Ok. So. Edward has his G-tube surgery on Friday. Thursday we have to make a trip up to Seattle for a spine appointment and his endocrine appointment. Last Thursday we had three appointments; pulmonary, upper GI scope, and pre-op. His upper GI seems to be well. Pulmonary/Lungs said that he needs a sleep study ASAP. That is scheduled for Nov. 7. We all don't think he is getting enough oxygen at night. And she recommended we go see an E.N.T for his nasal anatomy. (One side of his airway is pretty closed.)
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| not the best picture 17 months |
BUT here is a video of Edward rolling over. I do love him very much. Even though the weight of the constant problems overwhelm me, I wouldn't trade it for the world. Even though I have to remind myself that, yes! Jesus does love me, I wouldn't trade him for the world. Even though the thought of the pain from the past 22 months (from the moment they told us he had Trisomy 18 and wouldn't make it, to his G-tube surgery) could send me to instant tears, I wouldn't trade him for 1000 "healthy" babies. He is God's
LOVE given to me in a not so 'normal' package. I wouldn't trade God's tangible love for anything.
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| my love |
https://vimeo.com/50644953
I haven't had a chance to read your blog to it's entirety but I found it while doing my annual Google search on FSS and wanted to say that your son is absolutely adorable! I am an 18 year old female who has FSS and just wanted to offer my email address:
ReplyDeletekarlierichelle@gmail.com
I don't know how much contact you have had with other FSS parents or kids (even though I'm technically an adult, I might always refer to myself as an FSS kid,)but I know that I like to talk to other people with insight to my situation. The more, the better! It appears as though your son and I have a lot in common medically. If you aren't interested in corresponding, that is fine too. Just thought I would offer but I know your plate is probably quite full!
Best of luck with all the struggles to come, and know that overcoming them will one day be worth it. I'm sure that Edward will one day be a fine young man. :)
-Karlie