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.
Tuesday, December 20, 2011
Thursday, December 15, 2011
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...
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...
Tuesday, December 6, 2011
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!
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!
Wednesday, November 30, 2011
They're Here!!
Finally, after weeks of waiting, numerous phone calls made, faxes being sent but never received and then resent, we have the leg braces. We picked them up yesterday. And of course, nothing can ever go smoothly or exactly as planned with us.
A little background, once we found out Brody was going to have braces again, we started pumping him up about getting them. He knew right away that he wanted green..light green to be exact. Well, when we went for the fitting a few weeks back, I forgot to tell them green. So I had to call the following week. They told me they can do colored straps, but the actual brace would be white. So green straps were going to have to suffice. So for weeks we have talked about these cool white and green special shoes that Brody would be getting....
Flash forward to yesterday...in walks the guy with the braces...white braces with BLUE straps. Matt and I looked at each other in panic. And the first words out of Brody's mouth..."I wanted green ones." It was a sweet little whimper, almost like he knew he shouldn't complain, but he really wanted green. We immediately asked the guy about it and apparently there was a miscommunication somewhere. Fortunately, it wasn't a huge deal. We did all the fitting, trying them out, etc and then they could swap the straps out in a couple of hours. I was able to go back later that afternoon to pick up some super cool white braces with GREEN straps.
And here's the best part...you know how we made $1500 at the garage sale? Well....after the insurance paid their part, the braces only cost us $1300!! We were completely shocked! I mean, we shouldn't have been shocked...we should have known God would provide. He is constantly reminding us how BIG He is.
Eventually, he will wear them all day, every day. But to start out, we gradually add more time each day. He wore them about an hour last night. He wore them a little this morning, and I will put them on him again after his nap, before we head to church. Then tomorrow we do the same, just adding more time, and so on, until we work him up to all day, and even night. The brace is spring loaded in the ankle, which puts a constant pull on his foot to hold it up. (to the position that yours and mine is in) Therefore, it makes his little legs sore because of the strain it puts on them. Eventually he'll get used to it and hopefully the muscles will loosen in his tendons and it won't be as hard on him.
We try to really hype them up as "cool shoes, special shoes, etc." We don't want him to feel different or not "normal" because of them. Last night when we were putting them on to head to hope group (our church small group), Carson said "hey, i don't have those cool shoes like Brody." So apparently, now our other child feels left out haha. Who would have thought. But I do think this is going to be the hardest part for me as a mother. He was so young when he wore his first set of braces. Kids didn't notice, and if they did, he didn't understand anything. Now that he is almost 4, he definitely understands if kids make fun of him. It pains me to think of him being rejected or called names because of his leg braces. But this is probably more of a personal, protective mom problem haha. I'm sure Brody will take it in stride. And he has some pretty cool friends..they will probably think the braces are super cool!
Brody wanted to show them off last night.
And more news....we start physical therapy tomorrow!! We go twice a week..Tuesdays and Thursdays!! So excited to get this rolling. I plan to bring my camera so we can share this experience with you as well!
A little background, once we found out Brody was going to have braces again, we started pumping him up about getting them. He knew right away that he wanted green..light green to be exact. Well, when we went for the fitting a few weeks back, I forgot to tell them green. So I had to call the following week. They told me they can do colored straps, but the actual brace would be white. So green straps were going to have to suffice. So for weeks we have talked about these cool white and green special shoes that Brody would be getting....
Flash forward to yesterday...in walks the guy with the braces...white braces with BLUE straps. Matt and I looked at each other in panic. And the first words out of Brody's mouth..."I wanted green ones." It was a sweet little whimper, almost like he knew he shouldn't complain, but he really wanted green. We immediately asked the guy about it and apparently there was a miscommunication somewhere. Fortunately, it wasn't a huge deal. We did all the fitting, trying them out, etc and then they could swap the straps out in a couple of hours. I was able to go back later that afternoon to pick up some super cool white braces with GREEN straps.
And here's the best part...you know how we made $1500 at the garage sale? Well....after the insurance paid their part, the braces only cost us $1300!! We were completely shocked! I mean, we shouldn't have been shocked...we should have known God would provide. He is constantly reminding us how BIG He is.
