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Wednesday, July 18, 2007

Entry for July 18, 2007~ another update on my banana

Was in Omaha again Monday and then Grand Island yesterday. I've put 400 miles on my little car so far this week. Hannah and I both feel like we have walked 400 miles. She is passed out on the couch for the 2nd time today,and I am just mentally fried.
In Omaha we seen the feeding and growth team, includes 5 different doctors. She is 6yrs and 1 month, she weighs 14.2 kilos and is 100.5 cm tall(that is 3'3" and about 31 pounds) so she has maintained but not thrived at all. she is eating a very well balanced diet and on the pump 24 hrs a day. her formula alone is giving her 80 calories per ml and she gets 1400 ml a day, plus what she eats. They still cannot find any answers. She is going to have surgery on the 8th of August, they are going to put a button in her stomach for the feeding pump, so no more tubes up her nose. We will be there for about 2 or 3 days. Dr. Attard also talked about sending her to children's in Colorado. Do not know exactly when this will happen but it is in the planning stage now. They drew another 5 vials of blood and then we were on the road for our 3 hour drive home.
Yesterday I took all 4 kids in for their checkup and cleaning at the dentist. all went well. Hannah has gotten in a couple of her 6 year molars and it is causing some problems, Her little baby teeth are so crammed in there they are cricked. there is just no room. so we got some work to do there too.
Only 1 more month till school starts so getting all ready for that Anthony will be attending preschool this year at the public school, where does the time go...


Laurel said...

I'm part of the Undiagnosed/SWAN group. Just wanted to thank you for sending the link to this in your post. Our daughter is 4 years, 9.5 months, 25 pounds, 37"! She has never been on a feeding tube...she's just always been TINY! We adopted her at the age of 25 months from Kaliningrad, Russia. At that time, she was smaller than her new 8.5 month old brother--adopted at the same time. She was 15.5 pounds, 28" in early Nov 2004...the size of a thin 6-9 month old. Duncan, at 8.5 months, was 24" and 18.5 pounds...a touch short, but pretty average in weight. I look forward to reading more about your "adventures"! Our blog is:
if you care to read about Gabby & Duncan. We are doing a gluten free diet and growth hormones.

Blessings, Laurel