about her and love her. We received a beautiful reminder from the daughter of one of Leah's supporters in Canada, who is only 15 but took the time to make a very touching video for Leah, and showed us just how many people are thinking of Leah. She also created the Junior Princess Leah's Angels group on Facebook and has rallied 30 people in just a day, and I'm sure it will continue to grow with time. Thank you Anabelle, you are a true angel.

I'll leave with that for now, but for the most up the date info how how Leah's doing, make sure you "Like" her page on Facebook here: http://www.facebook.com/pages/May-the-Force-be-with-the-Princess-LEAH/166607313399901

We will hopefully have no crazy news until after the party where I'll post lots of awesome pictures.
Oh, and if you can't make it to her party, I think we will be streaming it live from our laptop through Ustream, but I'll post details of that later once I confirm it

Peace!
Frani

A New Year, a New Hope...

2012-01-16T00:03:00.001-08:00

Hello World,

We’ve been experiencing some bumps along the way, but beforeI start blabbing, I thought I would thank all of you that have sent indonations to help our baby Leah. Your donations have helped us get a car (thatworks),a new bed for Leah, food, clothing, utilities, rent and even equipment that we desperately needed.

Last year YOU donatedover $65, 000.00 to help our Princess Leah! Life wouldhave been so incredibly difficult if it were not for your amazing support. WeTHANK YOU, and send you much LOVE and PEACE.

And now to our regularly scheduled program…

When we last posted, we had to deal with several issues,including the fact that our baby Leah could be dealing with a Mitochondrialissue. Since then, we’ve had a few visits back to the ER and ICU at U.C.L.A.. I have to say, despite all the love we havefor most of our doctors, every once-in-a-while we run into that 2% that makeour stay a nightmare.

Leah began to have another set of seizures and we were offrushing to U.C.L.A.. this time around, we were greeted by one of our favoritedoctors, Dr. Lerner. He has been part of Leah’s life since the very beginning.That day, he happened to be visiting the hospital reading a few EEG’s and sawthat we were again in the ER. Thingswent pretty fast with his help. He knew the nightmare we had last visit when wehad to wait for almost 3 hours to get Leah help. We were told that incidentcaused the Neuro department to re-evaluate the way they did things. The ER staff was quite helpful and most knewof her highness Princess Leah. From there, once it was proven that Leah washaving another set of seizures; it was back to the ICU thanks to a spot EEGthat was ordered by Doctor Lerner.

Leah continued to endure mini seizures. For most of her timein the hospital she was sedated. Frani and I kept looking at the video cameraand EEG machine…not that we knew how to read it, but we still kept checking itwondering what was going on in her head. There were no big changes while this visit took place.

To make this update on Leah’s stay short, I’ll cut to the nightmare.Like I said, most of the time it’s been satisfactory, but the communicationbetween departments and certain policies, make it atrocious at best. This time,they couldn’t wait to kick us out. I literally had a nurse asking me “So, where’syour wife?—Where are we at?” How’s thatfor showing some love to a family that has had to endure the rollercoaster rideof their lives and has managed a bill of over 2 mil? U.C.L.A. has a policy that if a child is on avent, they have to stay in the I.C.U.. So, what do you do when you have a childthat STILL needs to have a vent, but cannot be out on the “floor” and is “notsick enough” for the I.C.U. either? Yousee what I mean? We were in POLICY LIMBO. Then to top it off, they didn’t wantto release an oxygen tank to us despite the need that Leah has to get her home?It’s a hospital and it can’t spare 1 damn small tank for this baby? The respiratory therapists on duty could notbelieve it either. Most of the RT’s have become family as well. They love ourLeah and have seen her fight the fight. Jaws were dropping as this same nursebegan to make it an even bigger deal. They were making some phone calls andsomeone (who we can’t mention) gave the okay but told the same “nightmare nurse”not to make this a big deal and that he would approve of the oxygen tankleaving the hospital. It was followed by him telling her “This conversation neverhappened”. Well, you can just imagine what she did. She ran to the charge nurseand told her. The S*&t hit the fan. Meanwhile, I can’t believe what isgoing on. Is this really happening? The RT’s were trying to calm me down. I hadeverything ready to leave and a wheel chair waiting. Remember, this ishappening because they need space in the I.C.U. and over a little oxygen tankmy child needs to get her only 15 to 20 minutes away. We’d rush back home andto the hospital but it was rush hour, and they REALLLYYY wanted us out. PoorLeah, was unaware of the stupidity that revolved around her. Then our savior arrived!You have heard of her on here already several times. Her name is Dr. Ischander.She walked in, in the middle of all the drama. By then, I was so angry, tearswere about to start coming out. She looked at me and I explained what was goingon. The she said “this baby is NOT going anywhere!” The nurse looked a bitpuzzled. “This baby needs to be on thenew vent settings for 48 hours before she can be sent home. If for whateverreason the vent settings are not right this baby can have serious problems. Shestays”. Hurray for Dr. Ischander! So U.C.L.A. gets a 10 for making theadmitting process a good one, and a 0 for the discharge. Inconsistency can ruina hospital.

Home for the Holidays

After our 48 hour stay and being released from the ICU, wemade it home safely. Leah was extremely sedated as we tried to keep the seizuresat bay. It was very hard seeing our little girl so sedated. Her eyes seemed tofloat in opposite directions; she trembled and was having these weird movementsthat I can only describe like a startle. Honestly, we were happy to have herhome for the holidays.

Chanukah was really one of the best for me. I had my babyhome and we were happy. My mom was finally able to make the trek all the wayfrom North Carolina. My mom has had a few health difficulties and financiallywas not in a place to make the trek, but luckily we had one of Leah’sbenefactors foot the bill. It was greatseeing her and it was also such a joy to see my mom holding our little Leah.She was so happy to make it out here too. I’m not going to lie, it’s alwaysgreat to have my mom give the big hugs when needed.

While Frani cookedone of the most delicious dinners ever, we placed all the new ornamentsthroughout the house and invited some of our friends to celebrate the FestivalOf Lights on the first day of eight. Our friends, Mike and Rachel, came over and we lit thefirst candle. Chanukah now means a little more, because for us, Leah is ourlittle light. And like the Maccabees who fought against the Assyrian Empire sheis a fighter too. She is also like the oil that they found for the EternalLight at the remnant of the Temple they tried to destroy. The miracle is theyonly found enough oil to last less than a few hours and it lasted 8 days. Leahis our little light. One of Leah’s names is LUCIA. It means light in Italian(Frani’s dad’s side is of Italian decent).

Although Chanukah was a happy 8 days for us, Leah had somerough times as she recovered from her seizures. I kept telling myself not tojudge her health because I knew that part of the issue was all the sedationthey had given her. Frani and I would caress her beautiful face, cuddle withher in her new single bed we got (with the help of donations), and sing or readto her. Regardless of what they tell us, we will continue to try our best asparents!

Christmas, was around thecorner and we knew that there would be a possibility that we would not havenurses. Betty one of our amazing nurses, came to the rescue and stayed with Leahfor half the day on Christmas. Thank you Betty. Our other nurse and newestmember Jill, also came for half a day too. So it wasn’t too bad. Thank youJill. Still, Frani and I took shifts taking care of Leah when we didn’t havenurses.

Then we had a visit from themanager and Chef’s of MASTROS! It is a 4 star restaurant in Beverly Hills! Oneof Leah’s benefactors and friend Phil, managed to pull that off for us! What anamazing meal. We had steaks, lobsters, shrimp (hey, we’re not Kosher), mashedpotatoes, chicken, green beans, bread, cream corn, two cheese cakes an two bottlesof wine! We’ve never eaten such amazing tasty foods. Needless to say, it lasted many days and ourtummies were well nourished thanks to these wonderful people. We shared ourmeal with some friends and also our nurses.

Right after Christmas we hadthe most enjoyable time as a family. We had been given a photoshoot by anamazing photographer named SIGAL! We happened to meet her at a café around thecorner from U.C.L.A.’s Hospital. I’m not quite sure how we started chatting butby the end of it she gave us her card and we were making a date for thephotoshoot.

Sigal was amazing. She was soincredibly patient with us as we tried to maneuver around Leah’s machines andtransporting her from her room to the living room area where the photoshoot wasto take place. Frani was having a blast the night before choosing all thewonderful outfits for the shoot. We really had such a fun time with Leah. Itwas such a family day for us. Despite the fact that Leah was connected to somany machines and despite her sedation, it felt so good to be able to have aday where things just felt “normal” for lack of a better way of describing it.We were doing what most families do with their cute kids and taking pictures.Leah behaved amazingly and never had any issues with anything for all the hoursof her shoot. Sigal eventually posted some of the pics on facebook. We were sotaken by these pictures. Thank YOUSigal!!!!

New Years was a little roughon us. We didn’t really have nurses and we took shifts taking care of Leah. Somethingwe are now finding we have to do since the Nursing company hasn’t figured outthey need to find a substitute nurse! But that’s another story. Leah was still heavily sedated and I foundmyself praying harder than I ever had. I guess the lack of sleep was affectingme more than I would’ve liked to admit. I kept looking at Leah and hold hertiny trembling hand. I recited the prayers I was taught in Hebrew School. I’mnot really that religious, but when you are in desperate need of miracles foryour baby you do your best to make a better connection with The Eternal. Itried desperately to find a prayer I could remember correctly in Hebrew. Iguess in the end, I opted for good ol’English. Frani was cooking and getting things ready, and it was just me and Leah.I began to think about all the supporters around the world that showed our Leahso much love. People from all religions were writing us now. Hundreds uponhundreds were telling us that they too were praying for her. The love for Leahwent beyond religion. We had Muslims, praying for her and asking their Imam’sto say a special prayer for her. We had Catholics praying and having massesaround the world and at the Vatican. We had one family make the trek in awinter storm to go to a Church in Canada where a Saint who had been given thegift to heal was buried. They even sent us a pic and video. Mormon’s werejoining the fight too. Pentacostals, Charasmatic Christians, Methodists,Lutherans, Pagans, Coptics, and Jews; almost every major religion was nowrepresented in our circle of prayer warriors! How amazing it was. No one caredwhether we were Jewish or not. They prayed despite whatever faith theyfollowed, because in the end they knew who they were praying too and why, andfor that I love them all. With that in mind; knowing that I had the backing ofall those people praying for Leah, I imagined all of us holding hands aroundthe globe; our eyes closed and concentrating on the power of prayer. All-of-a-sudden, I felt an amazing sensationthroughout my body. I cannot truly describe this to you since I had never feltthis before, but I would like to think it was indeed the power of prayer atwork. I turned to the machine that read her heart rate and oxygen level and itwas at the best place it had ever been! Leah’s tremors temporarily werestopped. You can think whatever you want, but I know what happened that night.

For those of you reading this,please continue to pray for her. As I tell Leah’s supporters, it’s not aboutsending money to help out, it’s aboutprayers too. Even my Atheist friend said to me, “I don’t pray, but I’ll do itfor Leah.” Leah, my beautiful Leah, ifyou only knew how much of an impact you are having in this world.

Frani’s turn to write.Part 2 willcome tomorrow! We still have so much to share.

Leah, hooked up to her EEG

Chillin in the PICU

"Nana" comes to visit Leah

the 3 Esquenazi ladies (just 1 missing, Debbie)

Makin' latkes on Channukah!

Our mini menorah

Lighting the candles and saying the prayers with Rachel

Love!

Photoshoot!!

Leah, being FIERCE!

Sigal, Leah's amazing photographer

WHAT THE DOCTORS AT CHILDRENS HOSPITAL SAID

GLOBAL SUPPORT FROM STAR WARSFANS AROUND THE WORLD INCREASES,

IN THE MAKING: THE PRINCESSLEAH FOUNDATION

MY SON NIC MOVES TO LOSANGELES

A Diagnosis?...

2011-12-11T20:13:00.001-08:00

Hi everyone,

I'd like to start by saying thank you to everyone who takes the time to read our blog, share their comments and pray/hope or the best for Leah. I know that we have so many more people who read this than we originally thought would be reading, as it started as a blog for our family and friends. But I've realized that everyone who reads this is now just that, our (very large) circle of family and friends from all over the world. So, thank you for taking the time and for being patient with us as we don't post as often as we'd like to.

The truth is that this week has been one of the more difficult ones we've had recently. I think the last post was related to Leah's visit to the PICU during November. We ended up staying until the day after Thanksgiving, Nov. 25th, as she was on lots of IVantibiotics and they couldn't send us home with a PICC line since it has such a high risk for infection. The day after the previous post (11/18), Zev's son Nic, came over for Thanksgiving from Texas. He wanted to spend the holiday with us and his new sister, and stayed for about 10 days. We had hoped we'd be home for Thanksgiving, but we would have been rushed and she wasn't ready to go home yet, so we stayed an extra day. We were really lucky, that one of the supporters from Leah's Angels on Facebook contacted the local Whole Foods Market and got them to donate a whole dinner for 6. It was really unexpected and welcome, as we weren't planning on having Thanksgiving at the hospital. We invited a few friends and my mom, and we just had our diner there in the hospital room at Leah's bedside. It was probably the best Thanksgiving I've ever experienced, since the people I love the most were there to share it with us and we were all very grateful to have our precious angel with us for the past 9 months. Grateful that she continues to fight and hang on and enjoy life, even with all the odds against her. We also had KTLA news interview us at the hospital to give an update on Leah's condition, and to report abou the donated dinner from Whole Foods.

The update that we didn't really talk about much on the news report was about Leah's most recent MRI. If you've followed her story from the beginning, you'll know that when she had an MRI done last May, they didn't see anything that could explain the symptoms she was presenting. She had a new MRI in November that gave them new information on her possible diagnosis. They saw som shrinkage in her brain, which they don't know if it's related to the seizures she suffered, or if it's an indication of something. But, they are planning o doing another one in February when she turns 1, to see if it looks the same or not. They also found some lipid and lactate peaks in the area of her brain that controls movement. They told us that they would be comparing it to the genetic exome sequencing test that they did a few months ago to see if they could decipher it.

So, we went home on Black Friday and everything seemed fine for a few days. However, we started noticing that she was still very groggy and sleepy throughout the day. This is most likely due to all the new med she's on for the seizures to stop. She used to be on Clonopin and Tegritol, and was now on those as well as Ativan, Keppra and Topamax, more seizure meds. So, of course she was sleepy since these all make her be sedated. We decided to wean down on the Ativan since it's basically the same thing as the Clonopin, just not as longer acting.

The Saturday after we came home (12/3 so last Saturday, not yesterday) she started needing to be on the vent more during the day and was even de-sating (losing her oxygen saturation) while she was on the vent. Of course, this was most likely because she was relying 100% on the vent to breathe for her, and the vent settings were set to only support her while she is asleep. We also noticed that she hadn't been peeing as much as she usually did. I know it's weird, right? You normally wouldn't think about how much you pee or not, but since babies can't talk, the way that Leah shows us she is sick is by doing just that, not peeing. We called the pulmonologist, since the de-satting was starting to worry us, and she said to call the ambulance to take us to the ER. We decided to call them, since we didn't want to risk taking her in the car. They showed up and she was still stable, but as we explained our concerns to them, and asked them to please take us to UCLA instead of Cedars Sinai, and they actually agreed, as long as her nurse, Betty, rode with them in the back of the ambulance and helped bag her trach (give her oxygenated breaths). We followed them to the hospital and for the first time, I felt relatively better than I usually do when I'm driving to the ER. I guess she wasn't doing quite so bad yet, so it wasn't as scary as before. While we were in the ER waiting with her to be seen, we noticed that her temperature was going up and she was starting to have movements that looked like seizures again. Luckily, about 10 minutes ater we got there, her head neurologist came in to see us in his regular clothes, no labcoat. He had been in the building checking on something else on another floor on his day off, and heard that Leah was int he ER and wanted to come check up on her. What a difference from our last ER visit! We were lucky enough that he was right there when she was seizing, so he ordered a 24 hr EEG right away and was able to prescribe the medications right there for her, rather than waiting as along as we did last time. She also started getting a fever of 102.5 and we were lucky that all this happened while we were at the ER and not at home. Anyway, she did have a few fevers and they figured out that she had C Dif, a stomach infection that is developed after you have a long course of antibiotics. They basically kill the normal flora in the stomach, and leaves you open to getting infections like C dif.
So, she's been in the PICU for the past week and a day.

Now to part I know you're curious about, the possible diagnosis.

Last Wednesday we were told by our Neuro and Genetic doctors that they are 99.99% sure that what she has is Mitochondrial.

Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common. Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems. Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection.

United Mitochondrial Disease Foundation http://www.umdf.org/site/c.otJVJ7MMIqE/b.5692879/k.3851/What_is_Mitochondrial_Disease.htm

So, basically, every time she gets sick, she suffers from "energy crisis" and her bosy isn't able to delivery enough energy to fight the infection and support her other systems simultaneously. Which is why she becomes more dependent on the ventilator to breathe. There is no known treatment, no known cure either. There are some vitamin therapies that can be helpful sometimes, though not always, like taking CoQ10, Riboflavin, Thiamine. They are also going to try putting her on a Ketogenic diet. If you haven't heard it is a diet that is low in carbs and high in fat and protein. This is the same thing your body goes through when you're in starvation mode. You don't eat anything and your body breaks down muscle and uses protein and fat for energy. When that happens, you make Ketose (as opposed to Glucose) and Ketose has been found to help protect the brain. This state is called Ketosis, and by giving her low carbs and high protein, she'll use Ketose for energy which could help slow the progression of her mitochondrial disease, and possibly help with some of the symptoms. This is another thing that only works occasionally. I think I got a few emails and comments a few months ago from people whose kids had tried it and it worked for them. So, we'll have to wait and see. She probably won't start it until January.

I know, I know. Why is it only still 99.99% and not 100%, right? Well, as I understand it, the genetic test that they did the whole DNA sequencing was done as a research study. So, technically, they can't use those results to support a diagnosis, so they are currently conducting a few blood tests to see of they can confirm it 100% sure, and then it will be official. The tests are really complex and could take some time to come back, but for now that's sort of where they are headed and where we were thinking it was headed too. So, for now, it's still "unofficial", but they're pretty sure that it'll come back positive.

I have to say, this came as a shock, but not as bad as I thought it would. We always knew that they could diagnose her with something fatal. And that never stopped us from believing in her. We've known for months that she may not make it that much longer, so really, nothing has changed. We're going to continue to love her, and play with her, and make sure she is the happiest baby in the world. Because she doesn't have a lot of time, but she's already done so much for people in so little time. We just need to continue supporting her in everything she does, in all her achievements, no matter how big or small. But, it's like my aunt told me on the phone: "This child has become a symbol of unity and hope for the world. She's brought people from across the globe, from different beliefs and languages, together for one cause. Now, it's up to you to become the parents of this little person, and be strong for her now, the same way she's been strong her whole life".

It's true, she has become a beautiful symbol of unity and a reflection of human nature. I truly believe that people have a little of both, but are mostly good by nature. Doing something good, makes you feel good. That's why I love donating blood, I feel like I'm able to contribute in helping save someone's life. People, they see someone like Leah, and they can't help but feel like they need to help, or send prayers, or send positive and uplifting messages to us. I think we're so used to seeing all the horrible things that happen in the world and feel powerless to stop any of it. Then, when we're given the chance to become a part of something that could help someone, we feel empowered to do the best we can for that person.

I'd like to start networking with other parents our there that have blogs about their kids so that people who pray for and support Leah, can also do the same for other families. Who knows? Maybe, you'll meet another baby like Leah in your same town and are able to help them too. Maybe treat them to a picnic or playdate with your kids, I don't know. Well...maybe that's not the best idea, but you know what I mean :) Or just go donate blood! :D

Anyway, I need to figure out a way to embed a photo gallery or something, adding photos to this blog is annoying. I might just add a Picasa album with all her pics,s o you can see how big she is now!
You can also see her most recent updates on her facebook page, May the Force be with the Princess Leah: http://www.facebook.com/pages/May-the-Force-be-with-the-Princess-LEAH/166607313399901

Peace!
Frani

2011-12-01T14:31:00.001-08:00

CURVE BALLS

Hello everyone. I know we are once again late at posting. We've gotten many, many, many emails and pm's from all of you around the world wanting to know how things are with our Baby Leah. I need to let you know that I wasn't intending to write on here today, but I know that many of you have heard via Facebook about all the things that recently happened to Leah. I'm not going to lie...it was really bad this time around. Maybe as bad as the first few months of Leah's life when all her muscles and shakes were causing such extreme movements that she could not sleep, eat, or even take a breath.

I ask that you please bare with me. It's not easy for me to write on here. In fact, Frani is the writer of most of these posts. I am not as good at dealing with the recent memories of these events, since it takes me a long time to heal from these. Nor will I pretend to be this eloquent writer. My heart and my mind sometimes do not work in unison. My mind pulls me to one side, while my heart pulls me to the other. Unfortunately, that is how people can sometimes become unraveled. I'm aware of that, I do my best here to keep you informed with out letting that happen.

For now, I'll share with you the latest curve ball...or should I say Curve Balls?

Once again, I am awakened by a flurry of alarms. Leah is hooked up to many machines that keep her alive and monitored. As I try to get up my back begins to crack furiously from laying next to her on the cold floor of the hospital. For a split second, I think I am in a dream or possibly the beginning of a nightmare.But, as I look around, I realize that indeed, I am not. Frani is sleeping on the sofa. Her mouth half opened, her eyes blocked by her arm in hopes of keeping the morning light out. The smell of alcohol and some of Leah's medication make it to my nose. More proof that this is not a dream. Still groggy, I turn. And in-between all her machines, I see a short doctor, young looking and dressed in all his best preppy attire with glasses (who's name I do not want to mention...yet) who then turns to me and says" Gee, what kinda candy did ya guys give her this Halloween?" Still groggy, it takes me a few seconds to digest his words. I think to myself, I could pop him one here, right now, but what is that going to solve? Still my anger at his stupid comment makes me boil. "Well, maybe if you guys would have moved faster to get the approval of the spot MRI this would not have happened." --My patience is thin. He ignores me, chats with the nurse and leaves the room.
It always amazes me how disconnected some doctors, and brilliant ones I might add, have NO bedside manners. I know they have to be like that, but wouldn't the challenge be to find the perfect Yin and Yang of it all? This is not to say that we do not have our Angels within her team of doctors, but all it takes is one to ruin it and add to the already painful issues you have been enduring with your baby.

To MRI or not to MRI, that shouldn't have been the question!