Eventually, he will wear them all day, every day. But to start out, we gradually add more time each day. He wore them about an hour last night. He wore them a little this morning, and I will put them on him again after his nap, before we head to church. Then tomorrow we do the same, just adding more time, and so on, until we work him up to all day, and even night. The brace is spring loaded in the ankle, which puts a constant pull on his foot to hold it up. (to the position that yours and mine is in) Therefore, it makes his little legs sore because of the strain it puts on them. Eventually he'll get used to it and hopefully the muscles will loosen in his tendons and it won't be as hard on him.
We try to really hype them up as "cool shoes, special shoes, etc." We don't want him to feel different or not "normal" because of them. Last night when we were putting them on to head to hope group (our church small group), Carson said "hey, i don't have those cool shoes like Brody." So apparently, now our other child feels left out haha. Who would have thought. But I do think this is going to be the hardest part for me as a mother. He was so young when he wore his first set of braces. Kids didn't notice, and if they did, he didn't understand anything. Now that he is almost 4, he definitely understands if kids make fun of him. It pains me to think of him being rejected or called names because of his leg braces. But this is probably more of a personal, protective mom problem haha. I'm sure Brody will take it in stride. And he has some pretty cool friends..they will probably think the braces are super cool!
Brody wanted to show them off last night.
So discreet under his jeans.
And more news....we start physical therapy tomorrow!! We go twice a week..Tuesdays and Thursdays!! So excited to get this rolling. I plan to bring my camera so we can share this experience with you as well!
Saturday, November 19, 2011
Unreal
I can't even begin to put into words how thankful we are for our family and friends who donated items to the garage sale. Brody is truly loved by so many of you and we are so grateful.
I feel like this entire week was a whirlwind for myself, as well as the other ladies who put in lots of hours sorting through boxes upon boxes upon boxes of things. I joined in on the sorting fun starting on Wednesday, but I know Kristen and Tara worked on it all week long, not counting all the time Kristen spent collecting donations from people for the last 2 weeks. I don't know about the other ladies, but I think I had this idea in my head that by Friday night everything would be perfectly organized, on tables, and priced. How wrong was I!! There was SOOOO MUCH STUFF that it was impossible to price items individually. And impossible to put it on tables by 10pm, close the garage and go to sleep. So what happened?? Matt and I stayed with Cindy, Tara, and Kristen until 1:00am setting up tables and items in the driveway. We headed home to let Brooks sleep in his bed and get a couple hours of sleep. We assumed that the girls would crash too and we'd meet them at 5:30am to finish dragging everything out. When we returned, every table was set up, every item was on display. The entire driveway and front yard were overrun with clothing, home decor, sporting goods, tools, toys, baby gear...you name it, we had it. We had enough to have 2 large garage sales. And my dear friends NEVER WENT TO SLEEP so that it was all set up and ready for our first customers. (who started coming at 6am even though we advertised 7am) And despite that, they were chipper and happy all day as they sold and dealt with professional hagglers.
I was (and still am) blown away by their hearts and attitudes this entire week. I never once heard them complain about how much work it was. Kristen never seemed to mind that her home was overtaken by other people's junk all week. They never batted an eye about the fact that they had to stay up all night and work until almost 3pm today to run the sale and clean up.
I don't even think saying "Thank You" is enough. We truly, truly appreciate everyone who pitched in. The husbands for giving up their wives, as well as working the sale today(Thanks Ken!), those who donated, the dear ladies who worked like crazy today to raise money for our Brody Boy! We love you all!!
So, how much did we raise, you ask? More than we ever imagined. $1500!!!! That is incredible to me! We had $900 of it by 8am. And we still have enough stuff leftover to have an entire other garage sale. So we plan to do another one, hopefully fairly soon. So those who donated items, hopefully by the end of the next sale, nearly every item will be sold and put towards Brody's expenses.
I feel like this entire week was a whirlwind for myself, as well as the other ladies who put in lots of hours sorting through boxes upon boxes upon boxes of things. I joined in on the sorting fun starting on Wednesday, but I know Kristen and Tara worked on it all week long, not counting all the time Kristen spent collecting donations from people for the last 2 weeks. I don't know about the other ladies, but I think I had this idea in my head that by Friday night everything would be perfectly organized, on tables, and priced. How wrong was I!! There was SOOOO MUCH STUFF that it was impossible to price items individually. And impossible to put it on tables by 10pm, close the garage and go to sleep. So what happened?? Matt and I stayed with Cindy, Tara, and Kristen until 1:00am setting up tables and items in the driveway. We headed home to let Brooks sleep in his bed and get a couple hours of sleep. We assumed that the girls would crash too and we'd meet them at 5:30am to finish dragging everything out. When we returned, every table was set up, every item was on display. The entire driveway and front yard were overrun with clothing, home decor, sporting goods, tools, toys, baby gear...you name it, we had it. We had enough to have 2 large garage sales. And my dear friends NEVER WENT TO SLEEP so that it was all set up and ready for our first customers. (who started coming at 6am even though we advertised 7am) And despite that, they were chipper and happy all day as they sold and dealt with professional hagglers.
