Just as it is important to have someone to talk to and be just a regular mom, it is also important to be able to talk to someone who just gets it.
Baby Center has a group Spina Bifida Kids, there are a bunch of facebook groups (including Living with Spina Bifida and Take That! Spina Bifida) and of course my own group Our Lives, with spina bifida for family, parents, children and adults with spina bifida who live in Ontario. And I can’t forget all of the blogs that are out there (including my own).
During the first couple of years after D-Day I scoured these blogs and groups and tried to find what life would hold for us. Until we just started living our own. Now I use these groups because somewhere out there someone has the same thought as me, or are thinking of the same surgery, have the same concern, or just want to vent. It is for those questions that you want to make sure you have all the information before you get the doctors opinion. As well it gives me the opportunity to give my own experiences to others.
The VP shunt has been used to treat hydrocephalus since 1949, and the valve in the shunt was designed by a father (John Holter) of a child with spina bifida and hydrocephalus who just needed to DO SOMETHING, and thought that he could. And he did, creating the Spitz-Holter valve, a design that is still used today. This father continued to manufacture the shunts by hand, supplying over 500 a year.
The shunt is 2 catheters and a valve. One catheter is inserted into the brain (into the ventricles) to take the fluid out, then through the valve (that is located against the outside of the skull) and takes the fluid through the other catheter, down the body, (under the skin) into the peritoneal space in the belly.
· Excessive sleepiness, can’t wake up or stay awake
· Vision problems
· Changes in eyes, including crossed eyes, uncontrolled eye movements, sunsetting of eyes
· Personality changes
This way of giving an enema (as opposed to the traditional way) is more effective in preventing constipating and improving continence as the colon will be empty and prevent accidents through the day. It also allows Nickolas to gaining independence to be able to do this himself.
As well anything that goes into the mouth (i.e. dental products, pacifiers, nipples) or remains on the skin (i.e. bandaids) or that is obviously rubber (i.e. rubber bands) are not in the house.
And that is it.
I hope over the month that I have helped to increase awareness and helped you to learn something you might not have know.
And at the end of the day, even with all of the medical stuff and concerns, this is what spina bifida looks like.
Not because he was born with spina bifida or in spite of being born with spina bifida. But because he is Nickolas, a little 4 1/2 year old boy who LOVES AND LAUGHS.