Thursday, May 15, 2008

What next?

Kids with Williams syndrome have a higher risk than normal for kidney problems, so at the recommendation of the Williams Clinic, today Amina had a renal and bladder ultrasound. Normally, I wouldn't worry, but for every other appointment and test that we've had that was supposed to be just 'precautionary' (neurology, opthamology, chest x-ray, MRI, genetics, FISH test etc.) we ended up with something wrong. Supplement that with the fact that she's been suffering from constipation for almost her entire life, I'm a little scared about what they might find. Keep her in your prayers!


Gina said...

Hi Ginneh,
I love your BLOG!!! My daughter has WS also(She is four and a half) and we live in Philadelphia too. Please feel free to contact me at
Gianna also goes to CHOP and just recently Dr. Kaplan did her yearly exam and feels she needs an MRI to rule out Chiari. So we are going through that process now.
Amina is just so adorable! Hopefully we'll chat soon!

Perrin said...


My name is Perrin...I saw your email on the WS email list. My daughter, Maggie, just turned 1 this week, and was diagnosed with WS about a month and a half ago. I hope you don't mind me checking out your blog.

Amina is so cute! And I have to say that I absolutely love your sense of humor :)

We'll be keeping Amina in our prayers, and hoping the ultrasound results are good.


PS - Maggie's blog, if you wan to check it out:

Julie said...

Hi Ginneh,

I found your blog on the list serve. Amina is just precious. I read your comment about her being constipated. When my son Noah who is 2 turned 1 we put him on pedia sure w/fiber. He only goes once a day but if he drinks it without fiber he has issues. The fiber really helped. Hope this info helps you. Take care.

Michelle said...

Hi Ginneh!
My name is Michelle, my daughter Ari is 4 with WS. I love your blog! What a beautiful family you have! Looking forward to hearing more about Amina and the rest of you! xoxo
ps...our blog is