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[debs]

Hi everyone

Im new to this forum /wave.

I was born with spina bifida occulta and diastematomyelia, aswell as scoliosis, hyperlordosis and spondylolisthesis. Just wondered if anyone else has similar conditions/experiences?

I have been without much pain until now (i'm 29) so i am currently waiting on recent mri results and am due to get them 10th sept, and im very nervous :)

I dont really feel 'well versed' on my conditions and the likelyhood of how my condition is going to progress (which means lots of sleepless nights and worrying lol), sorry to go on but a problem shared etc etc as they say.

Once again hi and look forward to chats and stuff.

Debs
x

[cutie patooties mom]

Hi Debs!
I'm kind of new here too. I am the mother of a cute little girl who is 11 and has spina bifida L3/L4. I've not heard of all of those medical terms you have. They sure are quite a mouth full. Why do they make medical jargon so difficult to say? LOL! Anyway, welcome to the board. I'm so glad youre here.
Bronwyn

[debs]

awww thanks so much for the warm welcome :D
How does your little girl cope, aswell as yourself?
I know what you mean by the medical jargon too hehe.
I have sooooo many questions to ask, i just dont know where to start lol!
For example why do i have this condition when no one else in my family does?
Also should it have been detected at birth? I was born with a hairy patch but my mother was told it was just a birth mark!! I didnt get diagnosed till 11. I have never had surgery or anything, I realise to date i have been extremely lucky (which i am thankful for) but now i am scared stiff things are getting worse (a little selfish of me i guess) but I have no idea if i should even be contemplating the possibility of paralysis etc, or am i just being a drama queen (for once i hope i am being overly dramatic). So many stupid thoughts going round in my head, I feel like I'm going crazy sometimes lol!
xx

[Holly]

Hi and welcome to SBC!

[cutie patooties mom]

Hi Debs,
sorry it took so long to get back to you. School has started and its a whole different world. When finding out about the spina bifida, it is very overwhelming. Especially when you think of all the "what ifs" like I did. My little baby "Gabi" was only a few weeks old and I was worried about every possible scenario that could happen until she would turn 20. I then realized that I was only given that day and I wanted to make it the best day possible. I decided to deal with the what ifs when they happened. She's 11 now and most of what I worried about has never happened. I do have to worry about puberty now!!! UUGGHH!:eek:
Bronwyn

[angel]

What grade is gabi in now? My son is 11 and just started 6th grade. I am feelin a little old today:sign0020:

Angel

[cutie patooties mom]

Hello Angel! Gabi is in the 5th grade. She repeated the 4th after years of struggling and me telling the principals "No, I don't want to hold her back. I want her to be with her friends." Hind sight is 20/20. I now know she would have done much better if I would have held her back earlier. AND... She has had no problem in making new friends, which was my big concern. I want to tell myself "Duh!!!" :confused:
How does your son do in school? Does he like going? Gabi told me this morning that she hopes "Hurricaine Gustav" will blow away her school. I guess that means she doesn't like it too much!
Bronwyn

[angel]

My son does pretty well in school. He really likes it because his friends are there. He is an A-B student however that takes a lot of work on both our parts. I have to push him to make his grades. I wouldn't do it if i knew he wasn't able but he is able so it is expected of him. He has SBO you can't really see it on him. His friends know about it but much like when i was in school ( I have myleo and walk with crutches) these kids grew up with him so they just overlook all the medical stuff.
Why does gabi have a hard time making friends? Is she shy? has she had a hard time with people making fun of her?

Angel

[cutie patooties mom]

Hello Angel!
Gabi is a little shy. She has a really close group of friends that she's had since pre-school but now they've moved on to 6th grade. She is making new friends though.
Bronwyn

[angel]

That is wonderful. I hear of so many people that had a hard time in school but i am glad your daughter is making new friends.


Angel