Judo & IVIG Part 1

Today we are back at TCH for Connor's 10th IVIG Infusion and after looking at how many Methrotrexate (Chemo) infusion and Shots he had up to today we counted 31.

The irony is that none of this matters much if it helps him. I know our dream is for Connor to go into remission and be medication free but if this is what it takes for him to be better, and he can not function of medication then it is still better then other alternatives.

Today however Connor does have a heavy heart because yesterday his brother had the time of his life at his first Judo practice and Connor begged me to sign him up as well and I told him that as long as he is on medication this will have to be put on hold. Of course he thinks he can do it so I also told him he will have to get clearance from Dr. Soep and Dr. Pachman, which I don't think will happen.

Ron and I also agreed that as hard as it may be on Connor it is time for Alexander to have something he can do that is completely his one. He had to watch Connor having fun with his Hippo Therapy now for weeks and this will be a nice shift in attention for him :)

So, I am back after I took a couple hours break from writing due to talking to Dr. Soep and also having Connor's Therapy Assessment Appointment. Connor, as I mentioned does not feel well today and has not felt all that good for the last couple of days. I am not sure if it is due to the cold bug he was just fighting or something else. We saw Dr. Soep early today since she is only in this morning and then has to leave for a trip. So we did not have any Blood Test Results but just from looking at Connor and how he is feeling we decided to not change anything regarding his medication. There also is still some discrepancies on how to cut back so we would like to see Dr. Soep and Dr.Pachman/Dr. Curran to be in an agreement on how to proceed. Dr. Soep also did not lift Connor's spirits in regards to him doing Judo but she promised him she would talk to the Surgery Team who does Medi Ports and see what their approach is with contact sports and a port. Her only regards however was for the port and otherwise would have felt confident enough to clear him. His neck muscles are strong again as is his core body strength. Overall I think he is stronger then Alexander who is so skinny. There still is a 4 lbs weight difference between the two and for most people that look at our boys, Connor looks more healthy then Alexander...

There was also some more upsetting news for Connor because Dr. Biffel from Therapy thinks it is time to give Connor permanent Casts on both legs that he might have to wear for up to 8 weeks so we can finally stretch his feet and leg muscles and get them straight again. They would put a stretch on his feet and we would have to come in every two weeks to tighten the stretch and get a new cast each time. This is suppose to be done today after the infusion is finished and I so forgot about the boys busy weekend of Trick or Treating! Now they told me he can walk on them and that they are water proof, but what do they mean with walk? from one room to another or walk on the street and walk bigger distances? So I need to check on this when we go back to the 4th floor.

Due to him feeling to tired and yucky today we also regressed back to him using a wheel chair in the hospital today and of course that is an option again since we have his new wheel chair sitting at home. The only complain about a wheel chair is coming from my shoulder since it is heavy to push him - haha

I was also told that this means we have to travel to Denver every two weeks for a while and then I am thinking we have such a busy season coming up with Halloween,, traveling to D.C., Thanksgiving, Germany and Christmas and all this in Leg Casts???

But to ask them to delay it until January means putting progress on Connor's feet on hold for two months...

I also asked them about the Botox Injection Dr. Soep mentioned that have been used in the past to relax the leg and feet muscles but Dr. Bissel said she rather not use them on Connor even thought she used them frequently on her little patients with Neurological Issues. She is to worried about what the Botox might do to Connor's muscles since he has a muscle disease and it has never been done before in her department. So to make it short it is a risk they are not willing to take and i am neither after talking to her :)

Who ever says there is a break in our life when it comes to JDM? This disease does not cut us to many breaks and it never rests for sure.

Well, we are finishing up our IVIG and will now head to the Therapy Center to talk this all over again and now that I talked to my lovely husband I can brainstorm some more ideas with Holly, the Lady who wants to put the cast on Connor's legs today.

Part 2 will come tonight!

Hugs,

R A C A