Day +78 - Happy Halloween!
Mike and I just got back from the RMH Halloween party and we had a great time. The day started with book club for Grace at 10:30 and then a spooky lunch at RMH, full of yummy mummy hot dogs, a jello brain, halloween cut-out tortillas, etc. Mike, Auntie Peeps, Auntie Katie and I all went and the Grandmas watched Max. Mike and I came back to the hospital for a while and after a nap Grace came over to see her brother and show the nurses her costume. We then left again and the Grandmas returned. We had a great time doing the RMH scavenger hunt and trick or treating. Grace got so much candy and so many treats it will last us all year. We have said it many times, RMH is so amazing and I do not know what we would do without it. We would be so depressed and lonely, and Grace would not be handling this awful situation so well.
As for Max, he "wore" another Halloween t-shirt today and donned his Frankenstein headband for visitors. For most of the day we were in very high spirits, and as I told the nurse, I thought we deserved a "denial day." The fun is over now, however, and as Mike and I walked back to the hospital we walked back to reality.
Max had a quiet day with some small improvements. His blood gases have been up and down today, none of them terrible. He stooled a couple of times and his abdomen was 1 cm smaller than yesterday. His weight was down .8 kilo and he did a great job getting rid of some fluid. We were somewhat excited for all of this, but then it hit us that if the GVH doesn't go away none of the other progress matters one bit. His skin looks a tad better after the four doses of ATG. We have to see some dramatic improvement in the next few days.
Thanks so much for all the recent guest book entries, emails and care packages. Each note, each gesture goes a long way to raise our spirits. Thank you.
--margaret
As for Max, he "wore" another Halloween t-shirt today and donned his Frankenstein headband for visitors. For most of the day we were in very high spirits, and as I told the nurse, I thought we deserved a "denial day." The fun is over now, however, and as Mike and I walked back to the hospital we walked back to reality.
Max had a quiet day with some small improvements. His blood gases have been up and down today, none of them terrible. He stooled a couple of times and his abdomen was 1 cm smaller than yesterday. His weight was down .8 kilo and he did a great job getting rid of some fluid. We were somewhat excited for all of this, but then it hit us that if the GVH doesn't go away none of the other progress matters one bit. His skin looks a tad better after the four doses of ATG. We have to see some dramatic improvement in the next few days.
Thanks so much for all the recent guest book entries, emails and care packages. Each note, each gesture goes a long way to raise our spirits. Thank you.
--margaret
posted by Mike Ciacciarelli
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