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. www.tinyurl.com/teamaltura 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: cure4carterblaze@gmail.com 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 http://www.youtube.com/watch?v=6wLnR7GJakY) 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.

<3

SAVING OUR SONS One Story at a Time

http://www.savingoursonsonestoryatatime.com/?ap_id=cure4carterblaze

I recieved my first copies of SAVING OUR SONS ONE STORY AT A TIME this weekend. Thank you so much to Misty Vanderweele for putting this book together!! It's surreal to see my story, Carter's Story, in print and I'm truly honored to be involved. Each personal story in the book brought me to tears. It's amazing how similar the heart of our stories are. All of our lives have been turned upside down by Duchenne. A disease that most of us had never heard of prior to our son's heartbreaking diagnosis. None of us planned on this life, but we are all striving to make the best of it. We are determined to give our sons a future.

Please, if you haven't already, order the book!! (http://www.savingoursonsonestoryatatime.com/?ap_id=cure4carterblaze or email me) It's inspiring and a real eye opener into what day to day life is like for our families affected by Duchenne. Proceeds from books I sell will go towards Carter's expenses not covered by insurance. Please email me at: cure4carterblaze@gmail.com with any questions.

Thank You (from Carter)

Please see Carter's post below for pictures and information on our fundraiser we held in July. He wrote this all on his own, so proud of him. He continues to ask me how we can raise more money to CURE Duchenne and has a lot of ideas. Carter is amazingly strong and I know he will do big things to make a difference for himself and others with Duchenne.

http://carter1b.blogspot.com/2011/07/thank-you.html

Learn Carter's past, Improve his future!

Make an on-line slideshow at www.OneTrueMedia.com

This video is a little long, but I think it's the best way to show what Carter has been through so far and what our future holds. Carter has been fighting since he was born. It's so much easier to talk about what he's been though, what is behind us, because I know how that turned out. His time in the NICU was incredibly trying. It seems like so long ago, but then again I remember it all so well. That fear never really leaves you. We thought that Carter's fight was over, that he'd grow up to be a healthy little boy. Then came Duchenne. It is 100% fatal, with no cure. There are many promising treatments within reach for Carter and thousands of others in this generation of boys. But, we need funding to keep things going and speed research up. With a progressive disease like Duchenne, we are always fighting the clock.

Please make a donation today if you can. ANY amount helps. http://www.cureduchenne.org/site/TR/Events/General?px=1013680&pg=personal&fr_id=1050


Thank you so much!! :)

Please join us!!

We are so excited to see our first fundraiser coming together. In less than 2 weeks we will be hosting our climb to Mt. Rubidoux!! Please see our team page to make a donation. www.tinyurl.com/teamaltura. You can make a general team donation or click on one of our names to sponsor directly (all funds will go towards team goal). Carter would love to have some donations made in his name.. He raised over $150 for Jump Rope for Heart and he's determined to do better than that for Duchenne!! Please help him. :)

Please email me to RSVP if you plan on attending the climb (cure4carterblaze@gmail.com), we will be BBQing and holding a bake sale and raffle and want to make sure we have enough of everything. It's going to be a great day of fun for the whole family!! The trail is wheelchair/stroller accessible and we will be walking at at gentle speed. We hope you will join us! :)

I am taking orders for our Team tshirts. They are $8 each and come in every size from YXS-2XL. Email me: cure4carterblaze@gmail.com to place your order.

 

Team Altura: Carter's Climbers

Most Duchenne boys will not survive their teenage years. Those that do are faced with muscle fatigue and pain and will likely need a wheelchair by age 12. The simplest tasks become difficult, and in their later stages, heart and breathing muscles begin to fail. Over 24,000 boys are living with the disease in the United States alone. The disorder knows no ethnic or social boundaries and effects 1 in 3500 boys born worldwide.




As many of you know, my 7 year old son Carter has Duchenne muscular dystrophy. It is devastating and 100% fatal. We were shocked to learn the diagnosis, less a month after I started at Altura in July 2007. I’ve been incredibly blessed by the support of my Altura Credit Union family throughout our journey (which is only just beginning) and I am thrilled to announce our next step!