For few hours I have been writing to two or Leah's team of doctors. One tells me take her to the hospital, another tells me that some of her movements are caused by her "Mystery Illness" diagnoses and that we should wait a bit and see how it goes. Betty, our day Nurse is worried. Very worried. I assure her that I have been in contact with Leah's doctors and this is what they are telling me. Plus, we have already learned that hospital visits are not always the best due to the infestation of viruses and sicknesses that permeate throughout. We've been to the ER so many times, I have quit counting. Each time, they send us home and tell us, "these are not seizures (again), this is the way she looks and acts because of her neurological condition." Nurses in the ER panic when they see us come in, they "look" like seizures so they respond to them as such. This time it was different.
Throughout the day Leah began shaking furiously.We began to think it was a cold coming on or fever that was making her shake. Frani holds her for many hours. Betty is still concerned. The look of worry in her face is still there. We give Leah some meds to help with the shaking and also give her a fever reducer. She continues to shake. We decide (based on the instructions of our doctors) to wait a bit before taking off to the ER in hopes that all we were doing would help her. Although we dread going to the ER, we know that if we have to go...WE GO!
Frani and I decide to take the time to build Leah's new "big girl" bed in the meantime. We found that we could take care of her better that way and we could snuggle her and love her more, rather than being inside a crib and just caressing her.
Within a flash, Frani (she's the Macgyver....and I the Martha Stewart) builds the bed. We both occasionally poke our heads out of the room to keep up with Leah's situation. By this time, we are both extremely worried....extremely.
Leah hasn't stopped shaking. Again, these are not her typical shakes....they increase....I begin to start thinking that maybe we need to get the hell out of here and to the ER. Although I dread going again, I know it has to be done.I email and call the doctors to let them know that we are on our way to UCLA's Hospital ER. I've done enough waiting....watching...I'm done.
We would call for an ambulance, but they'd take her to Cedars which is only a few minutes away. That would be a mistake since Cedars (in my opinion) isn't suited for issues like the ones Leah has, and like the last time she would need to be transferred to UCLA eventually. A feat that our wonderful Health Care System makes a virtual impossibility.
I pack the car like an ambulance. I always have a oxygen tank ready to go in the car, but I have to bring the Ventilator, the suction machine, the ambu bag (in case I have to hand bag her to help her breath), and a whole mess of other things before we take off. Meanwhile, Frani is prepping us to leave and getting the baby's meds in order among other things. She keeps calm. I'm on Emergency mode. Betty, my poor Betty
is holding my baby..."her" baby in her arms while mommy and daddy are making sure we have everything.
Betty talks to Leah throughout. In-between things Frani and I give her a quick squeeze and tell Leah we love her. "Hang in there Leah!"
Betty decides she wants to ride with Frani. She didn't have to do that. Once the baby is on it's way to the hospital, and leaves the house, the nurse does not have that responsibility anymore. She's done. But NOT Betty. This 5 ft nurse knows her stuff and there is no denying her love for Leah. Betty gives me her keys and tells me that she'll ride in the back with Leah keeping her going ,while Frani drives quickly to the hospital. Everything is ready and we take off.

SPEED RACER

My heart is beating furiously. My anxiety to match. Still, I find somehow to be distracted by my prayers on route to the hospital. We are 20 minutes away or so, depending on the traffic. I have Frani on the phones speaker. "How is she doing?" I ask. "Still shaking....a lot." Frani has always been honest about things when it comes to Leah. She hides nothing from me and I do the same. Her voice tells me she is worried but it also tells me she's in Emergency mode. We are cautious, careful, and above else making sure that Leah gets to the hospital safely.
Frani punches it. I try to catch up in Betty's car. Damn it. A few a-holes cut in front of me. I maneuver out of their way. I can still see Frani ahead in our SUV. This time I thank God for those that gave us this SUV. It runs! It better than runs, it is perfect for this. All we need is a siren and lights.
It occurs to me that I should be getting in contact with UCLA's ER. Luckily, I have voice command on my phone, and I am able to contact them.
"Hello? This is UCLA Emergency Room"
"Yes, I have an 8 month old child with an un-diagnosed movement disorder on her way. She is having some issues and de-satting (meaning, her saturation was going down...not good). She is shaking furiously, but under some medication. Please be ready for her. We should be arriving...." I am interrupted...
"You what? Who is this? Are you an ambulance?"
"No, I am not, an ambulance, we are taking her in a gray SUV..." He interrupts again
"You are in a car, who are you, how would you know she is de-satting,?"
I'm getting angry " Please listen to me carefully, I am the babies father, the baby is shaking uncontrollably and is de-satting"
The voice on the other end says "How would you know that she is de-satting?"
"Because she has a pulse sox connected to her at all times and because I know my baby better than anyone...now please don't give me any crap and have your people be ready for her". I am exhausted already by the conversation.
"Okay, okay, calm down...just pull up at the back we'll have someone ready and waiting for you."
Frani and I keep communicating carefully. Finally, we have reached the UCLA area and head to the back where the ambulances dock. We are greeted by two male assistants. They quickly help us unload Leah and rush her to her ER room while Frani is giving them all her information. I park Betty's car and run in.
Some of the nurses are familiar with "Princess Leah". She's become a little celebrity there. Around the corner I can hear " Oh look, it's Princess Leah!" "Leah's back"and so on.
Quickly an assessment is made by a resident doctor. All the nurses are hovering around Leah connecting devices, unhooking ours, and making "it" happen.
I turn to Leah and kiss her soft face. She looks like she is somewhere else. I worry even more. "Leah, baby, it's daddy...I love you" Frani kissed and caresses Leah as well while giving all the nurses a run down on what Leah has gone through both at the hospital and at home. Despite Leah's notoriety at the hospital. Some still don't know her well enough to understand how to take care of her.
After more than a few seconds of chat with Doctors and Nurses, Leah's movements begin to get worse....much worse. Frani and I get extremely worried now. We have never seen these movements before. The nurses are curious as to what these movements mean or are they just part of Leah's disorder?
No, these are not. Frani and I both agree this is way different. I try to keep my cool and so does Frani.
The Pediatric Resident comes in to see us. We give him our report of things. He looks at the baby and then walks out. My thoughts were "Where the F is he going?"
The Respiratory specialists know Leah. Although happy to see her, they are not happy with the circumstances. They quickly attach whatever they need and move on.
More nurses come in. Most of them I know from the many visits to the ER. Concern is on their faces. It worries me more. I turn and look away for a moment, trying to locate where the hell that other doctor was. Ah, there he is. He is on the phone. I rush over to him.
"Things are changing...you got to believe me....I know my daughter and this is NOT they way she moves...I think this time these are real seizures."
"I'm on the line with the On Call neurologist" he politely shews me away. I run back to Leah's room.
By this time, it looks like she is ready to implode. Her shakes are rhythmic, her eyes occasionally are rolling back...then she is out...BAM! She is back in seconds with these rhythmic movements! This is not right.
Back and forth we go. Frani videos Leah's movements in desperation to show the world and Leah's doctors what is going on. We have been waiting now for almost 3 hours and Leah is not getting better. I dash again to the same doc and tell him he needs to help now or I'm going to blow up on more that just a few people on her. He tries to calm me down and tells me that the on-call neurologist said that we should wait "And stay the course" because Leah's disorder causes her to have these movements when she is ill. "NO! I'm want a spot EEG done like you said earlier we might need" This isn't normal for her.
While I am arguing, begging with this doctor. Frani has had it, a mother can only take so much! She reaches for the first Doctor she sees. The doctor is caught off guard. She pulls her into the room. "this is my baby! These are seizures right!?!" A calm and stern looking woman wearing a doctor's badge is trying not to show her concern, but I can read faces well, she is not happy about this. "Yes, they definitely look like seizures" she says. She orders them to prepare medications that will help Leah with her assumed seizures. The pharmacist that works at the ER is familiar with us. I nice man. He smiles and shakes my hand before leaving the room. to fetch Leah's meds.
By this time, 3 hours into it a spot EEG is finally ordered. Our new doctor friend and hero is making things happen the way they should have. The EEG tech rushes in the room. He looks at Leah and mentions something under his breath. I can tell he knows what is going on. He quickly attaches leads to the top of Leah's head. Then the moment the EEG monitor goes on. His face confirms what Frani and I have been fighting for. She is in Status. He rushes out of the room trying to get Dr. Lady Hero again. He is outside the room letting her know that this is indeed a seizure and the situation is not good. Leah begins to move even worse. The meds are not kicking in yet. Daddy's little trooper is fighting the fight. The worry on the EEG tech's face is still not good. I'm angry....very very very angry now. I could strangle the on-call neurologists neck at this point. I hope never to see her again. Frani and my thoughts were, HOW CAN YOU ASSESS a situation without seeing it? HOW??????? Are your thoughts based on assumptions. Or do you just want to sit at home; since it's a weekend ,and not get your ass to the hospital where you are needed desperately? I know that she had that opportunity but she apparently didn't take it. Isn't this what you went to school for? Yeah, life sucks when you have to get up off your ass to go in on your day off, but I'm not happy about being in the ER AGAIN for the gazillionth time either!!!
Peds comes in again. They are looking at Leah. Eventually Leah is admitted. They need to get control of the seizing. Hours have passed and the meds they have given her are taking their time to work. Hours again. And although somewhat subdued, they are still there. I panic. But I am quite about this. I know from my research these many months that Leah's brain could be damaged by seizures of this magnitude. I pray. I worry. I pray. Most of the time, I'm also praying for the doctors. Whether they're the "bad" ones or the angels we deal with more often. I pray that they find the knowledge they need and hopefully some love for our Princess.
Leah is taken to the Intensive Care Unit. Frani is in the room. Our old nurses from the last few months are there and most come to greet us with hugs. They know. They know how hard it is for us. They know how hard the world wants Leah to survive this and make it through. But, they keep quite. They've seen the reality of it all. I'll take their smiles.
By this time, the EEG tech is hovering around the out the doorway. I greet him. He apologizes to us. He could not believe that it took them that long to figure that it was seizure. "It wasn't you, I was angry at" I tell him. I appreciated him coming to check up on Leah. I hugged him. He began to give me how he got involved with this case. "I don't live that far away. I don't know why it took them this long to get me here."

ADMITTED
So here we are again. I go to hug Frani and tell her I love her more than ever. We also know the reality of what happened and has been happening. Leah has survived and fought for many months. They told us she wouldn't make it past a few weeks or months. Every month we celebrate her birthday. We won't give up on her because she isn't giving up...and even if there was a little hiccup with her strength, we would push her and love her to keep fighting.

...this concludes part 1. I have to get back to my little hero Leah.

Second part coming soon and some pics too.

Part 2.

Another Holiday in the Hospital, Big Brother comes to visit, and where are things now.

MUCH LOVE AND PEACE TO ALL OF YOU! Thanks for caring and reading Leah's blog.
Please spread the word about her and increase the prayers, thoughts and meditations!

Thanks for all the donations, prayers, gifts and thinking of us!
Daddy

2011-11-17T12:21:00.001-08:00

Daddy's turn:

Leah today is doing better. Not great. But, a little better. She is still in the ICU at this moment. Her seizures were coming and going. Man, it felt like such a rollercoaster ride...again. And thanks to Dr. Rao for holding my hand through it all. She would describe every thing to me so that I wouldn't freak out. Yes, Daddy freaks out. Mommy is the calm one. I'm the AHHHHHHHH what the HELL is going ON?!?!?!?!?! You know that stuff called testosterone. It happens to spike up every once in a while. Hey! She's my little girl! I'm gonna act that way. Dr. Rao today was explaining to me that some of the movements that NOW look like seizures are not seizures. They are a condition called facial myokymia. It has something to do with her Potassium levels, like when your eye twitches. But, it's her whole face.They will also be giving Leah a drug they gave her once before. Each vile of this drug is $20,000.00 or so. This time it's being given for another reason.

It's frustrating for me because I can't hold her in my arms. I'm so use to holding her around the house. Or just rocking her to sleep after we do some therapy. She is still connected to several machines but at least I get to hold her. In the ICU she's a bit fragile and I have to wait on that. Meanwhile, I caress her, and tell her that mommy and daddy can't wait to take her home. We had just redecorated her room too. We went to IKEA to buy her a "big girl" bed. We know she's to young for it, but we felt it gave us a place to crawl into bed with her. That's the way it was before it all started happening. She'd snuggle into my armpit. Yep, my armpit...and yes, I would make sure it was clean...in fact I'd shave it for her! LOL She never wanted any other area. She just loved snuggling into that area. I'd curl my arms around her. Back then she'd have her little hiccup sound and I knew she was sleeping once that would stop. They thought it was tracheal malacia and that was the reason for that sound. People would always ask, "Oh she sounds so cute with those little hiccups" after a while I stopped telling people what it really was. Later it was found that it wasn't that but something called Laryngeal malacia.

Today Leah is 9 months old.She was doing so well at the house. She was learning to keep her head up. She was reaching for things, and it was so interesting to see her developing her own little personality. But the truth right now is, I feel bad for her. I know she's young and she'll probably not remember a thing of all this. But still, it bothers me. It's just hard when you look at her. I know I'm a proud daddy but come on--She's adorable...and a kick ass fighter all rolled into one!

As you can see Frani and I have been going through quite a lot these past two weeks. I think Frani's last two posts speak volumes about how we both feel and all that we are going through with our baby Leah. Situations like these make you grow up a lot faster...no matter how old you are. Things that meant a lot to us a few years ago don't anymore. It's never been about what we have, or how many lightsabers (LOL) we own, or how "famous" we are in our own circles of nerds...it's about the family we've made.In the interim I have found who my true friends were. The thousands of people from all over the world that, for some reason have connected incredibly with our Leah's story. We are flooded with hundreds of letters, emails and pm's from people in places I didn't even know existed. They each tell me why they feel so close to us or Leah. It also amazes me how these people have gone to bat for our Leah. I got an email from a housewife who asked me if she could have a bake sale for Leah at her church, or another wonderful woman that was making beenies to raise funds. They tell me "I don't have much but I wanted to do my part for Leah". All I can say is Wow,and thank you for that. The fact that they even think of things and try to do anything for us just amazes me.For us it's not about that, but I'd be lying to you if I didn't tell you it helped.We're reaching around 2.5 million in debt and our two month electric bill was over $600...with the discount! In the end God works it out for us. I'm not going to drown in that right now when my head has to be here with Leah.
I tell people that they don't have to donate necessarily, we'll take their hopes, prayers and wishes. And the bottom line is, I know they don't really have to do any of that...but they do and for that we love you.

Everyday I thank God that she is in my life. EVERYDAY. I wish YOU could meet Leah. You would see her strength. She really is a trooper. The nurses in the ICU love Leah too. They all take peeks in the room to see how she is doing. Even some of the ER docs have stopped by to see her.A few now follow this blog,

Frani and I really feel blessed to have the support we have been getting from all the international costuming clubs. All over the world my sisters and brothers from all clubs banding to join us in our fight to find a cure.And I have to mention all the blogs and podcasts that have shared her story too.
I remember talking to a media person who said eventually things would die down a bit....well, they haven't. Charity auctions are happening and continue to happen the word continues to get out all over the world. Honestly, we never thought it would keep going the way it has. This is getting to be huge. Still, the one thing we need the most we don't have....ANSWERS. In the meanwhile, we all stay by her side hoping that we can find answers and an eventual cure for her. I thank ALL OF YOU for that.

Something just as amazing is that what may have started as support for Leah among the clubs has now filtered in to people outside the clubs and groups. People everywhere from all walks of life and religions are coming together for her as well. I can't tell you how many people have other people praying for Leah at their Church, Temples, Synagogues,Mosques, Groups! Apparently, the FORCE is really strong in Leah.

As far as "normal" life....well, we are trying. This amazing mentor of mine (who is also in the industry) was kind enough to give me a pep talk (and at that point, I needed it). He's got a lot of experience dealing with Hollywood so I tried my best to digest all his advice. Eventually he ended up helping me out with some amazing equipment. It was unexpected. That way I could stay with Leah and also work from the house.I hope I don't let him down. Aside from doing this for me, he and his wife really are amazing people. And truthfully I feel empowered that I can now continue to be with Leah while working from home.

Frani is doing well as she climbs up the latter at work. I am so happy they love her there. It's always a fantastic feeling when you can't wait to get to work because you love it and the people you work with are awesome.Still, it's so hard for her to be there when we are stuck again in the I.C.U. .

We are sooooo wanting to get back home. I hate being here. I love the people, and we've made friends with Dr.'s and nurses in the ICU, but it can be depressing when you hear your neighbor has passed. When you hear the parents crying especially when you have made friends with them. You can't help but feel for them. We've lost around 3 that we know of. But all you can do is just give them a hug.

There is this baby, that is right next door. My heart goes out to him. For a week or so, I didn't see any one in there other than a nurse. I don't understand how anyone can just dump a child in the ICU and not see them for that long. I know people have jobs but I would see Leah no matter when I'd get out of work. Even if it were for 5 minutes. Seeing that baby squirm and cry out breaks my heart. Frani and I tried to sneak in to give him a little love but we were kicked out. It's hard not to get attached to your neighbors here. The little boy on the right of us is waiting for his liver transplant. He's a great kid. His ICU room is incredibly decorated. He's here for the long stay or at least until he get's his liver. I've learned so much from these kids. I cannot tell you how they have touched me. Some are wise beyond their years. Frani and I try to do our share when we can. She'll draw and I'll do impressions of some of their favorite characters. Elmo seems to be a big hit. By the end of the day I can't remember what my real voice is like. The smiles just melt me and I think I've developed a very soft heart being here since I have to hide the tears away. Everyone love Frani's drawings. Frani is an animator. Actually we both graduated recently as animators but she is truly talented. She can just look at something and match it! That's really what life is about isn't it? It's about making these kids, your kids, our kids, our kids kids, smile and enjoy life. It's not about YOU anymore, it's about them.

So since I'm a DAD, I guess I'm going to target the "tough" dads in this post...the ones that haven't figured out how to say the "L" word. So here it goes... for those dads that have a problem saying "I love you to your kids" Show them you are the real man you think you are and turn to them tonight and say "I LOVE YOU". It's a beautiful thing to see your kids eyes light up with joy.

And to our extended family out there I LOVE YOU TOO!

----------------------------------------------------
Some of our friends are having this amazing auction on eBay!
Just to let you know....
Here is the info

On Black Friday, November 25, 2011 the “Fan Days 2011” autographed Star Wars Clone

Helmets will be put up for auction on ebay at 5 p.m. Pacific Time. Each helmet is signed by

by over 45 stars within the Star Wars Universe! Actors, writers, artists! This is a collectors

dream!

The auctions will be

listed under the seller name JaingSMandoMercsPO

and will run for 10 days. All proceeds from the

auctions will benefit “Princess Leah” and her family.

Meditation and finding myself again

2011-11-12T16:22:00.000-08:00

My last post I'm sure scared some people, since I'm usually not so sad or sound so angry as I did. To be honest, I had been feeling like that since we came back to the PICU on Sunday, I don't know why it happened, I'm usually much more optimistic and calm. But when I saw my beautiful baby in the state she was in, it was heartbreaking and I couldn't stay as strong as I usually do.

I poured my feelings into that post at 4 am, when I had been awake all night, but I'd like to let you all know what happened after that, since I had a pretty big shift in perspective a few hours later.

I decided that I couldn't stand being in the room anymore and decided to take a walk to the store to get some fresh air. I left the room at around 5:30 am and it was still dark out, the cold air of the morning was a welcome change from the stale stuffy air conditioned air in the hospital. I walked to the CVS pharmacy, a couple blocks away and bought a bottle of water and some gum, and browsed through the store, not really looking for anything else in particular. As I made my way back to the hospital, I noticed that it was beginning to get lighter, as the sky changed from night to day. I start work at 10 am usually, so I'm not one of those people who ever sees the sunrise, but just walking and watching to sky get brighter with light of a new day gave me hope again. I felt like I was witnessing something amazing and beautiful as well as symbolic. I felt like all the worries, stress and dark feelings I had had for the past day were being erased, and a new day meant the light, brightness and illumination that I had desperately needed, was finally coming out. I sat on the step of one of the hospital buildings and just absorbed everything. There were no people or cars, just the light of a new day and sounds of nature all around me. I walked back into the hospital building, but instead of walking towards the elevators that would take me to the PICU, I walked to the meditation room at the entrance to the hospital, a place I had passed several times, but never bothered to go into. I went in, and there was one other person already there, who left a couple minutes after I came in. The meditation room is interesting, it's not a chapel, but a non denominational room with a big blue dot at the front where they usually hold services like mass on sunday and shabbat on Friday. I decided sitting on the floor would be more comfortable since I could sit cross legged to meditate as I learned in yoga. I closed my eyes and began to meditate. I learned how to meditate from Zev, when I was in labor with Leah; since I wanted to do everything natural and not take pain killers, meditation was the one thing that helped me through the pain of labor. I started taking deep breaths and imagining with each breath that I was inhaling all of that light,a ll the brightness of the new day outside, I was breathing it all in. And when I exhaled I imagined I was breathing out all the dark, sad feeling I had had just a few hours ago. I don't know for how long I did this, but after a while, I could only hear the steady rhythm of my breathing and bit by bit I could hear the blood and my heartbeat rushing in my ears. I had no thoughts in my head, and I realized just how loud my thoughts usually are, when I heard the blood in my ears. When you concentrate enough and quiet your mind, that sound of your heartbeat is actually very loud, but I could never hear it because, I assume, my thoughts are louder.
After a while I opened my eyes and just stared at the floor, and I don't know if this happens to you, but when i look at something long enough, it sometimes begin to look like something familiar. I was staring at the carpet, and it had these things that looked like little worms in a row. The longer I looked, the more it looked like that, and I suddenly was reminded of a book that I hadn't read in years, since I was a child, maybe 10-15 years ago. The book was called "Hope for the Flowers" by Trina Paulus. I remember my mom bought me a copy of the book and I loved it because of the drawings and it was a very nice story, very simple but very deep.

If you haven't read it, it's about 2 caterpillars called Stripe and Yellow and they live life as caterpillars but get bored and decide to try and find something else to do, until they find this pillar that is made of many caterpillars, all trying to climb to the top of the pillar (this is what the spot on the carpet reminded me of). They even see other caterpillars fighting and stepping on each other to get to the top; and even some who fall to their death from so high up on the pillar. Yellow decided to not climb the pillar and Stripe goes back to climb it but finds out when he gets closer to the top that it seems like there really isn't anything at the top, but the others keep climbing and don't say anything so that they don't fall. Meanwhile, Yellow finds a cocoon and another caterpillar who tells her that she can become a butterfly and fly wherever she wants. She tries to find Stripe once she's a butterfly and finds him on the pillar but can't talk to him, he finally climbs down the pillar once he realizes there is nothing at the top and tries to find his love, Yellow. He finds her as a butterfly and she shows him how to make a cocoon and he eventually turns into a butterfly as well, and they live happily ever after.

