Sunday, December 11, 2011

A Diagnosis?...

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

Thursday, December 1, 2011

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


Thursday, November 17, 2011

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.

Saturday, November 12, 2011

Meditation and finding myself again

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

Wednesday, November 9, 2011

Seizures and Meningitis

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

Thursday, October 20, 2011

8 months old already!! + Genetic Test Results

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

Thursday, October 13, 2011

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






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.

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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






Monday, September 19, 2011

A day in the life

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

Monday, August 8, 2011

Life goes on...

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


Tuesday, August 2, 2011

The World is waiting.



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!

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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


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Below are the links for the






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.