Bryce Adams
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Bryce our only son has been diagnosed with a fatal genetic disorder called Sanfilippo Syndrome, also known as MPS IIIA.

http://www.youtube.com/watch?v=_1W_Ad8n0Fc

"The journey of a thousand miles begins with one step..."

Today is DAY +824 post transplant

(2yrs 3 months 4 days post)

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  SATURDAY, JANUARY 03, 2009 08:09 PM, CST
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Click on this smilebox link to view some special photos from our Christmas time together.

http://smilebox.com/playBlog/4e6a63794d7a4d784e673d3d0d0a

Well it began as a snowy week with about 7 inches of snow but the second storm seemed to move on by with only about 2 inches of light snow that dissappeared on it's own early in the day today.

Saying a prayer that my Great great Aunt Ellen is peacefully dancin' in her new heavenly home.... we said our goodbyes this morning. I think she would be wearing her pink dress though, it brought out her wonderful glowing smile the last time I saw her.

Bryce had his clinic yesterday with Dr keuker and he is doing great. We are staying on the meds he has right now and Bryce weighed in at 41 lbs with the height of 27.6 inches. He certainly is growing! He sang some of his sing songs while we talked with the Dr and said hello to a few of his nurse friends. After clinic Bryce was worn out and he took a long nap. We go back to clinic in May here then of course we go to NC in late Sept, early Oct. We see his endocrinologist in April and his eye Dr in March. So still got the appointments to go to but they are spanned apart now.

Tonight Bryce was so cute asking to go to bed, he followed me into my room with his blankie tucked under his chin with no hands and looked up with me and sighed.... that was his way of saying he was ready for his sleepy time. Then he said goodnight to Daddy with a big huggie and I went to his room to tuck him in. He was so sweet about it. He has been so cuddly lately.

It will be nice to have others be able to get to know him now that his restrictions are less. I still find myself paranoid over illness though, it's a hard habit to break. It was nice over the holidays to see him and how he reacted to others outside the house... looking forward to the spring and summer months.

God Bless

Mommy Koren to Bryce

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If you know someone who would like to make a donation directly to Bryce tell them to make donations to: Bryce Adams Trust Webster Five Cents Savings 343 Main St Oxford MA 01540
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EMAIL AUTHOR
kaadams@charter.net

HOSPITAL INFORMATION
Duke + UMASS
Home Home
with our family
Webster, MA 01570
United States
 
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