I was (and still am) blown away by their hearts and attitudes this entire week. I never once heard them complain about how much work it was. Kristen never seemed to mind that her home was overtaken by other people's junk all week. They never batted an eye about the fact that they had to stay up all night and work until almost 3pm today to run the sale and clean up.
I don't even think saying "Thank You" is enough. We truly, truly appreciate everyone who pitched in. The husbands for giving up their wives, as well as working the sale today(Thanks Ken!), those who donated, the dear ladies who worked like crazy today to raise money for our Brody Boy! We love you all!!
So, how much did we raise, you ask? More than we ever imagined. $1500!!!! That is incredible to me! We had $900 of it by 8am. And we still have enough stuff leftover to have an entire other garage sale. So we plan to do another one, hopefully fairly soon. So those who donated items, hopefully by the end of the next sale, nearly every item will be sold and put towards Brody's expenses.
Tara and Kristen probably around 9pm last night..before the all nighter.
These photos really don't do it justice. It doesn't even look all that large in the photos...but it was huge!
We had a poster explaining what we were raising money for. We were able to share a little about Brody when people asked, as well as about our church and the body coming alongside us to put on the sale.
Matt and Ken don't appear to doing much but cutting up right here. They were probably talking about some fantasy football trade or something. But we really put these 2 to work today.
Cindy making a sale...and it was a BIG one :)
Thursday, November 3, 2011
Brody's Walk Garage Sale
image from google.com
So, that being said...its time to go through your closets, dig under your bed, and clean out your attic!! We are collecting donations so if you have anything you need to get rid of and want to pitch in, it is greatly appreciated!
The garage sale is set for Nov. 19 in College Station. Its somewhat of a quick turnaround, but they wanted to get it done before it got too cold and before the holidays started. If you have anything you'd like to donate, you can contact me at brodyswalk @ gmail . com (ps did you know you are supposed to put spaces in your email in posts to prevent spammers..I learned that recently) or if you have my personal email you can email me there as well. We will coordinate picking up/dropping off donations.
Please have all donations to us by Wednesday, Nov. 16 so that we have time to price and set up.
For those in the Lumberton area who would like to donate, we are working on a way to get donations here. However, they may need to be brought up next weekend so that only leaves a week. Sorry for the short notice. Please contact me for more information.
Also, feel free to pass this information on to your friends and family who may not know us or know anything about Brody's Walk and spread the word about the sale.
We are so blessed by all of you. We're seeing the Lord provide in ways we never imagined. God is always so faithful.
Tuesday, November 1, 2011
Physical Therapy: Day 1
Image from google.com
This first session actually ended up being an evaluation, which makes sense. She did a Peabody test on him where she evaluated him walking, jumping on one leg, hopping, climbing stairs, pushing, pulling, running, throwing a ball, etc. She tested just about every physical developmental milestone possible. And of course, the results came back as we expected...above average upper body strength and weak lower body. She actually told us that he is about a year behind his peers in lower body ability..jumping, hopping on one leg, climbing, bending, squatting, etc.
I was impressed that she was familiar with CMT. I didn't know if therapists were taught about these conditions or not. So she knew he would have foot drop and tight achilles tendons. She knew that he needed AFOs and that his problem was not going to be "fixed" with therapy, but that the work she does will hopefully slow the progression. She also told us our end goal is still for him to graduate from therapy. Although that's good news, I have to admit I'm still skeptical of that. From everything the doctors have told us, we don't see how NOT being in therapy is going to be beneficial. But I guess her point is that after 6 months of therapy, hopefully she will have trained us to where we can do all the proper exercises and playful activities with him at home ourselves. She did say that if we aren't ready for him to "graduate" after 6 months or if he takes some time off but needs to come back, that's no problem. So I guess we'll just see how we feel he's doing when the time comes.