I never truly understood the meaning of the story until that moment in the meditation room. As I recalled the story in my mind, I started to see the symbolism with everything that's happening with Leah and our lives. And after I realized that, I discovered other truths about myself and this whole situation as well. I had been so focused on myself and how I felt that I couldn't see past this moment. I realized that the pillar represents all of us, trying so hard to achieve something that in the end is not important. We think things like our careers and having a certain car are what we need to strive for and we don't realize that the caterpillars who love us, like Yellow are really what matters most. I realized that this whole time I kept thinking why me? and why does this happen to us? we're good people, why should such a bad thing happen to us; but in reality it's not happening to me, it's happening to Leah, this whole ordeal is part of HER life, it's what will shape her future, and what will make HER stronger and what will carve out HER personality forever. Everyone has difficult things they struggle with in their childhood, or teens, but this is what is what she is struggling with now, and it will be with her for the rest of her life. Whether she recovers from all this or not, it's always going to be a part of her. I imaged that maybe everything that's happening to her now is like that cocoon stage, the dark part, the uncertain part of her story, but this is what she has to go through to become the butterfly that's inside of her. This is what we all have to go through to discover our inner butterflies. Maybe I should stop focusing all me energy on the struggling part of it, the attempting to climb this impossible pillar, and just accept that I need to be in this cocoon for a while, and after some time, the butterfly will emerge, the happy times will come. In a way, if our lives were a book or a movie, this chapter is still in the middle, still in the juicy, nail-biting part where you don't know how it's going to end. But, eventually, I know there'll be a happy ending, there has to be; there always is, one way or another.

I know, some of this stuff is pretty deep, right? I never thought meditating could do this for me. It was like my mind was on another plane, I even began thinking about life and god and it was a great experience for me. I thought about how the universe is so old and in the grand scheme of things, we are so infinitely small compared to the expanse of the galaxy and the universe. This period of time is like a blink of the eye in comparison to how long the universe has been around and will probably continue to be around. Our time on this planet is extremely short and these hardships are even shorter. I need to appreciate the time I have with my daughter, my husband, my family. I'm in awe at the fact that my baby is almost 9 months old (even shorter time than a blink of an eye!) and she's changed thousands of people's lives, all around the world, with her story of courage and strength. And even though I seem strong, it doesn't come from within me, I know I draw my strength from her. She's taught me so much, I shouldn't complain about my frustrations. I could never truly appreciate her as I do now, if none of this had happened. She really is my hero, and I'm thankful to be her mother.

I want to thank you all for leaving such touching and uplifting comments as well. I know now that I can't lose hope, and I have to continue to fight for my daughter, my hero.

For now, we continue to wait in the PICU. Leah is being weaned off her induced coma, and will hopefully be waking up soon. They plan on doing another MRI to make sure there is no damage from the seizures in her brain. She's on antibiotics again since one of her IVs got infiltrated and created a blister which has turned into an open wound on her foot, and seems a little infected. We are going to make sure we keep on eye on it, that it doesn't get worse. They also mentioned that we might want to start looking into seeing other doctors at other hospitals like Children's Hospital Philadelphia, since we aren't making any further progress on her condition here at UCLA. Not that they haven't tried, we know they have, but it's time to look beyond this group of doctors for answers.

I love my husband so much. Last night it was my birthday (11/11/11, you can guess what my wish was), and Zev took me out to dinner in Westwood with a few close friends who I hadn't seen in a while, and made me laugh and we had a great time. Then today, he got me a spa day at the W, also in Westwood with a full 1 hr massage, manicure, pedicure and facial. He really outdid himself, and I felt amazing after I got back.

We'll try and post again tomorrow, since there may be more updates then, but until then, keep praying and sending us your positive energy through the force.

Peace

Frani

Seizures and Meningitis

2011-11-09T04:11:00.000-08:00

Hi everyone,

So, we're back in the PICU....

On Sunday morning Leah woke up with fast fine tremors all throughout her body, she was shaking so much, we thought maybe she was getting a bit sick. We had taken her to the ER the Thursday before for similar movements, and they did an infectious workup to see if maybe she had an infection of some sort. At the ER, they had told us that it could be that she was getting a bug and the movements were a reaction to it.

Anyway on Sunday, she needed to be on the vent all day since whenever we would take her off it for even a couple minutes, she'd desat down to 20% and turn blue on us. We had to hold her so she wouldn't shake so much, and hold the vent tubing in place so it wouldn't come off. After hours of her at home shaking uncontrollably, and several emails and phone calls with our pediatrician and the neurologist on call, we decided to take her to the ER after she spiked a fever of 101.1

At the ER, everything was very chaotic as usual. The doctors there weren't familiar with her so they were talking with the peds neurology on call doctors who had seen her on Thursday. About an hour into the ER visit, Leah's movements changed. They became more repetitive and she was not really as responsive. It looked like ticks that just kept going, and then she would go limp for a while, her eyes would cross, her legs would stiffen and suddenly she'd jump and go back to the repetitive movements. This scared us as it looks so different from what she was doing before and we told the doctors we wanted an EEG because it looked like she was having seizures. They looked at her and called the neurologists again, then an hour later told us that the neurologits had said they would stay the course and just do the work up to see if there were any signs of infection and to not do the EEG. At this point, I was really upset, it was obvious to everyone that she was seizing and I wanted to get an EEG to confirm it, so they could stop it. I asked who made the decision and they told me that the on-call doctors that they had spoken to did, and they didn't think it was necessary, since she'd had normal EEGs in the past, and she has a movement disorder. They also said that it was difficult to get an EEG tech onsite since it was the weekend. I firmly explained that I thought it was completely illogical and irresponsible to make a decision like that over the phone without even seeing her! And the whole weekend thing was ridiculous, just because it's the weekend, EEGs don't get done?! I had to say the same thing to 2 other doctors who came in, until finally another hour later, they told me that they would be doing the spot EEG (which means they would monitor her for 1-2 hours as opposed to 24 hrs). The attending doctor of the Emergency department, came in and saw her and thanks to her is that things started happening. She took one look at Leah and knew she was seizing and started ordering meds to stop the seizure. One of the doctors mentioned that an EEG was going to be done, so they should wait, and she shut them up with "I don't care about the EEG, we need to stop this!". Leah got small incremental doses of Versed, which didn't seem like they did much. About 30 minutes later, the EEG was being put on her, and as soon as the tech finished setting it up, he took one look at the monitor and said "oh, um yeah she's in status, she's definitely seizing" He then walked out quickly to get as many doctors to see the monitor and try and stop it.

She was quickly moved up to the PICU, since she was so dependent on the ventilator to breathe, and the intensive care units are the only places in the hospital where they have vents. There she was given a slew of other drugs until the seizures finally stopped with doses of Pentobarbitol.

She's now been put in a drug-induced coma to keep the seizures from happening. She got a CT scan on Monday morning which revealed that there was no swelling or bleeding. She then got a lumbar puncture again so that they could test her spinal fluid for infection. The results came back and they found a high white blood cell count in her spinal fluid which means she has an infection in her brain which was most likely causing the seizures. She has meningitis, however, we still don't know what kind, if it's bacterial or viral. We should know by the end of the week possibly. Viral meningitis is much less dangerous, and the infectious disease doctors believe that it will be viral; just because of the severity of the symptoms would be so much worse if it was bacterial. One of the scary things about bacterial meningitis is that she could lose her hearing. But, we still don't know and most people fully recover if it's viral.

For now, she's been knocked out and they have slowly taped the pentobarb off, so that we can see some brain activity but she's not completely awake. Before, when it was fully loaded, there was no brain activity.

Because of the coma, her bladder was too relaxed to function, so she was retaining a lot of fluid. They placed a foley catheter in her yesterday and she is peeing now, but she is still really really bloated. They are giving her some diuretics so that she gets rid of the extra fluid as well as albumin so that the extra fluid gets absorbed back into her bloodstream. She is still so puffy, she looks like she's been in a boxing match. I'll have to post pics later.

One of her IVs also get infiltrated, meaning the fluid going thru it, get under her skin and not in her vein, so she got a big blister that popped and is an open wound. It looks pretty bad, but I'm staying on top of them to make sure it's getting taken care of.

I can't really sleep tonight, I've just stayed up writing and doing work that I was behind on. I'm usually able to deal with things much better, but for some reason, this time I've been feeling really down. I think it's just nerve-wracking to still not know and get hit by a curveball like this. I think it was just so out of nowhere, and to see her so out of it, and bloated and in a coma is so incredibly hard. I feel angry that this is happening, why does this happen? I can deal with the fact that she has disabilities, I can deal with knowing that she will probably always be behind other kids her age; but it's the constant fear that something like this will hit that has my nerves shot. And I try to stay positive, but I just hate the situation we're in. I mean, I know that Leah has changed so many lives and brought so many people together for a cause, but why did it have to be my child? Can't the universe use some other kid as an example of what great things people can achieve? I don't want to sound ungrateful to everyone who has helped us and supported us, though. You guys keep us going, but she's so beautiful, it hurts to see her so weak. I keep waiting for this nightmare to end, but it's real, nothing will ever be the same. But, at least we still have her here with us, and I know there are so many families who can't say the same, so I consider myself lucky. And that's what gets me through this, that and seeing her fight for her life everyday.

Well, I'll keep you all posted on here as much as I can.

Good night...or good morning I guess

Peace,

Frani

8 months old already!! + Genetic Test Results

2011-10-20T23:21:00.001-07:00

Hi all,

I know it's been a while, things have been very busy lately, as always.

Leah turned 8 months this past Monday, and we can't believe she is getting so big! She's at 14 pounds now, and continues to grow out of her clothes very fast. She's been doing a lot of great stuff like trying to get on her knees, while she tries hard to lift her head, when she's doing tummy time. She has been keeping her head up when she's on her tummy, though she still lacks some control, and has some of the spastic movements, but compared to how she was doing 2-3 months ago, she's improved a lot. She's also starting to turn onto her tummy, and and from her side to her back, which is also really great.

We took her back to Dr. Bill's office last week to pick up her custom made glasses, but they didn't quite fit properly so we're taking her back next week after they've modified them and fir them again. Hopefully they will fit better this time and she can start to see better as well.

She's continuing to receive her vision therapy twice a week as well, which we think is helping.

She has been a bit sick, we think she may have another bug of some sort or possibly an infection again. We took her to the doctor yesterday and they took some blood and trach samples to culture and see what she has. We're hoping it's something that can be treated with a respiratory antibiotic as opposed to the recent antibiotics that she;s gotten by mouth. Those always give her diarrhea and then she gets a rash, and it's just a vicious cycle. She hadn't really been sleeping well since Sunday night until Wednesday and that is what prompted us to take her to see the doctor. Her sleep cycles were non existant and I think she slept a total of 4 or 5 hours in almost 4 days, so we tried giving her melatonin, which is a natural chemical your body makes to induce sleep. She's been on it for a couple days and it seems like it is helping. On top of everything, she's also teething like crazy. She hasn't gotten any teeth yet, but it seems like she's very close, and I think she has some bottom teeth that are starting to come in.

We also will be sending her medical records to some other doctors that our pediatrician has recommended. The neurologist at CHLA is one of them, but he has no appointments until March of 2012!! So, we're on the cancellation list also. We got the results back from the genetic test that they did of her whole DNA sequencing. They did not find anything remarkable that could give them an idea of what she has. They did find about 400 mutations which is normal for anyone, since we all have different genes. But, they compared all the genetic markers for basically all the disorders that they thought it could be and the ones that match her symtoms, and none of them matched hers. So, we're back to square one, as far as knowing what the hell is going on. We're determined to find answers, even if that means we need to change our team of doctors at UCLA and find other hospitals or groups who can help. However, with our insurance plan it's a bit difficult to say if we'll be covered if we do that, so I'm looking into what other plans my job offers and weighing in if we can get a better insurance plan.

Well, I just wanted to give a quick update, since I know it's been a while, but I'll post more soon, and I'll post pictures too, I promise! You can get more recent updates on Leah's Facebook page http://www.facebook.com/pages/May-the-Force-be-with-the-Princess-LEAH/166607313399901?ref=ts

Thank you to everyone who has helped us with donations as well as those who leave us comments and send us caring messages on our blog or FB page. Every little bit helps, and even if people don't donate anything, it's nice to know that you're all praying for our little princess and our family. Your prayers give us strength to keep going, thank you.

Peace

Frani

Leah's progress, Daddy becomes Mr. Mom, and Mommy juggles work and baby.

2011-10-13T09:15:00.000-07:00

Our 501st friends in Tazmania helping support Leah !
Leah gets fitting for her new glasses while daddy and mommy look on.
My son Nic meets his baby sister for the first time.
Leah on a recent outing with mommy and daddy. She's ready to go!

Leah doing some Physical Therapy!
A recent article in Star Wars insider.
These helmets were made by Nick Bishop of Tasmania and 501st Member. Steven Sansweet is one of many that are signing these helmets to be auctioned off for Leah's Charity event.
Nick Bishops Creations with all the signatures on them.

------------
Hello everyone. It's Leah's dad this time. We have so many things to add to the blog that I was tempted to just make a video of my own,but I hate being on camera and 2) I'm too lazy to set anything up. Yep, it's this thing called "tired".

I want to start off by letting all of you know how much we really appreciate your prayers and hopes. It's been a series of bumps along the way, and all of you have managed to keep up with us here and on Facebook (Leah's page is "MAY THE FORCE BE WITH PRINCES LEAH"). I try on FB to keep you all posted and we thank the 4,000 plus supporters as well. It means a lot to see your posts and all the wonderful things and advice you have to give. We are still so incredibly overwhelmed by the amount of support we have been getting from all of you. As I have said before, for us it's not just about raising funds but we DO appreciate all your prayers. We sometimes get emails from people saying they don't have anything to give and it makes us feel a little bad that they even think they need to give anything for us to appreciate their concern about Leah. So KEEP PRAYIN'!

I'll try to condense some of the news (but that doesn't always work for me LOL).

G-TUBES and "MICKEYS"

As you know already, Leah doesn't feed like most babies do. Because of her Trache and her movement disorder, Leah has to eat from a tube that goes directly to her stomach called a G Tube. It can be a little inconvenient when trying to get from one place to the next. She was put on continuos feeds. Leah also happens to have a stomach that is around 50% smaller than most babies. Recently we went to the Gastro Doc to get what they call a "Mickey" placed on her tummy. What this does it allows for you to close the G Tube area up sort of like a cap on a bottle. It allows for more mobility. She was later placed on Bollus feeds in order to help expand her tummy to normal size. In all honesty, it's still very hard for me to see a hole in my daughter that doesn't belong there. Actually two holes because of the Trachea she has on her throat. I try not to pay too much attention to that, but it does hit me hard sometimes. The placement of the "mickey" went fine. We like that she has one less tube we have to worry about. She still needs to be connected to a tube but now when we want to disconnect from as many machines as we can to play with her its a lot easier.She continuos to be on Formula (quite expensive). And we are seeing her gain weight (which is a good thing too, since she was really skinny and in need of more nutrition as well). She is close to weighing 14.4 pounds!

NURSES: The Good The Bad The Ugly!
Well, it seems that after a series of bad situations and incompetence with nurses, we have finally found a group that seems to be working well with Leah. We got Betty back. And apparently Nurse Betty has a lot of fans too. We got a few emails from some of you talking about how you loved Betty and hoped to see more of her in our "Day-in-The Life Videos". We were a little sad when Betty had to go and find another job due to the fact we were "stuck" in the I.C.U. again waiting for the Medical Rental company to find 1) A Ventilator and 2) a trainer. As we stated we had to wait for them to get their act together before we could be released from the I.C.U.. But, she's back and we're happy to have her as part of the family again. We also found Jane. She takes the days Betty doesn't work. She's a wonderful lady who's heart is always in the right place. She's currently trying to adopt a special needs child who is waiting for a liver transplant! For now, we have her as part of the team. Then, we have Tom the night nurse. I can tell you, we feel safer with Tom here at night. Tom is a Vietnam Vet with 8 children! He's was a single parent for many years and knows who to care for our daughter. He also has a lot of great advice for us regarding children. Then we have Jen who is a back up and is really amazing too. She's also been an I.C.U. nurse in the past! So our prayers were answered and the nursing team seems to be a strong one. No more crazy nurses.

NEUROLOGISTS,OPTHAMOLOGISTS and OPTOMETRISTS

We had a recent visit with Dr. Rao Leah's Neurologist. She was so happy to see Leah, not to mention all the Team as well! They have become like family to us. And despite the fact that we STILL DO NOT KNOW what is it she has, I know that they have really tried their hardest. At least they found a drug that could help a Leah a bit with her movements.
Dr. Rao was seemingly very optimistic and was glad to see Leah in good spirits. She was explaining to us that Leah's condition (at this point) doesn't seem to be progressing. Which is a good thing. But, we still have to keep an eye out for her since Fevers and really any sickness can elevate Leah's neurological issues. I was happy to hear that at least things were at a stand still and not getting worse. This is not to say that she is cured or that she still doesn't have any problems.

We also visited the Optomologists and they were a little more cautious with us in their report. They noticed that her eyes didn't seem to be getting better, BUT they were not getting worse and they could not give us a prognosis since it is still very hard to tell what Leah can or can't really see. Remember, Leah had cataract surgery a few months ago. So she has Aphakia. A lot of things are based on how Leah responds and sometimes that can be a little hard to tell. Despite being careful they said they were glad that things didn't seem to be progressing for the worse with Leah's eyesight.
In the past, I have volunteered for a school for the blind in Texas and I really got to see how blind kids can "see". They manage very well actually. I still want to try and make sure that we exhaust all efforts in trying to find Leah a way to see again instead of just a blur of color and light.

DR. BILL TAKESHITA

We went to go see Doctor Bill Takeshita. Dr. Bill, as he is called, is a great guy. He lost his sight some years ago and continuos to practice with the aid of another Doctor. He has developed ways and techniques for the partially sighted to get back as much of their sight they can. He has high hopes for Leah and was gracious enough to give us some good pointers not only about Leah but about life in general. His wisdom was appreciated. He also understood all the hurdles we've been having to jump just trying to get the help we need for Leah. He was so nice and placed Leah under his own foundation so that we could get free help for her eye care. He even designed a NEW pair of glasses for Leah that will supposedly help her a bit better with her sight issues. His staff was nice enough to put us in contact with other foundations and thanks to them we were able to schedule a visit from a Foundation that helps provide Sight Therapy for children like Leah!

PHYSICAL THERAPIST AND OCCUPATIONAL THERAPISTS

We were finally able to start getting some help with Physical and Occupational therapy in the home. They also had high hopes for Leah. Basically they figured Leah developmentally (physically) was around 3 months. She still has issues holding her own head up at almost 8 months. At this point we don't know if she has some kind of vertigo that happens when she hods her head up. They both explained that this was probably due to the fact that she was stuck in a bed for so long at the hospital. I completely agreed with them. Now with her "mickey" in place she is able to disconnect for a few minutes of therapy. I love being a part of her therapy. It's amazing to see her really try her little heart out. Even when she's been sick she tries. Daddy and Mommy believe in YOU LEAH! We really think that all the therapy that she will be getting will eventually help her get to where she needs to be.

OTHER DOCTORS

Other Neurology doctors are being brought in to help with Leah's "Mystery Illness". Our Pediatricians and Neurologists are always open to hear what other doctors think. There is a very very very long list of diseases and illnesses that we've already tested for (most were fatal), and re-tested. We will be seeing a Doctor at Children's Hospital in L.A.. He is a pediatric neurologist. We hope he'll have good news for us. Honestly, it can be very scary for us as parents. The reason I say that is that every time a new disease/illness comes into the picture (meaning they think it's this or that), Frani and I panic. It can be excruciating as you wait to hear about the results. I've lost many many nights of sleep this way. And despite the results being negative with all those tests, we can't seem to predict the future for Leah. There really is no telling how many twists and turns will happen in the future so we just try and take it one day at a time and thank God we have her with us today.

HELP From AROUND THE WORLD

We cannot tell you the impact the Global Coverage has given our cause. What started (and is STILL GOING) with the Star Wars community of fans has over flowed to the entire world. We get so many amazing comments and emails via this blog, emails and facebook. Truthfully, when I am feeling a little worn and out of energy I read these and it pumps me back up. Strangers have become friends. I think Leah has an invite to just about every nation on this planet! (Well, maybe not every one but it sure feels that way). I have also been loving how respectful people are on her support page on Facebook. We get prayers from Catholics/Christians of all denominations, Muslims, Jews, Hindu's, Wiccans...you name it and she has someone praying for her. And WE THANK YOU FOR THAT! What a beautiful thing that is.

