Wednesday, July 18, 2012

July Update

Well, its been another 2 months since I've posted. Still nothing all that ground breaking to report. Well, maybe more than last time...

Since I've posted last, we've had some major changes in our insurance. We went from having very little coverage for Brody, to being told it was going to cost OUTRAGEOUS amounts in premiums to cover him, to now having great coverage for him. So we'll see if that holds true once we start making claims. But as of now, we seem to have a great setup for him and his expenses. That being said, we are holding off on any more fundraisers, garage sales, etc. We have a nice little cushion in his medical account in case anything comes up unexpected that the insurance won't cover. We've also converted the etsy shop to a personal shop instead of using it to raise money for him. At this time, we don't feel it would be right to keep raising money for his expenses when we are under the impression from his insurance company that they are going to take care of everything. This all may change in the coming months/year, but until then..all we can say is THANK YOU to all who have supported, donated, etc. We are beyond amazed at how the Lord has provided.

In other news, Brody is still not attending physical therapy. The new insurance just took effect this month and we haven't checked on getting him in at the rehab center. As far as we know, they still don't have a full time therapist for him. However, we do more productive exercise at home than I ever saw him do at therapy, and more times per week, so I think he's probably getting all he needs right now. I may have mentioned in the last post that he has an extensive program that his former therapist laid out for us that we do a few times per week. And he feels like he's getting to play with Dad instead of doing "therapy" so its a win-win for all of us.

As far as progression, I've noticed lately that he's falling a lot more. His ankles just seem to give out from under him. He can be standing still and just fall for what looks like no reason. So walking, running, etc definitely make it worse. He usually hops up and says he's ok..but there have been times more recently that I'll notice him grab his ankle and wince. Or even tell us he feels like he twisted his ankle. So far he hasn't sprained it or done anything serious. I know this is all part of it. I knew one day we might start seeing more of this. But it still breaks my heart every time. He still never asks us why he falls more than other kids. Or why he has to wear the braces and other kids don't. I'm not looking forward to the day he does...

Friday, May 11, 2012

Checking In...

Sorry we've been a little out of touch lately...lots has been going on. We've had you know, just normal life, as well as lots of craziness with insurance, fundraising, etc. So we've been preoccupied and unable to blog much.

In early April we learned that because of Brody's CMT, our insurance premium was doubling. We are already paying a pretty high premium, so doubling it is not an option for us. So we began to get quotes from other companies. However, we learned that although they can't deny Brody because he is a child, they would be charging us the same high rates because of his condition. So we've been jumping through hoops, filling out applications, and talking with everyone who knows anything about this type of dilemma. It has been stressful, to say the least. But the Lord has had his hand on us through all of it. We've had a peace about all of it, and know that He will provide whatever solution is best for us.

In the meantime, my family hosted a garage sale a couple of weeks ago. My family, as well as a lot of their co-workers, donated a LOT of stuff and we had another huge, successful sale. We made about $1700! So there's another set of braces paid for!! I have a feeling we'll be buying those later this year as Brody seems to be growing taller these days. So thank you to all of you who priced, sorted and worked the sale. We could never thank you enough for all of the love and encouragement you give us daily!

Brody still hasn't been in physical therapy for a couple of months. We are out of visits with our current insurance plan (it is still in effect until June 30) and there is still no full-time therapist at his rehab center. However, he has been adamant about doing his at home exercises. His former therapist left us with very detailed exercises for him...stretches, activities, etc and he loves it. Some of it is painful, especially the stretching, but he pushes through and asks to do it every night. Last night he even said "Can I do exercises tonight instead of picking a book before bed?" So hopefully this is keeping him on track as far as strengthening his legs and preventing deterioration.

So there's a quick update. I hope to be better about posting more often, especially as things happen worth blogging about. We've got an exciting Mother's Day weekend planned...Baby Brooks is being dedicated at church on Sunday, and we are cooking a Mother's Day lunch for our moms and sisters. Hope everyone else has a wonderful Mother's Day as well!!

Friday, March 9, 2012

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!

Thursday, February 16, 2012

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! 

Tuesday, January 24, 2012

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" 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 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?

Tuesday, January 17, 2012

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!

Tuesday, December 20, 2011


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 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.