She's going to take the next couple of weeks to put together an exercise program for him and submit it to his doctor for approval. So we'll start our scheduled visits in the next couple of weeks. I plan to bring the camera (or send it with Matt) so that we can document for ourselves, as well as share with you.
Coming up next...Should be picking up the AFOs (leg braces) either this week or next!! I will definitely bring the camera to that appointment!
Wednesday, October 26, 2011
Genetic Testing
We've had some questions about the genetic testing that I may have mentioned on here or in an email we sent out to our friends and family. So I thought I would TRY to explain what it is and why we may or may not need it.
I'm not an expert on all these terms and how the testing works..so I'm explaining it to the best of my understanding. If you read the What is CMT page, you saw that there are quite a few different kinds of CMT. Each one can bring on different symptoms later in life. Some are more debilitating than others. Some produce severe symptoms while others may not progress as fast. We do not know which type Brody has. We do know that its not CMT1A, the most common form of CMT. Once they rule out CMT1A, it takes specific genetic testing to determine which gene is mutated or defected. The lab that does these tests has a patent on it, therefore it is OUTRAGEOUSLY expensive.
Our genetics doctor originally ordered just 3 tests to be done, the ones she thought were the most likely. Well, the insurance denied coverage of that. So nothing came of it. When we met with the MDA doctor a couple of weeks ago, she wanted to order the entire panel of tests which would test for every type of CMT at once. We explained that the insurance wouldn't pay for 3, so we definitely wouldn't expect them to pay for the entire panel. So she's putting in a request for just 1 test and we'll see what response we get.
So why does Brody need these tests done anyway? Why do we need to know what form of CMT he has? The treatment is the same no matter which type it is. There are a couple of reasons why knowing what gene is affected would be beneficial. But at the same time, knowing ultimately doesn't change much. He would still receive the same care and medical treatment, obviously with some variation depending on how severe his symptoms get. Basically, knowing what type of CMT Brody has would shed light on 2 things:
-Knowing what to expect in the future for him. Knowing the type could tell us what typically happens to patients with that type. Will he be in a wheel chair, or use a cane, or lose the use of his hands, or never progress any worse than he is now? I guess we would be mentally prepared for the possibilities.
-Knowing if our other children (or family members) are affected. Some patients show signs of the disease early in life, like Brody, while in others it may not rear its head until the teen years or even later in life like 30s or 40s. So although our middle child shows no signs of it, it doesn't mean that symptoms couldn't onset later on. (that baby is too young to tell if he has symptoms) So I guess knowing this would help prepare us for the possibilities of them ending up with the disease. And, depending on the exact strain, help our siblings know if they should look for signs of it in their children. If we knew which one of us was the carrier, it may shed light onto some family genetic history and we would know if others could potentially be affected.
But despite the "knowledge" this would bring, ultimately, we aren't stressed about the genetic tests, especially if the insurance isn't going to pay for it. If they agree to, great. But if not, its not something we are raising money for or are going to be worried about not having done. Because ultimately, we can't change anything, no matter what the results said.
"Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough troubles of its own." Matthew 6:34
"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6
I hope this somewhat explains the genetic testing to those are have asked. We are all learning about this together and we appreciate those of you who are along for the ride with us.
I'm not an expert on all these terms and how the testing works..so I'm explaining it to the best of my understanding. If you read the What is CMT page, you saw that there are quite a few different kinds of CMT. Each one can bring on different symptoms later in life. Some are more debilitating than others. Some produce severe symptoms while others may not progress as fast. We do not know which type Brody has. We do know that its not CMT1A, the most common form of CMT. Once they rule out CMT1A, it takes specific genetic testing to determine which gene is mutated or defected. The lab that does these tests has a patent on it, therefore it is OUTRAGEOUSLY expensive.
Our genetics doctor originally ordered just 3 tests to be done, the ones she thought were the most likely. Well, the insurance denied coverage of that. So nothing came of it. When we met with the MDA doctor a couple of weeks ago, she wanted to order the entire panel of tests which would test for every type of CMT at once. We explained that the insurance wouldn't pay for 3, so we definitely wouldn't expect them to pay for the entire panel. So she's putting in a request for just 1 test and we'll see what response we get.