THE PRINCESS LEAH'S ANGELS GROUP TO THE RESCUE

Another group of people are aggressively trying to help us as well. They are a group founded by a wonderful Brazilian woman named Mary Farah. Mary managed to get people to join her PRINCESS LEAH's ANGEls! The group is about 208 strong worldwide and has a group within them that is extremely pro-active in finding a cure for Leah. How this happened I do not know, but what I do know is they are making a HUGE difference on a global level. Many of them are members of some of the major costuming groups, like the 501st, Mando Mercs, Dark Empire, R2 Builders Club,and more. PJ REIDEL has managed to organise several Charity events for Leah and has even flown to different events to talk to others at conventions about Leah. Leah is quickly becoming the poster child for children that have un-diagnosed movement disorders. He stresses that because of the fact they are un-diagnosed sometimes they (like Leah) are not able to get the help they need from certain agencies. These events also help raise funds for us. So far their efforts have helped us get a car (ours was falling apart literally), buy the $400 glasses that Leah was wearing (this is not the new pair provided for free as I mentioned before),gas, and air conditioner for Leah since she has problems regulating her temp, formula, clothing, you get the idea. ALL HELP is deeply appreciated. We continue to struggle, and Leah's Angel's continue to fight alongside Leah. I cannot tell you how important these wonderful people have become to us.We are talking house wives, actors, translators, lawyers, costumers you name it they are almost all represented. All funds aside, they are family. Think about it...Why? Some have contacted me that have had problems in the past with their own children, or have had a friend or relative that had similar issues. Others, just fell in love with the Princess. Either way, a strong connection has been made.Although, I am sometimes exhausted emotionally and in other ways, I never will give up on Leah and these ANGEL's re-energize me. Despite it being just a group and posts, they still touch my heart and have the ability to lift me up to a better place. They also continue to surprise my wife and I with all the events they plan and ways they try to get the word out about Leah. They are a blessing to me and my family.
Just recently, a member called "Dutch" flew PJ to Texas to talk about Leah. Stephen Stanton and Rick Fitts (actor and voice over talent..you've heard Stephen as Capt Tarking and RIck was on Star Trek) who are good friends of Dutch also participated in this event alongside Kelly Ward and Nick Bishop. Nick flew in all the way from Tasmania to hand two helmets he sculpted for Leah to be auctioned later. They went around Fan Days convention to get signatures from all the stars and also fans that have contributed to Leah's charity funds. That's a BIG WOW there! Let's now forget those costuming clubs too!
Stephen Stanton has been so incredibly kind (and such a sweet and down to earth person). He mentions Leah whenever he can. I have heard him mention Leah on several interviews. And his friend Dutch has been amazing in helping come up with ideas and getting even more help for us. So all-of-a-sudden we don't feel so alone anymore.
Mike Stanton III has made collectors coins, Alex Dosaula for designing Leah's postcards, the Moss family of Singapore for making Republic Commando patches, Tracy and Jon Rains,Liz Martinez, Giovanni for the buttons, GingerSnap,Jessica Painter for making wristbands, Lesley Faraquar of the 501st Legion, Falin Skirata of the Mando Mercs, Joe 'Lord Bruticus' Mignano,and Jimmy Mac of FORCECAST.net.Also thanks to Jason Watson for keeping the donation page afloat!
There are many others that have contributed to Leah's well being and support from that group that I think I would have to write on another blog/blogs later about. I hope they are not angry at me for not mentioning them on here this time.

Any bit of help is always appreciated.

For those of you that the Star Wars Insider you can read a little about Leah in the latest issue. Many thanks to Mary Franklin at Lucasfilm for that and PJ for letting them know.

----

All-in-ALL we are very thankful for the fact that despite another recent visit to the ER Leah continues to be a fighter. We thank God everyday for her. Being a dad she has shown so much to me. She has truly been a teacher. I know that I have changed. I no longer worry about things I did before that now seem so incredibly trivial. NOTHING ELSE MATTERS BUT LEAH.

I love my new job as stay at home daddy. It can be tough some days when Leah's issues seem to be throwing us a curve ball, but I'm learning to deal and find my strength from her.

I know it's hard for Frani to be away from the baby when she works but she certainly is involved throughout the whole day making calls when I can't and keeping us afloat and on schedule. She dedicates so much time to her on the weekends as well. She is amazing! We've become even closer (I didn't think that was possible). We feel lucky that her job allows her to have the Health Coverage we need. She's also very loved at her work, and in some ways I think it helps to be away in an environment that is conducive to her success. Yet, I can tell she is torn at times. I LOVE YOU FRANI! We are a TEAM.

THANK YOU WORLD FOR BEING PART OF OUR FAMILY! GOD BLESS!!!!!

Maybe next time I'll figure out how to put some videos in! Frani where are ya hon! LOL

An update at last!

2011-09-20T09:02:00.000-07:00

A day in the life

2011-09-19T08:50:00.000-07:00

We show you a visit to the doctor with Leah, from last month

Life goes on...

2011-08-08T23:53:00.000-07:00

Hey Everyone,

It's been a while since I posted anything, I thought it would be good to give an update on how Leah is doing. We've been home for about a little over a week now, and it has been really great. The incident last weekend at the ER for the G-tube, was a rocky start, but she's been doing great since then. I've started going back to work full-time, a bittersweet experience. I didn't realize how much I missed working (if you can believe that). I guess it shows how much I love my job, and the company I work for. The environment and people are great, so it's nice to be back in the swing of things, even though things seem to be more hectic than when I left. On the other hand, I miss Leah so much, it's almost painful to leave her everyday. I cherish the few hours I get to spend with her when I get home, and feel guilty sometimes when I take a while to decompress and have a moment to myself. Luckily, the workday goes by very fast for me, so it's not too too bad. I feel bad for poor Zev since he stays at home with Leah all day and has spent the past week unpacking mostly on his own. I helped him over the weekend, but it doesn't compare with the work that he's put into the apartment while I'm away. I'm sort of glad it's him and not me, just because he's so much better at decorating than I am, but I try my best to help in what I can.

We had a pretty good weekend, although the nurse that we got to cover the days off of our usual nurses was not the best. I don't know if he was new or just in it for the money, but he was making all sorts of mistakes, messing up the g-tube, mixing up med schedules, and leaving a mess everywhere. I had to ask the guy 3 times (3!!) to leave the toilet seat down when he went to the bathroom. I mean, come on, that's just common sense, right?Anyway, luckily, my mom came over on Saturday and watched Leah with Mr. Incompetent Nurse and Zev and I headed to the store to get stuff we were missing for the new apartment.

We went over to the mall we would frequent before Leah was born, and when she was a few weeks old. It has a Best Buy, Target, and lots of other shops. Going without her was really hard. Of course on the weekend is when most families go out to the mall, so I shouldn't have been so surprised to see so many kids. It was torture to go and see all these families with their kids, running around, carefree and healthy. And the babies! There were babies everywhere you looked. I know I shouldn't feel this way, but every time I see someone with their baby in a stroller, I feel angry and sad. Why is it that these kids are perfectly fine? I know I shouldn't be bitter, but I still get depressed seeing other people's babies, even our friend's kids, growing and developing at what seems like light speed. It's normal for them to do so, and I don't resent them for it, it was normal for us too, a few months ago. But now, everything is uncertain; a question mark, a fog.

Even so, Leah is doing remarkably well. She's been doing her tummy time and trying really hard to hold her head up. She still has a ways to go, but today she was doing really great, she held her head up on her own for a few seconds. She has also been tolerating her glasses a little more. She had them on most of the day, and was smiling and laughing at Zev when he'd play with her. She was paying attention to the book Zev and Betty (her nurse) were reading to her, and it seems like she was really liking them. She also has been steadily gaining weight. I have seen a huge improvement, just in the past few days. Her little arms and legs are getting chubbier by the day! It's great to finally see some rolls on those little spaghetti arms of hers. I can also tell that her muscle tone is improving. You can actually feel her little muscles in her arms, where as before it felt a bit doughy. I think it may be attributed to the new formula she's been getting. I am still pumping breast milk for her, but I'm not getting as much as before. So, we have to supplement it with formula. She's getting Enfacare, which has an extra 2 calories per serving, and I think it's been helping her gain more weight too.

She is going to see her ophthalmologist next week, and they are trying to get her a pair of baby goggles instead of the glasses, so that they don't move out of place on her face. Her head movements are so extreme sometimes that her glasses end up poking her eyes and she gets even more upset. Hopefully the googles will work better. I also contacted this great doctor called Dr. Bill Takeshita at the Center for the Partially Sighted. I was just reading this great book by Rabbi Naomi Levy where she talks about how her daughter needed to see Dr. Bill and how he just disappeared one day and retired. It turns out that he had one blind himself, and he took a leave of absence for a couple years because it was such a blow. But he's back at his center working and continuing to help kids with poor eyesight. He's only in the Culver City office once a month, so she won't have her appointment with him until Sept. 28th, but at least she's been scheduled for it.

She also had her occupational therapy assessment last week, from one of the therapists who works with Regional center. They are meeting tomorrow to determine is she is elegible to receive benefits from Regional Center or not. I am pretty confident that she will, I mean it's pretty obvious that she is lacking a lot of development just from being in the hospital. I can't wait for her weekly sessions of occupational and physical therapy to begin. I am confident that she is going to develop so much with them.

Well, it's getting pretty late, so I'll sign off, but I will be posting again this week. We have lots of photos to share that I don't have on this computer so I can't now, but I will soon!

Good night and thanks for keeping Leah and our family in your thoughts

Peace

Frani

The World is waiting.

2011-08-02T14:24:00.001-07:00

So it's my turn to write, says my wife just before I left her at work. Again? Oh yeah, last time I wrote was a month or so ago...the only time I wrote. I just went back to read my post too...Oy--I was stressed and I had a dash of I.C.U. psychosis to add. This post will be different. No really. I mean that. :)

No Longer Alone in this...

Almost 4,000 followers on her Facebook page at May The Force Be With Princess Leah.

2 Support groups

Over one hundred TV stations; both here in the U.S.A. and around the Globe like Croatia, Italy, France, Spain, Peru, Ecuador to name a few.

Radio Stations and PODcasts

This blog alone gets close to 3000 visits a day on a good day.

International Costuming clubs from around the world like the 501st Legion, Rebel Alliance, Saber Guild, and a few Sith's too, have been and will be raising money for Leah. So far, a joint

effort spear-headed by two great and amazing gentlemen (and my buddies) Jason Watson and PJ Raines have been able to raise over $30, 000.00!

A proactive support group called Princess Leah's Angels that come up with smart unique ways to gain attention for our cause and raise money for her.

Hundreds of emails a week and letters sent the old fashion way, have managed to reach us from all over. We love getting them and especially the ones that are written by children who tell us Leah is in their prayers.

Gifts like quilts, teddy bears, clothing, toys, and even a Faberge' egg from abroad, made it to our

hospital room.

And best of all, we were contacted by an attorney and an accountant here in L.A. that want to start a Foundation in her name that will help aid children just like her. It will be called The Princess Leah Foundation or "PLF" for short.

We don't feel so alone anymore. Princess Leah is no longer invisible to the world.

We also know that it is NOT about her either. It is about all the thousands of children that are STILL undiagnosed. It is about the children that cannot get the adequate care they need because of our current health care system. It is about the children that have passed away because they were not blessed being born to a family that could afford medical coverage.

Indeed, we are very lucky. And very, very blessed.

So before I go on I have to say THANK YOU WORLD for finding us. And God Bless you ALL!

-------

Surviving

Well, let's see, 60 plus days in the Intensive Care Unit and the rest on the "regular" floor at U.C.L.A. medical center, A car breaking down, an apartment on fire, finding a new place in a few days, was very stressful too. Not to mention, a couple of return visits (yes again) to the E.R.! Luckily, we can still find the light at the end of the tunnel and our immense sense of humor and our faith is allowing us to survive.

The latest "drama" with Leah was a recent visit to the E.R.. This time, it was due to the fact that her G-Tube (the feeding tube that comes out of her tummy) was clogged up. Luckily, it only took 8 hours for the team at U.C.L.A's ER to get that taken care of. Other than that, we were able to

resolve the air conditioning problem we had at the new apartment...or should I say lack of air conditioning. We had to use some of her charity funds to pay for an air conditioner for Leah's room at the apartment. $475 dollars later (OUCH), she is now the coolest kid on the block (literally).

People keep telling us the saying "God only gives you that which you can handle." Okay, I can now say in all honesty, I know I can handle a lot. How 'bout a break? Just one, so I can take a breath in-between our latest "adventure". One of my friends told me that God is giving me all this for a reason...that he is making me do some spiritual bench pressing. If that's the case, then I have developed bigger muscles than Arnold Schwarzenegger! Speaking of AH-noll, the governator himself was also at U.C.L.A. taking care of his child who was unfortunately in an accident recently. We passed each other at the cafeteria and sort of acknowledged each other..it's a guy thing. I have to say, he is a lot shorter than he looks on the widescreen.

My wife calls me the mayor of the hospital. I tend to make friends fast and easily, and despite having issues with names, I do my best to say hello to everyone I know. Mama raised me well. When you've been this long in the hospital you get to know everyone.

I remember when I first arrived in Los Angeles, times were really rough. This was before I met Frani. Or as I call it BF. I couldn't find a decent job but I eventually found one as a gardener. Not what I came out here to do, but it was a job. The owner of the business was very good to me. But, it was rough. I remember how "invisible" I was to the people back then, so I make it a point to say hello to EVERYONE involved in the maintenance of her majesty. Whether they are doctors or the clean up crew. They are all equal in my book.

As many of you have read, we were finally home...but it was for a short while. It seems Leah had contracted Tracheitis at the hospital and it began to show the moment we got to the house. She had a high fever, and wasn't responding with her melting baby smiles. So, off we went back to the E.R. and then we were admitted for around a week. Her stay coincided with the Check presentation from the recent Charity Raffle P.J. Raines (as mentioned above) had started.

It was such a great event. The press was there too. It was amazing seeing Darth Vader, Obi Wan Kenobi, Yoda, Stormtroopers, Clonetroopers, and Mandalorian Mercenaries from the Star Wars universe there. The Mando Mercs club, even made Leah an honorary member! They even gave her a name in Mando'a SOLUS ANTINIIR -the one who unites and has enduring strength! Nerdy I know, but you have to admit, it's still pretty awesome.

Speaking of awesome, my son was able to come and visit and meet his half sister for the first time (yes, I had him young).It was a little overwhelming since Leah was having some pretty extreme movements--her movements get a little worse when high fevers hit. He wasn't used to that. Hell, when does anyone get use to seeing an infant have seizure-like movements. I never will. He asked to step outside.I could tell he needed a moment. Later, he confessed that seeing his step-moms strength and mine was good for him and eventually, he was helping me change her diapers and entertaining her. My teenager was now a young man. I want to thank his mom for allowing him to come and visit too. Despite being here for only a week, I felt we really bonded. It was the quality of the visit that I was happy about rather than the time. He even got

to see a few celebs out and about. He'll always be my baby, no matter how monsterously tall he gets. I wanted to make sure to mention him as well, because I realized that I hadn't, and it made me feel really bad. I didn't want him to feel I was "editing" him out of this. He's part of the family and he's going through the same pain. It can be tough for him too since he lives a few states away. I LOVE YOU SON!

A group called PRINCESS LEAH's ANGEL's have certainly become that to our daughter. They have become more than just a support group...they are now family as well. It is an invite only group that was started by a wonderful Brazilian woman (also a member of the Mando Mercs Star Wars club). Her name is Mary. Within a few weeks, members, and some celebrities as well, joined this pro-active invite only group. They screen all who want to join. As Mary told me "I

want only people that are going to make a difference and not just reply to my posts...I want do-ers not readers." Crack that whip girl. The others in the group (now 200 or so), have managed to keep me sane, by providing a private place where I can whine and bitch about things and not feel bad about it. LOL They have developed strategies and products to help us out with all the overwhelming costs we are having to deal with. I will post the links below to all the "PFL" approved items at the end of this blog. They have wristbands that read MTFBW LEAH...ALWAYS, a collectors challenge coin approved by George Lucas with Leah on it,info fliers, and buttons to name a few of their amazing feats. We owe a lot to our friend and Leah's Angel's member David S. for telling KTLA about our little Leah. If it wasn't for his initial phone

call, we would probably be out living in the street somewhere.

We owe a lot to Leah's new family. If it wasn't for the Charity Raffle and Donation page they set up for her, we wouldn't have been able to afford the bigger place. We needed a bigger place for all her equipment. The poor kid needs more than a few to keep her going. Still, she's a fighter, and hopefully one day she'll be able to get off of those machines. And now, that my car is dying, we're going to need a dependable car or van (we have to transport her portable machines with us). Hopefully, with some of the money raised, we'll be able to get something we can afford and that won't break down like my current vehicle. It's got over 200,000 plus miles...but it's been as good as it could be for all the wear and tear it's been through. Keep rolling baby, I need ya for a few more miles. My friend told me about a Police Auction where you can get a great deal on a car. We're talking $500 for a 2006 van. That's the kind of deal I'm looking for. Dependable and affordable.

Leah's doing really well as she is now back in her own room. The past few nights, she has been sleeping through the night with no real issues. You are going to laugh, but at first, I thought there was something wrong with her. I know, I know, I'm paranoid. Hey, do ya blame me?

We finally came across some great nurses that the insurance is proving us with (at least for now). They have admitting to falling for Leah's wonderful aura of strength and triumph. It's good to have people like them on our side. I'm glad they love my baby too.

She's doing okay with her new glasses too. She really hated them at first, but eventually she "tolerated" them. I'm not sure how long that will last but I'm hoping she'll love them because if she doesn't, her eyes will forget how to see. If a baby that young doesn't see for a few months they'll lose their ability to see. NOT GOOD. It's hard enough having what she has...so seeing has to happen.

The other day we went to get her new contacts too. Yes, contacts! To be honest with you, it's a little tough trying to stick contacts into an infant with a moving disorder. It was a challenge but I passed the test! It was the most incredibly moving moment, when she realized she could see me and she gave me her little smile. YEY! My baby can see me! A BIG THANK YOU also to Doctor Pineles, Dr. Woo, Dr. Velez as well. They are doing a great job keeping us on track with her eyesight. Let's just keep our fingers crossed (and prayers) that she develops her sight well.

As far as her movement disorder...well, we now know that it has to do with the neurotransmitter. We also know that she can function a little with the Tegretol drug. Her movements are not completely gone but they are much better. There is still many risks for her. But she's a little fighter. Each day we count our blessings and thank THE FORCE that she is with us. She's still not at the point where we don't have to worry much. Let's say we're at a 7 on the worry scale. It seems that her mind is where it should be but her body will have to do some major work with Physical and Occupational therapists. One day, we hope she'll be able to breath on her own and eat on her own. For now, she's tied up to a few machines that keep her going.

She recently went to see her Pediatric Doctor. He's a great guy and has been a lot of help. His staff is also amazing. They actually give hugs as well. LOL I know it's been hard on him as well.

Everything went fine.We talked about fine tuning Leah's medication and talking to the Neuro doctors some more on what we can do to eventually get rid of most of the movements so that hopefully in the future she'll be able to walk and talk like normal kids. He also reminded us about some other programs we can try to get to help us with all this medical fiasco. I'm glad he is also getting us a handicap tag for the car. It's a pain trying to juggle the baby, the oxygen tank, and the rest of her equipment. Luckily, we have a nurse (for now) that helps me out with that. Still, it's a mission.

Over all, our morale is reasonably high despite all the crazy things that happened within the last week or so. Frani is back to work and is surrounded by many positive people there. In fact, she moved to the art department, where she wanted to be! Hurray Frani!!! I'm having to play the role of stay-at-home dad since her job is what allows us to have the medical insurance. I can still work from the house when I am not running around taking the Princess to see one of her doctors. I'd be lying if I told you I wasn't nervous about being alone with Leah and the nurse. Frani has been there since the beginning by my side. But, I have no choice but to do my best.

I try to do my best to keep Leah in my most positive thoughts, but sometimes it hits me that we really don't know what her future will be like. Sadness, tries to take over me, but when that happens, I turn on my computer, and read all the wonderful emails and letters sent to our Princess Leah. As I said, we are no longer alone. I'm also very lucky to have the best wife in the world! Without her I'm nothing.

Thanks for taking the time to read my side of things.

Much love to all Princess Leah's supporters!

May The Force Be With YOU...Always!

Daddy

------------------------------

Below are the links for the

WRISTBANDS

COLLECTORS STAR WARS CHALLENGE COINS

There is also a new Raffle going on that another friend of ours is doing. You can read more on Facebook about it. Here is the link. They have awesome collectibles on there! Thank you Soaring Hammer!

The Donation link is on the Right of this blog in a widget. Or click here.

All of the above have been approved by us. If you ever run across anyone who you doubt is affiliated with our cause and helping Princess Leah feel free to write us. Most if not all of the proceeds go to help our baby.

Special thanks to Michael Stanton II for making the coins. Gingersnap and Jessica Painter for making the wristbands a reality. Of course, all of Princess Leah's Angels as well! Thank you Angels for being in our lives.

When it rains, it pours...or in our case, catches fire

2011-07-24T00:47:00.001-07:00

It's too bad my concept of God is more similar to "The Force" than an actual entity who can control our destinies. It would be much easier to blame him for all the crap we've had to deal with this past week.
Wow, this has been quite a busy week, I don't even know how to start.

The last time I posted, I spoke about us going home soon. We actually got them to let us go home on Wednesday afternoon instead of Tuesday so we could have more time to fix the apartment and get Leah's room ready for her. So, we rented a car on Wednesday since our car is basically out of commission until we get it fixed. We already spoke with a friend of ours who can fix it free of charge, so we were hoping that would happen this weekend, however, now it looks doubtful. Anyway, we got all the furniture, equipment and supplies needed for Leah's arrival from the hospital on Tuesday (the 19th). The room actually is not completely done yet, but it looks really cute, we decided to go with a garden theme. So, with the help of our friend Jen, we built the crib, the rocking chair, the changing table and the bookshelf on Tuesday night and got back to the hospital at around 3 am on Wednesday. I forgot to mention that 5 of our good friends helped us move a lot of our stuff on Monday night and stayed with us until midnight moving things.

