Unreal

It's unreal that I've gone this long since updating....I guess it's good to know that if things were bad or we were in the hospital we would be updating more. Things are still the same...same issues, no word from Columbus yet. I know that there is alot to organize but we need a date...there is so much to figure out once we get date that I know my anxiety will be better once I get that date. Kyle is still having the same issues..although since last week he's been struggling with his lung issues and it's concerning. His iron levels are really low and it seems like he's losing blood from somewhere, we have given iron infusions and he's not getting the bump we need from it. His energy level is low and the anemia is clearly causing him some issues. We head back to MMC on the 18th for a scope (to try to find the source of the blood loss) and also to insert an NJ tube (which will make Kyle very angry when he wakes up and has that in his nose) the hope is that we can thread that down far enough into his new anatomy and we can try to feed him that way. This will give us a good look at what his bowel is now doing since his surgery. We can not feed thru the stomach but are so hoping we can if we can get the tube down far enough.

The last week was spent with amazing friends that traveled so far to see us! It was probably the best week we've had in years. I have to say that for weeks I hoped that Kyle would stay well enough to just get thru the week...he did amazing! He did far better then I could have hoped or expected! We were all spoiled rotten and I have to admit it felt really good! :)

Now it's back to reality and trying to get Kyle ready for Kindergarten...oh....that's a blog for a different day.

XOXO
K