8th Infusion - Cancelled

Today we spent the day in the clinic getting checked out.  Max has had a flair up of a few symptoms the last couple weeks.  He has had some increased fussiness and irritability, he has become more clumsy and out of control at times, and his therapists have noticed some increased changes in how his body is trying to compensate for his lack of balance and coordination.  He has been clenching his feet when he walks on the floor to try to keep more balance and has been doing more leaning on items to gain support and doing a few other things with his body to compensate.  They have had some concerns about his safety, so we have gotten rid of the baby crib and have him sleeping on a mattress on the floor for now until we can slowly work him into a more permanent big boy bed and are trying to be more careful when his body is feeling out of control, so we don't have any major accidents.

We found out last week that Max was going to be due to skip an IVIG infusion this month, which was a surprise to everyone including the doctors and nurses.  There was some question about whether he was ready or not and after discussion with his oncologist today, we went ahead and skipped it for this month only so we could follow the protocol.  We did go back up on the steroids to try to curb these new symptoms in hopes that us tapering his medication is what caused the change.   If he doesn't improve in the  next week or so then we will go ahead with the IVIG infusion.  The problem is that one of the goals of his clinical trial is to see if IVIG really make a big difference with this disease and for us deviate from the schedule would cause a trial violatioin and could invalidate some of the research they are gaining on Max.  So before we violate anything we want to make sure this flair up can't be controlled by other means.  We are going to keep a close eye on him to watch these things and hopefully this medication change will fix everything and we can continue as planned.   We appreciate your continued prayers as we try to figure out what is best for Max. It is really hard to know as parents how to advocate for your child, we want to try to help gain more research on this disease but are hoping we aren't sacrificing Max's health.  We did discuss that in the future once we get the steroids down to a manageable dose that we will be allowed to treat Max with an IVIG infusion at the onset of new symptoms without any hassles from clinical trials.

Some good news we learned today is that Max gained .2 kg!!  First time he has gained weight in  7 months. The doctors are monitoring his blood pressure and did some more glucose testing to make sure we aren't taxing anything, there could be some potential issues with him developing temporary diabetes which we could treat with insulin if needed.   His hemoglobin and hematocrit were low, but with the amount of meat  Max eats we aren't too worried about that. One of his favorite two word combos right now is "More Meat!" I think he could eat big steak every night if I would let him =)

Sorry for the delay in getting posts up, both our camera and laptop have been on the fritz lately, hopefully we will get everything up and running and can keep everyone updated more regularly.