Sunday, February 22, 2015

More Doctor's Appointments

This past Friday we had a round of doctor's appointments at Duke. The day started with a PT appointment. They checked the flexibility/range of motion of his legs, and they made casts/molds of his feet and calves. Those molds will be used to make is night braces, which will help keep his heel cord and connecting muscles from contracting at night. Josiah was able to pick out his design and colors; no surprise that he chose Spiderman. The therapist recommended that his PT work with him in a pool. If that isn't an option, they said we should take him to the pool twice a week.

Next it was on to pulmonolgy and cardiology. This was our first round of appointments with these specialist at Duke. Josiah had a pulmunary function test that, in general, was fine. He had some difficulty with the mechanics of blowing out forcefully. It was similar to how you might blow on a kazoo; he just couldn't quite get it which caused his numbers for that part to skew lower. For cardiology he had an EKG and a heart echo (both normal).

It was a long day. About 5.5 hours from the first appointment to the last, but he was a trooper. All of the doctors were so nice and really good with Josiah. We are thankful to have these resources not too far away. We will go back every year for our MDA clinic day and have the same tests run each time. His braces should be in within about 5 weeks.

He has been on prednisone for about 5 weeks now. We have noticed a slight increase in agitation, but so far, very manageable. Within the past few weeks, you can see the puffiness creeping into his face. I know it isn't the worst thing ever, but it is a reminder...

All in all, life continues on fairly normally. Bennett and I have our moments, but we are managing. Thank you all so much for your messages and kind words. We are so grateful for the support and prayers.

Friday, February 6, 2015

Josiah has been on his 21mg dose of prednisone for 3 weeks now. For the most part, no real changes in behavior; maybe a slight increase in frustration at school, but overall, pretty normal. We are so thankful for this and pray he continues to be fairly side effect free. It was difficult for me to start him on the medicine. I know that changes are coming in the future, but the thought of my little boy experiencing some drastic mood/appearance changes now was a hurdle I had to face. I have seen pictures of families with a boy with Duchenne's. It is very apparent; but even these changes don't happen overnight, and if this medicine can help him have an extra two or three years of mobility and delay scoliosis concerns, we'll deal with the changes when they come. Josiah has been amazing with taking his medicine. We told him it wouldn't taste very good, but that he needed it to help his muscles. He takes it every morning without complaint, and even reminds me to give it to him. 

We have a few upcoming appointments at Duke. February 20th we go so that Josiah can be fitted with nighttime orthotic braces. These will help keep his heel cord from contracting at night; for boys with Duchenne, that contracting can cause increased difficulty with walking. That same day he will also see a pulmonologist for a pulmonary function test, and we will meet the cardiologist (Josiah has already had the cardiology tests). These appointments are for a baseline function level, and then every year they will test his heart and lungs and note any changes. 

In March we go back to follow up with the neurologist. At this time, I dont' see any real changes to the "plan". In the event there are any drug trials that Josiah might qualify for, a standard requirement is 6 months on prednisone, so we have a bit longer before that comes up. He will continue with speech therapy for his cognitive delays, and he is next on the wait list at a local physical therapy office. 

All in all, life is pretty normal. Bennett and I have our times and our thoughts and our quiet fears, but mostly we try to just be thankful that today Josiah is here and he can walk; that Chandler and Garrison are also happy and healthy; that we are together.