Monday, October 24, 2011

Brody's Walk

There's a good chance that everyone that reads this blog knows about our Brody's Walk project. But just in case, I wanted to do a quick rundown on here and post the links. 

After our MDA appointment, we began praying about..well, a lot of things. Praying more fervently for Brody, praying for our family, praying for wisdom, etc. Lots of praying. After a few days, we had many ideas about different ways to spread the word about CMT in general, share Brody's story, and raise money for his medical expenses. Thus, Brody's Walk was born.

We started a blog,, to have a place to share things specific to Brody and his journey with CMT, and at times, just CMT in general.  There are pages that share about Brody's story, what CMT actually is, ways to help, and more. We hope this will create an avenue for us to reach other families, specifically those with children who are fighting this disorder. We would love for this to bring us in contact with families who need Jesus and that we would be able to share His love with them, encourage them and hopefully lead them towards Christ.

We also want to use it to share fundraising opportunities and events we may have going on. We are in the process of starting ways to raise money to put into an account for Brody's medical expenses. Hopefully the blog will let others know what we have going on and how they can help Brody boy. We also wanted those who are donating or purchasing items to have a place to get information about the cause they are donating to. You can read more specifically about how we hope to use the blog here on the welcome post of the Brody's Walk blog. So we hope you'll follow, bookmark, subscribe, put it in google reader, or whatever way you keep up with your blog reading!

To begin our fundraising efforts, we started an Etsy shop. Although we are no longer running our photography business, I still adore photoshop and designing fun things. So we will be selling home decor prints and possibly stationery products. So far, I've been able to put together a few pieces of scripture art and am working on getting more designed and up for sale. We've already had a great response and are excited about the possibilities. Check out the shop

Lastly, we set up a facebook page for Brody. We aren't actually on facebook personally, but we know that it is the best way to reach the masses. News travels fast when just one person posts something. So we thought what better way to get our friends and family to help spread the word about Brody's Walk than through facebook! So if you're a facebook user, "like" Brody's Walk Facebook page!

Although the circumstances in which we created this project are not exciting, it is exciting to see how God is going to use this circumstance to bring glory to Himself. We've said from the beginning that we knew God was going to use this in a mighty way and I pray that this is part of that. We hope you'll join us in this journey! The links are scattered throughout this post, but I've listed them over on the side of the blog for quick reference as well.

Thursday, October 20, 2011

Brooks: 5 Weeks

Poor Brooks. His 1 month milestone was overshadowed by Brody's MDA appointment and the projects related to that that we've been working on. (More info to come soon but I'm sure most of you already know about some exciting things we're working on to help Brody's journey! But we'll detail them on here soon just in case someone missed out!)

Back to Brooks...This little man is growing like crazy. It amazes us how fast he changes. He looks different almost every day. And I think what we are most shocked about is that he does not look as much like the other 2 as we thought he would. For those who are rolling your eyes thinking "Yes he does, you just don't see it because you're his parents" well, we do admit that too. We do think he looks like them, especially their baby pictures, but we don't think he's the spitting image of either of them. He has light hair..both older boys had dark hair. He has blue eyes..and very deep blue eyes. We know they could still change and turn brown like the others. But for now, I'm holding tight to those blue eyes. And his complexion is more fair than the other 2. They were both born with olive skin.  So he's definitely his own little person!

He started smiling a week ago right at the one month mark. His little smiles are few and far between and he doesn't necessarily smile at us or because of anything we do. He mostly smiles at toys or random things like the wall as he's getting his diaper changed. But none the less, its still adorable. I can't wait for him to smile in response to us and to hear a little giggle from him. I know that's coming sooner than I think!

 I was trying to get a shot of him in his "tie" but he kept blocking it with his hands. We were going to a wedding for one of Matt's old roommates and he need to dress up :)

 A small smile..and a double chin...caught on camera.

 This is totally out of focus. But I had so save it. I love the look he's giving Brody.

