Friday, March 7, 2008
Correction...
Since Lydia took 3 oz after Dr Alberty left today, and then...drumroll, please: She took a full 4 oz at her next feeding...Dr Momma and Dr Daddy decided that we should hold off on the feeding tube to give Lydia a chance to see if she might catch up on her own. The nurse called Dr Alberty to confirm, and he agreed. Please root for her to continue successful feedings!!
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Hi! Just came across your blog. I am the mother of a daughter with Rett Syndrome. I have no idea if your daughter might be battling this, but as I read your post, something stuck out as familiar -- her being unpredictable.
One thing to consider with the eating....your daughter may not be able to coordinate nose breathing. Just try and eat or drink while holding your nose and you will see the difficulty and panic that sets in.
Sometimes, the coordination is there, sometimes not...
We went through an occupational therapist and she taught us how to rev up Sarah's system from a sensory perspective which really helped her be able to eat/drink when it was time.
I noticed one of your posts said she ate well after a massage, so that might be a tip off that the eating problems are sensory related. The reason for the sensory issues may remain unknown for a long time....
also, if mito comes back as a problem, do not stop there. Mito can be a secondary reaction to another issue. In my daughter's case, she has mitochondrial dysfunction that is being caused by her Rett Syndrome....
my email is ingridATgirlpower2cureDOTorg if you need to connect on any of this with me...good luck!
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