Sorry everyone its been a few days since I posted but it has been sooooo crazy. What's new right? The boys are all doing well and are soo excited to be getting requests for the bracelets. We have now sent out about 40 bracelets and have given out about 20. I have been asked several times what does the green bracelet mean? I of course say CMT(Charcot Marie Tooth) and Carter's Challenge. I will say this has been such a great idea, I love being able to spread the word just by a bracelet.
This week Carter has been busy with Drivers Ed! Thanks Pa! He received a 90 on his first test and then he passed his other test, they didn't give us a score, but he now gets his permit!!!!! Woooo Hoooo! He is excited but nervous and I don't blame him. I remember I was sooo nervous when my dad took me out. I had to learn on a stick. I told Carter how my dad took me to a parking lot and made me start and stop on this huge hill in the Business Park. It was sooo nerve wrecking but after many hours of practice I never had problems with a clutch on a hill in S.F. What is cool about his Drivers Ed class is they get to use simulators. Carter says it is so fun, I guess he gets to drive at 90 mph on the game....just not in real life please....
Carter's 2nd appointment with his Physical Therapist went well. She said she now knows his limits and what works for him and what doesn't. She said it will be a work in progress. Carter does stretches for his toes against a wall, he works with bands to help his hamstrings and calves and does lots of other things to help his Achilles heal and ankle. It was funny cause I couldn't see him at one point, I had Ayden so we were up in the waiting area, but I heard Alise say to him "Carter I can see you, you are cheating!" She then told her assistant to help him since he's a cheater! LOL. I guess when he does some of his stretches with the bands, his feet tend to go outward and he needs to keep them neutral. He also got his first taste of electrical stimulation, which is were they stick electrodes on your skin to contract certain muscles. This helps strengthen the muscles and brings blood to the those muscles to help them heal faster. I guess when he was getting this done she kept asking Carter "Can you feel it or are you numb?" Apparently, he said he was numb so she had to keep raising the level up! He said after raising it several times she was finally able to get the muscle to contract. Carter said it was really funny because she kept looking at him like are you o.k. and he would laugh and smile at her.
So she told us that he needs to do his exercises everyday no matter what, even if he is at a friends house. Which is exactly what happened yesterday and today. I guess he is keeping his word and following through with it.
Yesterday, Carter and Carson left our house and said they were going on a walk. Well that was at 7pm, I get a call at 9:45 from Carter, Tyler and Carson telling me "Ma! We are at Chicken Express! My phone is dead so I thought I should call you so you don't freak out." I said "Too late." At least they called....then I get a call at 11:45 saying we are at Tylers house and I am spending the night. Come to find out that they had walked from Chicken Express back to Tylers house and around Castle Park, it is a pretty good distance from our house. Carter said his knees hurt and his feet hurt but he kept on going. It took about 45 minutes for the pain to go away but at least it did. I told him today, no walking or running!
As for Zachy, he has had a great week. He has been staying cool in the pool! I am soooo glad that he loves swimming since it is one of the best things for his CMT. We also went to Scottish Rite on Tuesday to get the results of his learning tests. We arrived at 9:25 and didn't get out of there until after 2! It was a great meeting but of course more work for me. I met with the head Dr. and another Dr. for 3 hours and went over all the results. Bottom line, Zach has ADHD. She said he is "consistantly, inconsistant" with his work. He is very smart but his ADHD is getting in the way. She told me I will have to work a lot with Zach on getting him into different routines and I will need to get the school to make some adjustments to his IEP plan. She really wants him to be able to use a keyboard in school since his handwriting is so bad due to the ADHD and his CMT. I also have to get 3 different books on raising a child with ADHD and one book for Zach on what it is like to have ADHD. She told me to read up on it and get him in to see his Dr. so we can get him on a medication that will work best for him. Long story short, I need to make chore charts, house rules, daily charts...charts, charts and more charts. All so he can be visually reminded. She said I might have to repeat myself a couple of times. Oh and I have to have lots of patience too. Um, Houston we might have a problem....I don't have a lot of patience. I guess I will have to try harder...
On Wednesday Zach went to the Urologist and that was a interesting visit. It was at Children's Hospital in Plano and we were the first patient of the day! Love it! We did not have to wait and the visit was all about him. She first started with an ultrasound of his bladder full, then they had Zach empty his bladder and did another one. Good news is his bladder did empty almost completely. Then we went on to some not so fun stuff. A series of questions that no one likes to talk about....yep you guessed it, poop. She pulled out the handy dandy "stool chart" which is basically like a police lineup where you pick the bad guy. Anyway, after discussing this they took another ultrasound to see if his bladder was filling up like it should and if there was anything else going on. His bladder wall looks great and so does his bladder, the only thing is his colon is pushing on his bladder and this could be the issue. What do we do about it? We make sure to go to the restroom every 3 hours, drink only 2 cups of milk a day, lots of water, lots of fiber and more. I found out that Zach has been told he cannot use the restroom during the day at school because they are in the middle of a lesson plan or something. The teachers ask him "Is it a dire emergency?" The doctor flipped out and said "Yes, for you it is a dire emergency." She wrote a letter to the school telling them if he needs to use the restroom they must let him every 2 hours for medical purposes. I check back in with her in two weeks to see if there is any improvement with him and then take it from there.
Overall, pretty good week, just super busy. I am a little overwhelmed at this point now that I have to research ADHD too. But we do what we have to do to take care of our kids. I have been super busy designing the logo for Carters Challenge and think I am done. We will be trying to find someone to help us with it and load it onto the web. If you know anyone that could do it for free please let me know. We are trying to get all this done asap since big things are going to be coming in September! There will be more on this next time. Be prepared to help with CMT awareness. Each and everyone of you will be asked to help.
