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she is going home thursday off oxygen, NG tube, kinda wants a bottle but is still scared of it. shes off all meds, gaining wieght , & is set to go home now but i asked to make a extra trial run just to make sure ;] i have a facebook so add me tons & tons of pics of amairani on it search eli corea or let me know your name if you cant kind me ;]
Ethan is sitting here trying to sing "Twinkle Twinkle Little Star". He had a fantastic appointment with his surgeon yesterday (Friday 3/2). His right lung has pretty much filled in his right chest. His diaphragm was still a little up but so much better than last year. A big bulge that was concerning was gone. Praise the Lord that his lung is growing. His surgeon explained to a resident that he had the worst Right CDH and that he was wasn't eligible for ECMO because of his size ...
We have had lots of things going on lately. We've moved into a new house. The move was easy and Axel loves the new place. He scoots everywhere with ease. Pulling up everywhere he can get a grip. His last check up with ECI nutrition said he had gained 1lb and 3oz. in one month. It might not seem like much but its better than nothing. He has been struggling with his weight gain forever now. His being more mobile doesn't help any either. Burning all those calories. Wish I could do that, lol. He's been ...
It's a terrible day, I've cried most of it....thinking that it's the last day my little girl will be here at home, the last night she'll spend here with us. She will be going to Lincoln Memorial tomorrow for her service and be put in her drawer. There will be many pink roses laid there for her. I called the priest today and told him the entire story of Sienna and what happened to her because I needed him to know. I felt better after telling him everything. He is such a wonderful priest. He ...
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