So, I'm terrible at keeping this updated! Going to try to stick with shorter, more frequent posts from now on.. After this one of course. ;) We've had a lot go on since February.
We were able to stop by MDA's fill the boot in April and Carter had a blast talking with the Firemen. One of them even let him try on their helmet! We also had the great opportunity of discussing Carter's story and DMD with a first year genetics class at UCI medical school. Debra Miller of CureDuchenne was also there and it was an amazing session. I truly hope we were able to influence even a few of them to study Duchenne during their careers! The students just loved Carter (doesn't everyone? lol) and he had a blast with all the attention. Here's a link to CureDuchenne's blog post about the event: http://www.cureduchenne.org/index.php?s=UCI
'Quick' medical rundown: Carter had a stomach bug that led to a trip to the ER for stomach bloating/severe pain at the end of February. We were worried about an intestinal obstruction but xray's showed that all he had was a lot of built up gas. They said sometimes the gut needs a little more time to get back into rythym and to give gas drops. Mylicon helped for a few days but then he started having pain again while eating/after meals. We followed up with GI who think he has a slow emptying stomach and started him on medication for that as well as Prevacid to help protect his stomach from the steroid he takes daily. The medicine is helping and he doesn't complain as much about his stomach hurting but still a bit of an issue. Trying to focus on small meals throughout the day for now but may need to consult again with GI and have an endoscopy to see exactly what's happening. As of right now, he's keeping up his weight and is getting good nutrition, it's just the pain issue that we'd like him to be free of.
We continue to follow up with his local geneticist and endocrinologist. His IGF-1 level has been high so we've lowered his growth hormone dose consistently for the past year, he's gone from a dose of 0.8 to 0.5 right now. Hoping the level will go into normal range again soon so we can stop adjusting his dose. We see minor dips in appetite and stamina when we lower his dose and his height is beginning to slow just a little bit. He's gone from the 25th% to the 11th% for height. But still on the chart and MUCH better than where he was prior to treatment so not a big deal at all.
Two weeks ago we had our annual visit at Cincinnati Children's DMD clinic. We're happy to report that he's doing VERY well! All of his timed tests were the same as last year and his strength is still very close to that of a 'normal' boy his age. He does continue to have tightness in his heel cords and hamstrings and we'll focus on lots of stretching to keep it from getting any worse. We discussed the possibility of doing another muscle biopsy so we can find out exactly how much dystrophin he has and where he fits on the Duchenne/Becker scale. Not sure what we will be doing yet. For now they are calling his phenotype "Intermediate" and thinking he will progress somewhere in the middle of severe DMD and mild BMD. He got his first manual wheelchair in March and loves it. Cincinnati was our first big trip with it and all went very well. It's a lot more comfortable for him than the stroller.
I can go into a lot more detail, but this is plenty long enough! I will do another update soon; I promise!!
Oh, I can't forget to add, tomorrow is Carter's kindergarten graduation!! Can you believe it?! My baby will be a first grader as of August 11th! =*) He's doing soooo well in school, he's reading WAY above grade-level and loves to write stories as well. We are beyond proud of him!!
