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
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
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.