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[tessa3598]

Hi everyone! I am so happy to find a site like this. I have been searching for something like this for a long time. It looks like a great place to find some answers to some questions and maybe even help some people with theirs. My name is Sarah and I live in Iowa with my 12 year old daughter Tessa. She has L5 S1 level SB and has 2 vp shunts placed, and many other little things that go along with SB. I'm sure you all, or at least some of you know what I'm speaking of. Above all though, she is a beautiful, loving child who has changed my life for the better and loves to keep me on my toes :) All you with girls at this age can relate to this. :) I can't wait to get to know ALL of you better so we can share things about our wonderful children and find out about all the things I can look forward to as she gets older, even though I don't want her to. :)

Sarah

[LillyPie]

Hello Sarah! I am glad you found this site too! I know I was happy to first find it too. Beware....You will become addicted to it and get to the point that you log in everyday, no matter what. LOL I know I do!

My daughter Lilly has SB functions at L-4ish and she is 5 years old. I do have an 11 (almost 12 year old) too. My other two kids are 7 and 9. All girls!
Lucky me!! How have things been going for you and your daughter the last 12 years?

[tessa3598]

So you know what I mean by the girl thing for sure huh! I wanna say, you have guts :) LOL No matter what the issue, they are girls first :)
Thanks for the warning. I'm seeing it already :)
She had a lot of issues the first 3 years but phased out of that, thank goodness. The only things recently were breathing issues from her Chairi, where she stops breathing even from laughing. She did have a decompression when she was 3 but things kept up and they had and still have no answers. She did end up being diagnosed with seizures about 3 years ago and the meds kind of help the "spells" as we call them but not all the way. Who knows. Its crazy at times, but she has a nurse with her at all times when I'm not with her, so that helps ease my mind. Even at school, so thats even better. School is another issue. Her delays are REALLY showing up this year. Kind of fighting with all that but its coming along. Umm lets see, her last surgery was when she was 10 which ended up being the best thing we've ever done as far as her independence. She is cathed and we did that the normal way up until she was a little over 10. She had an apendvesacodomy (ok I can't spell to save my life--sorry:) but it sounds like that kinda :) It's a procedure that made it so she can cath herself through her belly button. Maybe you've heard of it, or your daughter maybe has it?? If she doesn't I TOTALLY RECOMMEND IT. Tess started developing like 6 months after it was done, so it was PERFECT timing. Plus its SOOOOOOO much easier than trying to find a private place for her to lay down for someone to cath her. There would have been NO way she could have done it herself without this surgery. Her dexterity isnt there. (Told ya I cant spell) Other than that, she had been wonderful. We are very lucky. Wow--I can go on and on I guess :) Sorry about that. :)
How about your daughter? Whats her story? How she doing?

[LillyPie]

where do I start... she has had 2 shunt surgeries, the first and one revision shortly after the first was placed, I dont think it ever really worked. This last year for some reason the flow was off and was draining to much CSF and caused her ventricles to be to small, but it was adjusted and everything has been good since. Right before her 1st bday she had her right hip fixed because it was subluxed, on the same surgery her tendants were transferred due to severe calcaneovalgus. She has AFOs, she has a wheelchair that is used only for distant type stuff, right now she would rather put holes in her feet than use it but that is something I am working on with her. She is cathed about 3X daily, sometimes more. Her bowels are ok, she goes daily. As of her last Uro appt, no reflux. Little kidney scarring and a thick bladder wall. We have been UTI free for sometime now, without any type of profalactic. YAY! She was on furadantin for about 4 years. The first year was the hardest, for me. In and out of the hospital for UTI's, thats where the kidney scarring has come from, "that first year" I'm starting to allow her to watch me cath her with a mirror so that hopefuly she can be cathing herself by the end of her kindergarten year. She is in pre-k this year and everything is going well. I have put in for a transfer to a school in my city that offers inclusion classes. Her teacher says that emotionally and mentally she is ready for Kinder but says she needs help academically. I have an appt in May to go over her IEP for next year. I have never heard of anyone cathing through their stomache. That is probably a whole lot easier for her. How does your daughter do with her peers?

[Dodger67]

Hello Sarah and Tessa
Welcome! :happy065:

I'm Roger, 42yo, South African, uncle of 5 father of none. IT geek and wannabe high school teacher.
Myelo at L3, no Hydrocephalus, no Chiari, fulltime wheelchair user.
I also have the navel stoma - here we usually call it the Mitrofanoff after the Russian urologist who invented it. He should get a medal for liberating so many of us.

Good luck dealing with the teen issues! :scream:

[smoop]

Hi Sarah,

My name is Renee... mother to Analise with SB & Colin. Analise is 4.5 years old and functions around L3-4. She was shunted at 3 months of age with no infections or malfunctions to date. She is cathed 5-6/day and we do a cone enema. She wears KAFOs and walks with crutches.. and working on walking without the crutches! She is an absolute blessing to us.

Welcome to our site!

[LillyPie]

WOW! Now I know what the Mitranoff is!

[Jill]

welcome! :)

[Emm]

Just to say welcome.
Lots of help and good advice on here.



:peace:

[tessa3598]

Thank you so much for all the warm welcomes from everyone!! Im really excited to meet all of you!! Sorry if I dont respond to you in the right way to the threads, still getting use to this :) Anyways, in response to lillypie, Wow it sounds really fimiluar to our experience the first couple of years with the shunts. In and out a lot. Maybe they should fine tune a little :) UTIs were very common for us too, I glad that they are calming down for you guys finally--THEY SUCK!! Trying to find the right meds that arent resistant etc. It seems like the first years suck, but they calmed down for us for a good 5 years or so, so hopefully the same for you :) School is totally another world. We were very lucky to beable to get an one on one nurse that has followed Tessa every since she was 3 in preschool. That really puts my mind at ease when Im not with her. For her peers like you were asking, they pretty much all are very excepting of her. The few that had issues was just because they were jealous that she got "special treatment" in their eyes, but when the kids got to ask her questions and her respond to them, it made them lighten up and now all her problems are, are the normal kids things. Im not sure if that was what you were refuring too??

[misty]

Hi Sarah and Tessa! My name is Misty. I'm L5-S1 too! Welcome to the group! Everyone is very friendly and helpful, but you'll discover that for yourself soon enough!