Okay so I called to get the update on Tu Tu bun's test. He had a Chromosone Micro Array analysis. Basically it is a more indepth look at his genes. It will detect deletions and duplications on a micro level. So far our genetic counselor said that there are no results. Of course she will be leaving today for vacation until June 23. AHHHHH!!
She told me that if I can't wait to call back to one of her co workers. Thankfully they understand that we want to know ASAP. He also had blood drawn at the same time for a CK or CPK. Which basically shows muscle damage. Alot of times children like Tu Tu will have an elevated level. Tu Tu has had two in the past, but now it is normal. This is great because it suggests his muscles are not deteriorating.
I also met another one of Tu Tus therepists patients who looks like him. Weird huh? But, he too was negative for a FISH test. His mom was not there, but she asked if she could give her my information. OF COURSE!! Like Tu Tu buns he lacks speech and has other global developmental delays with no reason. He has the same physical appearance in his face - ears, underneath eyes, nose and mouth.
UPDATE- Here are pics from our fun in the sun after school got out. Tu - Tu is sucking on the paintbrush that was used to paint the fence--with water.
This is a pic of the water toys in the yard. The splash ball is in the rear of the pic.
Finally, a picture of worn out Tu Tu buns ready to go inside. He is so sleepy here.
Wednesday, June 11, 2008
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2 comments:
Hey Suze! Your kids are getting so big! I love your blog! I'm going to add you to my friends and family list (so far only one name besides yours!). See you soon - can't wait!
Paula
that is some gorgeous red hair on that kid! :)
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