Post by alisonzmom on Nov 23, 2008 21:22:23 GMT -5
But things have finally settled down to a point where I actually have time to post!!! 
It was a chaotic summer..... spent most of it running between Buffalo and Boston, MA - about 8 hrs each way. My cousin lost a second son to Adrenoleukodystrophy in late September, just a year and half after her son AJ's death of the same genetic disorder. The whole family has been totally devastated by this tragic loss but we've all pulled together to help my cousin and her only remaining son who is now 9. He has shown signs of progression of this disease which he also has but man, it's scary how fast things change with this disease. The truely tragic part of it is that if they had been diagnosed at birth through universal newborn screening, she would still have all 3 of her beautiful boys. Let me step up on my soapbox for a minute!!! If your state doesn't have a very comprehensive newborn screening program - contact your state legislators, senators, etc! So many lives are lost that with early treatment wouldn't have to happen! Okay, stepping off my soapbox!
On a happier note, Alison is doing wonderfully!!! She's now 5 1/2 years old and in kindergarten. She just loves school and has a rough time on the weekends because she just doesn't understand why she can't go to school ( yes, I'm dreading the four days off of school for Thanksgiving!!! ). She's in full inclusion - the only kid w/ DS in her school. She's doing well and keeping up w/ the academic side of things pretty well. She starting to read a bit - we look for books with lots of her sight words. She's struggling a bit with writing but that is coming along nicely too. Where she really shines is in her speech. She is a chatterbox! I think the best thing to have come out of her 6 months in the spica cast last year was that because she wasn't putting energy and effort into refining and developing gross motor skills, her speech just took off! Her vocabulary is quite extensive and she is speaking in complete sentences almost all the time. She has also developed a love for "Knock Knock" jokes. They seldom make much sense to the rest of us in the house, but you should hear how she laughs at herself!!! She continues to amaze us each and everyday!
Alison's sisters are doing well also. Caitlin is now in college - Niagara University - and well, as she puts it, she doesn't completely hate it. I'm not sure exactly what to make of that particular statement.
Sarah's in 6th grade and loving the move up to Middle School. She is doing extremely well in her classes and is involved in several clubs and doing at least one sport a semester. She's still very into Tae Kwon Do and will be testing for her Black belt in April!!!
Me, well, I'm exhausted keeping up with everyone else's schedule plus my own!!! We did get to the beach alot this summer and did lots of hiking around Boston and here through the fall. Today we all went skiing ( Yup skiing!!! ) for the first time. Alison had a ball!!! A friend of ours is the instructor for the adaptive ski program at the place we went to. She's been bugging us for a couple of years to let her teach Alison to ski and well, we finally relented this year. The look of sheer joy on Alison's face the first time she made it down this little bunny hill by herself was absolutely priceless!!! Something I'll never forget that's for sure. I hadn't skied in about 20 years and had so much fun. I know I'll be very sore tomorrow but it will be so worth it.
Well, that's about all. Here's the official kindergarten Picture.
Barb
It was a chaotic summer..... spent most of it running between Buffalo and Boston, MA - about 8 hrs each way. My cousin lost a second son to Adrenoleukodystrophy in late September, just a year and half after her son AJ's death of the same genetic disorder. The whole family has been totally devastated by this tragic loss but we've all pulled together to help my cousin and her only remaining son who is now 9. He has shown signs of progression of this disease which he also has but man, it's scary how fast things change with this disease. The truely tragic part of it is that if they had been diagnosed at birth through universal newborn screening, she would still have all 3 of her beautiful boys. Let me step up on my soapbox for a minute!!! If your state doesn't have a very comprehensive newborn screening program - contact your state legislators, senators, etc! So many lives are lost that with early treatment wouldn't have to happen! Okay, stepping off my soapbox!
On a happier note, Alison is doing wonderfully!!! She's now 5 1/2 years old and in kindergarten. She just loves school and has a rough time on the weekends because she just doesn't understand why she can't go to school ( yes, I'm dreading the four days off of school for Thanksgiving!!! ). She's in full inclusion - the only kid w/ DS in her school. She's doing well and keeping up w/ the academic side of things pretty well. She starting to read a bit - we look for books with lots of her sight words. She's struggling a bit with writing but that is coming along nicely too. Where she really shines is in her speech. She is a chatterbox! I think the best thing to have come out of her 6 months in the spica cast last year was that because she wasn't putting energy and effort into refining and developing gross motor skills, her speech just took off! Her vocabulary is quite extensive and she is speaking in complete sentences almost all the time. She has also developed a love for "Knock Knock" jokes. They seldom make much sense to the rest of us in the house, but you should hear how she laughs at herself!!! She continues to amaze us each and everyday!
Alison's sisters are doing well also. Caitlin is now in college - Niagara University - and well, as she puts it, she doesn't completely hate it. I'm not sure exactly what to make of that particular statement.
Sarah's in 6th grade and loving the move up to Middle School. She is doing extremely well in her classes and is involved in several clubs and doing at least one sport a semester. She's still very into Tae Kwon Do and will be testing for her Black belt in April!!!
Me, well, I'm exhausted keeping up with everyone else's schedule plus my own!!! We did get to the beach alot this summer and did lots of hiking around Boston and here through the fall. Today we all went skiing ( Yup skiing!!! ) for the first time. Alison had a ball!!! A friend of ours is the instructor for the adaptive ski program at the place we went to. She's been bugging us for a couple of years to let her teach Alison to ski and well, we finally relented this year. The look of sheer joy on Alison's face the first time she made it down this little bunny hill by herself was absolutely priceless!!! Something I'll never forget that's for sure. I hadn't skied in about 20 years and had so much fun. I know I'll be very sore tomorrow but it will be so worth it.
Well, that's about all. Here's the official kindergarten Picture.
Barb
I can't believe she is so grown up.
Her pic is so cute 
