Thursday, June 23, 2011

Oh, hello there world...





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

So, last night she did pretty well. I decided to give daddy a break from the floor and let him sleep on the sofa, and I slept in the bed with Leah. She actually did pretty well overnight; she
did wake up at 3 am and at 5 am because she needed her diaper changed, but who wouldn't wake up for that. As soon as she was changed though, she would go back to sleep, so it was good. I did have to hold her in my arms and rock her so she's sleep more soundly, which made my arm very sore and numb, but it was worth it if it helped my baby sleep better. And of course, what baby doesn't love to be held by her mom, right? She woke up pretty much right on schedule for her surgery, about 30 minutes before they came to take her down to the OR.
They were supposed to come get her at 7:30 am, but ended up picking her up closer to 8:15 am, since they needed to find the right containers from Pathology to save her cataract after they removed it.

We went down with her to just outside the OR and met with Dr. Velez, the surgeon who would be doing the procedure. He said they would be doing an ultrasound of her eye first, just to make sure her retina was ok and hadn't detached itself. IF that had been the case, they would need a different surgeon to fix that, since he didn't specialize in posterior eye surgery. About an
hour after she was down there, he called us from the OR and said that her retina looks great, and they were proceeding with the cataract operation. Thankfully, the surgery was a success! They removed the cataract, preserved it for the Pathology team to study AND Dr. Rao (the
pretty doctor who was interviewed on CBS) did perfectly clean spinal tap, with no blood. Yay
! Apparently, that is really hard to do, and it will give us better test results when they study the sample. She came back with her little eye patch and was very agitated after the surgery. Dr. Velez ALSO told us that it was a good thing that they had removed it sooner rather than later, because it was progressive, and it was progressing very quickly. And if that happened, she could have lost all her sight. I am really glad I said insisted that the doctors look at her eyes when I noticed something wrong. Like Zev mentioned before if your child is sick, YOU are the best advocate for them, and if something seems wrong and the doctors dismiss it, keep insisting, because most likely you are right. Parents know their children much better than the doctors do.
Luckily she did not need to be hooked back up to the ventilator and was doing great breathing on her own. Oh, did I mention she is completely off of it, she doesn't even need it when she's sleeping! So, we are thinking the apnea she was having last week was just from the sedation.
Anyway, she was crying a lot when she got back, most likely because she was in pain from
both the eye surgery and the lumbar puncture. They gave her some Tylenol and some other medication, which I can't think of right now, for pain. It was still a pretty rough afternoon for her though, she was sweating and moving so much, but luckily, my mom is back in town and she was here trying to help her sleep and taking care of her. Zev and I used that time to do an interview with Sarah, a reporter from the Daily Bruin, the UCLA newspaper. I also did a couple phone
interviews today, with the Huffington Post and ABC News Online. They promised me links to their reports when they are on their sites, so I'll post them here once I have them. Zev also
spoke with Jimmy Mac from the ForceCast.net, a Star Wars podcast. So, it's been a very busy
busy day. I still have sooo many messages that I need to reply to in my inbox on Facebook and on Yahoo.
We have also been having some strange visits from people who saw us on the news! Nothing bad happened, but they got through hospital security and came into our room, and it was just weird. So, they've had to upgrade security for the princess, since apparently, she's some sort of celebrity or something now, lol. Just kidding. But seriously, they did make things for secure for us, and she has an alias now, so only people who we know and are approved to come in, can visit. Which is good, because sometimes we want to step out and go to lunch, or something and we
want to know that she'll be safe, and some wacko who saw us on TV won't try anything while we're away.

Here are some pics!


Leah after surgery with her patch:
The team of doctors, nurses, respiratory therapists and us after she came back up from the OR:
Our family thanks you!:

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

12 comments:

  1. Good for you, for clearing all that up for those latecomers in our Quest, lol.

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  2. Hello from New Zealand :D

    My family and I are keeping wee Leah in our thoughts and sending get well vibes your way. From your photos we can see how strong and smart she is and I know she'll pull through :)

    Seeing and reading about how much of a fighter your gorgeous baby daughter is is amazing in itself BUT when I read about how all of the Star Wars community have come together to look after their own it makes me all teary (in a really good way!).

