I voted
We left home for Kansas City & CMH at 4:45 am today....her appointment was at 10:15 so we were allowing ourselves some time to stop. Turns out we made it in an almost straight shot - the kids went back to sleep so it was just me & my Mom & the sunrise. Stopped off in Gardner to kill some time (yay...Walmart was the only thing open. Err....) and then we hit the road again and got to her appointment 20 minutes early STILL. Dr. Wicklund was in 5 West today though instead of the clinic, so we then hiked across the hospital and got where we needed to be. The doctor was VERY happy with how well she's doing right now, in the way of her activity levels, etc. We go back up on November 15th, and will be there for a week. It's going to be one damn long week, me & the boys are going to be up there alone with Gabby, where before either my Mom's come with me or the boys stayed with someone else. Should be interesting. And by interesting, I mean someone shoot me.
If they can't get her coumadin issues figured out in that week, from there we go to Denver Children's Hospital. They have a larger hematology unit there, and some drug trials come through it. Wicklund isn't sure if she would be a candidate to take part in any trials because of her valve, but, if the skin necrosis comes back with the coumadin again, our hands are rather tied - we all already know that the lovenox isn't a long term option. This entire process if fucking terrifying. We're working with a shortened lifespan already, but at least they're hoping for her to get to early adulthood. I'm so scared of, in trying to lengthen that estimate, we'll wind up shortening it some how. I wish I could get some kind of concrete anwser to.....well, anything? (the next place in our safety net, after Denver, is in Minnesota. I'm praying we can just sort this in KC)
Gabby got mad and busted me in the mouth today in a temper tantrum - if we hadn't been trying to get back to Wichita in time to vote, I would have gotten stitches in my lips....top and bottom both had a tooth go about half way through. My mouth is SOOO swollen now, I don't want to eat
anything but popcicles! Ugh. Fcking BLOWS.
 
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that's not good hopefully this next trip sorts everything out for you and your family. Best of luck!
♥ I hope everything goes smoothly at the next visit. and Ouch! I normally just get head butted in the nose when trying to calm one of them down think we'd learn by now little kids pack a good hit.