Two years ago, CureDuchenne launched “CureDuchenne Adventure – Climb to CureDuchenne: Pick Your Peak.” Last year, over 200 people throughout the country chose a mountain, hill or tall building to climb, raise funds and increase awareness for the organization. Together they raised $250,000 – an incredible feat for a second-year event! This year, Climb to CureDuchenne: Pick Your Peak is scheduled for June 18 - July 17. The last two years, teams of adventures previously climbed tall buildings, big hills and even Mt. Shasta. It may seem ironic to use athletic events to raise funds for boys who are limited in their physical activity and no longer able to walk on their own by age 12. But our boys are no different than every child who has dreams of participating in sports, of being a baseball player, a football player and even a cowboy! With enough support and awareness, we can make those dreams a reality for Duchenne boys.


Team Altura: Carter’s Climbers will be hosting our first annual family-friendly 5 mile hike to beautiful Mt. Rubidoux in Riverside on Sunday July 3rd @ 2:00pm, from our 14th Street branch. The walk will be a 5 mile loop and is stroller/wheelchair accessible. It will be a day of fun for the whole family and we hope to see many of you there!!

You can make donations and register as a team member here. http://tinyurl.com/teamaltura Registration includes a CureDuchenne tshirt and the ability to create an individual fundraising webpage, if you make at least a $25 donation. You don't need to register to join us, but we hope you will.
Please contact me to get involved!! cure4carterblaze@gmail.com =) Stay tuned for more details!

Update

We are getting ready for Carter's annual appointments in Cincinnati and I just realized I haven't really updated in a while on everything else that's been going on...

Carter's still been having frequent stomach aches. We saw his GI recently and he thinks that Carter may have an overgrowth of bacteria in his small intestine causing his pain. He is 'at risk' for this due to the surgery he had at birth and resulting short bowel syndrome. He had this problem about 3 years ago but that time he didn't have pain, just unexplained fevers.. We are trying the same treatment we did then. 1 week of Flagyl 3x a day, 2 weeks probiotics followed by a week off and then the same cycle one more time. Hopefully this will resolve his pain issue. If not then we need to decide how much the pain is interfering with his day to day life and if it's severe enough that we need to do an endoscopy and really see inside. It's so hard to say exactly how much the stomach pain effects him because he has a lot of muscle pain throughout the day also. So hard to see him in pain so often. It's just not fair and has been rough on all of us.

Since starting on growth hormone back when he was 2 years old we've had a mainly unexentful Endocrine journey. That is beginning to change.. About 2 years ago his IGF-1 level starting running high, we lowered his growth hormone dosage in an attempt to control it but it didn't help. When we saw his Endocrinologist in January, he had only grow a little over 1/2 and inch in almost a year but gained 10 pounds. We decided to go ahead and increase his GH dose since it was effecting his growth and not helping the IGF-1 levels. Hopefully he will start growing again, crazy to see how fast he slowed down and went from being about the same size as his peers in the beginning of kindergarten to the smallest in the class now at the end of first. The nutritionist at Cincinnati children's will review his 3-day food log and see if his weight gain is dietary. I don't think he's been eating more the past year then he did before; but we're looking forward to input. If his diet is okay then Dr. Wong wants to evaluate him for insulin resistance. It can develop as a result of the steroids he takes.. We also found out that high IGF-1 is common in boys on steroids and GH so we are less worried about that. There are studies beginning on IGF-1 as a possible treatment for Duchenne, I personally feel (and some doctors have said they agree) that the high IGF-1 has helped Carter. He still has great strength and has maintained in that regard over the past 2 years although he is getting fatigued easier now.

We saw Cardiology and Allergy/Pulmonary a few months ago, all is good in both departments. No changes in his heart or lungs yet. We will be re-testing his food allergy levels in his next blood draw. Keeping our fingers crossed we will see a decrease in his levels for milk. It's been a few years since we've seen where his blood levels are at.

Today we had his IEP meeting and discussed what he will need next school year. He will be using a scooter daily at school starting next year, we will do some kind of assembly for his classmates to talk about muscular dystrophy and general defferences/compassion/etc.. He had a problem with kids laughing at him when he was bringing his scooter this year and is very hesitant to take it again although he knows its necessary. He will also will be getting a more supportive chair with armrests and a foot rest to keep his posture better during the school day. He gets uncomfortable now and is always up and down in his seat. Next year we will also begin pushing typing over writing in class. We will meet again with his adaptive PE teacher, principal, nurse and new teacher before school starts next year to go over everthing again and make sure we have all the right tools in place for him to continue to be successful in school. He's very advanced academically and we want to keep school as a positive thing for him.