I promise to keep posting more pictures. We're still trying to get into a routine with 3 kiddos so I've been forgetting to do things that I NEVER would have forgotten on the first born :)

Wednesday, October 12, 2011

brody's jouney: MDA appointment

Instead of rewriting a long post, I'm going to paste an email that I just sent out to our family and friends. PS...If I forgot to include you on the email, please forgive me! I knew you'd see it here anyway :)

Hopefully this email doesn't just ramble on and on. There's kind of a lot to cover so I'll try to keep it concise and easy to understand haha. Just a QUICK overview for those who are "new" to Brody's condition....

In January Brody was diagnosed with Charcot-Marie-Tooth (CMT) disease. This was discovered after we started seeing doctors and having tests done because of his leg weakness, not walking on time, continually falling down, etc. Over the last year and a half he's been in physical therapy, had 2 sets of leg braces, and been poked and prodded more than any little boy deserves. After ruling out lots of scary diseases, he was finally diagnosed with Charcot-Marie-Tooth. Quick explanation: a neurological disorder that causes damage to the peripheral nerves which causes muscle weakness and wasting, pain, tightening, loss of balance, (all things brody has) and other things that Brody hasn't shown signs of yet.

CMT falls under the Muscular Dystrophy umbrella, therefore our genetics dr referred him to the MDA clinic at Texas Children's. We had our appointment today and met with Dr. Abid. She was very knowledgable of the disease and explained more to us. The first thing she told us is that she wanted to order a panel of tests that would pinpoint which strain of CMT Brody has. (There are like 14 different kinds). However, we've already tried this and our insurance won't pay for costs more than a small car. So the team at TX Children's is working on getting letters, etc together to get the insurance to pay for this. By pinpointing the exact type of CMT Brody has, we can A) determine how progressive it will be and B) determine if Carson and Brooks will have it as well. The disease doesn't always show symptoms right away and can onset later in life. So although Carson seems perfectly fine, he could potentially show symptoms later on. However, we are praying against that!!

The next important thing we learned today is that Brody needs to still be wearing leg braces. He outgrew his last pair last winter and we were waiting for this appointment to get a new prescription. Dr. Abid explained to us how this disease requires constant maintenance. While wearing the braces for a short time can make it appear that Brody is "getting better", by not wearing them his legs go straight back to the way they were. The muscles tighten up again and his achilles tendons get tight and cause his feet to "drop." (They are pointed towards the ground more than they should be and cause him to walk stiff and trip.) Wearing the braces works on correcting this. So we learned that he has to be in leg braces until we hear otherwise..and it could be years of this. She also said he needs to be in physical therapy twice a week. Stretching and exercising work to keep his muscles strong and should prevent the disease from progressing as fast. Lack of activity will lead to muscles wasting and atrophy, causing him more severe symptoms. So although there is no cure, excercise can help keep it from getting bad as quickly.

I feel like we learned a lot more. I know I'm forgetting something. But I think this is all the vital information that I knew those who are praying for us would want to know. I think this was a wakeup call for both Matt and I. We both felt like he was getting stronger and didn't really think about how this is a lifelong battle. I think we probably wanted to block it out..if he seemed ok then maybe nothing was really wrong with him. But she made it very clear to us today that we need to constantly be aware of the treatment he needs and do whatever it takes to "maintain" his muscle strength. Some forms of CMT progress rapidly and others progress more slowly. Since we have no idea what form he has, we don't want to just assume his will never get any worse. And even with the proper therapy, there are still no guarantees it won't progress quickly. So it was somewhat overwhelming to hear that today.

How you can pray for us:
We still believe God can fully heal Brody if he chooses to, so prayer for healing is always apprectiated.
Pray for comfort for us as we process and take the next steps in getting the proper care for him.
Pray that we will not be overwhelmed with the financial burden this is going to bring. Each set of braces costs around $4000. He is growing fast and we know he'll need a new set once a year probably.We will also have to pay about $250 a month in physical therapy. We have full confidence that the Lord will provide so just pray that we will keep that confidence when circumstances may not appear to be working out like we planned.

