So this will be a short version from yesterday since I am one day behind.
Connor had his usually busy day with therapy but also had the added doses of Solumedrol and Methotrexate that he gets each Friday. We did get to talk to Dr. Soep yesterday and talked about his blood levels and she had discussed them with Dr. Pachman in Chicago and we are now adding Cyclosporine to his daily meds. The standard to treating JDM in the beginning is about the same for everyone, steroids and some chemo, when this does not work we were told there are several options left but the decision which way to go can differ from doctor to doctor. In our case we were lucky because both Dr. Soep and Dr. Pachman agreed to follow the path with the Cyclosporine. It would be hard on us if the two doctors we love were not in a agreement because it would give us the added pressure in regards to who we should follow.
My concern with the Cyclosporine is just one. As one of the side effects it list loss of kidney function. The Steroids are the ones that affect the liver so this is closely monitored and now they will have to closely monitor the kidney since both Connor and Alexander were born with only one. So no back up there as most of us have two. They have just one, so Connor does not have wiggle room on this one.
Connor also will be measured for a wheel chair now on Monday or Tuesday and according to the gentleman I talked to it gets as detailed as to picking out a color. Who knew? Oh, and last week Connor had casts taken from his feet and lower leg for some special boots that are made for him and he was able to choose a design and picked Spider man. So you see no more boring medical equipment for the 21st Century :)
We had two huge highlights yesterday. For one Child Life set in motion last week a exception for Alexander to come and visit Connor on his floor and even to get to stay in his room with him. He was so happy and excited as was Connor. He even got his own name tag made with his picture on it and as a name it read 'Goof Head'. So Connor wanted a visitor pass as well and his name read 'Silly Head'. The two girls from Child Life sat down and played with Connor and Alexander and had them perform some surgeries on some dolls they brought with them. They got to set IV's and put in a medi port. Plus take blood which they both seems to enjoy :)
And then most of you know the biggest highlight for them but I believe for Ron and I as well was the most anticipated arrival of Oma & Opa. Alexander has not stopped smiling since they came out of Customs.
It was a long day for all of us but we cherished having the 4 of us together in Connor's room for a couple of hours and then have Oma and Opa there as well later that afternoon. Ron took over his shift and will stay with Connor until Monday or Tuesday and my Mom, Dad, Alexander and I got home at 9:30 PM and pretty much went straight to bed.
More on today's day will come on a later post.
Hugs,
R A C A
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