We are getting closer to the release of Saving Our Sons One Story at a Time, please view the link on the right to pre-order your copy!! I will have copies to sell in person as well once it's released. =)

I'm sure I left out a lot from my update, I really need to write more frequently!

<3

Hope you enjoyed the post below. It was written 1/2 by Carter and 1/2 by myself. We actually took turns with the laptop writing each sentence last night. :) He's been inspired to start his own blog now, I can't wait to see how it develops and hope he keeps it for years to come. You can find him at: carter1b.blogspot.com.

We had an amazing time together Sunday hiking the mountain and although I'm still slightly sore, I can't wait to do it again very soon! We are thinking about Saturday and having a picnic lunch under the flag. The hike was 2 miles up and although it's not too steep, it's quite a workout when pushing Carter in his manual wheelchair. I wanted to stop a few times but he kept me going. We got disappointed when we'd turn a corner and see that there was still just trail ahead and that we weren't to the flag/cross yet but he kept saying, "lets think positive", "it's going to be so exciting when we get to the top", "we can't turn back now". Once we got up to the top we parked his wheelchair and climbed up some big steps and then rocks over to the flag and then same thing with the cross. It was a great time and so worth it!! Amazing how rewarding that hike was with Carter compared to if I would have gone up on my own. It made it that much more taxing physically, but was so empowering. Nothing like seeing the joy on my sons face after he was able to climb up the final bit to the top of the mountain himself. It was hard for him, and probably something Dr. Wong would frown on, but there are certain things that I just can't stop him from doing. Some things are priceless and I feel we need to let him experience them while he still has the ability.  If we can figure out parking and some other logistics, we will be hosting a "Climb to Cure Duchenne" event at Mt. Rubidoux in June. Please stay tuned for more info on that..

Carter recieved the 'Principal's Honor Roll' (all A's) award today for the second trimester at school (he recieved it last trimester also and for the full school year in Kindergarten). He's starting his academic career off great and we couldn't be prouder of him!!

Carter decided this year to take part in his school's fundraising efforts for the American Heart Associations Jump Rope for Heart. Although he isn't physically able to jump rope he is very excited to "raise money to help other people with heart diseases" and is really looking forward to the event. Heart health is something that effects us all and although Carter's determination is to help others; research in this field is of great benefit to him and all of the boys/men living with Duchenne. Please help him make a difference by making a small donation if you're able. http://honor.americanheart.org/site/TR/JumpforHeart/WSA-WesternStatesAffiliate?px=2712650&pg=personal&fr_id=1445 Thank you! =)

Mountain Climbers

I had to work Saturday, but Carter marked Sunday as "Carter & Mommy Day" on the calendar. We weren't sure what to do, but it was a really pretty day out. So we went to Mt. Rubidoux. It was very hard to find the place because we could not find a parking place. There's a beautiful paved 2-mile hiking trail. On the top there is a big American Flag and a cross. We climbed all the way to the top and sat below each of them for awhile. Next time we are going to the top and going to have a picnic. It was a lot more work to get up to the top than we thought. It was so pretty once we got up there; I forgot about the discomfort of pushing Carter up the mountain and was just so happy to be experiencing the moment together.  I don't think I needed pictures to remember the day I think I could remeber it myself. But, we did take a lot of pictures, so we could show everyone just how beautiful it was. Here are a few:

 By Carter and Rhiannon :)



Go Packers!!

Such an exciting week for us!! Tuesday night Carter recieved a card from Make A Wish!! He is so excited thinking about his wish! Wednesday was Carter's 7th birthday and yesterday we celebrated with a party at the park with his friends. He had a blast.

We were also featured in our local paper yesterday. About Clay Matthews and what he's done for Duchenne awareness! http://www.pe.com/localnews/morenovalley/stories/PE_News_Local_W_carter05.2545db7.html

Starting tomorrow, you can also pre-order the Duchenne collaboration book I am a part of. "Saving our Sons One Story at a Time". :) We will earn money from orders that will be donated to Duchenne research and towards Carter's bills in Cincinnati. :) Words can't describe my excitement!!! sos book



Half-time is almost over.. Thank you again Clay Matthews, Cadillac and CureDuchenne!!! Our voice is finally being heard, we can make a difference in time for OUR sons.  :)

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