Neuromuscular Clinic Visit

Yesterday morning Jeff & I took Nicholas to his neuromuscular clinic appointment at Shriner's. We go to one every six months to determine where Nicholas is developmentally and what new things we need to implement into his routine. We've only been once since his diagnosis and that went smoothly so we were expecting more of the same...only that's not what we got during this visit.

We left our house at 7:20 a.m. for our 8:30 a.m. appointment in Portland, anticipating that there would be some traffic. Some traffic is an understatement because there was A LOT of traffic and instead of a 40 minute drive, it ended up being an hour and 15 minute drive which caused us to be late for our appointment. When we arrived and checked in we sat in the waiting room for 45 minutes before being called back to see the doctors. During neuromuscular clinic we saw a nurse, a representative from MDA, Nicholas's neurologist, and Nicholas's ortho. By the time we saw everyone it was 11:00 a.m. and Nicholas was ready for a nap. Don't let the smiley face above fool you...we took that photo upon our arrival to our room! But Nicholas's ortho wanted him to get x-rays on his spine and get his body brace fixed so we had to be there for another hour and a half. During the x-rays Nicholas bawled his head off because he was exhausted and probably a bit scared. Needless to say, Jeff and I couldn't wait to get out of that place when we were finished after spending over 4 hours there.

Here's what is on the agenda for Nicholas's health care:

• The x-rays showed some curvature of his spine both when he was laying down on his back and when he was sitting upright. However, when he was sitting upright with this body brace on, the x-rays showed a nearly straight spine. So now he must wear his body brace most of the time. For any sitting, eating, stroller trips, basically it will only come off when he's in his car seat and when he's sleeping. The good news is that his hips looked good, no problems there.
• We are closely monitoring Nicholas's food intake and hoping that he will be able to put on some pounds. His weight has plateaued and this worries his doctors. So for the next couple of months we will be increasing the amount of food he eats and giving him two bottles of PediaSure per day which is expensive, but necessary. If he does not start to gain weight then a gastrointestinal tube (also called a feeding tube) will need to be inserted into his stomach to help him with his food intake.
• Dr. Russman (Nicholas's neuro) shared a SMA clinical trial website with us: http://www.clinicaltrials.gov/ct2/results?term=sma that we can look at periodically to see if we want to enroll Nicholas in any clinical trails for SMA. He also told us that there is a lot of research going toward treatments and cures for SMA and a variety of neuromuscular diseases. This gives us hope that a cure or a treatment will be found very soon!