Friday, December 19, 2014

Late update!


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! 
While in the hospital - showing off the start of the rash. 


Tuesday, December 2, 2014

12/01/2014

We are back in the hospital! :( Raelin was having a continues seizures for about an hour straight. I have never seen her act this way while seizing. It was a very scary experience. However we have her on oxygen and she hasn't had one since last night. The only major concern we have is that she has had a temp. She does have a viral infection and the dr did say that it's very normal for epileptic children to seize before the temps hit. So that was good news that it didn't start out of the blue. But we do want our little peanut to be feeling better and not the yucky feeling. 

Thank you for the prayers and positive thoughts. Will update soon. 

Our Sweet Sleepy Baby :)