Needless to say, we were absolutely exhausted the next day and had to wake up early because the baby was sort of freaking out. We were able to go back to sleep until about 11 am, at which point we started packing up our stuff to take home. At some point in the morning, one of Leah's pulmonologists, Dr. Ischander, came in to tell us that we were in luck because the sleep lab had gotten a cancellation and we were scheduled to do the sleep study at the Santa Monica hospital that night, after we went home. We were supposed to get home by 3 pm, because we were meeting with our home nurses-to-be and a representative from the nursing agency at that time. We ended up not leaving until 4, because some of the discharge paperwork got lost and they had to re-write it. grr.
She was also due for medications and we had to wait for the hospital pharmacy to bring them up. We finally were on our way home at around 4 pm. Oh, and to top it off, I was supposed to pick up her medications from one of the pharmacies that was close by to our house, the morning that we were leaving so that she would have everything before we left the hospital. And, of course they didn't have any meds ready at that time, until later in the day. I told the nurses at the hospital that it didn't matter, I could just pick them up once I dropped Leah and Zev off at home (since she was due for meds at 5).
Anyway, we got home and met with the 2 nurses we'd have, the supervising nurse and the representative of the nursing agency. Once inside the apartment, they asked us were they could wash their hands, and I told them that the bathroom door was blocked with moving boxes and they could wash their hands in the kitchen sink. I set the baby down and hooked her up to all her home equipment, the nurses came back to the room and started talking to me. Zev mentioned that something smelled like it was burning; at first I thought it was maybe one of Leah's machines, the moisture compressor that was getting too hot. And then the smoke alarms went off. Zev left the room and a few seconds later I heard "There's a fire! Get the baby out, get her out now!" I scooped Leah back up, grabbed her feeding pump and ran out the door. As I was running out, I saw the orange flames coming out of the kitchen and Zev trying to avoid them as he ran back into the kitchen to put them out. I ran all the way out the the front yard area, and could see the black billowing smoke coming out of the door. In my rush to get out, I forgot the oxygen tank and luckily one of the nurses got it and helped me hook Leah back up to it. I don't think Leah even noticed what was going on, she was smiling and laughing, being in the sunshine for the first time in months. On the other hand, there were still 2 large back up oxygen tanks left in Leah's room, which don't have wheels and are very heavy. Smoke was still coming out of the door and I wasn't sure if anyone was calling 911, so I started yelling "Fire!" to the other neighbors and knocking on people's doors. I didn't know if the fire was going to reach her room and blow up the tanks and the rest of the building. Luckily the agency rep went in and got on the the tanks. Some of the next door neighbors came running with fire extinguishers and we could hear firetrucks in the distance. Finally, Zev walked out of the apartment, his face and shirt black with soot from the smoke, and told us he put the fire out. The fire extinguishers had been too late,as he had already put it out. The firefighters were even later, they go there and just surveyed the area and used a large fan to air out all the smoke. At that point, my heart was racing and everything was so overwhelming that it all hit me at once and I started bawling my eyes out. One of the nurses offered to hold Leah while Zev hugged me and told me it would be ok. I just could not believe everything that had happened. Things could have been so much worse and it scared me to death to think what would have happened if Zev had not been able to control the fire and had gotten hurt. And to think what would have happened if Leah had inhaled any of the smoke with her trach. Or if we had gotten stuck in her room while the fire got worse. Or the oxygen tanks exploding! One of our neighbors came over and gave me a hug, and asked if I was alright. I was physically alright, but emotionally, not even close. I mentioned to the nurses that we were lucky that we got home when we did if this fire started out of nowhere. They replied "Well, I think since we were all trying to wash our hands in the kitchen and were squeezed in there, one of us might have bumped the stove and turned it on, which may have caught on the stuff that was on the counter next to the stove." I couldn't believe it. How does someone turn the stove on by bumping into it? And not notice?! Apparently, one of the plastic drawers from the fridge caught fire and it sort of spread up to the bottom of the microwave, which is now charred as well. Zev told me he was able to dodge the flames somehow, turn on the kitchen sink, grab the plastic that was on fire, throw it into the kitchen sink under the running water and put the fire out. Luckily, no one was hurt, although our new place now has charred walls and soot everywhere. Not to mention the icky powder from the fire extinguisher.
We had no choice but to go pick up her meds, since they were late; then head to the hospital for the sleep study. How lucky are we that we already had a bed set up for us away from home that night? We were running low on her oxygen tank though, so we had to take one of the large back up ones to the hospital with us. The sleep lab doesn't open until 8 pm, so we were told by Dr. Ischander to go the ER in Westwood, and ask to borrow a tank of oxygen there and just stay there until it was time for the sleep study. Her sleep study was fine, she actually slept pretty well, although it was exhausting because it was the first night away from the nurses and I had to stay up to give her meds and wake up at 3 and 5 am to give more meds, so I didn't really sleep that night either.

Thursday was not too bad, except for our slightly incompetent nurse who seemed like she really didn't know what she was doing and kept asking me how to do things that she should have known. She was nice, but neither of us really felt comfortable leaving Leah in her hands to take care of, even while we took a nap. We asked for a different nurse for the next day and we got someone awesome.

Yesterday, Leah had an appointment with Dr. Ischander in clinic and we went to see her at 11 am. In her office, they took all her vitals and noticed that she was running a fever of 100 degrees, and she recommended we go to the ER. So there we go again, back to the ER. They had us there until 6:45 pm, and took cultures of her trach, her blood and they tried to get her urine, but were unsucessfull. They sent us home saying not to worry, that she probably just has a virus and they would let us know if anything grew out of the cultures.

Sure enough, last night our friends Jen and Bruce came over to visit Leah and she had a fever again, this time of 101.3 degrees. We gave her some Tylenol and called our pediatrician, who was not on call so we got another doctor who was. She reassured me the same type of thing the doctors from the ER had said, that it might be viral, that because she had no other signs of infection, like diarrhea or vomiting, but if she developed them to call her. Leah had a rough night and so did we. At around midnight, we heard her making little sounds, which at first scared us since the last time that happened, she had issues breathing. The on call pulmonologist, Dr. Pornchai said it was a leak in her trach and that's why we could hear her voice now. But I looked at her trach and saw some goo, and suctioned her and the noise stopped, because her trach was not plugged anymore. I guess, she got a mucous plug and her voice was audible through her throat. It was so wonderful to hear her again though, even though she was probably having issues breathing at that point. I loved hearing her little sounds that she probably would be making all the time, if she wasn't trached. They have told us that as she grows, she'll get a leak in her trach and will be able to produce more sounds though.
Anyway, she continued with a high heart rate of 215-220 bpm and temperature all through the night, to the point where the home nurse was sort of freaking out and suggesting we call 911. We didn't, just because we've seen her heartrate go up considerably before.
Meanwhile, I was trying to get a hold of some doctor that we could speak to who knows Leah so that they are aware of the history and we don't have to give so much info about her. Also, so that they know what her baseline and how she normally acts and sounds when she's doing fine. I was so shocked at this page operator who was trying to page different doctors for me and the additude she gave, was crazy. She was so rude, and sounds almost annoyed that I didn't know people's name and that supposedly I "didn't specify what kind of specialist" w needed to find that right doctor. Excuse me for wanting to speak with the correct person, she was sooo rude and mean. She called me back 30 minutes after I spoke with her and let me know that she couldn't reach Dr. Ischander, so I took advantage of the chance to let her know. I basically told her that there was no need to have the annoyed tone of voice while she's on the phone and no need to be as rude as she had been to me. Instead of an apology she acted defensive and told me that she was just trying to help and that I sent her on a "wild goose chase" to find the right doctor for us. It was completely frustrated because she didn't understand that I didn't want an explication of what happened and why she was rude. I just wanted to hear an apology, something to let me know she understood. But she just kept on saying "I was trying to help you, I busted my butt looking for someone for you" but ok, thanks for letting me know. Please lady, like I need to deal with your crap on top of everything else

Anyway, that's about it. The doctor told us to take her to the ER and Leah is now at the hospital for at least another week, while she is treated with antibiotics. We shall see what happens next, every day seeems to bring something new.
I'm going to sleep now because I am super tired,
Have a great night.
Oh! and I'll post again tomorrow with pics for you guys!
Peace!
Frani

Going home and stressed out!!

2011-07-19T01:49:00.000-07:00

Hey Everyone,
I know I haven't posted in forever, things have been crazy recently.
We were told she would be discharged last week and had to rush to find a 2 bedroom apartment. Luckily we saw one we really liked last saturday and started all the paperwork on Tuesday (the 12th), we got approved and signed the lease on Friday (the 15th), and basically moved our entire apartment over the weekend and finished tonight, with a little help from our friends.

Leah had her surgery done last Thursday (the 14th) where they did 3 procedures laparoscopically, meaning they made 3 small incisions on her belly instead of a huge vertical cut. The operation was a success. The gave her a G-tube, a fundoplication for acid reflux, and another procedure, which I can't remember the name, that opens the end of her stomach to she can have faster gastric emptying.
She also got her glasses last Wednesday and has been using them everyday. It looks like she can see her toys and our faces pretty well with them, although it's hard for her to keep them on, since she moves a lot. We have to make sure we check that they aren't skewed on her face so she doesn't get dizzy. Hopefully she'll get her contact lenses soon and those will be easier to deal with for her.

So, they are looking at discharging us tomorrow (or shall I say later today, since it's 2 am). We are really not prepared, since we moved everything into the new place today and basically only have her crib (which is still not assembled) and her dresser for her clothes. We need to buy more furniture for all her machines, since she will have an oxygen machine, a suction machine and the cool mist for her trach. All of which need some sort of table or desk or hard surface. We will probably have to take a trip to Ikea tomorrow and get something for her room, as well as assemble everything and get it ready for her.

As if that wasn't enough to have to deal with in a day, while I was driving home today from the hospital to move more stuff, our car started making a really scary rattling sound and we will have to take it to the mechanic tomorrow. Can you believe that this had to happen the day before discharge?!?! I'm so stressed, I don't know what to do with myself. We want to talk to the doctors tomorrow morning to see if they can discharge her either tomorrow evening or Wednesday morning. We will probably have to rent a van in the meantime, so that we can still work on everything, so that's just one more expense.

I know it'll be great to be home and out of the hospital, but I feel like everything is moving so fast, and like they are rushing us out at the worst possible time. We didn't even know that we would even need a larger apartment until they told us that she was going to be discharged soon. We had no idea she would need so many machines and supplies. We really didn't know what or when to expect her discharge, but I think a little bit of a heads up would have been nice.

On the other hand, she has been doing much better lately, she slept really well last night and tonight, so hopefully she will continue this way for a while. She is also at her goal feeds of 1 oz. of breastmilk + fortifier per hour. This is great, since it means the G-tube is working properly and she is tolerating it well.

We also have started receiving a ton of mail and packages from people all over the world. She's gotten several beautifully written letters, a couple stuffed bears (one a princess and one a darth vader bear, lol), a really nice Faberge egg necklace with a little angel on the inside from a lovely family in Singapore, some children's books; and more. We even got a great letter and beautiful drawing from Katie Goldman, the little Star Wars fan girl that was teased about her SW water bottle at school recently. It really has been overwhelming the amount of support we've been receiving. I know I mention it in almost every post, but it's become something that we really feel helps us, and we look forward to it.

I am so exhausted right and don't have the energy to post all the pictures I'd like you all to see, so I promise I will try to post them this week, maybe after we are settled at home. Plus my phone is dying so I can't even access them right now anyway.

Well, wish us luck tomorrow with all the craziness that I'm sure will ensue. I have some more detailed stories about some other incidents that have happened at the hospital, which I will rant about later.

Have a good night!
Peace,
Frani

A very scary morning.~Dad Reports

2011-07-10T08:20:00.001-07:00

1.

I'm booking a hotel. I can't place; for a second, where I am, but I'm here at this hotel. I'm upset. The room is not reserved. In the distance I hear a fire alarm going off. Everyone starts to panic. People are running everywhere. The alarm gets louder. I hear my wife in the distance. I panic and try to follow my wife's voice. She is calling out the baby's name "Leah, Leah, come on baby". Again, I try to follow her voice. I am concerned, even frightened that I may not get to them in time to save them even though I do not smell any smoke or see a fire. The hallways seem to get longer. "Where the F*!K are they!", I think. I can hear Frani's voice even louder. But I STILL can't seem to find them, in what has turned into a maze of hallways and rooms. Then all of a sudden, total darkness.
My eyes begin to open. Wait,I was dreaming? But I can STILL hear the fire alarm. By now, I've realized that it's baby Leah's monitoring alarm going off. My wife is trying to remain calm, but I see her worried face as I try to wake my self up.
The baby isn't moving. I look at the monitor and she is "de-sating". Her oxygen level is going lower and lower. It is below 94%. That isn't a good thing. My wife begins to shake the baby harder. She is now at 88%. By now, all my "lights" are on and I realize the gravity of the situation. I try not to panic. My wife is calling the baby's name louder. The nurse seems to be taking forever to come into the room. But that is just an illusion; the effect of the adrenalin and my panic mode. Things are not happening fast enough, except for her numbers. They are going lower faster and faster. Finally, the nurse arrives. We explain what is happening to Leah. She begins to calmly but effectively go through her motions. "She needs to hurry", I think to myself. Again, it's all in slow motion. The baby is now as low as 80%...not good.
She pumps up the oxygen level. It's not working. A few minutes later, the doctors arrive. Two and three year residents and a fellow (Doctors),circle around the bed. They look, they observe, while the nurse does most of the work. They confer with each other and think out loud. The nurse realizes the oxygen is not working. Just then, a Respiratory therapist tries to come in, but it's a full-house. From the doorway of our room I see her investigating all the connections and she says, "It's not connected...the trache collar tube is not connected". She looks around the bed and follows the top that is connected to the baby's trache, down and around until she reaches a break in the connection. The baby is not responding because at one point of the night; or morning, the tube was mistakenly disconnected! Some in the room breathe a sigh of relief,while others think it's funny and chuckle. I am not laughing. I am furious, but I manage to keep quiet as not to add to the situation. I want answers. Why is my baby not breathing at 100%? Why is she so lethargic?

For the past 3 days Princess Leah has not been able to sleep. Her movements shake her enough to wake her up from any slumber she attempts. Yesterday,mid-day she finally fell asleep. She slept and slept. I began to think that maybe it wasn't just that she was tired from so many days without sleep. Was she giving up? I worried. I talked to the nurse casually, holding in a bit of panic. She assured me that Leah was simply tired. I believed her and went on.

2.

We had to go shopping for another apartment. We have a one bedroom and according to the Hospitals Case Manager, we needed another room for Leah and her massive amount of devices and equipment since there was talk of discharging her. We had a week to look for a new place and plan a move.
Yesterday, we looked and found a few reasonably priced apartments. If it wasn't for the financial support we have been receiving from our friends in the Star Wars community and those that have fallen in love with our little Princess Leah, we would not have the funds(at this point) to move to a new place so quickly. We had been putting our lives and work on hold, to be by her side vigilantly. I have never ever regretted that decision EVER.
We headed back to the hospital. I couldn't wait to see Leah again. I am anxious. When we arrived. I found her; once again, extremely lethargic. Our friends Alana and Anabel (from her support group "Leah's Angels") had come to visit Leah. They came to distract us from all the anxiety we'd been feeling for the past 60 plus days. It was much needed and their hugs are always appreciated. Throughout their visit, I would check on the baby. She still looked out of it. In my head, I began to worry. Hours went by and our friends left. I asked my wife if she thought the baby was okay. She felt that maybe the baby was just tired. I worried. Something didn't seem right to me.

3.

The doctors are still hovering over the baby. They try to calm us, but it isn't working. My wife is upset and angry. They try again, to explain to us that despite her "de-sating" she is back up at a 100% now thanks to the reconnected trache collar. Still, they think she is too lethargic. "Really? You think?" I sarcastically thought in my head. But they assure me that all her vitals are fine and that she is probably a bit too sedated. Is it the new drug, tegritol? Is it all the Clonopin, Clonodine all these drugs in her system? They turned her feeds temporarily off. I want answers. It's hard to get them. She really is a mystery to many at this hospital. Genetics, the super sleuths of the medical field are trying their hardest to find genetic clues. Neurology, is trying very hard as well. In fact, they have become so protective, that they have asked all medical teams to report to them first with any clues, before approaching us so that we do not mis-interpret or panic with any of anyone's findings. They almost feel like family now that we've been here for so long. I know they feel for our situation. They have even giving us a few hugs in the process of all this craziness. It has been so appreciated.
But today, I'm angry. I'm angry that I have to correct the newer doctors as to what she had and when she had it. By now, I know all the medications, and what they do and how long acting they are. I'm angry that I'm not a doctor. I'm angry we still don't know what she has. I'm angry that I cannot cure her.I'm angry I don't know how long my baby will live. I'm angry that my baby isn't home in her crib. I'm angry that I'm angry.

4.

Several hours have passed. By this time, we have already changed Leah's diapers and bathed the baby ourselves in an attempt to try and wake her. Frani gently massages her little body while using her "happy" voice. Leah responds. She stretches with a yawn or two. She is still not able to completely open her eyes and when she does, they don't open all the way. I am somewhat happy about this, but I cannot stop worrying.
My friends, the Neurology team come in. They've been told what has transpired.I see their faces and they are not happy either. They have been with us through all the ups and downs of this emotional roller-coaster ride. I feel connected to them in some ways. I wonder and hope they feel the same.
They explain to me that the newest drug we have tried should not sedate Leah in such a way. They approach the conversation; as they usually do with us,from a very layman perspective. I understand them. I'm convinced it is not the tegritol. I've learned to trust this team. I joke that now that we are on the "regular floor" I miss the P.I.C.U.'s quick response. I miss the doctors in that unit. Although, I do not miss the cold floor and the cries of pain from the children at night, or knowing that one of Leah's neighbors has died. I DO miss the crew that made me laugh, when they felt I was feeling down. I have to give credit to the nurses; they became my therapists at times. I never want to go back to the P.I.C.U. with Leah again...ever.

The Neurology doctors continue to discuss plans for Leah. They want her out of the hospital. While I worry about leaving, they explain that the hospital environment is not healthy since it is a breeding ground for bacteria and infection. They want her home, away from all that. Their theory is that Leah possibly got some sort of infection that is causing her to feel this way. It can also be the Clonopin (a sedative). Tests will be done later in the day.
The attending Pediatric Neurologist feels my anxiety and says that he will talk to the floor team. I know what he means, and it is appreciated. We've been through so much. He knows this.

5.

I have been taking a nap with the baby for most of two hours. Frani has gone out with her mom to have some mother daughter time. Frani is lucky. Her mother lives nearby and is able to comfort her and lend her ear and shoulder. She makes the time to help us out, when we need a break from the hospital, even if it's for a few minutes to catch our breath and decompress a bit.I am touched by how close they have become...even more than before. Life has not been easy for them, but they have survived. It makes me happy to see the relationship reach a higher level.
I have also grown to understand and get closer to Frani's mom as well. I am thankful that I have her. I see her own desperation for answers and even anger at times. But I remind her, that Doctors are humans and not gods. She jokes "Well, they should be!"

One of the floor resident Doctors gently opens the door to Leah's room. I like this doctor. While the others were nervously laughing about Leah's trache collar tube not being connected, her face was more one of embarrassment and concern. As I assumed, she apologized for the mistake and assured me that would never happen. I explained my disdain over that. She absorbed my anger. As I was told by Neurology, she said tests would be done and that her team thinks it is not the tegratol either. They are holding the Clonopin, and hoping she does well as they ween her off of the semi-addictive drug. The dosage is a small one, but none-the-less she has been on it since she was in the P.I.C.U.. She also informs us that they will not be operating on Leah for her G-tube on Monday. I am not surprised by this; given the morning episode we had. In fact, I told her that I would NOT sign anything in regards to that, unless I felt it was completely safe and I had enough evidence to convince me she was ready for it. She understood.

4:15 pm. Leah lays in her bed, still a dazed with limited movements. We wait for her levels and tests to come back. I talk to her. Somewhere in-between here and there, she manages to tighten her grip. I hope it's her way of telling me she can hear me. I can't stop staring at her. I examine each inch of her tiny body. I close my eyes; at times, to feel the soft skin of her hand gently caress my cheek. I talk to her. I tell her how much we love her and how much we need her. I tell her that I am proud to be the father of such a strong little girl. If she doesn't understand me, I hope she can feel my words. I tell her how much the world loves her, and of all the hundreds of emails, messages, letters and posts from all over the globe, have learned to appreciate their lives again, to Love again,to have Faith again, to be human again. That I have received emails from parents that have told me that reading her story, or seeing her in the news, has changed them and brought them closer to their own children. That I have connected with others in similar situations to ours. That we have been contacted by attorneys that want to help other families like ours by starting a foundation in her name.
My beautiful baby Leah,my Princess, you have been on this Earth for less than 5 months and already you have touched so many of us.

I LOVE YOU LEAH.

Some good news again...

2011-07-08T21:32:00.000-07:00

Hey Everyone

So, we got some good news today. The last test that they did for Shindler's disease and it came back negative, so that's one more thing ruled out. They also got the results back from the cataract and conjunctiva biopsies, which neither showed any clues or abnormalities that they could see. So, our attending doctor for Neurology, Dr. Lerner told us that hopefully the gene sequencing test will give us some clues, but she may have something completely new that they haven't seen before, something they may call "Leah's disease", though it's not official of course. They can't seem to find any movement disorders that also cause cataracts.

She had been doing pretty well with the Tegritol since they started her on it, though they changed the administration of her dose a little a few days ago, which seems like it may have affected her. She was getting it 3 times a day, but we noticed that at about an hour or so before her next dose, the movements we coming back a little. So, they split up the same dose to 4 times a day, so that it was more even. But since the change, her movements seem to have increased and for the past couple of days, she really hasn't rested much. Zev and I take turns alternating between sleeping on the bed with her and on the sofa. Zev's turn was on Wednesday night, that day we started to noticed the increased movements. She stayed awake most of that night, and Zev stayed awake with her, trying desperately to put her to sleep. Of course, she didn't rest at all, she slept maybe about 30 minutes. The following day, I stayed with her most of the day while Zev caught up on some of his sleep and went to a doctor's appointment. He ended up sideswiping a car on his way there, it wasn't too bad, just a small scrape, and luckily the other driver was really nice (a rarity in LA). He's never gotten into a car accident, ever; so I'm sure the lack of sleep was the cause.

Last night, it was my turn to sleep with her, and again she stayed up all night and didn't sleep. She looked so tired and you could tell she wanted to sleep, but her movements kept her awake.

They gave her Tylenol, Benadryl, an extra dose of Clonapin, and Ativan. Neither of the drugs touched her, she stayed awake. They are going to see how she does tonight and maybe tomorrow they will change the Tegritol dose back to what it was.

We're exhausted and frustrated at the fact that we still don't know what she has, but we gain strength from her, when we see her fight and try to combat her movements, it helps us keep going. She really is an inspiration and although we have our moments of desperation, she keeps us going.

Sidenote: Zev is so tired right now, he was changing the baby's diaper and had gloves on, then he went to wash his hands and poured soap into his hands with the gloves still on, hahaha!

She had some physical therapy again today and her therapist said she was doing better with her exercises, she will hopefully continue to improve with time and practice.

So, they are talking about us possibly going home soon, maybe in a week or 2. We already started ordering the equipment she'll need at home. And our insurance is arranging for home nursing care to help us out once we go home. We are definitely going to have to move to a bigger apartment, since all this equipment most likely will not fit in our small one bedroom. We had planned on moving once the baby was bigger since all her stuff fits in our bedroom, but now that the circumstances have changes, we will need a lot more space. So, we already started looking for places in the same neighborhood, and we're going to go see some apartments tomorrow, while my mom stays with the baby.

In a way, I'm happy that we'll be home, and to be able to sleep in a bed, but on the other hand I'm terrified. It's so reassuring to know that there is a doctor at your disposal 24-7 at the hospital, so if something scary happens at home, it won't be as easy. At the same time though, she is so much more susceptible to getting sick at the hospital with all the bacteria floating around from other sick kids. Plus, they were telling us that babies tend to get better much faster when they go back home. Anyway, we'll see, hopefully we'll have a set date soon that I can share with you.