Until Next Time...........................Charcot Marie Tooth Disease-Funny Name, Serious Disease!
Friday, August 5, 2011
Monday, August 1, 2011
Eye opening day.......
I have decided to continue with the green writing.....
Today was a crazy day. We had a lot of appointments and mom didn't do such a great job with scheduling. I guess I will have to work on that a bit. Carter went in for his Orthotics this morning. I thought it was in Grapevine but when we showed up she looked at me like who the heck are you? Come to find out our appointment was in Hurst! Ugh! We now have future appointments scheduled for Grapevine after that fiasco. Plus, I am hoping we don't have to see her again because she told me that I should have done something sooner with Carter. I should have realized that he had something wrong and did something about it. I just had to keep saying to myself STAY POSITIVE MICHELLE! Aside from that it was a great appointment because she gave a lot of good tips and information on what to expect. She said with Carter we will need to make sure we get 1/2 size bigger for the orthotics to fit in, so I guess we will go shoe shopping....She also said to get loose fitting socks as well. She said that they will slowly adjust him since he has been walking on his toes for so long they don't want to stretch him out to fast or it could do more damage. She said it could be like a rubber band effect, you stretch it out and then it just bounces back to where it was before. So he needs to make sure that he wears his orthotics and does his physical therapy. She suggested using a tennis ball to roll his foot on while he is on the computer or watching t.v. I guess this will help with his arch. The good news is she really wants to try and postpone surgery for Carter as far out as possible and she thinks that the orthotics can do it.
Zach had physical therapy today for the first time and that was awesome. The girl that is his therapist used to volunteer at Scottish Rite! She worked with kids that had CMT so she knows what to look for and what to do. She was so patient and kind with Zach. She told him she will push him but not to the point of exhaustion. If he gets tired, CMT causes fatigue, then he needs to tell her. Today was more of the evaluation and next time will be when he gets to do "the fun stuff" she said. She is really going to focus on his balance, strength and stretching. We are supposed to have both of them in physical therapy 2 times a week! Which is just crazy to me since lovely Aetna makes us pay $50.00 every time we go so I would be paying $200.00 a week just for physical therapy! We will see she said we could probably try and get away with one session a week.
Overall, I would say it was definitely an eye opening day as far as how much time this is truly going to consume on my part. I now know I will definitely not be going to work anytime soon. My Aunt Marianne told me the other week that this is my journey and I believe she is right. Especially after the last couple of weeks and talking to some people that have children with CMT. I think I am supposed to help spread awareness about CMT and help others through their battles with this disease. Only time will tell.
Until Next Time.............Tell someone you know about the signs of Charcot Marie Tooth you never know you may be helping someone you care about.
"But when I am afraid, I will put my trust in You." Psalm 56:3
Jesus replied, “You don’t understand now what I am doing, but someday you will.” John 13:7
Today was a crazy day. We had a lot of appointments and mom didn't do such a great job with scheduling. I guess I will have to work on that a bit. Carter went in for his Orthotics this morning. I thought it was in Grapevine but when we showed up she looked at me like who the heck are you? Come to find out our appointment was in Hurst! Ugh! We now have future appointments scheduled for Grapevine after that fiasco. Plus, I am hoping we don't have to see her again because she told me that I should have done something sooner with Carter. I should have realized that he had something wrong and did something about it. I just had to keep saying to myself STAY POSITIVE MICHELLE! Aside from that it was a great appointment because she gave a lot of good tips and information on what to expect. She said with Carter we will need to make sure we get 1/2 size bigger for the orthotics to fit in, so I guess we will go shoe shopping....She also said to get loose fitting socks as well. She said that they will slowly adjust him since he has been walking on his toes for so long they don't want to stretch him out to fast or it could do more damage. She said it could be like a rubber band effect, you stretch it out and then it just bounces back to where it was before. So he needs to make sure that he wears his orthotics and does his physical therapy. She suggested using a tennis ball to roll his foot on while he is on the computer or watching t.v. I guess this will help with his arch. The good news is she really wants to try and postpone surgery for Carter as far out as possible and she thinks that the orthotics can do it.
Zach had physical therapy today for the first time and that was awesome. The girl that is his therapist used to volunteer at Scottish Rite! She worked with kids that had CMT so she knows what to look for and what to do. She was so patient and kind with Zach. She told him she will push him but not to the point of exhaustion. If he gets tired, CMT causes fatigue, then he needs to tell her. Today was more of the evaluation and next time will be when he gets to do "the fun stuff" she said. She is really going to focus on his balance, strength and stretching. We are supposed to have both of them in physical therapy 2 times a week! Which is just crazy to me since lovely Aetna makes us pay $50.00 every time we go so I would be paying $200.00 a week just for physical therapy! We will see she said we could probably try and get away with one session a week.
Overall, I would say it was definitely an eye opening day as far as how much time this is truly going to consume on my part. I now know I will definitely not be going to work anytime soon. My Aunt Marianne told me the other week that this is my journey and I believe she is right. Especially after the last couple of weeks and talking to some people that have children with CMT. I think I am supposed to help spread awareness about CMT and help others through their battles with this disease. Only time will tell.
Until Next Time.............Tell someone you know about the signs of Charcot Marie Tooth you never know you may be helping someone you care about.
"Bu
Jesus replied, “You don’t understand now what I am doing, but someday you will.” John 13:7
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