So why does Brody need these tests done anyway? Why do we need to know what form of CMT he has? The treatment is the same no matter which type it is. There are a couple of reasons why knowing what gene is affected would be beneficial. But at the same time, knowing ultimately doesn't change much. He would still receive the same care and medical treatment, obviously with some variation depending on how severe his symptoms get. Basically, knowing what type of CMT Brody has would shed light on 2 things:
-Knowing what to expect in the future for him. Knowing the type could tell us what typically happens to patients with that type. Will he be in a wheel chair, or use a cane, or lose the use of his hands, or never progress any worse than he is now? I guess we would be mentally prepared for the possibilities.
-Knowing if our other children (or family members) are affected. Some patients show signs of the disease early in life, like Brody, while in others it may not rear its head until the teen years or even later in life like 30s or 40s. So although our middle child shows no signs of it, it doesn't mean that symptoms couldn't onset later on. (that baby is too young to tell if he has symptoms) So I guess knowing this would help prepare us for the possibilities of them ending up with the disease. And, depending on the exact strain, help our siblings know if they should look for signs of it in their children. If we knew which one of us was the carrier, it may shed light onto some family genetic history and we would know if others could potentially be affected.
But despite the "knowledge" this would bring, ultimately, we aren't stressed about the genetic tests, especially if the insurance isn't going to pay for it. If they agree to, great. But if not, its not something we are raising money for or are going to be worried about not having done. Because ultimately, we can't change anything, no matter what the results said.
"Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough troubles of its own." Matthew 6:34
"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6
I hope this somewhat explains the genetic testing to those are have asked. We are all learning about this together and we appreciate those of you who are along for the ride with us.
Thursday, October 20, 2011
Comes with the Territory
Its kinda funny to me that the first week we have this blog going for Brody, he has his first real CMT related injury. One of the major issues CMT patients deal with is falling down for what appears to be no reason. To others, it looks as if they just trip over air. Brody does this constantly throughout the day and usually just pops back up and says "I'm ok." The reason is that they have "foot drop" and their feet point down towards the ground. So they have to work harder to take steps to keep their toes from getting caught on the ground and causing them to trip.
Well, today, he was not ok. The poor guy fell while walking, but he went a little more "head first" than usual. He hit his head on the corner of a cute little foot stool the boys have in their room to help them climb into their beds. And he hit it hard. He was crying, blood was pouring, and I had a newborn in my hands. I ran for a towel and my cell phone. I don't even know if Matt heard complete sentences on the other end of the phone through the crying of Brody and the baby, as well as me being slightly panicked and probably somewhat over reacting. But I obviously got the message across because he showed up at home soon with a co-worker who was a former paramedic.
We decided that Matt should bring him in to the pediatrician. We didn't want to risk assuming it was no big deal and then it turn out to be worse than we thought. Matt said he was very glad we made that decision. As they cleaned it out he saw how deep it actually was and was afraid had we not gone in, it wouldn't have healed properly.
So now he's all super glued up. No need for stitches, thank goodness! Injuries like these are things that we can't always prevent from happening. We can't follow him around or keep him in a bubble to keep him safe. We just have to teach him to try to be a little more cautious. But more importantly, keeping him in his leg braces and doing his therapy will hopefully help prevent these type of things from happening.
Well, today, he was not ok. The poor guy fell while walking, but he went a little more "head first" than usual. He hit his head on the corner of a cute little foot stool the boys have in their room to help them climb into their beds. And he hit it hard. He was crying, blood was pouring, and I had a newborn in my hands. I ran for a towel and my cell phone. I don't even know if Matt heard complete sentences on the other end of the phone through the crying of Brody and the baby, as well as me being slightly panicked and probably somewhat over reacting. But I obviously got the message across because he showed up at home soon with a co-worker who was a former paramedic.
We decided that Matt should bring him in to the pediatrician. We didn't want to risk assuming it was no big deal and then it turn out to be worse than we thought. Matt said he was very glad we made that decision. As they cleaned it out he saw how deep it actually was and was afraid had we not gone in, it wouldn't have healed properly.
So now he's all super glued up. No need for stitches, thank goodness! Injuries like these are things that we can't always prevent from happening. We can't follow him around or keep him in a bubble to keep him safe. We just have to teach him to try to be a little more cautious. But more importantly, keeping him in his leg braces and doing his therapy will hopefully help prevent these type of things from happening.
Tuesday, October 18, 2011
Welcome
Welcome to Brody's Walk!! We're so glad you stopped by to learn more about Brody's condition and to see how he is being such a champ through it all. Before I say anything else, I just want to give thanks to the Lord for all he is doing through us during this time. We never imagined we'd have a child with a "special need", and although Brody's disorder is not life threatening, it has still been taking quite an emotional toll on us as we process all the possibilities. But God has already proven himself faithful just in the last week and has given us peace, comfort and support through our friends and family. We know its going to be a hard journey but we fully believe that God has it all in His hands, even when it doesn't appear that way.
