Muscle Walk Photos!

I am just now getting a chance to post photos from the MDA Muscle Walk we attended a couple of weeks ago. It was such an amazing experience and it was awesome to see so many individuals as well as organizations walk to raise awareness and funds to find a cure for neuromuscular diseases. The Lumberton Student Council raised over $1400, which was the second highest amount raised by one group. Overall, the entire event raised over $20,000 for the MDA.

The event was held inside the mall, before it opened. Since the weather is so unpredictable around here, it was a great indoor venue with plenty of room for everyone to walk. There was free food, face painting, mascots such as the Chick-fil-A Cow, the HEB Buddy, and the "Build a Bear" bear, and a "dance party" to kick the event off. There was lots of music, a middle school marching band, and a MC to keep things rolling. It lasted about 2 hours and I think we all had a good time being there for a great cause.

We even got to meet a family whose mom had passed away from complications from CMT. The daughters (who all have CMT themselves) were there in her honor. It is RARE for someone to die from CMT, but in extreme cases, it can affect respiratory muscles and lung operation. We have never met anyone else with this disease so it was great to talk to a family who lives with this and know what we are facing. These women didn't seem to have severe symptoms, that we could tell, and have all had children and normal lives. So it was very encouraging. Obviously Brody may not have the same type of CMT as them so we can't compare cases, but still, it was great to get to talk to them.

After attending the walk, I was reminded of why I love these things. I participated in these type events in high school, as well as when I was working. I coordinated all the community events for a big bank and had the opportunity to attend benefits and fundraising walks for numerous causes such as American Cancer Society, the Heart Association, etc. I love the encouraging stories, the attitudes of the patients who are there cheering you on, and the joy on their faces when they see that people they don't even know are supporting their cause. So I would love to find ways to bring more awareness and even coordinate something like the MDA Muscle Walk here in our area. (Apparently, the walk is relatively new and we don't have them in our area.) We've already talked about planning a Brody's Walk 5K/10K  to raise money for Brody's expenses, as well as donate to the MDA or CMTA. Hopefully its something we can get together this fall!!

So back to SETX MDA Muscle Walk!! Here are some photos of our day. And please excuse some of the terrible photos. The mall was not well lit and I didn't bring my flash. Plus we were walking faster than I thought we would so it was hard to get great shots.

My family decided at the last minute to have shirts made for Brody. In front is all my immediate family that lives in town (minus Uncle C and PawPaw). Behind is the Lumberton Student Council who raised the money and walked for Brody!

Just the family. There were pictures being taken from like 3 different angles so people are looking all different ways..and you can't even see Matt in the back. But you get the idea :)

 The Marching Band leading the way.

 Some of the students pushed Brody some of the way. (he was busy licking donut glaze from his fingers)

 Both of my grandmothers (Nana and Nonnie)

 Matt, Nonnie, and my mom

 Brody cruising

 Even Baby Brooks had a shirt! He loved being pushed in the stroller for a while.

 Can you guess what he's doing here.....

 Best Buy had set up a Kinect and he was ALL OVER IT! He knew exactly what to do when he walked up and was a pro! You may not be able to tell, but he is coming down out of a jump right here. This game had him jumping and leaping all over the place. It was great therapy for him. Do you think we could right a XBOX 360 and Kinect off as a medical expense? 

Thank you to the LHS Student Council and our family who participated. Thanks for inviting us to participate and be a part of such a great organization!

2012 Southeast Texas MDA Muscle Walk

Everyone has seen the MDA Telethon and MDA Walks around the nation, and the local fire department's "Fill the Boot" Campaign every year. These efforts raise money and awareness for all forms of Muscular Dystrophy, as well as disorders that fall under the "MD umbrella." What you may not know, is that Charcot-Marie-Toothe disease falls under that umbrella. So if you donate to the MDA or participate in one of the walk-a-thons, you are contributing to finding a cure for CMT. So the next time you see a fireman with a boot while you're at a stop light, throw your loose change in for Brody!

So, on that note, we are so excited to be participating in the Southeast Texas MDA Muscle Walk next weekend. My former high school, where my mom is employed, raised money for MDA, specifically for CMT, and donated it in Brody's honor. They will be participating in the Muscle Walk and invited Brody to attend as a guest of honor. So we'll be walking to celebrate his life and health, as well as raise awareness about his disease. He'll walk as much as he can, and then probably hop in the stroller when his legs get tired. We're excited to not only get to participate, but also get to personally thank those who are donating and working hard to help find a cure for CMT, as well as all other neuromuscular diseases.

