Counting down

So, as usual I've been neglecting this blog. I'm sorry. I have a good reason though, if that helps. lol We have been getting ready for the wedding and it's coming up QUICK! Only about a week and a half now until 10/10/10. We are sooo excited and Mr. Carter will be the cutest ringbearer ever! I absolutely cannot wait for our day to get here. :)

Carter started first grade on August 11th and has been doing very well academically!! The full day at school is harder on him physically and we will most likely be getting him a scooter to use there which should be a great help. It's an adjustment, but I know he will appreciate being less tired in the afternoon/evenings.

We just saw his GI Dr. again last week and will be scheduling an abdominal ultrasound soon. He's had some relief from his new stomach medications but still complains often of his stomach hurting so they want to take a look inside. If nothing shows up in the ultrasound then he may need an endoscopy. Hoping not to have to go that route since he'd have to go under anesthesia for it.

Although he's been getting fatigued easier and more often, he's hit a major physical milestone recently and is now able to swim short distances without a life vest!! :) Very proud moment for us and he's LOVING the water now! Here's a video:

And some recent pics :)

DMD Gait Analysis study at UCLA

Carter had his first appointment for the DMD gait study at UCLA on Wednesday the 21st. It went well and it was very interesting to see all the high tech stuff that they used for the different assessments. They also think he's probably going to be on the milder end progression-wise. He does have tightness in his legs and fatigues easily, but was able to do all the gross motor tests they had him try (except hop on his left foot 10 times). We were happy to hear that he is still strong and doing well. :) We'll go every 6 months for the next 3 years and they will see how he progresses during that time.
We took a lot of pictures, figured they will explain things better than I can. In addition to the tests we did there he's also wearing a step activity monitor for the next week so they can see how active he is during the day at home.

Getting ready for the first test

"Luke, I am your father" lol

Energy Cost of Walking-
Individuals will be asked to rest for 10 minutes and then walk for 10 minutes while wearing a mask over their nose and mouth (see photo). This will allow for the analysis of the amount of oxygen and carbon dioxide used during resting and walking.

Gross Motor Skill Testing-

Individuals will perform a set of gross motor skills that go from easy (rolling on the floor) to hard (walking up a flight of steps). Individuals will perform as many skills as they are able.

They told him to stand straight like a soldier. lol

Muscle Strength Testing-

Individuals will be asked to push or pull using their hip, knee and ankle muscles. The amount of muscle force produced will be measured by a machine.

Computerized Assessment of Walking-

Individuals will be asked to walk down a short walkway while wearing reflective markers. The marker information is hips, knees and ankles move during walking.

His hair is so long we had to pull it back to see the marker on his neck. lol

 My amazing boy!! =)

Here's a link to the trial listing:
http://clinicaltrials.gov/ct2/show/NCT00312247?recr=Open&cond=%22Duchenne+Muscular+Dystrophy%22&state1=NA%3AUS%3ACA&rank=1

And a flyer that explains in a little more detail:
http://www.cdmd.ucla.edu/_assets/DMD%20Brochure-UCLA.pdf



Long time..

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!!