Weekend Update
We had a pretty good weekend here in MN. It was strange waking up Saturday with no appointments to go to. Max was stuck in the room all weekend because of his cold, but we still managed to have some fun with Grace. Saturday Mike and I took her to Target - and you know how much Grace and Mom love Target! Grace entertained herself by trying on a million sunglasses, hats and purses while Mike and I bought some stuff to organize our room.
Sunday Mike, Grace and I went to the Mall of America and Grace rode the rides. A picture of Grace riding a shiny pig should be coming up soon . . . We then came back to the RMH where a local MCDonald's had a little fair for the kids in the courtyard. They had games and prizes and then made dinner for everyone. A guy who was working the fair was actually a former RMH resident who is now healthy. I have visions of helping out at RMH with Mike, Grace and Max when all of this is behind us and Max is much healthier.
Our new room became available a day early, so we got to move in last night. Grace was supossed to watch a movie in her friend Kendall's room while we moved but she came down with a fever and now has to stay away from everyone. She was so disappointed, but we knew she was sick because she didn't leave the bed to check out the new place.
Speaking of the new room ... it is awesome. It is a suite with a kitchenette, living room area with fold out couch, huge bathroom, bedroom (that sleeps 6), and walk-in closets. Grace has cool bunk beds. There is a desk as well, and we can now spread out and feel more comfortable for the next few months. The first room was nice, but this is much newer and bigger. It feels much more like a home than a hotel.
Today Max had an EMG, which tested the nerve conduction in his wrists for carpel tunnel syndrome, a common effect of Hurler Syndrome. Grace and I stayed at home while Mike and Grandma took him. They stuck electrodes on him and shocked him with electricity! Mike said it was horrible. He does not, however, have carpel tunnel for now. They will monitor it post transplant, as many Hurler kids continue to have joint and bone problems even after a successful transplant.
Grace still had a fever this morning so we called the social worker who gave us a Dr's number. We called the Dr and she couldn't see us today so she advised us to take Grace to the ER. She shows no other signs of illness besides the fever and a little stomachache. We just got back and they said everything looks normal. We just have to watch her and use good handwashing. I don't think it is possible to wash any more than we do but we will try!
If anesthesia clears Max tomorrow he will be in the OR for a long time for all of his procedures and surgery. He will stay overnight for observation. If the MRI shows he does not need a shunt he will be admitted to the BMT unit Friday and begin chemo Saturday. Say prayers that all goes well!
Love, Margaret
Sunday Mike, Grace and I went to the Mall of America and Grace rode the rides. A picture of Grace riding a shiny pig should be coming up soon . . . We then came back to the RMH where a local MCDonald's had a little fair for the kids in the courtyard. They had games and prizes and then made dinner for everyone. A guy who was working the fair was actually a former RMH resident who is now healthy. I have visions of helping out at RMH with Mike, Grace and Max when all of this is behind us and Max is much healthier.
Our new room became available a day early, so we got to move in last night. Grace was supossed to watch a movie in her friend Kendall's room while we moved but she came down with a fever and now has to stay away from everyone. She was so disappointed, but we knew she was sick because she didn't leave the bed to check out the new place.
Speaking of the new room ... it is awesome. It is a suite with a kitchenette, living room area with fold out couch, huge bathroom, bedroom (that sleeps 6), and walk-in closets. Grace has cool bunk beds. There is a desk as well, and we can now spread out and feel more comfortable for the next few months. The first room was nice, but this is much newer and bigger. It feels much more like a home than a hotel.
Today Max had an EMG, which tested the nerve conduction in his wrists for carpel tunnel syndrome, a common effect of Hurler Syndrome. Grace and I stayed at home while Mike and Grandma took him. They stuck electrodes on him and shocked him with electricity! Mike said it was horrible. He does not, however, have carpel tunnel for now. They will monitor it post transplant, as many Hurler kids continue to have joint and bone problems even after a successful transplant.
Grace still had a fever this morning so we called the social worker who gave us a Dr's number. We called the Dr and she couldn't see us today so she advised us to take Grace to the ER. She shows no other signs of illness besides the fever and a little stomachache. We just got back and they said everything looks normal. We just have to watch her and use good handwashing. I don't think it is possible to wash any more than we do but we will try!
If anesthesia clears Max tomorrow he will be in the OR for a long time for all of his procedures and surgery. He will stay overnight for observation. If the MRI shows he does not need a shunt he will be admitted to the BMT unit Friday and begin chemo Saturday. Say prayers that all goes well!
Love, Margaret
posted by Mike Ciacciarelli
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