So, if you're from the Beaumont area, sign up to walk and come join us! We'd love to see all of you! Click here for more information! 

Immunizations and CMT

Today we've been dealing with possible affects of immunizations on Brody's CMT. He got his four year old immunizations, as well as the flu shot, yesterday. Dr. R told us to expect some soreness and even recommended we cancel today's PT session. When I called the therapist, she agreed. So I expected some soreness today when he got up...what I didn't expect was Brody waking up at 5:30am crying in pain.

He was burning up with fever..almost 103..and screamed if I touched either of his legs. I gave him Motrin and soothed him back to sleep. When he woke up at 7am, the fever had gone down but he could barely walk to the couch..but I made him walk on his own because I knew working the muscles would loosen him up. He ate breakfast and kept complaining of pain. I decided today would be a good "veg" day...it was going to rain anyway. I turned on a movie for the boys and helped Brody get to the couch. About 10am he was shivering and moaning on the couch. I knew his fever had gone back up. It was 103 again. Although I thought this fever was high for immunization side effects, I wasn't completely shocked. When Brody gets a fever, he always gets a bad one. And it always knocks him down hard. What was more odd to me was how extreme the pain in his legs was. The boy is accustomed to leg pain...so for him to be screaming when I barely touched him or him barely moving them to get comfortable on the couch, I knew he had to be in severe pain. After some Tylenol (he couldn't have more Motrin yet) and snuggling up with his blanket and pillow, he fell asleep.

When he woke up, the fever had gone down, as I expected it would. But the pain is still there. He is moving a little bit, but he needs help getting up and to the bathroom. I keep trying to walk him around a little to loosen things up, but I can tell it is really hurting.

I just can't imagine the pain being this bad solely from the immunizations. I'm thinking it has to be the CMT reacting because of the immunizations. I haven't heard of any other four year shots causing children this much pain. So I started researching online..and I can't find anything at all. I'm all for immunizations, but if I had known this would be the outcome, maybe we would have discussed doing them in the arm. I don't think his doctor or I thought it would hurt him as bad as it did.

Fortunately, he doesn't have to get more immunizations until 11 years old. That seems crazy to me. But I'm thankful. In the meantime, I plan to do more research into this. If we discover any of our other children have CMT, we'll know to have a different plan.

If anyone that reads this has ever come across information about this either from a doctor or reliable source, I would love to hear about it! Has your child ever had such a severe reaction?

Checking in

Sorry that we haven't posted in a while. I'm sure everyone has been as busy as we were during the Christmas season. We actually had celebrations up until the second weekend of January. So we got to celebrate Jesus extra long this year.

There's not much to report regarding Brody right now. We've been going to PT twice a week and he's doing great, for the most part. On Thursdays he's sore from Tuesday's workout so he tires out quicker. Of course that's the day I take him haha. But overall, he's really doing great. His therapist said she's seen much improvement in his leg strength just in the few weeks he's been there. She did let us know last week that she is moving in february and we'll either be getting a new therapist or she'll refer us to another facility that has a good pediatric therapist. We aren't thrilled about this since Brody is finally getting comfortable with her and changing it all up may not go over well. But, not much we can do about it.

On another note, the man of the hour is turning 4 on Thursday! He is so excited about his Mario kart party we are planning. I kinda get into birthday parties. I love finding cool ideas online and making my own DIY variations. There are some pretty cool super Mario ideas out there. Unfortunately I chose to potty train my two year old this week so I'll have to wait until the weekend to start prepping for next weeks' party. So I'll share some photos from Brody's big day.

Hope you all are having a great week!

overwhelmed

When we began this journey, we were overwhelmed. Overwhelmed emotionally. Overwhelmed with the physical task of putting on braces, doing stretches, getting therapy set up, having to help Brody with things that you typically don't have to help a 3 year old do, etc. And overwhelmed with the financial burden this would be. But in the last 2 months...the 2 months since we've created this blog and let our friends and family follow this journey with us...we've been overwhelmed again.

Overwhelmed with love and support.

You saw where our church body blessed us by hosting a massive garage sale and raising $1500 to pay for the first set of braces.

And in the last couple of weeks, we've had unexpected gifts sent or dropped by out of nowhere. We are amazed at how the Lord provides. He promises to never leave us nor forsake us. And He is holding true to that promise, as always. It is so comforting to know what we can pay for the next set of leg braces in the next 6 months to a year without worrying about where the money will come from.

So thank you friends and family...you know who you are. We can never thank you enough for loving us the way you do!

And ultimately, all praise goes to God for his provision and faithfulness. We know that he has all of this in his hands, if only we'll let go of the reins and let him lead.

