Thank you Clay Matthews!!!

Such an exciting and unexpectedly emotional day for me, watching Clay Matthews and the Green Bay Packers make it into the Super Bowl. I've always been a football fan, and was dissapointed in my Colts this season, but so much happier for all that has transpired. Clay Matthews has become a hero in our household as well as thousands of others across the country. He has become a face for Duchenne. Millions of people have been introduced to Duchenne thanks to him, Cadillac and the wonderful people at Cure Duchenne. (http://www.cureduchenne.org/).

The auction can be found here: http://www.charitybuzz.com/auctions/cadillac/catalog_items Hurry though, it closes soon!! 

We've had a lot going on in our personal Duchenne journey recently. Carter is almost 7 and has just begun bringing a scooter to school and is having some endocrine issues. Although we have a lot to worry about, we are hopeful now more than ever that the world will finally listen and we will get more on board with us in the fight against Duchenne for Carter and so many other boys! This is the perfect time to get the national media involved, if you know anyone in the industry, please tell them the world needs to hear about Duchenne! I've stared small and emailed local newspaper editors, but have unlimited hope for the next few weeks and beyond.

Together, we can CURE Duchenne!



"Peace" -Carter Blaze



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 :)