Thursday, June 7, 2012

Team Altura: Carter's Climbers Climb to CureDuchenne2012

We are getting things together for our second annual Climb to CureDuchenne. I hope you can join us on June 23rd at Altura Credit Union on 14th St. We'll be there from 8am-1pm and will be hosting a bake sale as well as climbing Mt. Rubidoux. To make a donation or join our team, Please CLICK HERE!

Wednesday, June 6, 2012


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.

Wednesday, August 31, 2011

Can't believe summer is over!!

Like always, it's been awhile since I've updated. We've had a busy summer and I can't believe Carter's already been back in school for 3 weeks!! He had his first sick day today, was sent home with a backache and fever of 103. I think this is the longest we've gone into the school year before he's gotten sick! He tends to catch something the first week. lol. Just something we're used to with him.. His fever broke this evening and has yet to reappear. I'm staying positive that it's just a minor bug and he'll be back to school on Thursday. Please keep him in your thoughts.

We had a great summer. Hosted our first fundraiser, Climb to CureDuchenne Pick Your Peak 2011 on July 3rd at Mt. Rubidoux and raised $2367 for CureDuchenne. So thankful for all of our family and friends who helped out and supported us! The next weekend we were in Baltimore for our first Parent Project Muscular Dystrophy connect conference and it was just amazing to connect with so many other Duchenne families. Carter absoultely LOVED meeting up with all his friends and asks constantly about them. We will do all we can to attend every summer; it's great to be able to connect online and on Facebook, etc.. but nothing like being face to face and feeling so NORMAL and at home. <3 our Duchenne FAMILY.

I also recieved my first shipment of SAVING OUR SONS ONE STORY AT A TIME. Still have many copies to sell, proceeds will go towards paying off Carter's new scooter as well as next years appointments at Cincinnati Childrens Hospital and hopefully towards getting to PPMD again next summer. Please see posts below or email me at: for more info on getting your copy. I also have Carter's Climber's shirts still available from our fundraiser. Stay tuned for t-shirt/signed book packages! =)

Carter is now in 2nd grade, and it's a little bittersweet. He still has so much strength and is doing very well compared to other boys his age with Duchenne. But, he also has a lot of pain and isn't able to keep up around campus/on the playground at school so he started bringing his scooter for use outside this year. It has helped a lot but he still gets home very tired some days. We are trying to find a balance of letting him run and play as much as he wants while he can but also not letting him overdo it. Hard with a very active 7 year old who is determined to be just like his friends. Since his arms also get fatigued, he will be typing in the classroom and at home instead of writing most assignments. Before bringing his scooter, all of the 2nd graders got a little bit of information on Duchenne (Care of this great video and it's seemed to helped with the response he's gotten from the other kids. He's said that they've been helpful and haven't teased him, which is something he was very worried about.

There is LOTS more to talk about, but it's 1am and my bed is calling my name. =) I will write again soon.