It is 'major', but we are blessed - there are so many things associated w/spina bifida that could have afflicted Morgan that does not. She never developed hydrosepholitis and to date she has only had to have the initial surgery. She has a great spirit and a loving family who's willing to be strong enough to not do everything for her so she will grow strong & self suficient.
I am fortunate to have been able to retire at a young age & be there to help out. She is definately the ray of sunshine in my day :)
I've posted a few more pictures of Morgan so you can see some of what Lisanne meant by how things are not 'visible' and some of the fabulous technology out there to help.
Morgan can not walk (there are a few other 'issues' w/her lower extremeties as well) but she has a sharp, excellent mind. She uses a wheel chair. Any movement that her legs do comes from what little hip flextion she has & her fabulous stomach muscles. Even though the Dr. says she won't walk, we still spend an enormous amount of time doing physical therapy for her. Being where she's only 2 1/2 yrs old, she thinks we're all just play'n with her. Morgan thinks that every body is her play mate :)
Some days she trys really, really hard & then some days she refuses to cooperate. She can't be left on her own in her RGOs. It's really hard for her to 'work' them. When she wants to she does a great job of moving in them, but motivation is a problem - hard 2 motavate someone so young to do something that is so hard (not because she has any pain but because she can't feel her feet/legs and to try to walk she must balance & use the rest of her body).
We also have a special stander that she gets strap in to. It has a table set up & holds a bowl. We fill the bowl w/water & she's content for at least 1/2 hr *giggles*. I don't have a picture of her in that yet... This contraption is to enable her to be in an up right position & for weight bearing since she can't do it on her own.
There will be no vegitating 24/7 for this kid *giggles*
We have an entire net work of therapists and a case worker that is very helpful. So, yes this is serious but with today's medical & technological advancements we can be thankful that Morgan will have a productive and happy life.
Originally Posted by Lisanne
She is adorable - but I can't agree with the rest of this. Spina bifida is a seriously disabling condition. Right now it's not visible to us in Morgan's pictures, but it's not just "a little adjustment once in a while" for most children and adults. It's major, and it's every day of their lives and usually, of their family's lives, which often revolve around the person's needs and limitations. At least things have gotten better with better accessibility, the availability of adaptive devices and more aware social attitudes.
I am very, very glad for your grandson's sake, as well as for everyone in your family, that he won't have spina bifida.
Morgan in her RFOs.
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Back view of RFOs.
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