Thursday, January 9, 2014

We were up most of the night, which I figured we would be since she decide to sleep a lot yesterday.. I feel better after talking to the doctors this morning... We haven't heard the results of the cystinosis test, but they also think that it still could be the fructose deficiency, and now maybe her body is finally able to adjust to the formula since she has been on it for a week... Or that her kidneys could of got and "injury" by being on the 27 cal diet... Thy explained that all the nutrients in the high calorie makes the kidneys work harder, and could of cause some muscle loss making the filter not strong enough to do its job... So now being on the 24 for a week, maybe her kidneys are finally strengthening... It's all to soon to tell... She did gain 4 oz this morning, making her weight (9.11), but for the first time in 4 weigh ins we lost 3 oz (9.8)... Everything is still up in the air since we don't know any test results but made me feel so much better that they wasn't trying to blame me... She did have her electrolytes checked again this morning cause her sodium went up... And they wanted to make sure the supplements wasn't to high.. But it did come down.. So we will be on them a while longer... One of our favorites nurses came in today and played some songs for her on her day off.. She got to play the bells and she loved it.. To hard to get a picture... We have had a great day.. Oh I almost forgot, her urine was at 12 yesterday, so that's good that it dropped lower.. But still high.. Thank you everyone for all the support.. We love you all