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