So, what's this site about? We'd never considered having a special blog just for Brody. We don't want him to get "special treatment" or to be treated like he's different. He is just like any other child when it comes to mental capability and cognition. His only disability is physical. So although he'll need special attention at times when it comes to accomplishing physical tasks (climbing stairs, getting dressed, etc) he is a normal 3 year boy! So why does he get a special blog??
You can get the longer version of the story on the "Brody's Story" page above, but the quick version is that until last week, we were honestly naive about our son's disorder. We were maybe in denial about the long-term care he'll need. We pushed the possible progression of CMT and how bad it can get out of our minds. And last week we were hit with the cold hard truth from his new doctor at the MDA clinic. We learned of the struggles he could have. Of the emotional roller coaster we'll go on. Of the financial burden this will be. But most importantly, we realized how much we'll have to rely on God. (how sad that I forget that sometimes). We took a couple of days to process and then I started coming up with ideas.
So, reason 1: I realized that there are other parents out there who have children with the same disorder. Some may be in worse condition than Brody. And they may feel alone. Maybe by having this blog set up we can reach out to those parents. Offer them encouragement and hope by sharing Jesus with them.
reason 2: We know that God will provide financially. And yes, if He wanted to, he could drop money out of the sky. But when He says He'll provide, it may mean through using our talents that we have to raise funds. I have a graphic design background and we are working on an etsy shop that will be filled with scripture art for the home, stationery products, etc. Through Matt's industry, we may have opportunities for fundraisers, raffles, etc. So we felt that having a blog would be a great way for those who are purchasing items or participating in fundraisers to be able to learn about the cause that they are donating to. Also, the blog (and facebook page) are great ways to alert the community of fundraisers or events that are taking place.
And the last reason that this blog is separate from our family blog is that we don't want our personal family blog to be made available for the general public to see.
Thanks again for stopping by. Give us a few days to get all the kinks worked out, get all the info pages completed, etc. We hope that you'll bookmark this page, become a follower, etc and stay up to date with Brody's journey, how you can be praying for us and be a part of all the ways God is going to use this experience.
So, what's this site about? We'd never considered having a special blog just for Brody. We don't want him to get "special treatment" or to be treated like he's different. He is just like any other child when it comes to mental capability and cognition. His only disability is physical. So although he'll need special attention at times when it comes to accomplishing physical tasks (climbing stairs, getting dressed, etc) he is a normal 3 year boy! So why does he get a special blog??
You can get the longer version of the story on the "Brody's Story" page above, but the quick version is that until last week, we were honestly naive about our son's disorder. We were maybe in denial about the long-term care he'll need. We pushed the possible progression of CMT and how bad it can get out of our minds. And last week we were hit with the cold hard truth from his new doctor at the MDA clinic. We learned of the struggles he could have. Of the emotional roller coaster we'll go on. Of the financial burden this will be. But most importantly, we realized how much we'll have to rely on God. (how sad that I forget that sometimes). We took a couple of days to process and then I started coming up with ideas.
So, reason 1: I realized that there are other parents out there who have children with the same disorder. Some may be in worse condition than Brody. And they may feel alone. Maybe by having this blog set up we can reach out to those parents. Offer them encouragement and hope by sharing Jesus with them.
reason 2: We know that God will provide financially. And yes, if He wanted to, he could drop money out of the sky. But when He says He'll provide, it may mean through using our talents that we have to raise funds. I have a graphic design background and we are working on an etsy shop that will be filled with scripture art for the home, stationery products, etc. Through Matt's industry, we may have opportunities for fundraisers, raffles, etc. So we felt that having a blog would be a great way for those who are purchasing items or participating in fundraisers to be able to learn about the cause that they are donating to. Also, the blog (and facebook page) are great ways to alert the community of fundraisers or events that are taking place.
And the last reason that this blog is separate from our family blog is that we don't want our personal family blog to be made available for the general public to see.
Thanks again for stopping by. Give us a few days to get all the kinks worked out, get all the info pages completed, etc. We hope that you'll bookmark this page, become a follower, etc and stay up to date with Brody's journey, how you can be praying for us and be a part of all the ways God is going to use this experience.
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