    With best wishes

    Mo

    PS: Don't feel like you need to reply to this! I just wanted to say hi and that we're thinking of your wee girl.

    PPS: I contacted the press here in NZ too - Hopefully they run wee Leah's story and you guys get some more donations :)

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  3. Thank you for posting this up. It means alot to my family cause everyone in my house is so worried about Leah especially last night (Singapore time) when we heard about her surgery, we can't sleep but after reading what Zev have post in the forum it make our mind at ease. Leah has touch me & my husband heart alot cause she remind use alot about our 9 months old daughter. My family will continue to pray & make church masses for Leah to find the doctor who can cure her & diagnose her medical condition. Please do keep us posted of Leah well-being. With lots of love Nicole Moss & family

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  4. Wow im glad everything turnd out great after the surgery....your daughter is so beautyful and blessed..when you least expect it you guys will be home jus have faith and patience....I will keep you and your baby in my prayers..and also thank you for keeping us posted on her condition...well you guys have a goodnight and lots of hugs and kisses your way...=)~xoxo~

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  5. I love you guys and I'll be there soon to help you guys out!! Love to my sweet girl, to you and my brother <3

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  6. I saw Leah on the news and loved her the moment I saw her!I felt a need to pray for her and am doing so now as well.Her name fits her ,she is so beautiful and strong too!I will keep up with your blog and please let me know if I can help from Kansas City!I will continue to pray!
    Blessings,
    Vicki

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  7. Hi there, Member of the DSG 501st and Rebel Legion and ISO and I've been following for a while and you and your family are such an inspiration. I have a little one a month or so older than Leah, and I can't imagine having to go through all that. I get tears in my eyes every time I see a picture with Leah hooked up to machines. It is just heart wrenching. I wanted to comment to let you know that our hearts and prayers are with you. Leah is such a beautiful baby! God bless you all!

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  8. Ok, so I know this is obvious and she's been tested for a million different things. I'm sure this is one but wanted to mention it. I've started contacting doctors at Boston Children's Hospital and one suggested this:

    http://en.wikipedia.org/wiki/Opsoclonus_myoclonus_syndrome

    She's been tested for this, right?
    I'm thinking about you guys and absolutely hoping for the very best every day. I am a friend of Scott and Debbie and I've been reading your blog from the beginning. You guys are doing great, stay strong, lean on each other and you'll absolutely get through this!

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  9. Brandy,
    Thanks for the link, she has been tested for it. I actually spoke to Dr. Pranzatelli today ont he phone abbout the possibility of it being OMS. I will post more info about the call in my next blog post

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  10. Hope and hug for little Leah from Finland. I really wish she gets better.

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  11. Hi Frani,

    I heard from another doctor at Boston University named Dr. Gorman today who also suggested testing for that. He said that there is a doctor at UCLA named Wendy Mitchell who specializes in OSM. Additionally he mentioned that with eye and limb movement, he would suggest looking into Neurotransmitter disorders. I'm positive all of this territory is well covered. If you would like to send your email address to me, I would be happy to forward information I get back from the doctors I emailed. My email address is brandycol1@aol.com. I'm thinking of you guys every day and sending all the love and good vibes I can muster your. XO to you guys and especially Sweet, Beautiful Leah!

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  12. ....me again. Emails are starting to come in so I want to be sure to pass it along before I forget. Dr. Markowitz from Boston Children's sent a long email, this was part of it:

    3-methyglutaconic aciduria, that I am sure they checked for, but just in case, it might not hurt for them to check it again. It is just a matter of checking the level of 3-methylglutaconic acid in the urine. There are several types of disorders associated with a high level of this substance in urine, but I did come across one or two patients described in one study who had cataracts, and one of the forms, type 3, is associated with chorea. Just a thought, but probably something they already checked.

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