Rewinding for clarification

Just a bit of info since, oh what was it, July when I started my blog  absence~~

I think I have talked about it a bit to some people that know me IRL(in real life) but I have really weird feet. I have REALLY HIGH arches. So when my feet are wet and I step on the dry cement all you see is my toes, ball of my foot and my heal. Its like there is no connection between the two. I have had many sprains. It is just how it is. You know?! Its just how they are. I have never had very good balance so was always considered clumsy and was NEVER good at any and all physical activity.

Well about 4 1/2- 5 yrs ago I began to have numbness on my toes. I learned this was a bad thing because one day when I was shaving I had my foot up on the side of the tub and couldn’t feel my foot slipping so I fell in the shower. Not good. I was fine but it could have been bad. As time went on it got worse and worse until I realized that the numbness went up my leg to just under my knees. My toes also started to kind of crinkled up. Makes it hard to wear shoes, yet even harder to walk without shoes. Yes this is in both feet and legs.

I was sent to a neurologist in Eugene, about 2 hours away as this particular Dr. is a part of the MDA (Muscular Dystrophy Association) Clinic there. I had been told that there was a possibility I have CMT(Charcot-Marie-Tooth Disease). I had to come back and have a Nerve Conduction Test. The results were what he had expected that I do have CMT Type 1.

Here is an explanation of CMT taken from CMTA:

An Overview of Charcot-Marie-Tooth Disorders

Charcot-Marie-Tooth, or CMT, is the most commonly inherited neurological disorder and is found world-wide in all races and ethnic groups. Discovered in 1886 by three physicians, Jean-Martin-Charcot, Pierre Marie, and Howard Henry Tooth, CMT affects an estimated 2.6 million people.

CMT patients slowly lose normal use of their feet/legs and hands/arms as nerves to the extremities degenerate and the muscles in the extremities become weakened because of the loss of stimulation by the affected nerves. Many patients also have some loss of sensory nerve function.

CMT is one of the 40 diseases covered by the MDA, but unlike muscular dystrophy, in which the defect is in the muscles, CMT is a disorder in which the defect is in the nerves that control the muscles.

CMT usually isn’t life-threatening and almost never affects brain function. It is not contagious, but it is hereditary and can be passed down from one generation to the next. CMT…

• …is also known as peroneal muscular atrophy (PMA) and hereditary motor sensory neuropathy (HMSN).
• …is slowly progressive, causing deterioration of peripheral nerves which control sensory information and muscle function of the foot/lower leg and hand/forearm.
• …causes degeneration of peroneal muscles (located on the front of the leg below the knees).
• …causes foot-drop walking gait, foot bone abnormalities, high arches and hammertoes, problems with balance, problems with hand function, occasional lower leg and forearm muscle cramping, loss of some normal reflexes, scoliosis (curvature of the spine) and sometimes, breathing difficulties.
• …does not affect life expectancy, but can, in rare instances, cause severe disability.
• …has no cure, although physical therapy, occupational therapy and moderate physical activity are beneficial.
• …is sometimes surgically treated.
• …is usually inherited in an autosomal dominant pattern, which means if one parent has CMT there is a 50/50 chance of each child inheriting the disorder.
• …may become worse if certain neurotoxic drugs are taken.
• …can vary greatly in severity, even within the same family.
• …can now be diagnosed by a blood test (CMT types: 1A, 1B, 1C, 1D, 1E, 1F, 1X, 2A, 2E, 2I, 2J, 2K, 4A, 4E, 4F, HNPP, CHN, and DSN).

So off to the MDA Clinic to see what my “team” thinks would be the next step, so to speak. They also check my girlies to see if they had inherited it although they do not have the feet.  Dr G said NO they do NOT. Wheeeewwww.

I saw a total 5 doctors at the clinic. I must say that I felt like the “IT” girl. You know “the important one”. Maybe because I often don’t feel that way :} Anyway they had me walk down the long hallway and back. By the time I got to the end they were all murmuring. I turned around to walk towards them and they were all talking to each other and said “would you please walk again”. Sure why not.  When I returned they had me sit and said “it is really amazing how you have adapted to “be able” to walk at all”.  Really isn’t it just …how does the song go…Put one foot in front of the other and soon you’ll be walking out the door….

