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
