Update

As always, it's been awhile. Lots to update on. Carter finished up with 2nd grade May 25th. Where has the time gone?!? He did very well again this year and again made the Principal's list every trimester (all A's, all year!). This year he took his scooter all year and it worked out great. He uses it outside the classroom for long distances and out on the playground to keep up with his friends. His strength is still pretty good and he's able to get around really well, but tired much quicker than his peers.

Medically, things were great most of the year. However, May 4th we had quite a scare and Carter was admitted to the hospital. He was running a slight fever the afternoon before, but it went away with Motrin and by bedtime he was just complaining of a slight stomach ache. We awoke a little after 3am to him crying that he had just vomited and that his chest hurt. The chest pain became intese and he was screaming in pain and started having trouble breathing. He's had muscle pain after vomiting in the past, but never anything like this. We rushed him to the ER and when we arrived his heart rate was high and ozygen a little low, but he stabilized quickly. The chest pain lasted about 25 minutes and once it wore off he was really tired but feeling okay. They did a lot of tests and his white blood cell count was 20,000; CPK was 19,000 and then 39,000 (it's always high in DMD, but Carter's levels have been under 10,000 lately) and he had myoglobin in his urine. We were admitted for observation and blood cultures to rule out a serious infection. His troponin (heart specific enzyme) was normal as well as his chest x-ray so they were confident it wasn't a cardiac event. After 36 hours in the hospital we were discharged and he was diagnosed with a bad virus and costochondritis (inflamation of cartilage in the chest). When we followed up with his Pediatricain, his levels were back down to his nornal and they agreed it was a bad viral infection. He gave us quite he scare but it was such a relief that his heart is okay. The mobility issues that come along with Duchenne don't scare me nearly as much as the heart complications.

In other news the stomach pain that was so common a year ago is mostly gone now. He complains occasionally but Mylicon or Tums seem to help. He's done better with his weight on the lowered Deflazacort dose but almost 4 years on steroids has started effecting his height more and more. Even with his growth hormone treatment he's slipped down the the 4th% for height. We're continuing to monitor his IGF-1 level as it's staying pretty high. We are getting ready for our 5th visit (Wow, time really flies!) to Cincinnati Children's hospital next month and I'll update again after that.