I mean balance has always been an issue and running…well it is surely OUT OF THE QUESTION. That doesn’t happen unless there is fire or children involved, if ya know what I mean. They went on to explain that when I stand I widen my stance, as to make the base wider, then I begin walking. This  happens ONLY after I have steadied myself and “feel” balanced. Mind you all of this happens in a matter of seconds. This is in NO way conscious thinking.

So they sent me to Dr J at the Slocum Center. A very impressive building/ organization. I mean they have a “greeter” and pagers to let you know they are ready for you. Oh and they are Fast, Fast, Fast!!! My appt was at 1:30 they wanted me there 10-15 min early for paperwork.

I registered

I went to the bathroom—it was a bit of a drive and I did have a coffee 😉

I was paged–during above event

I had a 3 view x-ray of my right foot

I talked with the doctor

We discussed what surgeries would be needed for both feet and the typical surgical results

                   I was back in the car at 1:45

Now that was the fastest “specialist” appt I have ever been to!!!  It took longer to get my paperwork done for financial assistance from their facility. Which by the way they sent me a letter. I was expecting a denial 😦   But what I received was an award letter stating that they would “write off 100% of the account through 08/31/2009” That means I can get both of my feet done and only, I say only HA< HA, worry about the hospital part.

IS THAT A BLESSING OR WHAT!!!!!!!!!!!!!!!!! I totally cried. I was so surprised and relieved I couldn’t help it. 

My surgery date is 03/12/2009. I have to stay the night one night because I live so far from the dr office, but my sister is coming from California to take me so my mom can stay with the girlies.

I am so excited to finally get some relief from the pain and discomfort from the past month or so. It probably does sound sick and twisted but I truly am looking forward to it 🙂

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New Glasses –o-o–

Miss T isn’t very happy with her new glasses but she allowed one quick picture. This is her “Say Cheese” smile lol!

(notice the arms go all the way around her ears and it looks like she has earrings on 🙂

So we went to the appt. knowing that the dr was probably going suggest it was time to start the glasses experience. I only have the hearing aide experience to go on and let me tell you it wasn’t a pleasant one.

Anyway we choose the only ones that we thought were half way cute and that the ins. would pay for. We are going to use these as “practice” then save up and get ones we (Myself and Miss G) think are ULTRA CUTE!!! and will actually fit 😉

**I have found a company that makes glasses specifically for kiddos with Down syndrome. Look at the before and after photos. They are amazing!**

So the day came for us to go pick the glasses up. We all went Miss T, Miss G, Nana and Me. Miss T was sitting in the chair and ” the lady” comes over and immediately, without talking to T first. Well of course T was not impressed and was then stressed from all of the hub bub. “The lady” continued and Miss T continued in her way too. As Miss T was trying to pull away from “the lady” she hit her face on the table and ….well it went down hill from there.

I picked her up and held on my lap, trying to get her to calm down and stop crying. I just asked “the lady”  what was I to look for in the way of fitting properly and that I would try at home because this wasn’t going to get any better at this visit. She agreed and we left….Well not without Miss T waving to EVERYONE in the office and signing home and saying bye. It was quite cute.

So the next day D (husband that has moved out…. for another post  😉  )  came over and we told him of the story and that we hadn’t tried again. I just wanted her to let go of that memory of the day at the office. He said well let me try. I said “ok fine”  He went in and sat with her she was watching her beloved Backyardigans and asked her if she would show “daddy” her glasses.. She DID!!!   ….OOOoo for a split second I was a bit irritated I MUST ADMIT ;\ But I got over it as she came out looking SOSOOOOOO ADORABLE!

She has since had several spans of time with leaving them on. She even left them on the whold time we were at Toddler Group. It is cute cause she can say “gassses” and will point to her cheeks when she wants them. If we don’t follow her around when she has them on she takes them off and likes to see just how far they arms can bend….the wrong way.

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