Just to catch you up

Hi everyone! Sorry that its been a little while since I've posted. I've had some people ask if we were still doing therapy because I haven't been able to post pictures. Yes, we have still been at therapy, and it is going great. Matt takes him on Tuesdays and I take him on Thursdays. He's getting more comfortable with his therapist, Ms. Chelli, and seems to really be enjoying it. Today he kept saying that he was getting tired and didn't last very long on each exercise. Chelli and I even debated letting him quit early because he seemed legitimately fatigued and more clumsy than usual. But once she let him in the ball pit, he was having fun and she was able to incorporate some beneficial exercises into it and we finished out our 45 minute session. She said that playing hard has an affect on his muscles so he may have been tired from playing outside yesterday or even Tuesday. And I think I know why...

For Christmas, my grandmother (Nana) got the boys a TRAMPOLINE!! They are in heaven. They play outside more than they ever have. Brody asks to go outside pretty much the moment he gets up in the mornings. I'm able to let them go free out in the backyard for hours. They'll even eat their lunch outside, and then, get this...Brody comes in and CRASHES! He has been resisting naps for months now. He will normally go "rest" but never actually sleeps. Well, this trampoline is changing that! It wears him out and he has napped great for the last week because of it. And on top of that, it is great exercise for his legs. It works all the muscles in his legs and ankles and he's having fun while doing it! He doesn't know he gets "tricked" into exercising :) I'll post pictures soon!

So, I think you're all caught up. There's no other real news to report regarding his progress or anything. I'm working on another post about some things that I have started thinking about regarding Brody's care and "lifestyle." I want to be proactive and I feel there's a lot that we don't know and haven't been told. Stay tuned...

Physical Therapy: Session 1

Last Thursday was Brody's first real physical therapy session. (I mentioned before that he went once but it was just an evaluation.)  When he had physical therapy when he was about 2 years old, I felt it was pointless. The therapist didn't seem to know how to work with children, plus Brody was young and didn't seem to understand what to do. So I partly blame the fact that we left weeks of therapy with no progress on his age. So I was a little leery going into this first session. I didn't know if we would be heading down the same road as before. Let's just say I was highly impressed. Chelli did some fun games and exercises with him that I could totally tell were working him exactly as he needed to be worked. And for the most part, he seemed to really enjoy everything she asked him to do. She also was very good about explaining to me why she was doing each exercise and what muscles it was working. She did seem a little annoyed that I kept getting on to Brody when he would disobey what she asked him to do. We discussed this and I think we may be on the same page now. She wants him to learn to trust her and she also doesn't want him bored with an exercise and unwilling to cooperate fully. So she said that if he is disinterested, he's not going to get the full benefit. So if he walks away in the middle of it, she is ok with that and they will move on. (Matt and I on the other hand expect obedience. So it is going to be a struggle to just let him walk away after being told to complete a task such as balancing on the trampoline while catching a ball, etc just because he doesn't like it.) But its only been one session...we'll work through this part of it.

I brought my camera and captured a few of the games/exercises they were doing. I didn't get all of them so here's a quick run down of what I can remember.
-Climbing up and down stairs, alternating which legs he used to take the next step. Also worked on taking the stairs only using one foot on each stair. Currently, he steps up and puts both feet on one step before taking the next stair.
-Jumping on the trampoline, which he loved. And then standing still on the trampoline while trying to catch a ball. This works on balance and strengthens his mid-section.
-Tying his legs together with an elastic band and trying to walk around. Also, try to pull legs apart as well as up and down. (See photos)
-Holding on to the parallel bars while standing on a piece of foam with a rounded bottom. It was quite funny watching him try to keep his balance as the foam rolled back and forth.
-He is old enough to use one of the machines, which he was thrilled about. He laid flat on his back at what look like a leg press. When he pushed off, the part he was laying on slid up. The harder he pushed, the higher up he would go. He couldn't go very far, but it was fun for him for sure!
-Standing on a round disk with a ball on the bottom. She held it stable and then moved it back and forth as he played with some toys. He had to adjust his legs to keep from falling. (see photo since my description is not very clear.)
-And lastly, a ball pit. What little 4 year old doesn't love a ball pit! He was told to kick as many balls out as he could while sitting on his bottom. He went to town with this of course!

I'm so excited to watch him grow and get stronger through this therapy program. I think it is going to be very beneficial for him. We'll get to work with him and do some of the exercises at home as well, in order to keep his legs loose and help him stay strong. I'll try to document the sessions every few weeks so you can see new things he's doing and how he's strengthening. Thanks for joining us in this!