J Appt. 3/15/10

Well, I'm so thankful that I did not have to post more over the weekend. That means that everything went really well with the infusion. The line still seemed a bit sluggish starting on Sunday, according to the nurse, but I think the increased heparin definitely helped. This was our easiest infusion so far.

Yesterday we had our appointment at Scottish-Rite. It can make for a long day of waiting, but we were prepared with books, DS, games, etc.....D was able to spend the day with Aunt Cheryl. Since it's Spring Break, he was going to have to come with us. That made the entire process much simpler.

The doctors all had good things to say about J and his treatment. A big highlight for us was that J made a 52 on his CMAS test. It's a strength test that the OTs/PTs administer every visit. This is the first time J has been able to get the full 52 points. He was able to do all of the types of sit-ups that they tested, plus he was able to keep his chin raised to his chest for the full 2 minutes. Those are the areas that he hasn't been able to do as well before. We were all so excited for him. There was some cheering going on in our room as we celebrated. It was wonderful having some measurable improvement during this process. Also, our doctor said she was VERY pleased with the progress J is making. She could definitely see that the rash is decreasing. That was such wonderful news to hear. During our last two visits, we've walked out of the appointment not feeling so great about things, so this was a fantastic change of pace.

The port has been approved for J, as I've posted previously. Now we're just waiting for the two hospitals to coordinate. It will be an outpatient surgery, most likely in the next week or two. We have a bit of downtime through all of this. Paul and the boys are going camping on a Father/Son camping trip with other guys in the neighborhood the last weekend in March. The doctors said that should be no problem to keep that on the schedule. We are so thankful that the doctors not only "allow", but encourage us to keep letting J be a kid! That really helps the morale around here :). The next new thing will be the IVIG infusions. J will be admitted again over the weekend of 4/9-4/11 for his first infusion. They will double up the Solumedrol and the IVIG, so the infusion will be about 12 hours each day. They start the IVIG medicine really slow, to help minimize the side effects. Plus they start with benadryl and tylenol, to counter the head aches/miserable feeling. Dr. Nassi said she has administered this medication to many kids, with only one extreme case of headaches. She had to tell us the possibilities, but she said they are more common in teenage girls or ones who already deal with headaches/migraines. Praying, definitely, for no complications with the IVIG. As we know more about the specifics about the surgery, we'll let you know!

Thanks for all your prayers!