So the day after the last post Grayson was admitted again on JULY 5th and was in until the 19th I believe was the day we were discharged, This time he has grade 1 GVH again of gut and skin. So we switched everything to IV , steroids and his cyclsporine and he is doing soooo well we are able to do it at home so that makes it 100 x better :)
We have been tapering down his steroids he was doing so well we were going 1 mg every 4 days, until we got the night dose completely off, we started at 8 MG morning and night. Once that does was gone we started the morning dose but are going much slower. Since we have failed tapering this does so many times
:( so right now we are doing 1 Mg ever two weeks. Which he seems to be handling pretty well, his poop got a little loose (not watery which is a sign of GVH) and his skin was red (but not splochy which happens with GVH) Which at last clinic apt on 9/5 his cyclsporine level was pretty high which would make some of the side affects happen, his level was 520 and should be 250-350 so they went down on his dose and Tuesday it had only gone down to 499. So they went down again and he doesnt look as red and his poop is going back to normal LOL I'm sure you just love me talking about poop but that is party of our lives we are obsessed with poop and gaining weight LOL.
He is progressing so well in physical ways, social ways ect.. you can just tell he is doing so much better and feels so much better too! He does not have the stranger anxiety as bad as before, hes becoming much more trusting of others, hes talking signing, blowing kissed, waving, scooting on his bum (they don't think he will crawl due to his line in his chest if he lays on it, it hurt him) he is also starting to take steps holding on to our fingers and even some along the couch. The big thing we are working on is transitioning on to his tummy, and siting up from laying on his back and standing up from the floor. Its crazy because he went from 6 months old when he got sick and was stuck at the mile stones he was doing up until about 2 months ago and since he has felt so much better he is making up for all the lost time!!
He also LOVES shoes he has gotten a few more pairs lately and wants them on all the time :)
Hes doing so well its amazing, this is the longest we have been home since he was first admitted December 17th 2012. On September 19th will make it 2 months we have been home!!
Please keep the prayers coming they sure have been helping!!
Love you all!!!!!!!!!!!!!
Oh we go back to clinic on the 19th
No comments:
Post a Comment