[cj_fairy]

Hi just found this site n it seems like a great place to come for support n advice! N its all under the one roof, (well web site) Well I'll just give you a little bit of history about my son's situation n we'll go from there.
(u'll ave to bear with me a little bit but i dont know that much terminology, my spelling is mad at times, i go off on random tangents n well its all a bit strange being able to tlk to ppl that understand, (as i'm used to ppl that dont!) [if that makes sense then ur better then i am LOL
Well my son was an ab untill just after his 1st birthday, where he was seriously ill n left him with a scar on his sc at a t9 level.(he has limited sensation n movement) At 1st he was just like a new born baby (but could hold his head up!) he wud commando style crawl across the house, but now after a couple of years of physio, blood sweat n tears (n a very bad backs at times on my part) he is able to stand against things, (pulling himself up with his arms n holding on)take small steps with a walking frame, (but gets tiered easily n its a bit of a struggle) n crawl sort of normally! (which is how he gets around at home) he is gaining more movement n sensation in his legs, we dont know if he has a normal bladder n bowl function (we are trying to find out n will keep you posted) he wears day n night ankle orthosis (splints) as he has foot drop. a spinal jacket (a few hrs each day as he his developing a curve in his spine as he slouches) he use's a rolator walking frame, (although as most 3yr olds would he prefers swinging n scareing me half to death at times) he has a standing frame that he goes in for a few hrs each day as his mucles at the front of his hip are very stiff which cause him to lay on his back with his legs held stiffly in the air sometimes at45 deg from the floor) but above all of this he is the happiest little boy in the world with a constent smile on his face, (cheeky most of the time with a few tantrums thrown in) who is my world! (n if u wont to find out more about him like ne mum i'll very happily go off on 1 about him cuz he is the best in the world!)

The thing that i ave come on here for is to meet a few good friends who understand a little bit better about what i'm going through, can help me with a few pointers with getting the best out of the equipment he is using, physio advise, life advise for him, to get me through the tough bits, n smile with me in the good bits to. i also wont to hear from people who are a little bit older n are the same as my son who can give me advise, n also the careres of these people ne tips u've picked up that works, cuz even at the age of 3 it does get a bit much carrying him, picking him up, (i'm only a little women myself) n also people with kids in fact ne1 who fancys tlaking to me...(honest i'm not mad)
Im really sorry if this offends in what i'm asking but i want my son to get the best out of life n need advise n friends to help me give it 2 him!
Thank you for reading this essay, love to hear from you, not really sure what to put but hope i get a reponce!!!

[Joed]

Well, you've come to the right place for support and information. Welcome!

Sounds like your son is a fighter.... That will take him a long way. It's everything, really.

As you can read on my sig below, I've had my disability from birth. I'd be happy to answer any questions you may have or share in discussions.

Quote

(although as most 3yr olds would he prefers swinging n scareing me half to death at times)

LOL...they do love to scare Mom, don't they? I think my son (7) lives for that.

Again, welcome!

[bigsmiles]

Just a big hello and welcome

[linda]

Hello there, I do know exactely how you feel! I am a mom to a 21 year old who is a c5 incomplete. My daughter was born with this injury having to deal with all you are talking about now! I would suggest putting his coat on him as much as possible to keep him from developing severe Scoleosis! I made the mistake with not puting my daughters on her as much as I should have, later required surgery on her spine to fix severe scoleosis.

Also weight bearing is a must! This not only keeps his muscles toned and strong it will keep his joints and bones strong preventing deformaties! My daughter was un able to weight bear often due to discomfort in her feet. Now her feet are deformed her bones in her toes over lap one another! Her legs are weak and the muscles in them are small and flasid!

Keep up on physical theripy and range of motion! This will also help maintain looseness in the joints preventing them from becoming stiff! Once the muscles and joints become to stiff it is very difficult to get them loose again. My daughter had several muscles releases because I couldnt keep ahead of the muscles tightning!

Most of all, remember you are your childs best advocate! no one will care for him as you will! Always ask questions even if the question seems dumb! And never never.... let any one in any field intimadate you! Your child is yours! Not any one elses you know what write for him.

[cj_fairy]

thank you for replying, i really appreciate it.
about sclorosis could you explain what could happen n how it affects the body???

JOED: it will be nice to tlk 2 some 1 who has "grown up with it" (soz if that seemes rude) so i can ave advise to give the best 2 my son, n yer i think all kids r little terrors its in there job discription as soon as they are born ..."SCARE MUM!" It'll be nice to tlk 2 u n get 2 know u (plus we ave terriors 2 tlk about! lol

LINDA thanks for the advise about keeping the coat on as much as possibal.. i ave n in a week i've seen a bit of an improvement already! so i will keep going with this, he stands for most of the day (well as much as i can get him on his feet n i've been really putting in the effort with his phsio movements, we've also just been told that his foot drop has got worse and his ankels r stiff n the muscles shrunk! cud u give ne advise that can help? but the problem is new "FUN" ways 2 streach as kevin doesnt want it done as its "BORING" for him!

BIGSMILES: big smiles back..

TO ANYONE: as in the little message above my sons foot drop has got worse n his mucsle in his ankels ave got really tight... his physio is talking about possibility of botox injections, has ne1 had it done or going to ave it done or heard of this?

to every1 that does reply dont get to go on the internet much but when i do i'll reply a.s.a.p n c wot every1 says

[bensinjury]

Just a warm welcome, and to say that your on the right site...the people an this site are very supportive and informative...Again Welcome!!!

[Tweety Bird]

Oh wow! You do have your hands full! I just wanted to say hi and I'm new heere too and it does seem like a super great place. I think you weill be well cared for. And they all seem very knowledgeable too. I have been a nurse for a really long time and worked for a neurologist when they first started botox. He did it for something other than footdrop but in the right hands it seems to work very well. As a nurse and a Mom I would definitely say go with your gut instead of what the docs say. They are not perfect and every doctor has different experiences that give them their knowledge. So if you don't feel it's right go to another doc and getr another opinion!