Sorry for the WAY late update however here it is :
We were able to go home on 12/08/14! But this time we brought home some extra equipment then when we came in. She has been dropping or holding her breaths while she sleeps. So we came home on the oxygen and monitor. This way we will know if she decides to hold her breath again. She is still on the feeding tube and feeding great! She is on the 27 cal count and feeds all day and night at 27 ml per hour. Any more she can not keep down. We have also taking her off the Keppra (anti seizure) and she is currently on Ativan and Trileptal. She developed a horrible rash and come to find out she was allergic to the Keppra. So need less to say she is very sleepy- and talkative! Haha
On Monday (12/22/14) we have a swallow study to help us show where her fluids are going. We were worried that she has been aspirating. And why we are finally doing it now is because she is finally strong enough! She weighs in at 11lbs 14oz!!! The fattest she has ever been!! :) doctors are extremely please!! This means that we can get her g-tube surgery!! Surgery is scheduled for January 23rd at 6 am. So please keep her in your prayers.
Physical therapy has been going great! Now that she has fatten up she is wanting to do more! Our plan is to have her roll by her first birthday. Very do able since she is almost there.
I'll try and update more often. Thank you for all the support!
Pic was before going back to the hospital (during thanksgiving) - thanks uncle Bronson for catching this great shot!