[trnews71]

we are in the process of adopting a little girl with spina bifida. This little princess is able to walk, does need special shoes but is not able to control her bathroom needs. Can anyone give us advice regarding school? Thanks

[Dmommab]

Does she need to be catherized or does she wear diapers? A friend of mine has a daughter who has to be catherized & her mom goes to the school every day at lunch time to do it. If she needs to wear diapers that will probably be a little more difficult since she may be asked questions by the other children. Just try to make sure the clothing she wears doesn't make it obvious that she is wearing diapers (which I'm sure you already do). Good Luck!

[trnews71]

I believe she is wearing diapers. We havent been told anything about getting her catherized yet. Thanks for the advice.


Carla

[Shay]

Carla..did I know this? I don't think I knew you were adopting a special needs child...how wonderful! It is folks like you that I adore and admire...you are truely her gift from God and she is his gift to you.

You are amazing!!!

[trnews71]

Thanks Shay for your words!

I am not sure if I had said this on the board but yes, our little angel has some needs. She is our little miracle baby. We are trying to get as much information as possible. We also went to the school close to our house to talk to some teachers and the principal of he school. We just asked the agency for an update information of her. We have not heard anything about her since April.

Carla

[cjhawk38]

I am an adoptive mom to 2 spina bifida girls, ages 7 and 15. If she isn't cathing I'm sure the urologist will start her because it is the only way to remain dry.

How old is she?

SB kids also don't have bowel control so that will need to be managed to. My youngest had a procedure call ACE done when she had her right kidney removed where she inserts a catheter into her belly button and does a high volume enema and my oldest does her own enema using an enema bag with a stoma cone attached and she holds it on her bottom. Because of cathing and bowel management both of my girls are continent.

Both my girls are very involved in wheelchair sports and the oldest one is on her high school varsity swim team. (no leg movement but great upper body strength)

Feel free to email me at Cindy@provide.net if you have any spina bifida related questions.

Congratulations

[trnews71]

Cindy,

Thanks. Our little girl just turned 6 on May. We can't wait to meet her! We haven't travel for trip one yet.

[cakegirl]

There are a lot of variations in the severity of symptoms of children/adults with spina bifida. My dad has it, and really had a "normal" level of health as a child. It was only when he was about 70 that he needed a permanent catheter.

[trnews71]

Thank you Cakegirl!


My little girl is able to walk but does need special shoes. She has no control of her bathroom needs though.

[HongKongMomma2B]

My niece has SB and is cath. She is 10 and is in a 6 or 7 year old mindset. She is in a special education class where a paraeducator will take care of all that. When she needs to go, she lets the para know and they go into the bathroom. It's all done very privately and everyone involved with her has had medical training in order to do what they are doing.