Updates

Two and a half months -- NOT cool! And I have thought about posting here and there but its a whole to do to sit down and post and it overwhelms me and when I get overwhelmed I distract myself and run instead of just sitting down and DOING what needs to get done. Ask at my work, I wait to hand reports in until I get a personal email or question about when its going to be in. Last week I actually made my husband unplug my Internet so I could sit and work work work.

Anyway, i'm here now (Thanks Nic!) and not getting up until I FINISH.

So some updates.

Yak's PT wants me to get him orthotics :(. I'm not suprirsed but I'm still sad. I don't know why. I kind of feel that both my kids probably have it because they are both somewhat clumsy but something like this is more glaring. DH actually mentioned that he was pigeoned toed as a kid and his whole family has flat feet so my kids are screwed no matter what :). But on the flipside, it could be that they just have bad feet like his side, not CMT per se. Anyway, whatever it is, his feet do turn slightly and orthotics will help hopefully. They wont be AFOs just orthotics I need to be a big girl and do whats best despite the fact I want to do nothing and just hope for the best. Only problem is i'm in the process of switching insurance for the kids, so i think I should just wait till March when they have new insurance. In the meanwhile, i'll see what is out there.....maybe i'll even be brave enough to get orthotics for myself. This PT doesn't feel that Shain needs orthotics so i'm happy about that. She is tired often and I'm going to ask my ped what he thinks, if he thinks its related to having poor muscle tone or whatnot. I think all problems stem from CMT. lol.

On me, I am tired a lot. I often think of telling my boss or some coworrkers that I need a job with more sitting. Its hard to be a preschool teacher and do movement classes with them and stand outside and deal with them when they make trouble and stuff. And I do feel like I slack a lot because I am often tired and not physically energetic and strong. And I feel bad that I slack. I kinda wonder if an opportunity for sitting came up, would I grab it. part of me would in two seconds. But I wonder if i'd just slack off and waste time on the Internet. Now at least I am alive and dealing with people and stuff. Who knows, we'll take it as it comes, one day at a time.

I am extremely grateful to God and Mother Nature for giving us the most mild winter to date. It has been spring-like here and makes getting out and about much much easier. It snowed once on a Saturday and was gone by Monday, I'll totally sign up for that being the only snow this season. People don't realize how awful snow, sleet and ice is for us - I mean its dangerous and scary for everyone but people with bad feet have it way worse! My hubby actually commented that I haven't fallen in a while and that is true and good. Let it continue :).

A close family member (with CMT) is planning on getting pregnant. The couple has another, much more serious genetic issue to deal with so they are doing PGD (http://en.wikipedia.org/wiki/Preimplantation_genetic_diagnosis) to rule out their child having that disease. Once they are going through the time, process and money of doing PGD it only makes sense for them to take out CMT which is also something that is able to be eliminated through PGD. I have to say, I'm a little jealous. I mean I'm super-greatful that we were able to conceive naturally and fairly easily and that we avoided the difficulty of doing IVF. I know its not all fun and games and its not something I'd want to do if I had the choice.

But there kids are definitely not going to have CMT. And that is pre-ttty neat. I hope by the time my kids are ready to have children, if they do have CMT, this type of help will be even easier and more attainable. Or CMT will have been cured :). Why not dream for the stars?

Yak and Shain

So Yak's PT wants him to wear shoes all the time with insoles. :(. I just bought cute sandals at a real shoe place. But his feet are turning. Joy oh joy. He was my early mover and walker and I was hopeful his feet would be spared but alas it looks like its not the case. I did notice his feet are actually turning in, not out like mine do. But anyway I'm trying to follow her isntructions. i'm a very free-spirited barefoot run around the place person so I dont know if I can have him wearing them all day until he goes to bed but I'm trying to make sure they are on most of the time. I hope it helps, she thinks it can. I'm so not at the place of runnign to the MDA to see if they have CMT and need orthotics but I hope that my kids won't miss out becasue of that. I will follow my PT's recommendations seriously and I'm guessing both kids will be getting PT (and possibly OT) for the next buncha years. The good news is the PT is very happy with how Shain's progress is and she's been doing great with stairs and running. She's such a little free spirit like me and her status quo way of moving around is merrily skipping. I just pray she doesnt fall when shes doing that on the pavement and much more often than not she doesn't. But it does make both our spirits temporarily plummet when she goes kaboom when all she wanted was to be a happy little girl.

BTW, Yak also started with speech and special instruction because he's almost 2 1/2 and doesnt talk that much. He's shown a lot of improvement since he started and also since he started a little day camp with 6 other little 2 year olds. He's so much happier than when he just went to a babysitter - here he swims and colors and he really enjoys it! Plus my friend runs it so that is great. I'm not super concerned because Shain was also delayed and now she doesnt stop blabbing and has a super memory. My kids are adorable btw. I can't stop kissing them. Shain's best friend came for the whole weekend (he's a boy) and they played beautifully together. They built a whole city with our Legos and sang together in a band. Poor Yak was a little left out but he didnt seem to mind.

Have a great week!

The past few Friday nights have worked out really well. DH has been pretty helpful and I've been more upbeat and smiley when sitting at the table.

Clumsiness and kids

Poor baby. He falls a lot. Has three scrapes on his knees and legs. Sound familiar? I really thought he would be my CMT-less kid who started walking right on time and wouldn't fall. I'm so sad that hes not. Who knows, maybe hes ok. but I look at him and feel guilty. S is also clumsier than most kids her age, but shes one year older than more steady. Any time i see her galloping on the cement, i cringe and pray that she doesnt fall. ANd when she crouches down and keeps the stance (something I cannot do), i secretly cheer.

Its ok. Y cries and than picks himself up. He doesnt seem to mind his scrapes. Hes really a baby in a lot of ways. He barely talks and always wants to be held. And hes over 2. Truthfully, I dont mind him being a baby. The two kids are so close in age that i dont mind having a kid and a baby. But i do want him to run around more and not be afraid of falling.

I used to be clumsy. i never understood why, in dance class, i couldn't get up without pushing the floor. I definitely tripped more than my friends but I didnt even realize it was connected to this weird disease that my uncle and brother have and we sort of have. Its so weird how little my dad was affected. i wish he was alive so i could talk to him and see his feet (and for other reasons :) ). I also had my share of dislocated knees (my whole family had them). But i didnt really feel like CMT affected me until I started to date and realized what a big deal it was.

I knew I might be passing on my CMT to kids. I'm ok with it. I mean obviously i kind of have to be. There is PGD but its not for us. SOmetimes I wonder how my DH is so OK with the possibility of passing CMT down. I love him for it. Plenty of guys (and girls) would not want it. But he kinda sees the big picture of whats important and that i am who I am despite (maybe because) of it, so no biggie. I am kinda torn of feeling like CMT is not really a big deal, just some minor inconvenience that thankfully doesnt affect the brain or lifespan and you can have a pretty normal life with it, good job, family, friends, etc. Than sometimes i'm like 'this is awful. it cripples you. youre so afflicted. Its the worst thing EVAR!'

I have a kid in my class thats so athletic and graceful. SOmetimes i dream of having a kid like that. who is everything i, and all my family members, aren't. My cousins are pretty athletic even though their fathers father had it (but not their father). Its not that important. I just would love for them to not be affected, or if affected, have it so its not a huge part of their lives. i hope by the time my kids are grown, there is a cure or a very easy way to make sure its not passed on.