Sorry I let the whole day slip by me without posting anything. Busy, productive day! My parents were over for a while today like most Sundays. Then I pulled kid things from the attic that we wont be needing and Id rather it go to a new kiddo. Then we watched Gods Not Dead together. Then I spent some time playing dress up with the doll baby, aka Everly! The pics below are the four outfit changes today. Thats about her limit and you can even tell which pic below was our last just based on her expression. Im not kidding when I tell you that I honestly think she enjoys her dress up days just as much as I do. Anybody notice anything different in the pictures? Yup, the tube is out. She didnt do it; the reflux and choking caused her muscles to send the tube flying out. But reinsertion was a breeze this time. Yay for little sweet pea! With mention of the tube, thought I would answer the one question that is asked most often: why dont we get the g tube surgery? Months and months ago, our cardiologist went over the dangers for her and her physiology. It is different for everyone. We take it seriously and there are many scary what ifs that we are not comfortable risking at this time. We are open to discussing it...as we will be in a couple of weeks...but ultimately we need to make the decision we feel is best for Everly. Our doctors are great and support us and the route we have taken thus far with regards to the surgery. **Many children with Trisomy have and do get the g tube surgery and are able to be extubated with no problem. But some so have problems and we cant be guaranteed that she wont.** Hope that helps explain it! Please pray for discernment in our decision making, wisdom for the doctors who will be advising us and strength from The Lord to be able to continue to safely care for Everly and her needs. Please lift up Everlys name in prayer that she will continue to remain healthy. Your prayers have been a blessing to us and have helped to keep her well.
Posted on: Mon, 20 Oct 2014 02:57:46 +0000
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