Happy Holidays!!

I'm not going to give any excuses for not updating sooner this time. We've been busy enjoying life. =) Married life has been wonderful. The wedding was beautiful and everything turned out perfectly! Couldn't have asked for a more beautiful day. Carter was the most handsome ringbearer ever and was able to use his experience again 3 weeks later for 'Aunt Lexi's' wedding.

Carter has been doing well. He had the abdominal ultrasound in October and everything was normal (for him) still not sure what the reason for his pain is, but it has seemed to decrease over the past few months. We had his 6 month appointment recently with his local neurologist at UCI and recieved a prescription for a motorized scooter. It's something we've been talking about for awhile now, but very bittersweet.. He will only be using it at school for now and we will still use his manual wheelchair for long distances when we go places. We don't want him to use it too often, but it will allow him to be more independent and keep up with his friends out on the playground. He is VERY excited about it. He wants "hot red". =) Aside from the scooter his appointment was mostly uneventful, just a follow-up to see how he's doing. His strength is still good but the issue is his increasing fatigue now, we have to limit him some to keep from speeding up the progression of his Duchenne but also want him up and active as much as possible.. it's a balancing act.

We will be busy the next 2 months, he has appointments coming up with Allergy/Pulmonary, Endocrinology, Cardiology, and his 2nd visit to UCLA for the DMD study at the end of next month. I wiill update on how all these appointments go. They're mostly standard follow ups, but we have a few things to discuss with his endocrinologist and will be talking to his allergist about testing his blood levels again to see if the milk allergy has changed at all. It's been 3 years since we last checked and I'm really hoping to see a drop. Not sure if he will ever outgrow it completely, but it would be great if we could get to a point where he's not as dangerously allergic as he is now.

I'll leave you with some pictures =)

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