Friday was a very special day for Westley. Our MDA liaison, Ashley Mauck came to Westley class and gave a presentation on Muscular Dystrophy. Ashley has been our “guiding light” through this entire process and we wouldn’t be in such great shape without her. (She is modest so I will toot her horn for her.) TOOT TOOT!!! (Can you tell I love her for what she does for all of us?)
Back to the Cookies!!!!
The presentation to the kids was a mock cooking demonstration on making chocolate chip cookies but OOPS they FORGOT to add the chocolate chips!! Even though the chips were missing they still had a really yummy sugar cookie; right? Our bodies are like the chocolate chips cookies. Westley’s body is the sugar cookie because it doesn’t make chocolate chips (dystrophin) like everyone else. They talked about treating him just like they would want to be treated and the things that he does well. One kid said “Westley is a good jump roper” and Westley chimed in while grinning “No I’m not.” Ms. Ashley decided that Westley was “good at being honest” and “a really good friend.”
We ended with cookies and juice boxes for everyone. (What more can a 1st grader ask for!)
We had a clinic visit on Wednesday to go over the details of Westley’s diagnosis of Duchenne Muscular Dystrophy. Luckily I had read and researched everything they went over with us before the appointment. I was able to really listen to what the doctors had to say instead of being an emotional wreck. Westley started Prednisone (steroids) Friday night and also Pepcid to counter any stomach issues. The Prednisone is shot at keeping his muscles stronger a little bit longer. It doesn’t work in all boys but its definitely worth a try. There is some research being done showing that even if it doesn’t help him immediately it will strengthen his heart and lungs in the long term. Pray this works and the side effects will be minimal. He will also start taking high doses of Calcium, Vitamin D and creatine (what body builders take) to help his condition. None of this is a cure but it will hopefully give him a better quality of life. Pray that the benefits of these drugs out way the negative side effects.
His “moon boots” are going to be replaced with custom made splints because he is falling so much. He will be able to wear them day and night (2 for the price of 1!). Dallas told him he could wear them under his pants and nobody would know. Westley response to that was “I don’t want to hide them from anybody, Dada.” Our kid rocks!!!!
Moving forward Westley will go see his PCP every 2 weeks for a quick check up and then we return to Children’s Hospital MDA clinic December 1st for x-rays and to see the cardiologist to get a baseline of his heart health.
There is so much more going on the in background; meeting with the school principal, nurses, teachers, fund raising for research and O yea! There is still work and the regular day to day life. I am trying to juggle it all but as I told Dallas this week I am a very clumsy person so I tend to drop the balls every now and then. At the end of the day we have these 2 amazing little boys to give the best life to so I will keep practicing this juggling routine ’til I get it right. ;0)
There was a children’s 1 mile race which Wyatt is planning to run next year (yeah!), a 5 k and a 10k. None of which I am athletic enough to do. AMBRE (Dallas’s sister) however ran her heart out in the 10k. She finished in 1 hour and 1 minute. We are SO very proud of her for running to support such a great place for kids.
I cant wait for next year!!! We love you Ambre!
Don’t forget to support the MDA Muscle Walk at https://www.joinmda.org/MyWalkHub/MyHomepage/tabid/178158/Participant/JessicaGG/Default.aspx
Wyatt’s blood work came back normal!!!!!
We are breathing a HUGE sigh of relief right now. Thank you for all your prayers.
The genetic test was supposed to take 45-60 days but I received a call last night from Westley’s doctor that the genetic test has already come back. He in fact does have Duchennes. I was under the impression this test would tell us if he received this genetically or if it was a mutation. Unfortunately that is not the case. The only way to know that is if I get the very pricey test too and since we don’t plan to have any other children its not a hot item on my to do list.
We will returned to the Children’s Hospital clinic on October 20th to go over the details of the disease and discuss a drug treatment of prednisone. Sometimes this helps young boys build muscles, run faster, climb stairs and can hold off being wheelchair bound for a bit. It doesn’t work in all boys but its worth a try. I have lots of reading to do on the subject before we return to clinic.
Also, Dallas took Wyatt today to give blood. We need to check his CPK levels just to make sure he is healthy. Knowing Wyatt I was very concerned this process would lead to Dallas holding him down while they took his blood. Thank GOD b/c he was a rock star just like Westley and didnt have any problems giving up his blood. He told me it felt like an ant on his arm. ;0) He loved the ice cream and Wendy’s afterwards. The only down side was Dallas gave them both Coke and Ice Cream as a “great job” treat. They were ALL JACKED UP this evening but finally fell asleep just a bit ago.
Thanks again for all your prayers. We love our growing Tribe of Warriors!!
Dallas and Jess
Westley received his splints or Moon Boots as we are calling them on Monday. The orthopedists showed him how to put them on and off properly and we were out the door. The first thing he did when we got home was give Wyatt the exact same lesson; just in case he ever needed help. The ultimate goals is to have him wear them all night to stretch his Achilles tendon. Walking on his tip toes has shortened it and makes it much harder to walk flat footed. The first night he wore them for 2 hours and then complained of the pain so we told him “good job” and took them off. He is slowly but surely becoming better about the length of time he wears them. We have found that laying on the couch with them on while he does homework on a lap tray works best. Here are a couple of shots of him the 1st night home. Also one of Wyatt “relaxing” on the couch.
I know I have said this before but the MDA is phenomenal! I got a call from the facility who is running Westley’s genetic tests telling me my insurance doesn’t cover their services and I would be getting a very hefty bill. They gave me a slew of things to do that immediately started to stress me out. I made a phone call to our local MDA office for some direction on how to handle this and was told “We will take care of this for you. Toss the paperwork aside and go back to your day.” Of course tears of joy arose because I knew they would indeed stick to their word. By the end of the day, everything was taken care of and Dallas and I only had to make the one phone call to them to get it all straightened out. This organization is top notch!! They take care of these things so we can take care of us. That means everything to our family. They are an answer to prayers.
I believe we have found a way to “register” for website updates via email. After successfully registering (below and to the right) – log-in and go to “Your Subscriptions”. Under Categories, check “Select All” to be notified whenever I update the site. I hope this works.
Thanks to all of you who continue to pray and reach out to us. We love you all!
Dallas and Jessica
(Fall is here!! I can’t wait for the leaves to change. It’s the greatest season!!!)