Hannah is feeling a lot better now...still coughing some. I think I got it worse than she did but that is good :) it felt good to get back to church today although it was weird this morning not to take Hannah. the nursing agency screwed up again and molly came in late so she stayed til we got home from church.
Her seizures are back to her "normal" ones. we have increased her klonopin again. usually that makes her really sleepy but it's almost like she is getting immune to it :( we don't have a neuro appt til June. the increase in all her meds is making her kinda drugged during the day just not sleeping like she usually does.
we saw the GI dr last week, I really like her. Hannah's weight was up to 39lbs! that is way too much for her small body :) She is only 40" tall and has a very small head. (on the wii fit board she is a perfect weight ) So, I took her to the peds office to get her official weight, 38 lb 14 oz :) so now we had to decrease her feeding even more. Waiting for a call back from her about adding some protein to her formula. She already added some extra fiber since she is afraid she's not getting enough. She asked about the hiccups and I told her she had only had 2 major episodes since we last saw her. I told her about her gtube site getting red a lot lately. She thinks it's stomach acid and is afraid with some other symptoms that her nissen might be loose or udone. She had ordered an upper GI study when we last saw her but because of the all the bad weather I never had it done, so its now scheduled for the end of may. She added pepcid to her meds to see if it helped, not sure what though LOL
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