Thank you all for caring and loving our family! We couldn't do this without all of you!

Tuesday, October 4, 2011

Sip N' See

Leigh Ann and Dena put together a Sip N' See essentials shower for us after Brooks was born. My friends from church had hosted a prayer shower where I was loaded with essentials so we thought it would be cool to wait until after he was born to have a family shower when I knew more of what I still needed and also so the family could meet the little guy. It was such a cool idea and I think everyone should do this from now on! I think the guests enjoyed getting to love on the baby that they had brought gifts for!

As always, Leigh Ann did a great job decorating and preparing food for the shower. She chose a transportation theme, which matched perfectly with Brooks' room decor.

 We all had to guess what each baby food was. Simple, but cute shower game.

 Adorable transportation puzzles that Brooks got to bring home for his room.

 The man of the hour was on display, of course!

Love the use of onezies as decor!

See that cheesecake under the glass? It was amazing..chocolate chip cookie crust, cheesecake, drizzled with melted chocolate. 
 Nana and Brooks (my grandmother)
 Meeting Aunt Nikki and Macy (can you believe she's his GREAT aunt)

Memaw and Brooks (Matt's Grandmother)

I'm sad I didn't get pictures with Brooks and everyone else at the shower. We'll have to get around to that soon!

baby brooks: the first 3 weeks

*Don't be let down by the lack of photos in this post. Somehow iphoto was uninstalled from my computer and I can't get into all my photos. The ones I have here were still on my camera. And someone please tell me how to get iphoto back!! 

The first 3 weeks with Brooks have really flown by. I feel like our family is adjusting really well, besides Matt and I being a little more tired than usual. 

Of course the big brothers still love him to pieces, but I think the new is kind of wearing off. They are interested in him when he's in the room making noise or he's upset, but they've stopped asking where he is when he's in his crib and they can't find him. Honestly, this is a little bit of a relief for me. For the first couple of weeks they were constantly trying to find where he was sleeping, going in the room, trying to "help" but really waking him up and making things more complicated haha. We've been patient with them because it really is sweet how much they love him...but like I said, I am relieved that they aren't quite as obsessed as they were. Surprisingly, they are both very good helpers. I was expecting this from Brody, but I am pleasantly surprised at how willing Carson is to help with getting diapers, running for a burp cloth or blanket, etc. If only they would stay this way for the next 18 years...

What we've done the last 3 weeks:

Weekly visits from Andrea aka Dre Drea. We love our time with her!

Sip N' See - At 10 days old, we traveled to Aunt Leigh Ann's house in Houston for a Sip N' See shower. Family from both sides came to see him, most for the first time. We thought this was a fun way to have an essentials shower for him, but also create a way for out of town (and local) family to get to spend time loving on him. The next post will be details and photos from this shower. 

2 Week Checkup - At 2 weeks, he weighed 7lbs 14oz. When we left the hospital he was 6lbs 12oz. So he gained a pound in 2 weeks. I'd say he's eating well! Dr. Ransom said he looked great and was a healthy, growing boy. 

Although he is only almost 3 weeks old, he's already shown us there are certain things he likes, as well as a couple of dislikes. Who knew he'd be so opinionated this early!

Likes: Being swaddled, eating (praise the Lord!), his sleep sheep (thank you Beth for this sweet gift!), paci, his play gym

 Our little burrito. 

The sleep sheep plays various soothing sounds such as ocean waves and a trickling brook. It also has a little strap that lets you attach it to a car seat, etc to take on the go. We don't use this at every nap/bed time because I don't want him to be dependent on it to go to sleep, but I definitely turn it on when he's having a hard time drifting off. It usually works almost immediately. 

A little cross-eyed trying to focus on the toys. 

Dislikes: his gassy tummy. he gets so angry when he needs to burp or poop. baths. but i think he'll come around to those soon.

Hopefully I'll be good about posting once a week with updated photos of all 3 boys. But don't hold me to that...I do have a newborn and 2 other crazy boys to chase around.