Leah failed her swallow study a couple days ago. She was having a lot of her movements still, which made it worse. Although she was able to swallow a couple times, her coordination was still not up to par with what they thought would be safe for her to swallow efficiently. The GI surgeons came by today to look at her, since she sill be getting a G-tube. This will allow us to take her home and continue feeding her through the tube, but not the NG-tube, which would be easy for her to pull out in about 2 seconds. They are trying to decide if they are going to do a fundoplication. It's a procedure where the very top of the stomach (fundus area) is wrapped around the base of the esophagus. The muscle tone of the stomach can then help pinch the top of the stomach closed, which would stop any acid reflux from happening. They haven't said they will do it for sure yet, but if they do, they want to do both the G-tube and the fundoplication at the same time. Hopefully we'l know by Monday and I can tell you then.

Alrighty, it's getting late and I'm a zombie at this point, so I'll go for now. Thank you once again to all the people who have sent us their suggestions and who have tried contacting other doctors for us. As well, and a big thanks to everyone who has donated or sent us messages on here or on the Facebook support. Your words really help us get through our day sometimes.
Good night!

Peace,
Frani

Awesome Video made by our friend!

2011-07-05T00:40:00.000-07:00

Hey guys,
Check out this great video made by our friend Eric aka Jedi Elvis. He sang and put together the video, which is very beautiful.

Cataract Surgery, Tegritol and Tracheitis

2011-07-04T11:15:00.000-07:00

Hey All,
Sorry I've been AFK for a while, it's been hard to find the time to write recently.

So, her left eye cataract surgery was a success, everything went well and her eye is healing nicely. When they did the surgery, they also took a little piece of tissue from her conjuntiva so that they could study that AND the cataract that they removed. The ophthalmology doctors have been coming in to take a look at her eye for the past couple of days and are happy with how it looks. Leah also got her prescription for her glasses and we are going to look at some of the frame designs and size her for frames tomorrow. I will hopefully have some pics for you then.

Neurologists and us have noticed a significant difference in her movements with the Tegritol she's been getting. She started it last Monday but they increased the dosage on Wednesday or Thursday and it really seems to be helping with the "fits" she has. I don't think we've seen one in the past couple of days actually. Her overall movements have also improved and her eye movements seem to be lessened, although she still has some fluttering up and down of her eyes.

What's even better is that we are no longer in the PICU! We have been moved to the regular floor as she is much more stable now. We moved a couple days ago and she's been doing really well. The only bad thing now, is that she's gotten a bacterial infection in her trach area, called Tracheitis. She had been having increased heart rate, body temperature and secretions, so they got some of her secretion cultures and
found that she had some bacteria there and lots of white blood cells. They are still waiting for the viral cultures to grow to see if she has a virus as well. They've started her on a couple antibiotics, which of course have given her diarrhea (ew, I know). She also has been vomiting a bit too, which could be because she is swallowing her secretions and they upset her stomach. The vomiting is also caused by having to suction her trach out so much; every time we suction her she coughs a little bit to help get the mucous out, but that triggers her gag reflex and she vomits. So, the past couple days she's been feeling pretty icky, but at least she's being treated for that and it won't last for too long.

Neuro also told us that the tests they sent to look at her amino acids looked normal and they were going to continue investigating. They were happy that the Tegritol seems to work though. The Exome gene sequencing is still in progress.
Her pulmonologist came by and said that they would start her on some Pulmicort, and increase her doses of Xopenex to every 4 hours to help release her secretions. He was able to see some mucous plugs in her lungs when they did a chest X-Ray, so hopefully the 2 treatments will help her out. He was also going to reduce the oxygen support she is getting on her trach collar from 30% to 28%, and if she tolerates it, he may even bring it down to room air (21%). Then she would only need to trach collar to push moisture into her trach.

We did a have a little scare 2 night ago where she was sleeping but she started de-sating and her oxygen went down to 70%. She would come back up though after a little bit. Her tummy looked really big and after they did an X-Ray they saw that she had a lot of gas, so they were able to suck air out of her stomach with her NG tube. After they did that, she was breathing a little better and her oxygen sats stayed at 100%, but the next day they found the infection, so it could have been attributed to that as well.

For now, she's being treated and seems to be pretty comfy while she sleeps. She's been sleeping a lot, I guess feeling that sick is just tiring her out a lot.

When talking with the neuro team, they mentioned it could be something that have never even been diagnosed, something new. At least she isn't having any degradation, or at least it doesn't seem that way anymore. It did at the very beginning, but now she's smiling more, and breathing better and it seems like she's doing better with her movements with this new med.

We'll be spending 4th of July here in the hospital, add one more holiday to the list that we've spent here. But, we'll have some friends come over later and maybe get to watch some fireworks from the hospital window.

I'm starting to see some light at the end of the tunnel, as I see her (apparently) get better. But only time will tell, for now: Thank you to everyone who has reached out to us and supported us, it has meant so much to us.

I will try to post some more tomorrow
Peace
Frani

Leah smiling!

2011-06-29T00:36:00.000-07:00

Hey peeps,
I just have some time to post a quick video of Leah smiling. She was s happy after her cataract surgery, probably because she could see us again, after starting to lose her vision. She has been pretty good today, although she was awake all day and did not really nap. She is sleeping now though, which is good. We had a lot of our friends come and visit to day which is always wonderful for us. It's great to have so much support from people online, but getting to see our really good friends in person really lifts our spirits.
By the way, some people mentioned wanting to send us stuff, letters, or checks or pictures that their kids drew for Leah. We got a mailbox close to the hospital and the address is in the sidebar of the blog, if you'd like to send us or Leah stuff--->

anyway, here's the video, I'll try and post some more info tomorrow, good night!
Frani

Day 55 and counting

2011-06-27T18:43:00.000-07:00

Hi all,
Sorry I haven't posted in a while, I feel like living in this hospital is like being in a time warp, there is no sense of time here and the days blur together as they go by.

Anyway, since last week, she's been doing really well. She is smiling a lot more now that she can see us a bit better too, which is always wonderful to see. Her eye is healing very well, she no longer has the patch, but she has a plastic clear shield over her eye to prevent her from hitting herself in the eye (which she does do, by the way, with her involuntary movements)
They are weaning her off of the Ativan, and giving her more Clonapin, and Clonadine to help with her heart rate. The Clonapin is more off a long acting version of the Ativan. She must still be getting used to the change in dosages because she's been very active today, didn't really nap much.
The Neuro team also is trying Tegritol starting tonight, so we'll see if maybe that helps with some of the movements while they figure out the diagnosis. No news yet from the muscle biopsy or the CSF (cerebral-spinal fluid) tests. On a good note, Leah will be participating in a research study which will look at her entire gene structure! The genetics team got in touch with the main researchers and they came to talk to us today about it. It's something that in 6 months to a year, hopefully will be available to the public, and they would do this test first, then use that as a guide to figure out in what direction they should head with the diagnosis. It will be a long process though, most likely about 2 months or more. They also told us that they may find something useful, but they may also find stuff that they can't explain or may not help. So, really the research will probably help them more than it will us, but it's better than nothing. We are not really going to keep our hopes up on this test though, it may not result in anything.
She has her left eye surgery on Thursday morning, and if all goes well, she should have her contacts or glasses by the following week. I still have to contact our insurance company to see if they will cover her glasses, I will probably do that tomorrow.
I can't think of anything else to mention, if I do I'll post some more.
Zev and I are going out for dinner tonight, sort of like a date, close to the hospital, so maybe later I'll post some pictures and the new video of her smiling!

Peace!
Frani

Oh, hello there world...

2011-06-23T21:04:00.000-07:00

Hi!

Wow, so I guess a lot more people than I expected are reading this now. So, HI! and welcome to our little Princess Leah's blog. I know that her story is being told in the UK, Italy, Turkey, and all over the US.Now that you're here I'd like to clarify some facts that some of the media outlets have been consistently getting wrong. First, Leah doesn't have seizures. She has an un-diagnosed movement disorder that LOOKS a lot like seizures, but are not. She's had 2 24-hr EEGs to confirm that and she's getting another one next week. Second, we absolutely LOVE Star Wars, but we did not name her after Princess Leia. She's actually named after Zev's sister, Leah Deborah (she goes by Debbie) and pronounced the Hebrew or Spanish way (LAY-A). You see, Debbie and her husband have been having difficulties conceiving, so we wanted to name honor her by naming our baby after her first name, Leah. Yes, it's purely coincidental that it just happens to also be the name of a certain Star Wars character. But come on, if she was named after the real Princess Leia, we would have spelled it that way, right? :D

So, that being said, we are so grateful that so many people are so interested and caring in our mission to find Leah a diagnosis and, hopefully, a cure. Thanks to everyone for you

r support and for spreading her story around the globe.

Anyway, on to the updates.

So, last night she did pretty well. I decided to give daddy a break from the floor and let him sleep on the sofa, and I slept in the bed with Leah. She actually did pretty well overnight; she

did wake up at 3 am and at 5 am because she needed her diaper changed, but who wouldn't wake up for that. As soon as she was changed though, she would go back to sleep, so it was good. I did have to hold her in my arms and rock her so she's sleep more soundly, which made my arm very sore and numb, but it was worth it if it helped my baby sleep better. And of course, what baby doesn't love to be held by her mom, right? She woke up pretty much right on schedule for her surgery, about 30 minutes before they came to take her down to the OR.

They were supposed to come get her at 7:30 am, but ended up picking her up closer to 8:15 am, since they needed to find the right containers from Pathology to save her cataract after they removed it.

We went down with her to just outside the OR and met with Dr. Velez, the surgeon who would be doing the procedure. He said they would be doing an ultrasound of her eye first, just to make sure her retina was ok and hadn't detached itself. IF that had been the case, they would need a different surgeon to fix that, since he didn't specialize in posterior eye surgery. About an

hour after she was down there, he called us from the OR and said that her retina looks great, and they were proceeding with the cataract operation. Thankfully, the surgery was a success! They removed the cataract, preserved it for the Pathology team to study AND Dr. Rao (the

pretty doctor who was interviewed on CBS) did perfectly clean spinal tap, with no blood. Yay

! Apparently, that is really hard to do, and it will give us better test results when they study the sample. She came back with her little eye patch and was very agitated after the surgery. Dr. Velez ALSO told us that it was a good thing that they had removed it sooner rather than later, because it was progressive, and it was progressing very quickly. And if that happened, she could have lost all her sight. I am really glad I said insisted that the doctors look at her eyes when I noticed something wrong. Like Zev mentioned before if your child is sick, YOU are the best advocate for them, and if something seems wrong and the doctors dismiss it, keep insisting, because most likely you are right. Parents know their children much better than the doctors do.

Luckily she did not need to be hooked back up to the ventilator and was doing great breathing on her own. Oh, did I mention she is completely off of it, she doesn't even need it when she's sleeping! So, we are thinking the apnea she was having last week was just from the sedation.

Anyway, she was crying a lot when she got back, most likely because she was in pain from

both the eye surgery and the lumbar puncture. They gave her some Tylenol and some other medication, which I can't think of right now, for pain. It was still a pretty rough afternoon for her though, she was sweating and moving so much, but luckily, my mom is back in town and she was here trying to help her sleep and taking care of her. Zev and I used that time to do an interview with Sarah, a reporter from the Daily Bruin, the UCLA newspaper. I also did a couple phone

interviews today, with the Huffington Post and ABC News Online. They promised me links to their reports when they are on their sites, so I'll post them here once I have them. Zev also

spoke with Jimmy Mac from the ForceCast.net, a Star Wars podcast. So, it's been a very busy

busy day. I still have sooo many messages that I need to reply to in my inbox on Facebook and on Yahoo.

We have also been having some strange visits from people who saw us on the news! Nothing bad happened, but they got through hospital security and came into our room, and it was just weird. So, they've had to upgrade security for the princess, since apparently, she's some sort of celebrity or something now, lol. Just kidding. But seriously, they did make things for secure for us, and she has an alias now, so only people who we know and are approved to come in, can visit. Which is good, because sometimes we want to step out and go to lunch, or something and we

want to know that she'll be safe, and some wacko who saw us on TV won't try anything while we're away.

Here are some pics!

Leah after surgery with her patch:

The team of doctors, nurses, respiratory therapists and us after she came back up from the OR:

Our family thanks you!:

Here's a funny little video of her from a few days ago :D

Updates

2011-06-22T18:48:00.000-07:00

Hey everyone,

Sorry I haven't posted in a couple days, it's been a very busy past couple of days. After KTLA reported Leah's story on their channel and website, we've received a lot of attention from different media outlets. It's been great to see how much it's grown and how many people it's reaching. We have been flooded by emails and messages on facebook everyday with well wishes and prayers for our baby. It's really been amazing to see so many people want to help and be a part of Leah's journey.

Anyway, on to the updates.

So, Leah will have her cataract surgery tomorrow at 7:30 am. The neuro team came by today and told us that they will be doing ANOTHER spinal tap while she's under anesthesia for her surgery. They spoke with 2 specialists in movement disorders, one from Rochester and another from Children's Hospital LA; and they recommended doing another spinal tap since the last one was tainted with some blood, and maybe they can get better results from this new one. They will be looking for mitochondrial DNA markers, fatty acid levels and neurotransmitters again. They specialists also recommended trying the Leva-Dopa Carbi-dopa (Sinumet) again, at a higher dose. They seem to think that because she is so little and there is no previous dosage for someone so small, that maybe they were too conservative and did not give a high enough dose for it really to have any effect. I am a little nervous about that, just because of her reaction to the Sinumet last time, but they told me that it is not long acting, so if it doesn't work, at least it won't be in her system for too long, and we'll have a clear answer.

Neurology is also going to request for the Ophthalmology team to save the cataract that they remove so that they can send it to the lab and the pathologists can study it. Sort of the same thing they did with the muscle biopsy, and see if it gives them any clues as to what this could be. Speaking of the muscle biopsy, can you believe they STILL have not given us any results yet?! It's been well over 2 weeks, and our neuro docs said they are going to hound down the pathologists for answers. We are hoping we can get more information from the more specialized muscle stains they ordered.

The good news is that they officially ruled out Pelizaeus–Merzbacher disease! This is one of the scary fatal diseases we were afraid of, so we're glad that it is off the table. They are also sending out some tests for VERY long chain fatty acids, instead of the previous long chain fatty acids. Or as I call them the super-di-duper-long chain fatty acids, lol

We have gotten some great suggestions from people who saw the reports on the news or online and we are going to bring them up to our doctors, and they are open to ideas. We also got some people who sent us names of doctors as well, so we are passing those along to the team of docs as well.

Leah is now on Clonadine, to help lower her heart rate, as it had been in the 200-220s recently and it seems to be helping a lot. It is also supposed to help with some of the movements, and she has improved, although she still has them pretty frequently. She is also getting Clonapin for extra agitation, so if she is moving a lot and not able to rest, they give some of that and it calms her down. It probably seems like they are giving her so many drugs, but I really think that they help her, because sometimes her movements are so extreme, she can't nap or sleep at all at night or during the day. She gets soooo sweaty and burns so many calories that they give her extra milk per hour, plus extra calories from the formula they add to the breastmilk. She has gone up a tiny bit recently though, thank god. She is now at 5 kilos or 11 pounds, which is in the low range of normal for a baby her age. She is really tall though, so she looks even skinnier, I pray for the day when this kid gets rolls on her arms and legs.

The heart echo results came back and her heart looked normal, so that's another relief. They are ordering an ultrasound of her abdomen to recheck if she doesn't have any metabolic disorders that may be affecting her kidney or liver. As well as another spot EEG of 30 minutes, just to make sure again that she isn't having seizures. She had 2 before and they were both normal, but it's been another month, so maybe she could have developed seizures now that she's a bit older and it doesn't hurt to confirm it, I guess.

They are thinking of trying out Tegretol (Carbamazepine), which is an anti-epileptic drug that could help control some of the "fits" she has. Leah has 3 types of movements. One is the regular baby movements, intentional moves like trying to suck her hand. The other is what we cal her "dance", where her limbs sort of flail and her head bobs and jerks around, which she can't control. Then she has her "fits", this is when she goes into a weird pose, her leg sticks up int he air, she holds her arms to the side, rolls her eyes back and trembles. That's what looks most like a seizure, but EEGs have not revealed seizure activity. So, the Tegretol could potentially help with the fits. By the way, when she was on the Haldol, the "fits" where so bad, that she basically had them non-stop all day. Normally, she does some baby moves, some of her dance and every once in a while, she has a little fit. This past weekend was horrible to see her having them constantly, which is why we're happy they stopped the drug. Coincidentally, the Reglan she was on WAY back in April when all this started, which they gave her because they thought she had acid reflux, is the same type of drug as the Haldol. So, at least the docs know that for some reason she has a bad reaction to whatever those drugs stimulate in her brain.

I'm posting a video of her "dancing" so you can see some of her moves. We try to keep things positive and happy around her so that she can't sense our sadness about everything that's going on, so we sang while she moved and showed off her outfit :)

Here's a video of her when she was on the Haldol, just for comparison.

WARNING: it looks really scary to see her like this, so don't watch it if you can't handle it

Well, I guess I'll be posting again tomorrow to let you all know how the surgery goes, let's hope it goes smoothly without too many issues.

Thanks once again to everyone for supporting us, sending us messages, donations and prayers.

We really appreciate it.

It's become much easier to deal with, now that we know we are not alone in this. I've become much more hopeful than I was even 3 weeks ago. Zev and I are exhausted all the time, and we get asked by so many people "how do you do it?". The truth is, there is NO other option for us, we have no other choice but to be here for our daughter and by her side. All we can do right now is give her all the love, kisses, hugs, squeezes that we can and make her feel less afraid and so loved. She is our whole world and she is all that matters to us right now. We NEED to stay strong for her. But it helps when you have so many people who can hold you up when you feel like you have no strength left, so thank you to all our families, friends and people who are following Leah around the world. You are now part of what helps us stay strong for her and we're going to keep fighting until she gets better and can live a full happy, healthy life.

Peace,

Frani

News...and The News!

2011-06-20T18:37:00.000-07:00

Hey there,

So, we have some news about Leah. The ophthalmologists came by today to let us know that they will be doing the operation on her right eye for cataracts this Thursday. They will plan to do the second eye next week. Since they are taking the lens from her eye and cannot insert another one, she will have to wear contacts. Although, because of her eye movements, if the contacts don't stay in, she will have to wear very thick glasses so that her vision can develop normally. They told us that it is a very simple procedure, they will suction the cataract out with some instruments. She will need to have a lot of eye exams and care for the rest of her life, because there is a risk for glaucoma to develop later in life.

They discontinued the Haldol today and there was a significant difference in her movements today. She still had her "dance" as we call it, but did not have the extreme dystonic movements that we saw over the weekend while she was getting Haldol. Actually, dystonic movement is one of the known side effects of that drug, so since it didn't help, it made things much worse for her. We are also planning on a having a sit down family meeting with the Neuro team to see what the next steps are for her as well as to get a list of all the tests that they've already done and what they've ruled out. That should be happening some time this week.

KTLA 5, our local channel stopped by today to interview us about Leah and all the support she's been getting from the Star Wars community on Facebook. I guess someone called them yesterday and they were going to stop by yesterday, but it was too late. Then a friend of ours, David Silva said he also called them to tell them about us. It will be airing tonight at 10 pm on channel 5 in LA. Hopefully people will see and be able to help, maybe some doctor will be able to learn more about her and her symptoms and help.

I'm so proud of my little baby, she's so strong and brave. I'm amazed that she continues to fight everyday and is trying to do all the things that babies her age do (holding her haed up, sucking her fingers, smiling) It's a little harder for her, but she tries very hard. She'll always have Zev and I, and her family all over the world now to count on.

Thanks to everyone for your well wishes and donations

Peace,

Frani

Father's day

2011-06-19T17:10:00.000-07:00

Today is father's day and day 47 in the hospital PICU. It's been really hard for Zev today, especially because her movements look worse today, and we don't know if it's the new medication, or if her symptoms are just progressively worsening

Leah got her second dose of Haldol today and it doesn't seem like it's working. The neurology team has to regroup and decide which able to tackle next, though it's obvious that it's becoming very frustrating for them to not be able to figure this out. We're hoping that with this blog, more people can learn about Leah's story and maybe there is a doctor out there who specializes in this type of movement disorder and will be able to at least diagnose her. They are thinking of maybe treating her with an anti-epileptic, even though her EEG looks normal. It's pretty much trial and error right now.

On the bright side, last night we went to go see Super 8 and when we came back, our amazing nurse, Ashley, had made a couple cards for Zev for father's day from Leah. Leah had a great night, sleeping all through the night. We gave her a little bath because she had been so agitated and sweaty. I then gave her a baby massage, and she was so chill afterwards, she just zonked out and stayed asleep all night. Ashley, made a little imprint of her hand for the card and said that Leah barely even cared, since she was so tired. It was a very beautiful gesture on her part to make them PicBadges widget on the side of the blog for those who want to show your support for Leah on Facebook or Twitter with a picbadge. I also added the link to the donation page that Jason Watson set up for us.

Happy Father's Day to all the dads out there!

Peace,

Frani

Daddy's turn.

2011-06-18T20:36:00.000-07:00

Hello everyone. I had a little time in between all the craziness in our lives so I thought I would stick my head in here. There are a few things I wanted to say. So here I go...

I want to thank the 3000 plus friends on Facebook that have been putting up with my posts about Leah. Honestly, I didn't think that this nightmare was going to keep going. I tend to vent there with a few one liners. I did quit at one point but when I did I had about 50 plus emails waiting for me wanting to know how Leah was doing. Most insisted I keep posting, so I did. Then as things got worse, I still wondered if I should post. I began to notice that people...strangers were beginning to become emotionally involved in Leah's situation as well.

In a matter of days, I was contacted by two very good friends of mine in the Star Wars community of fans. One, was "PJ" one of the leaders of the Mando Mercs costuming club and the other was Jason Watson, an amazing artist and prop creator. They wanted to help. At first, I had my reservations. My pride was getting in the way of things. But, I took a look at my baby and knew, I had no choice. I needed help. Rent and all our other bills were due and we were falling behind on our student loans. I didn't want to lose our home. My main focus was my baby of course. Nothing was as important. And my two friends made sure of that by starting an amazing Raffle full of Star Wars props and autographs and so many things that were donated by other prop makers and friends in the Star Wars community. In fact, at the time of this blog post, they have managed to raise between the Raffle and a Donation page close to $15,000.00!!! That is in less than a month! At the moment we have reached 6 figure proportions with our bills. And not all of that is covered by insurance. It was badly needed and the rest is going to survive the rest of this nightmare as my wife and I were having issues with our work. In other words we have been financially devastated by this crisis. And let's not even talk about car issues as well. Things were very gloomy outside the hospital as well as at the hospital.

