Happy 5th Birthday, Jackson!!!
I cannot believe my baby is FIVE! This birthday held a special meaning for me. Once upon a time, we were given some incredibly bad news. Before it was determined that Jackson had Krabbe disease and not MLD, we were told that Jackson would probably not live to see this birthday. His prognosis changed once we got the true diagnosis and he went to transplant, but that ominous deadline has always stayed in the back of my memory. Well, he made it past that day and is doing better than ever, and it feels like a major victory. Every day feels like a victory 
.
He's doing incredibly well. The biggest accomplishment recently has been with his communicator. We recently started using a device that enables him to move the mouse cursor with his head, and the whole thing really 'clicked' for him last month. He's still learning how to improve his accuracy, but he's doing much better and is able to say things to us rather than just being able to answer yes or no questions. It's pretty amazing to be in another room and hear him say "Mommy I love you" .
His therapies and school (still in-home) are also going well. We're looking at sending him to kindergarten in the fall! I'm equally very excited and totally terrified by this prospect. The district has recently formed a class specifically for non-verbal kids that use communication devices that would be PERFECT for him, and the creation of this class has been a deciding factor in whether or not he'll start in the fall. We won't know if he gets a spot in this class until after his IEP later in April, but we're hopeful.
The girls are one! This year has gone by so fast. Alexa is starting to walk and Maya still gets around with her funky one-legged crawl (she puts one foot on the ground and scoots the other leg underneath her). They're both signing 'milk' as of this week and Maya just learned to clap. Neither have any real words that I'm convinced of although we have lots of babbling - Maya says the cutest "ducka-ducka-ducka" thing.
They are both very complex little people - there's no "this is the quiet one" or "this is the friendly one". They both have their moments of silliness, seriousness, contemplation, crankiness, etc. I'm just amazed by them and I love watching their personalities emerge.
We had a wonderful party for all three of them last weekend, with a petting zoo and lots of family and friends. Jackson LOVED the petting zoo. We got a bunch of great pictures but I'm having some trouble uploading them to the website photo album. I was able to upload some to photobucket to tide you all over, so here are a few. I'll try and get the rest on his website photo album in the next few days. Enjoy!
Jackson holds a bunny
Maya
Alexa
Happy Birthday, Jackson!!
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Blessings,
Richelle Bates, Queen Maddy's mommy
Comment by Richelle Bates [Visitor] · http://www.miracleformaddy.com — 04/10/08 @ 13:29
Sending our love - always,
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