I'm sorry for my short post yesterday, I know that it left some questions. You know I have always tried to be upbeat and positive...if you've followed my Share blog I hope that you have seen that. I have my moments of feeling beaten down but I try to keep them few and far between. Yesterday after the second conference call in a week with Pittsburgh I felt lost. While I wasn't looking forward to Pittsburgh, I guess I didn't realize until yesterday how much hope I had put into it. I haven't been sleeping well for the last few weeks (oh who am I kidding how about the last 4 years ;) ) and I know alot of it had to do with anxiety over the move. But I was pushing past all that because I so *hoped* that this would be a quality of life improvement for Kyle. After talking to the Dr in charge at Pittsburgh she feels strongly that Kyle needs a complete GI work up in Cincinnati before we attempt anything else. Clearly there are other issues involving his whole GI system and it would be dangerous to push him at this point. I have to say I totally agree, I really do...I had major reservations about Pittsburgh, the word surgery had been thrown around and that made me nervous in itself...Kyle's already had 4 Major stomach surgeries, another one would be tough. I do not want surgery number 13, at this point. So maybe going to Cincinnati first could prevent that??! Maybe that's my positive thinking again, we won't know until we get there. My mood yesterday really wasn't so much the fact that Pittsburgh right now is out, it really was more of the loss of my hope for some relief for Kyle. The pain and the gagging is taking a toll on me, nice right...imagine being Kyle I can't begin to understand how he feels. But as his Mommy...it's been 4 years of pain...and it's exhausting. So I promise to be back to my positive and go get 'em self soon...really...but for now I'm honestly sad because I would do anything for this sweet, brave little boy and there is nothing I can do but comfort him and keep pushing ahead.
Love
K
I had to attach this picture...Kyle made a pumpkin pie a few months ago with Nurse Meagan...he was so proud of that pie!!
4 comments:
You know that you don't have to put up a front for us. You are more than allowed to have those days. I am here for you in whatever capacity you need! I hope you already know that :) Love the pic - i bet it tasted delish!
Hugs
carissa
Oh sweetie you don't have to positive and upbeat all the time, if you were I'd think you were nuts! I'm praying for Kyle and hoping everything works its way out with these visits. Love ya!
Kate-
That is one beautiful looking pie next to one handsome lil' boy.
You go ahead and let the stress of staying positive go. You've lifted so many (myself included) up when they've been down, please let us do the same for you.
Hugs,
Lauren
If you end up going to Cincy, let me know. I am only about an hour away and would love to come up and be with you and Kyle. Hang in there. I know it is tough, but you are one tough cookie! :) No need for fronts either... After all you guys have been through, it is okay to admit to feeling beaten. Heavens, anyone would have felt that way long before you. Hang in there sweetie! Hugs to you and Kyle and the rest of the family as you weather this storm.
Love and Hugs,
Aimee
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