Who would have thought that the global community of Star Wars nerds (and I'm included in that) would have come to our aid in such a way. Star Wars celebrities like Peter Mayhew (Chewbacca), Steve Sansweet, Stephen Stanton (Clone Wars Animated series) and many more, donated funds or other collectibles. I've never seen such a domino effect of kindness and compassion happen this quickly.

Everyday I open my FB account and I see messages from all over the world from people who are hoping, meditating, and praying for Leah. Or as she is now known throughout the web as "Princess Leah".Leah already has two support pages on Facebook, and two charity events, and a support button that is on over 200 users profile page. I can't even count at the number of prayer groups she has all over the world. All denominations too. People started reposting her story all over the internet. Artist have donated their creativity as well, and they have made patches and posters in support of "Princess Leah"! I've never been more proud to be a Star Wars nerd/fan!

So I thank all of you that have fed my family and kept us afloat and in our home while we deal with Leah's "mystery illness".

JASON AND PJ we LOVE YOU!

In regards to what I feel...I don't even know what to feel. I try to stay neutral in my thoughts. I try not to think past the moment or even second. I lose track of my days. I forget to eat. Because I am always with her. Always. I've come to believe that the best advocate for my child is ME. I am involved constantly with all the meetings that revolve around medical decisions. I have even participated in bringing her "back" when she wasn't breathing and fell limp as a doll in my arms.

My nerves are on hold for now. I try not to think of my own feeling or emotions since it's not about me. It's about Leah. It's about keeping my child alive. We've had so many scares in less than a months time that there is no way to describe what we have gone through. So I use the term nightmare. That is what it feels like to me. I wake up in the morning wondering when I will wake up from this.

There is no doubt in my mind that the doctors are trying their hardest to find out what Leah has. Unfortunately, what she has in not a textbook situation. It is a series of issues. They have all fallen in love with the Princess. In fact many stop by to say hello to our little one on their breaks. The waiting certainly affects me. I pray for a "cure"...a treatment perhaps from her movements and spasms. It breaks my heart. Again, it's not about me, but I'm her father. So I am affected. When I can manage to crawl into her tiny bed with her. I sing to her, read to her and talk to her. I let her know that I am there for her. That mommy is there for her. I tell her that the world is waiting for Princess Leah. I know that she can't understand, but she can feel the emotion in my voice I suspect.
It pains me to see her cataracts. I wonder if she is going to have most of her vision or more problems. Will she be able to see her mommy and daddy's faces?

I caress her as much as I can. Sometimes if I am lucky or the movements subside I rub her tummy and put her to sleep. Unfortunately as of today, she had not slept all night or day. Her movements were so extreme they would wake her. As a parent, it frustrates me that I don't have the power or knowledge to help her. I ask for her forgiveness.

It's nice to know that people care. My family, my friends, her "facebook" aunties and uncles. At times I get frustrated reading peoples messages with their own theories of what she has. But, I understand that it's their frustration as well. They want to see her get better. At times, when people vent to me about how they can't understand why doctors haven't found a cure, I feel like telling them that I feel the same way. But you see, I've probably heard hundreds of people say that already since we've been here at the hospital. Again, I know it's because they don't want to see her here. I've learned to just let them vent. And then there is my family. They worry. They worry a lot and love my little girl. They are frustrated as well, since most live outside the state and far from me. My mom managed to save enough to make it out here. It wasn't easy for her to pay for the ticket, but she did. G-d Bless her.

I was sad that she had to see her granddaughter in the state she was in. I could see it in her face. I could feel it. I felt a little bad since I wasn't really able to spend the time I wanted with her. My mind was always on my baby. I know it was hard for her to leave as well.

As my circle of support began to grow, I found it almost overwhelming to keep up. I was repeating the same thing over and over and over to everyone. Emotionally it's exhausting.I know they want the latest, but sometimes I need a little break from it to regroup. That is why we keep posting on this blog. On top of things, my hours of sleep have been destroyed. I sleep for a few hours during the night and try to sleep for a few during the day. Sleep is like gold to me. It isn't easy for me with all the alarms that Leah has connected to her. Sometimes they never stop. One is to warn us that she isn't breathing, or her heart rate....you get the idea. So that coupled with lack of sleep is starting to affect me. Sleeping on the floor doesn't help either.

People get upset when I don't answer their calls. No offence, but I'm either trying to catch up with my sleep or talking with doctors. The other day my brother-in-law tried calling me and Leah had just stopped breathing. She has gone completely limp like a rag doll. I thought she had died. It was terrifying. It's things like these that I have to deal with. There are times when I just need my alone time. Away even if it's for a short while...a shower, where I can regroup and clean the bad day away.

There are good days though. Days where she does nothing but smile at me. Days where I think we'll be out of here sooner than later. Days where I can take her outside to play. Those days seem close somedays and further away at other times. Still, despite the "battles" we fight, we move on. We try to forget our yesterdays. I need to be strong for her. I believe in her. I believe she'll make it through this. The World loves you Princess Leah, but Daddy loves you more! ;)

A different path

2011-06-18T10:33:00.000-07:00

So, the L-Dopa definitely did NOT work, in fact, it made her movements worse. The Neurology team is going to try another drug which blocks neurotransmitters instead, to see if that works.

So far, some tests came back from genetics and everything has been negative for the one thing they were leaning toward. Now they are talking to see if they can come up with anything else. I think there are some tests that are still pending.

Lately she has been having trouble sleeping, or at least staying asleep, as the movements sometimes wake her up. I was awake with her last night from 3 am-6 am, when she finally slept for an hour; she took cat naps before that big chunk of sleep.

We're at day 46 here in the hospital and it's starting to wear down on us, but we are glad that we have lots of people supporting us online and here in person

We'll let you know when we now more

Peace,

Frani

New Developments,

2011-06-16T09:12:00.000-07:00

Hey Everyone,

Sorry I haven't posted in a while, there has been a lot going on and haven't had the time or energy to write anything.

So, they didn't start the Carbidopa-Levadopa last Friday like we thought they would in the previous post. There was some issue with getting the correct dosage so they moved it to Monday, which then moved to Tuesday because the Neuro team wanted to be around when she got it and on Monday they were all in clinic in the afternoon.

Anyway, on Friday night, after I got back from work, we were getting her bed made after giving her a bath. As I was holding her, I noticed that her eyes looked a little foggy from a certain angle. It was hard to make out, and at first I thought it was just glare. I mentioned it to our nurse, who dismissed it as her eyes probably being too dry, and gave her some eye drops.

As the night went on, it became more and more noticeable to me, so I asked to see the on call resident that night, the nurse said ok, but it she didn't think anything was wrong. I was on my way to the lactation room later that night and I bumped into the resident doctor and told her my concerns, since I figured the nurse still hadn't paged anyone to come see us (and I was right). She told me she would stop by, and she did, just 15 minutes later so I'm glad I caught her when I did. She came in a shined a flashlight onto Leah's eyes to see what I was talking about, and of course her pupils got tiny, so it was very hard for her to see what i was talking about. She also said it was probably just dryness of her eyes, but I wasn't buying it. The next morning there was a different resident, Dr. Feazell (who knows Leah since she was born at Cedar's) came in to look at her eyes, he did the same thing with the light, but was able to see a little of what I was talking about. He paged the ophthalmology team to see if they could come in for an emergency exam, since it was the weekend. They were able to come in and put some drops in her eyes to dilate her pupils. After that, they did the exam, with both the resident and the fellow from ophthalmology, they told us that she has cataracts in both her eyes, more in one than another. They don't really know how it's affecting her eyesight, they were not able to really look at her retina because the cataract was so cloudy. They said she is most likely seeing everything very blurry, more than usual for a baby.

On Saturday, her PICC (peripherally inserted central catheter ) line got obstructed somehow, so they were not able to flush any fluids through it. They tried to get an IV in her 4 times, but her veins kept blowing, and they could not get it. The only drug she was on that needed to go through the PICC was the Precedex, everything else could be administered the J-tube which goes through her nose into her intestines. They had no choice but to stop the Precedex and see what happens. They also gave her a Clonadine patch as a sedative instead of the Pentobarbitol, which seemed to help out and calm her. She reacted pretty well to being off the Precedex, so they didn't start it back up again after they fixed her PICC.

She started on her L-Dopa treatment on Tuesday, nothing really seemed to improve, and if it was to work, it would happen within a few hours. The Neuro team told us that because they have never given that medication in someone so small, that they were starting on a very low dose, so maybe they need to increase the dose if it doesn't seem to work. They are planning on increasing the dose tomorrow I think. It also could make things worse too, because in these types of movement disorders sometimes giving more dopamine helps, but sometimes taking away some of the dopamine works better. So, if the increased dose doesn't work, they might give something to take away more dopamine to see if that works. At this point everything is trial and error, since we don't have a clear diagnosis yet. There are still tests that are pending and might take 2-3 weeks to get those back.

The ophthalmology attending doctor came by yesterday morning to evaluate her eyes again. She was the same person who saw her last month when her eye exam looked normal and healthy. She said that they are planning on surgery to remove the cataracts in the next couple of weeks. They will do one eye at a time for the surgery and because she is so small, they can't replace the lens in her eye like to regularly do, so they will make her special contact lenses that she will wear until she is old enough to have the lens replaced (about 3-4 years old). If the contacts come out because of her involuntary eye movements, then she will ave o wear thick glasses (not a big deal, since Zev and I both wear glasses so she'll fit right in) The good thing she said is that because she has had normal visual stimulation since birth, her vision won't be as impaired as a baby who is born with cataracts, because many of the connections that the eye and the brain need to make have been made.Though she can't say what her vision will be like for sure. They have to coordinate with lots of different people for the surgery so that is why it will take a couple weeks.

Another exciting thing that happened the other day (and not a good "exciting") was while I was at work and Zev was at the hospital with Leah. This happened on Tuesday. She had been very agitated all day, was not sleeping at all, Zev tried everything to help calm her down but she was moving like crazy and really upset. She was even crying, but no sound coming out. They decided to give her a dose of the Pentobarbitol, since in the past, that had helped her out. She got her dose and fell asleep in Zev's arms, then suddenly just went completely limp. She had been having some apnea episodes again over the past few days so this was another one, but it was much worse than it had been. She was like a rag doll in is arms, and she started de-sating again, so the nurse came in and tried to wake her up but she wasn't responding. Finally, Zev have her a hard shove and she woke, but they decided to keep her on the ventilator so that if she has another episode, she would be ok.

It seems like it was a combination of the sedative and the tiredness from moving so much, so now they have her off of the vent while she's awake and they put it back on while she's sleeping. They are trying to plan for a sleep study to be done so that they can try and figure out what is causing the apnea. The sleep study will measure her brainwaves (EEG), her muscle response, her eye movements, her breathing and other aspects so it's great to see what her body is doing in all these tests. The only thing is that it is in the Santa Monica hospital so we'd have to move there for 1 night, then come back. Anyway, they are taking off the Clonapin and the pentobarbitol. The only thing she's on now for sedation is Ativan and Benadryl.

I've realized now that it's better to give updates every day or every 2 days, since I end up writing a whole novel when I don't update. Sorry for the wall of text, but around here there's something new everyday, so a weeks worth has lots of interesting stories to tell.

We also have been getting a huge support from our friends around the world on Facebook. Little Leah is proving to be a strong little fighter and loved by so many people, that she is inspiring people to come together to try and help us. The donations that have been pouring in are overwhelming, as well as the different events like the Star Wars raffle and RSO benefit patch sale featuring Leah. We feel lucky that we have so many people praying and hoping for our family. Even big Star Wars celebrities like Steve Sansweet, Peter Mayhew, Stephen Stanton and Catherine Taber are passing the word along and donating.

Leah has taught me so much in her short 4 months of life. She's taught me to live in the here and now, and to appreciate everyone and everything I have because life is short and we only have one. She's taught me that there are truly good people in the world who can and will help others when they need it, either financially, emotionally and spiritually. I've learned to be patient, not only with her, but while we wait for doctors and tests and some sort of diagnosis. I've learned that family is much more than people who share your blood; they are the people who you can count on for support and kind words. This is by far the hardest thing I've ever dealt with in my life, and I don't know how long we'll have this little angel by our sides, but I'm going to love her forever, no matter what.

I'll post more tomorrow

Peace,

Frani

She likes to scare us, doesn't she?

2011-06-09T23:26:00.000-07:00

Hey guys,

Yesterday was a bit rough, she was awake most of the day and very agitated. She didn't really nap at all, and was moving like crazy most of the day. When she finally did fall asleep at around 7 pm, she slept for a while, which I'm assuming is because she was so tired out.

This is where the scary part happened. She was doing fine when suddenly the alarms started going off and letting us know that her Oxygen levels were going down to 70%. The nurse came in, and usually alarms go off all the time, and sometimes when she moves the monitor doesn't read it properly, but this time it was real so the nurse upped the percentage of oxygen that was flowing into her trach collar. Her respiratory rate was also low (in the teens and 20's, when it is usually in the 30's-40's range), she had stopped breathing for about 10 seconds. But eventually she took a breath and was better, but her breathing pattern was still very weird, she'd take short shallow breaths, then a big gasp of air, then back to the short breaths, sometimes holding her breath in between. This little apnic episode, was most likely caused by a bit too much sedation. She had gotten a dose of Pentobarbatol at 7 pm, because they were removing her trach sutures and they didn't want her to be so agitated. She then got her scheduled dose of Ativan at 8 pm, an hour later. And all this happened at around 8:30 pm. So, they thought it could be related to the sedation.

They took some blood and checked her blood gas levels, which didn't look too great. So they decided to place her on the ventilator for the night, just to play it safe and give her some support overnight. This morning her blood gas looked much better so they took her off the vent, and back on the trach collar.

They also found some bacteria that grew from the cultures they took from her trach secretions. However, the antibiotic that they were giving her, that seemingly helped her white blood count go down (from 21,000-7,000) doesn't necessarily treat the bacteria that they found. So, they are going to continue giving her the antibiotic she's been on, and if anything changes they'll change her to the other antibiotic. They don't want to start her on the other one yet, because it has a higher risk for kidney toxicity, and maybe the bacteria that they found is just regular bacteria that she has.

Today she did better, she was much calmer than yesterday. She had another incidence of what seemed like sleep apnea where her respiratory rate went down to 9-10, but her oxygen saturation didn't go down and it resolved on it's own. So, she started to breathe better after a few seconds. The doctors where still concerned, since this time the sedation had nothing really to do with it. So, they are thinking of doing a sleep study for her apnea.

Neurology team came in today and told us that they wanted to give her Clonazepam (Klonapin) instead of the Pentobarbitol. Mainly because the clonazepam does not have any contraindication when taken with the Carba-dopa Leva-dopa they plan giving to her. They are going to start on that treatment tomorrow, so hopefully it'll help with some of her movements.

For now, it seems like the Klonapin is helping her, she's sound asleep and a lot less agitated.

We'll see tomorrow what new things may come up, it seems she like to keep us and the doctors on our toes a lot with these little scares.

Thanks

Frani

Waiting game

2011-06-07T22:20:00.000-07:00

Hey everyone,

Just wanted to give you all some updates!

As of yesterday, she is breathing on her own without the ventilator. So far she

is doing great without it, she still has a tube with 40% oxygen and some humid air flowing just outside the trach opening to give her some support. The humid air helps keep her secretions moist so that they don't get hard and clog her airway (gross, I know...sorry 'bout that). It's a little scary when she starts to gag and cough, and you see all this nasty gunk come

out of her trach, but all the nurses and RTs (respiratory therapists) were all excited about it. "That's great! It means she is able to cough it out on her own and needs less suctioning from us, which can irritate her" So, at least it's normal, but still a little freaky right now. I assume we'll get used to it as she has it longer.

They started giving her Riboflavin yesterday on recommendation by Ne

urology, because of the fatty tissue they found in her muscles, which can sometimes be related to low riboflavin. She didn't seem to be tolerating it very well, because she started vomiting, and would do it 2 hours after she'd get her dose of it. At first the doctors dismissed it, thinking that the increased secretions were getting to her stomach and upsetting her tummy. But I definitely noticed a relationship between her getting the vitamin and her throwing up. She thre

w up yesterday during the day 3 times, and then again at night. Then this morning at 11 am, 2 hours after her dose, she did it again, and this time it was yellow which was the color of the

riboflavin. So, then I told the fellow in the PICU that it had to be related and she agreed. She told the attending doctor and he took her off of it. So, she's been off it for most of the day, since noon, and has had no vomiting episodes.

She also had a bit of a fever this morning at around 3 am, it was a low grade fever of 38 degrees C (100.4 F). They did some labs and her white blood cell count had gone up, which indicated that she maybe had some sort of infection. They think it could be from the trach getting some bacteria or something. They started her on antibiotics and her fever is gone, it was only one dose of it. She should be on the antibiotics for 7 days. Her temperatur

e has been fine since then. The only issue is that when she spikes a fever, her eye movements get much worse so she was doing a lot of eye rolling and blinking today. She's much more calm

now though.

I'm so happy because we've been able to lie next to her in the bed and snuggle with her. It really helps her fall asleep when we're next to her. Which is another improvement, since she used to require sedatives to sleep thru the night, now she is falling asleep on her own and is not as agitated as she was just a week ago. Even some of the nurses who are seeing her now, and hadn't seen her in a week or two could tell the difference. She still is not 100% back to "normal", like she was before she got sick; but she's not as bad as a month ago. It could be the IVIG, who knows, but to us it's a good sign. For now, we're just hoping she continues to improve.

Neurology and Genetics had some updates for us. They found an issue with one of her

chromosomes (I think it's Q1?). There seems to be a deletion within the chromosome, and they don't necessarily know what that means. It could be related to her issue, but they are going to do some more studies to find out what that deletion could represent. They are also getting us to get our blood tested to see if either of us have the same genetic mutation. The neurology attending doctor told me that the muscle biopsy results so far, according to him, don't really correlate to her movement disorder. He thinks that maybe the extra fat in her muscle could be the reason why she has a low muscle tone, but he doesn't think it has to do with the movements. They are still doing more tests on the muscle biopsy though, just to rule out if it's a mitochondrial issue or not. He also doesn't seem to think the chromosome issue is related either, but they are still looking into it. He says the most relevant clue so far is the low

neurotransmitter issue. They can correlate that with a movement disorder, which is why they

want to try the Carbo-dopa, Leva-dopa; a medication they give people with Parkinson's.

For now, the plan is to wean her off her sedation (she is completely off Fentanyl). She is still on a low dose of Precedex, they are weaning it little by little each day. As well, as her doses of Ativan, which will start to be every 6 hours instead of every 4. The neuro team wants to see what she looks like without the sedation in her system, that way they can evaluate what she looks like before the Dopa treatment and after. It would help them see if the medication is helping or n

ot.

Tomorrow she'll be getting her new trach. They say it should be a pretty quick simple procedure, hopefully nothing too exciting happens with that. They are going to start teaching us how to care for it, cleaning and suctioning; even how to change it out ourselves(!). It's a bit scary but the nurses assure us that they won't let us go home until we feel comfortable with it. They

have this freaky looking doll from the 50's I think, that they use to teach about the trach collar. I don't understand why they can't get an upgrade on the doll, it the freakin' MATTELL children's hospital! Hello? Anyway, I'm rambling because I'm tired and it's 11 pm.

Just wanted to say a HUGE thank you to all the people who have spread the word around about Leah and what we are all going through as a family. Everyone who reads this, you're going through it with us too, and it means so much to us to have support from our friends, our family and even people who don't even know us. The donation page and Star Wars charity raffle, is incredible how much people are willing to give to help us out in this time of need. And once this is all over and I have more time to do it, I'm sending everyone who has donated a personal message to say thanks.

We actually stopped by our place today and picked up some of her clothes that she could wear while she's in the hospital, mostly socks, leg warmers, headbands, pants and some skirts. We brought her Star Wars tees just to show our thanks to all the SW community that's been helping out.

I figured you'd all want to see more pictures of the little princess so I'll add some below.

Enjoy, good night and keep Princess Leah in your prayers!

-Frani

One day at a time...

2011-06-05T09:49:00.001-07:00

Last night she had a good night.

Our nurse told me she basically slept from 11 pm to 5 am without the need of any of the "as needed" drugs she's on, like Pentobarbitol. She is on Precedex and Ativan around the clock as well as Fentanyl; with Pentobarbitol, Benadryl and Ativan every 2 hours "as needed". They've been weaning her off the Fentanyl slowly and she's been responding really well, and they should be taking her off it later this afternoon.

Her trach looks like it's healing well according to the ENT (ear, nose, throat) doctors, and they suggested that they can start weaning down her ventilator settings today. They have her trach change scheduled for this coming Wednesday then hopefully the track that her trach is in will be more developed and it won't come out like it did last Monday.

We heard from the Neurology team yesterday about some of the initial results from the muscle biopsy. It looks like they have found some droplets of fat in her muscle. They still can't tell us exactly what that means yet, and they are continuing to do more in-depth stains to the muscle tissue to see how it reacts. They are thinking that it's looking more and more like it could be mitochondrial, but they still don't know for sure yet. It could also just be metabolic. Again, they are going to continue investigating before they give an exact diagnosis, as they still don't have one yet.

So, I mentioned that she got her IVIG doses last Tuesday and Wednesday. Neurology told us that it can take up to 2 weeks to have an effect, IF it works at all for her. I don't want to get too hopeful but we have noticed some of her movements decrease a bit. I don't know if it's that the IVIG is working or what but I'm happy with that. It's like I told Zev today, "We have to just take things 1 day at a time, and not "get our hopes up" but enjoy it if she's looking happier and better. We've been getting her to smile more often in the past few days as well. That is a good sign, I think, because I know that she is still responding to us and communicating. She'll sometimes start to cry or least look like she wants to cry but no sound comes out. It breaks my heart to see her cry but at the same time I see it as a positive thing, since crying is another way for her to communicate with us.

