Shayla is doing good she is still fussy off and on but part of that is just baby stuff and you can tell. They just did our last echo as in patient and yesterday they took the xrays that ortho wanted of her spine and they will have our meds here today. we have been using our equipment since yesterday and she did really good with it we are to be discharged Saturday they pull her line out Thursday. The only reason we aren't being discharged tomorrow is that the Ronald McDonald house is doing a power outage on Friday for 14-16 hrs at night and our stuff has to be able to be plugged in and she has to be on her bi pap for at least 8hrs at night then Friday the 13Th we have to go and stay in a hotel and move over all of our equipment from the house to the hotel and back. We are just so happy that we finally get to get out of here first time in 13 months which is just the time we spent in Seattle children's hospital hopefully in 2 months we will be able to go back home i can't wait i haven't seen home in soo long i forgot what it looks like. I am so sorry to here about Gracie it is kinda hard to swallow since it could have been any of our babies. My heart goes out to her family and friends.
Daniel is doing good they have trialed him off ecmo a couple of times but it hasn't worked so far hopefully in a few more days they are going to try again and hopefully he will make it off this time he is more awake now then he was and is not in bad rejection anymore they say he still has some rejection just not as bad. please keep praying for Daniel.
with love the Wilson family
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