Scottish Rite Visit and Life As I Know It Right Now

I know it has been awhile since I have blogged.  This is mostly due to me being sick with pneumonia and a bad sinus infection. I needed to focus on getting better, so I can be there for my kids.  Which leads me to the other reason I have not blogged.  I realized that I have let the website, fundraising, doctors appointments and other things just get in the way of me being a mom.  I let the research and the disease consume me. What I needed to do was balance it all out, which I have learned is really hard, especially for someone who has a bit of a tendency to over work.  Which over work leads to me becoming ill and so on....So for now I will blog only once or twice a week. This way I am still keeping everyone informed of anything new going on with us or new with CMT.  As far as research, I will still be doing a lot of it just only at night.  Fundraising and raising awareness will still be top priority and I will focus on that during the day. 
The Scottish Rite appointment went well but not as I had expected it to go.  We were there all day! I actually was late in picking up Ayden from Preschool.  His school closes at 6:30 p.m. and I didn't pick him up until 7:00 p.m.!  Thank goodness for Kendall!  She is an amazing young woman who has been a guardian angel for us.  Actually, the whole school has been a guardian angel. 

When we arrived at Scottish Rite we were immediately taken over to the CMT Clinic and introduced to Dr. Iannaccone's medical assistant.  She was with us pretty much all day.  We spent the first couple of hours filling out paperwork, answering questions about the boys health, symptoms, school and so forth.  She did a physical evaluation on them both.  After she was done we saw a nutritionist, who spoke to us about the importance of healthy eating, vitamins and so on.  Next was a physical therapist, who evaluated the boys and asked more questions.  She then came up with a therapy routine for each boy.  Then Dr. Iannaccone came in with her whole team.  They asked even more questions, watched the boys walk, examined them and talked a lot amongst themselves.  The boys were very nervous since they were kinda in the spotlight.  There were about 7 adults in the room with us, all looking at them, asking them to do things and asking us questions.  After they left she sent in the occupational therapist to examine the boys and ask more questions!  Finally, we were done with all that.

Dr. Iannaccone and her team told us they will be doing a DNA test on Carter to determine what kind of CMT he has!  Thank God!  This will allow us to see if he will pass it on and if so to who.  It will also allow us to look at clinical trials.  She also wants them both to start physical therapy and do it once a day, everyday!  She also wants to put Carter into braces at night.  He will be wearing braces on both legs all night for a long time.  She does not believe in surgery so, we will be trying the bracing.  So we were sent down to Orthotics to do the casting on both legs for the braces. 

I am a worried about the emotional effect it will have on Carter having to wear night bracing and the physical part as well.  I know being a 16 year old is not easy in of it self but having to wear braces on both legs is just going to make it that much harder.  I am not a huge fan of the bracing since I have been told it won't work on him.  Carter and I agreed to try it but I still believe surgery is the only option for him.  Several Doctors have said that the only way to help him walk, without walking on his toes, is through surgery.  I will be asking for a 3rd opinion since I have one Dr. saying surgery and the other now saying bracing.  Only time will tell.  We go back on October 26th to pick up the braces and learn about them. 

So as for now I have not learned anything new from Scottish Rite.  We will find out the results of DNA in 4-6 weeks and will go back on 26th for braces.  I am disappointed but I am also very grateful for having the opportunity to go there.  Hopefully we will learn more at our next appointment once they know what type. 

Until Next Time.................."Stay Strong, Believe"~Carter Hayes

Lets Get Ready To Rumble!!! Cotton Patch Challenge!

Well we made it to Greenville, Texas in one piece! At least without to much whining, are we there yet? We checked into our hotel, went to pick up race packet and then ate dinner. Now its time for bed.

Carter is sooo excited yet a little nervous. We told him to relax and have fun which I know is easier said then done. We told him its not about where you finish its about having fun and raising awareness for CMT. He siad he knows but just wants to finish race strong. I know without a doubt he will give 100%.

He ate a big dinner to insure he will have plenty of food for ride and went to bed early since we have to be there at 6:55 am so we are up at 5:30am, yep that's right 5:30! What the heck was I thinking? Of course it's like 10:45pm n I am still blogging and posting updates on facebbok n twitter.....need sleep!

It started to drizzle tonight we are hoping for sunshine in morning. especially since this is his first race and he has never ridden in rain before. We haven't had any here in Texas! News says at race timeitwill be 72 so we are hoping they are correct.

Carter's race will begin at 7:55am and is 31 miles long. Sean, will be driving to checkpoints to check on him and me,my mom and his brother's,Zach n Ayden will be there at beginning of race and then head over to finish. We will be taking lots of pics and posting them.