Here's a video comparison from today compared to last month before she came up to the PICU (the sound you hear was her Laryngomalacia, which they fixed when she got her trach)

Last month: May 5th, 2011

Here is a video of her from today (June 5th):

(towards the end of the video she starts smiling)

Trach Drama, tests and medications

2011-06-01T08:55:00.000-07:00

Hey everyone,

So she had her trach done on Friday, and everything was going fine for a couple days. She was starting to get weaned off of her Precedex and the ventilator. We had adoptive parents come by on Saturday and were able to hold her and rock her in the chair. Her godfather Frankie also stopped by on Sunday night to see her and to take us to dinner, which was really nice.

By Monday morning, she was completely off the vent and on a small dose of Precedex. It was great, her godmother, Kristen and her husband Walter came by that morning to see her and was also able to hold her for a while. She was more awake beca

use they were weaning the sedation off, so her movements were coming back and she was moving a lot while she was awake. That day the nurses encouraged us to get out and go to lunch, so we could walk around and get some fresh air.

While we were at In-n-Out the doctor called us to let us know that they were rushing her to the OR because her movements had been so extreme that they tube of the trach got displaced and lodged in a flap of tissue instead of her trachea. So, of course she started having issues breathing and getting a good oxygen saturation. Thankfully they were able to get the ENT doctor to quickly look with the scope and he could see that it was not in the correct place.

They were able to get her to the OR fast enough and changed it our for a new trach that was a bit longer than the previous one.

They kept her on a paralytic over night and some Fentanyl f

or pain as well as some Ativan to help her sleep. She remained on the paralytic for a bit yesterday but they slowly took her off of it and she is now only on Fentanyl, Ativan, Propofol and a small dose of Precedex. They want to keep her sedated so that she doesn't move and displace her trach again. It takes a week for most of the scar tissue to heal over the trach so that it creates a nice clean track for it to go in. So next Monday they will switch her current one out for a new one.

Neurology also has started her on the IVIG to see if that will help, the potential benefits outweigh the risks at this point, so they started her first dose yesterday and are continuing the second dose today. They will try it for a few days and see how she responds, and if they don't see an improvement then they will try the Carbidopa-Levadopa, for the neurotransmitter replenishment. That medication is basically what they give Parkinsons patients for the shakes and tremors they can't control.

We are still waiting for results from the muscle biopsy to check for mitochondrial myopathy, the cerebral spinal fluid (CSF) tests to confirm the neurotransmitter movement disorder and possibly narrow it down to a diagnosis; as well as a test to screen for Pelizaeus -Merzbacher disease (PMD). So far, they have done another screen for Prolactin levels, and it seems elevated which correlates with the low neurotransmitter, so that is another clue that sort of points to the idea that it could be the neurotransmitter issue, which they told us could be Biopterin Deficiency. But again, the CSF test will be able to confirm it better. They might do some more

genetic tests, but since she just got a blood transfusion and her hemoglobin is still a bit low, so they are going to wait before they take more blood from her.

We are very lucky that we have such a great team of nurse and doctors working on her case and we can tell they are very dedicated to figure out her diagnosis. We also had some friends start a donation page and a Star Wars props raffle to raise money for us. It's such a blessing to have so many people donate and want to help, it is really amazing and touching.

Please keep Leah in your prayers and hope that this gets resolved soon.

Thanks

Frani

Here she is on Sunday after she got her Trach, i was tickling her and she was laughing :)

Got her Tracheostomy

2011-05-27T20:14:00.000-07:00

Leah got back from the OR where they did her tracheostomy. While they were in there they also did a Superglottoplasty for her laryngomalacia. So, that should help reduce the sound she makes and make her airway wider until she develops it better.

She is looking really good, they have her on some morphine for pain medication but she will only be getting that for about 24 hours every once in a while. So, it's not like she's sedated around the clock. They are also giving her some Precedex which is a sedative for when she gets too agitated and to help her sleep if she can't on her own.

She seems much better now too, now that the tube doesn't seem to be bothering her as much. The doctors also want to start weaning her off the ventilator in a couple of days so that she can just breath through her trach. It will take about a week for her to get weaned off of all the medications they have her on, before they can start on the medication (Carbidopa/Leva-Dopa) they are planning on giving her for the movement disorder. The is

sue right now is also getting

the right dosage and preparing the medicine appropriately for an infant to take.

For now we are happy that she seems more comfortable and that she at least looks happier

Thanks to everyone who is supporting us with their thoughts and prayers

Here are some pictures of the princess today after her surgery, enjoy...

Frani

This is right before she was reintubated, from last Thursday:

Here we are after the naming ceremony on Monday:

This is from today after she got her trach:

New findings

2011-05-25T19:49:00.000-07:00

Sorry I haven't posted in a while, things have gotten crazy.

Since the last time I posted lots of things have happened.

Last Thursday she had her muscle biopsy. The operation went well, but it seems that they sedated her a bit too much because she remained extremely lethargic for the rest of the day. The nurse bathed her that night and I was able to hold her for the first time in days while she changed the linens.

While I was holding her, we all noticed that her oxygen levels would go from 100 to 75 and then back up to 95 then down again to 80, etc. So we thought that was weird, and it looked like she was taking very shallow breaths, so that was why her oxygen was dropping. A few minutes later, the nurse took her from my arms because her oxygen dropped all the way to 35, and had stopped breathing and she had to start bagging her to give her more oxygen. The respiratory therapist came in and started giving her more oxygen, and the fellow doctor had just happened to be coming in to check on her when all this happened so she was able to act quickly. Another doctor from her team, one of the pulmonologists was also stopping by to see her and was able to assist. Leah was not having any chest rise, so she was not making any effort to breathe. Earlier they had given her some Rubinol to dry up her secretions so they think that that combined with too much sedation at the biopsy was what caused her to stop breathing. They had to intubate her once again, which we were fine with since that was going to help her breathe. Everything happened very quickly and efficiently but it was another scare that came out of nowhere. Over the weekend not much happened, since we were just letting her rest and waiting for the biopsy results. Zev's mom had come in to town Wednesday night so she was here with us until Tuesday morning and was a great support.

On Monday we held a jewish naming ceremony for her, since we had not had time to have one since she was born. There is also a Jewish tradition called "meshanneh shem" where a person who was dangerously sick would change his name in the hope that the Angel of Death, who summons persons by name, would be baffled thereby. The Rabbi suggested it and we really didn't think it would hurt, so we added a name, so that she is now officially: "Leah Raquel Lucia Esquenazi". I chose Lucia because it means "light", which is very appropriate for her now in these dark times; we want her to be filled with light and healing. Lucy was also my maternal grandmother's name, so it also has a deeper meaning, and we chose Lucia, because it was also Italian which is part of my heritage as well. It was a beautiful ceremony, with both of our moms there as well as our "adoptive" parents, Roy and Dolores Starke. One of Leah's godfathers, our dear friend Ben Cohen was there as well. It was great to have them all there supporting us and being a part of her naming ceremony.

Now for some "good" news....

I wrote good in quotations because it's not for sure yet, so we don't want to get our hopes up.

Yesterday the genetics team let us know that they found an anomaly in her genetic code. It is a lower level of a certain muscular neurotransmitter. Normal range is 480-1000 and hers is 250, so Genetics along with Neurology seem to think it could be what is causing all this. This is really good news because if that's what it is, then it is treatable and she can recover. However, they want to make sure they get all the information back from tests like the muscle biopsy and some other blood tests just so that they don't miss anything.

Now one of the issues for treatment is that the smallest dosage of the medication they could potentially give her is still too much for her since she is so little. So that is something they are working on figuring out as well

One of my co-workers, Alex Lehmann, came by the hospital tonight to visit and prayed for her and kept us company for a while. It was great to be able to talk with him about how we're feeling and share experiences. We feel very lucky to have such caring friends and even people who don't know us personally, praying for us and the baby and hoping she comes through all this soon.

We appreciate all your prayers and support.

I will update again soon

frani

Mitochondrial Myopathy

2011-05-17T08:58:00.000-07:00

So the neuro-muscular doctors came by yesterday and did a muscular test on Leah. Some of the results came back as abnormal, so they are going to do a muscle biopsy to see if it could be a mitochondrial myopathy. At this point, they are not sure, but it's a suspicion that they want to test for. The group of diseases is very broad, so until the biopsy is done, they can't say if it could be a more or less severe case of mitochondrial myopathy. They are doing the other GI study today and we'll hopefully get some results from that in the afternoon.

At this point, we're so on edge from all the different things they keep telling us that it is getting pretty nerve wracking. But we have each other and even though we cry and get upset, we know we have to stay strong for Leah no matter what they find.

Hopefully they are getting closer to finding it out

thanks

Frani

5/16 Update

2011-05-16T15:44:00.000-07:00

Sorry we were MIA over the weekend, we were getting a lot of rest, so sort of forgot about posting. But I know lots of people want to know the latest, so I figured I'd post something before I get all the phone calls.

She was successfully extubated on Friday afternoon. They took a look at her airway an

d discovered that she does not have Tracheomalacia, but she has "Laryngomalacia", which looks like this (the one on the right):

It sort of explains what happened the night that she was having issues breathing. They think that because of her vomiting, it inflamed her epiglottis, which was already floppy, and that collapsed her airway even more, which made her work very hard to breathe.

They kept some oxygen with high flow going thru her nose, but she is breathing (still very noisily) fine.

Not too much happened over the weekend, except that she had a very hard time going to sleep. The first night after extubating her, they did not want to give her any sedatives for fear of her not being able to breathe on her own. She had a lot of shakes, sweats and basically did not sleep at all the first night. They finally gave her some Adavan and Benadryl to help calm her down the following morning, which helped temporarily but she continued the be agitated for most of the day. They did the same the following night, but had the same issues, Zev and I took turn trying to get her to sleep, so we were awake most of the night as well. I believe it was Saturday night that they started giving her some Methadone.

Part of the reason why she was having the tremors and sweats more than usual was because she was on some pretty heavy narcotics for the week that she was intubated (Fentanyl, Precedex, and Versed with occasional doses of Propofal and Morphine). So they sort of made her a little mini addict, and then took it away once she was extubated, so she was dealing with withdrawal symptoms. The Methadone helps them wean her off of the drugs a little easier than just stopping cold turkey.

Today she went down to Radiology for a gastric emptying study, tomorrow she'll get an Upper GI study, and once she is feeding again they'll do the PH probe. For now she has not had any food in her stomach (not even with the feeding tube) since they extubated her on Friday. So, she is getting TPN plus fats in her central line IV (going into her jugular vein) which is giving her all the nutrients she needs and calories, but I don't think it really takes away the feeling of having a full tummy, so I'm sure part of her frustration is also feeling hunger. They are trying to do all the GI studies to see how bad her acid reflux is, so they can figure out when to start feeding her again. She also has sort of forgotten how to suck and swallow because she was intubated for a week, so they had an occupational therapist coming to see her to help her get more coordinated.

According to the OT, she is still coordinated but her gag reflex is not really there, so they don't want to feed her and then have her aspirate anything into her lungs. I'm hoping that after her upper GI study tomorrow they can start feeds again. For that study they have her swallow a dye, and then take X Rays to see where stuff goes, and if it refluxes a lot and how long it takes to go through her system.

Neurology is having a Neruo-Muscular Specialist come in today to asses her, since they want to see if there is any way it could be a neuro-muscular problem. They want to make sure he gets any additional tests he thinks she may need before starting the IVIG treatment, which they still think is a good thing to do. They also did a test to see if there is any muscular degeneration and it came back negative, which is good news. So far, everything had been negative from all the tests they've done but they are also still waiting for a lot of tests to come back, especially the Genetics tests.

So again it's back to waiting for all this stuff to happen. We'll update as we get more info.

Thanks

Frani

Got some good news this morning

2011-05-12T09:11:00.000-07:00

So, I sat in on the doctors morning rounds and all the scans from yesterday came back negative for a tumor! They are going to see if Neurology wants to do another MRI, but so far, all the labs and scans have been negative or pending. Which means it eliminates a lot of bad things, like Neuroblastoma. Now, they did tell us that sometimes infants with Neuroblastoma have it and then it regresses before they can find it. So, there might be a chance that that is what happened, and she's dealing with the after effects of it; but at least now there is no tumor, so there won't be a need for chemotherapy.

They are planning on doing a gastric emptying and upper GI series in the next couple of days since we still haven't been able to find out if acid reflux is a part of this whole thing. They have to wait until Monday to do the PH probe, since she is on Protonix and she needs to be off that medication for 3 days prior to the probe.

They are trying to do as many procedures as they can while she's intubated, and they still want ENT (ear, nose throat) to scope her and look at her airways before they extubate her to make sure that she will be ok to breathe on her own. They mentioned planning on extubating her next Monday.

We still have to hear from Neurology what they want to do for treatment now that the scans have been completed and everything was negative. They will probably start the IVIG soon, but they still have to round and come talk to us about when they will do it.

So far, I think it's all good news and we're starting to see a light at the end of the tunnel, so keep praying and hoping and I'll update as soon as I get some more answers.

Love you all!

Frani

New updates

2011-05-10T13:45:00.001-07:00

Leah went for her CT scan yesterday afternoon and they ended up doing only a scan of her chest and upper abdomen, since the attending radiologist said doing a full body scan was too much radiation and she is too small. From that scan they did not see any sign of a tumor, but again, it was only a portion of her body. So tomorrow she will go in to Nuclear Medicine for her MIBG scan. They gave her a couple drops of the radioactive tracer that will light up any tissue that is neruoblastoma earlier today. They also gave her some iodine so that her thyroid will be protected from the radiation.

She also got another spinal tap today, since they have to do more tests, but luckily we all remake spinal fluid within a few days. They actually froze a whole vile of it in case they needed more later, that way they don't have to poke her again. It was funny because the nurse told us that while she was sedated for the the spinal tap, they had to take off her diaper and clean the area of her back, but that she started pooing and they had to wait for her to finish. The funny part was every time they thought she was done, more kept coming out! :D Apparently the doctor kept telling our nurse: "ew! Elena, clean it!!" haha, she was teasing him about having to get used to it if he was ever going to have kids.

The ophthalmologist came by today to let us know that he showed some videos of Leah's eye movements to his colleague who is a pediatric neuro-ophthalmologist, and he said that it looked like opsoclonus-myoclonus to him and he wanted to come over to see her in person. I think they said they were coming tomorrow. He also mentioned that many people who have opsoclonus don't always develop the tumor and what she is going through may be an autoimmune response of her body that could have been because of her vaccines or sometimes a cold can do this as well. We mentioned that this all started after her vaccines and that when they did cultures from her nose, they found the common cold virus, and the coxackie virus. So, he thinks that it might be able to be treated with IVIG. Again, that's an assumption and we'll have to make sure they rule out the big bad things like cancer, before they can say exactly what it could be.

She continues to respond to our voices immensely to the point that even heavily sedated she manages to open her eyes and melt us. Her breathing issues may NOT be attributed to anything connected to what she's had, other than possibly major acid reflux corrosion that irritated her airway causing her to choke.

The neurology team also came by today to see her, and they don't really have any news, but they did tell us that they are going to reach out to Dr. Pranzatelli, who is supposed to be the best doctor in the world in the specialty of opsoclonus-myoclonus (http://www.omsusa.org/ is his website). So, they are talking to him about Leah to see what treatment options are available for her. Which is really great, since we had done some research and had seen his name pop up and were going to tell the doctors about him, but they are already on it.

We also got a visit from a representative from Chai Life Line (http://www.chailifeline.org/), which is a jewish organization which helps families that have children in the hospital. They were really great and are bringing us lunch and dinner everyday, which is such a relief since buying food at the hospital cafeteria gets expensive and sort of boring (as far as the food is concerned).

They are also working with the social workers here at UCLA to write letters to my work and Zev's work excusing us because of Leah's condition. Not that they wouldn't excuse us, but it's more of a proof thing to have.

We also got a visit from our best friend's parents, Dolores and Ray Starke today who have been incredibly supportive and they took us out to lunch while Leah got her lumbar puncture. It was nice to have them here and be able to talk to them, they are sort of like our Mormon parents, lol. :)

My mom also came by for a little bit, with a mask on, since she is taking care of a little girl who is sick, so she didn't want to pass it on. She was able to look at Leah through the glass door at least.

I don't think I have anymore updates for now, we are just waiting for tomorrow, and taking one day at a time.

Keep Leah in your prayers.

Blood transfusion

2011-05-09T13:08:00.000-07:00

Leah received a blood transfusion last night (about 50 ml.) and is doing much better. She had been looking very pale, and her levels were really low, which is why they decided to do the transfusion sooner rather than later.
I went this morning to the UCLA blood center and donated for her just in case she needs more as well.

They are in the process of scheduling the CT scan for later today. They will have to take her off the feeding tube an hour before they do the scan since she will be completely sedated.

The ophthalmologist just came by to check her eyes, he is taking some videos of the eye movements and will be showing them to his colleagues across the street who specialize in pediatric neuro-ophthalmology. He said he would come back later to get some images of her retina as well. His initial reaction is good, since when he shone the light on her eye, she squinted and reacted, even though she is sedated.

More info to come...
thanks
frani

Taking videos down

2011-05-08T23:30:00.000-07:00

We decided that we will have the videos for the doctors on a separate pages, since they can be a bit disturbing for people besides us to watch
We will continue to give updates thru this site though
Thanks
Frani

Leah's health update

2011-05-08T22:24:00.000-07:00

So, we have started this blog to let our friends and family know the latest updates on her health issues. We have also created this page to post videos for Leah's doctors to watch and analyze.
We have a lot of them so I will post them in chronhological order, from the most recent to older videos. I'll make sure to add any notes and the dates and times.

Here is a summary of what has been going on:

Leah was admitted to UCLA medical center for abnormal eye and body movements that started about 2 weeks ago, after her first round of vaccines which caused her to have a fever. After that fever she was having a lot of jerking movements and eye movements that they now are calling opsoclonus myoclonus ataxia syndrome, also with pretty extreme back arching.
The first visit the the ER was because of these movements and they did a MRI and a 24 hr EEG which both came back normal. It didn't look like she had any seizures or any obvious neurological issue. They assumed it was bad reflux, possibly something called Sandifer's syndrome, which only affects 1% of babies. They started her on acid reflux medication but it didn't seem to help.
We had to take her to the ER last week because she had a high fever or 102.8, and she was admitted again, this time at UCLA Santa Monica. The fever went down, but the movements were constant, so much so that sometimes she couldn't sleep. Or when she did it was because she was so exhausted from it. They attempted to do a PH probe, a tube that goes down her nose to her stomach to measure the acidity and see if it was indeed acid reflux. She was born with Tracheomalacia, which means her trachea is not rigid, but floppy, so when she breathes it makes a squeaky noise. Because of this, when they did the PH probe, she started to choke and couldn't breathe and started to actually turn blue on us. They pulled it out and she was fine. They tried one more time, but the same thing happened, so they decided not to do it at all. They sent us home on one more acid reflux medication called Reglan, which would help her stomach contents leave her body faster to reduce reflux. They also told us to add rice cereal to her milk to make the liquid thicker and perhaps help it reflux less as well.
The next day we took her to the ER again, because she was vomiting everything she ate, and our doctor did not want her to get dehydrated. She was seen by the same group of neurologists who thought that her symptoms had worsened and changed since the last time they saw her, so the put her on another EEG.
The gastroenterologists came to see her and asked us to take her off the reflux medication because they wanted to try the PH probe again, this time with someone who knows ow to insert them in special cases like hers. They didn't think it was just reflux either, when they saw her, because of the eye movements she had.
So Tuesday they took a lot of blood and urine samples to test for genetic, neurological and infectious diseases. The poor thing looked like a pin chushion, they poked her in about every vein they could use.
The video EEG came back normal again which told us that her movements were not seizures and it eliminated a lot of neurological things it could be, but not everything.
We also got a consult from the Hematology/Oncology department because they think it could be a type of cancer called Neuroblastoma, which is a tumor that could cause developmental delays. Although because she is so young it could be stage 4 neuroblastoma which apparently is treatable and not as scary as when children are older.
On Friday 5/7 she was put under general anesthesia so they could do another MRI, this time with contrast to try and find any genetic or neurological issue. She is also getting a MIBG body scan to see if they can find a tumor, which will be on Tuesday most likely. While she is under they also did another lumbar puncture and get some of her spinal fluid to test for some other diseases as well as for the neuroblastoma.
The results from that MRI came back normal, so her brain looks structurally normal. No lesions, or strokes on any thing that could give an idea as to why this is happening.
They decided to do a CT scan on Monday and the MIBG scan on Tuesday, possibly.

On Saturday 5/8, we think she overfed, which caused her to vomit most of what she had eaten. A few hours later, at around 7 pm, we noticed that she was crying and just being very fussy after I bottle fed her some expressed breast milk. We both tried calming her down, and rocking her because we thought maybe she was just tired. But her breathing got very loud and it started to sounds like she was gasping for air. We called the nurses in and they noticed that she was sweating alot and having issues breathing, so they called the on-call doctor and she came in within a few minutes. He took her shirt off and immediately noticed that she was working way to hard to breathe, since every time she would inhale, her ribs would stick out and she was having a lot of retractions.
They called rapid response and a respiratory therapist came in and tried to help her clear her airway and got an oxygen mask over her. After that things happened very fast, they had close to 20 people in the room, doing what seemed like 100 things at one, trying to help her. They got a PICU doctor to come up and she took control and started getting her on different medications to calm her down and they decided to intubate her so that they could help her breath. We were lucky that the doctor who had come in, knew her very well and was able to let everyone else know what was normal for her and what wasn't. As well as keep us informed of everything that was going on, which was a big relief because we were thinking that we might lose her and he made sure to give us peace of mind by giving us a play by play of all the procedures that were happening. It was all very fast, they had to wait for the ENT to come in because of her tracheomalacia. As soon as he got there he was able to look through a scope as he put her breathing tube in and once it was in, they were keeping her breathing stable with a hand pump, and eventually moved her to the PICU (Pediatric Intensive Care Unit).
As of right now, Leah is still in the PICU and sedated. She is stable now and they have some machines helping her breathe and also have a feeding tube which is helping her get the nutrition she needs.
Because of all the blood they have been taking out, she is now very anemic, and they will most likely have to do a small blood transfusion, so because I am O- blood (universal donor) I will be going first thing in the morning to donate my blood for her.
For now, they don't know if this is related to her initial issue or if it's an isolated event. They are still waiting for dozens of genetic and neurological tests to come back, just to try and find the cause by process of elimination.
I will hopefully have more answers tomorrow after the CT scan
Keep praying for her..
Good night,
Zev and Frani