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Thursday, February 4, 2010

smiles for mommy

I just got the most amazing note from Averys teacher in our communication book! Here is what it said (prompted by me writing to tell her about the new S sounds)

"Yay, I too have heard the "S" Its so much fun to see how proud of herself she gets when we are so happy about something. Very cute! Also, I've heard 4x the word "uh-oh". this is such great practice and I think fun for Avery. We do lots of practicing with silly sounds. Avery was ON ON ON today!! All of us noticed quite an increase in babbling about everything, more compliance, eye contact, willingness to work longer. Nice to see!"

AHHHHHHHH! This is so fabulous.

So, remember how the new and improved neuro told us about cerebral folate deficiency? And that it mimics Rett? And that for some girls with only a clinical Rett diagnosis but a negative genetic test, it has improved their symptoms? Amazing right? And even though Avery has a positive test, Dr. New said lets try it and see! He said because hers in an unreported deletion we cant really rule it out. And now all this speech!! wow.

I shared this info with an awesome mommy I met on a message board for kids with delays-her daughter has some Rett-ish symptoms and she was tested for it-negative. She has been on folic acid now for a week or so and there has been a lot of progress! Let's all hope this is the key for them!
Thank you Dr. New and Improved!!

2 comments:

wowgreen dave said...

Is that folic stuff working?

The MacDonald Family said...

That is so amazing!!! I'm so glad it's working! Can't wait to hear about more progress!!!