I actually think we are more nervous then Carter! Sean is busy getting all race gear ready and checking bike. He has double,triple checked all gear and has water and sport bottles ready. I on the other hand don't know anything about cycling so I am in charge of other kids and raising awareness and cheering!

Unfortunately, I am sicker than a dog and don't have much of a voice, so my normal loud mouth will not be up to par tomorrow. None the less, I will be cheering with what little voice I have left. Cause that is what mom's do!

Wish us luck, well Carter luck! Please send us tweets @carterschalleng on twitter. I will be tweeting before, during and after race. Yes, our twitter is carterschalleng without the e because the e made it too long....

Until Next Time......GO CARTER!

"Stay Strong, Believe!"Carter Hayes

Charcot Marie Tooth Awareness Month Is Here!

Tomorrow is September 1st and the start of CHARCOT MARIE TOOTH AWARENESS MONTH!!!!!
I know a lot of us have been so busy getting ready to raise awareness. I wanted to say some shout outs to some very special people who I think do an outstanding job raising awareness for Charcot Marie Tooth Disease. 

• Kaitlyn and Lori Mattheis with Mission Happy Feet.  This mother, daughter duo do such a great job getting the word out by making bracelets with feet on them, blogging, holding events, making videos and more! Way to go guys!
• Elizabeth Ouellette with Charcot Marie Tooth Association. I don't even know where to begin...She does it all! Videos, school events, public speaking, fundraising, and the list goes on.  She volunteers for the CMTA and gives it everything she's got! Kudos Elizabeth!
• Melinda Lang with Living Well With CMT.  Melinda has done some amazing things for CMT. Not only does she blog about it and hold fundraisers but she also received a CMT Awareness Month  proclamation from the State Of New York and the City Of Albany!!!! Way to raise Awareness!
• Carol Liu with National CMT Resource Center. Wow this is all I can say about Carol.  She like Elizabeth seems to do it all.  Blog, tweet, editor in cheif for HNF, attorney, mom, oh and yeah wrote Arlene On the Scene.  Like I said WOW! 

I could go on and on about people from all over raising awareness and funds for CMT.  People posting on Facebook, tweeting, blogging and fundraising.  We all are stepping up to plate to help everyone who is affected by Charcot Marie Tooth.  I APPLAUD EACH AND EVERY ONE OF YOU! 

I have made some great friendships so far in this journey, friends from all over the world!  The CMT community is AMAZING!  To my new friends Carly Andrews, Melissa Wilson Arakaki, Melissa Lykins you all have been a great support and have done wonderful things for CMT.  Keep up the outstanding work!

Until Next Time.............."STAY STRONG, BELIEVE"

Awww Yeah! Unveiling of Carter's Challenge Race Jersey & Shorts!

I cannot tell you how excited we all are about the unveiling of Carter's Challenge Race Jersey & Shorts!  Once again thank you so much Emily at Hincapie Sports for taking Carter's drawings and making them come to life! O.K. here they are!

Tell us what you think?  Hope everyone loves it as much as we do.  Now we just have to pray we get them in time for the race!  We are cutting it super short and just not sure if we will make it.  Please pray we get them! 

Until Next Time.................".Raising Awareness One Step At A Time" Carter's Challenge

CMT Awareness Month

Boy, how time flies.  I cannot believe it is almost September!  I suddenly feel like I am really far behind with everything.  There are a few things I want to ask everyone to do for us.

1. If you have a facebook account please change your Avatar to a CMT Awareness Avatar. You can find these by "liking" https://www.facebook.com/CMTAssociation please do so starting September 1st. 

2. Again, if you have facebook please put a post about CMT on your wall.  Remember, the end of Charcot-Marie-Tooth disease begins with you! Activate. Educate. Donate.

3. Twitter about CMT. 

4. Put an email together about CMT and how it affects you or a loved one.  Send it to all your contacts, the more people that are aware of CMT the better chance for a cure.

That should be a good start for everyone! 

What are we doing?

• Cotton Patch Challenge- September 17th Greenville, Tx come out and support Carter's Challenge!
• Posting CMT information at local doctor offices and businesses.
• Selling bracelets and all proceeds go to STAR INTIATIVE! Go Green!
• Carter's Birthday Wish- All month- more to come in next couple of days!

Last but not least tell 3 people about CMT by Saturday. 

Until Next Time.........SPREAD AWARENESS~THE TIME IS NOW!

"Stay Strong,Believe" Carter Hayes