Spina Bifida awareness

Good morning everyone! It’s been awhile since I posted, it’s been crazy around my house lately.

Today I’m talking about spina Bifida. If you have a child with a different disability, let me know what it is and when awareness month is and you can either do a guest post about it or I will research and write one up!

So, my little man has Spina Bifida. Along with many other children who have SB he also has a chiari malformation and hydrocephalus. 
Spina Bifida is a spinal cord injury that happens in vitro and there really is no 100% for sure cause of it. The medical world says it’s a folic acid deficiency but I had been on folic acid for more than a year before I got pregnant. It is permanently disabling. No surgery or therapy can ever fully reverse it. THAT SAID, my kid was never supposed to crawl, walk, talk, eat, etc etc etc…

  • At 9 months old he couldn’t sit unassisted. 
  • At 11 months old he did so for the first time. 
  • At 10 months old he started to “army crawl” 
  • at 13 months he started to regular crawl. 
  • At 1 1/2 he got a walker and started to walk assisted. 
  • At 3 he started soccer in the walker. 
  • At 4 he got forearm crutches. He played soccer again using the crutches. 
  • He recently started walking short distances without the crutches.

Let’s run some statistics past you all, as this is an awareness post.

  • Spina Bifida is permanently disabling. It can get better with work and treatments but it can not fully go away.
  • SB happens in 1 in every 1000 births
  • 64% of pregnancies with prenatal diagnosis are aborted.
  • Sometimes -like in our case- folic acid is not enough… but it can help. Taking folic acid for 3 months before conception can decrease risk by up to 80%
  • SB occurs in the first 28 days of pregnancy – BEFORE you know you’re pregnant.
  • Children with SB and their families can and do lead very happy and successful lives.

To conclude I want to share this with you…

My husband and I do not treat our child with SB any differently than our other child. We expect him to TRY everything. As a result, he has come a LOT further than the medical world deemed possible. We push when it’s appropriate, and stand back and see how far it takes him. I will say though I’ve seen it both ways. Some family members (not immediate family… grandparents or aunts/uncles) insist on babying him. He’s 5 and someone likes to try feeding him still. He takes FOREVER to eat most days, but I refuse to go there. I will sit with him until he’s done eating but I refuse to feed him. When you treat him that way he 100% regresses. He starts crawling rather than walking. Yet when that person is gone who babied him, he starts walking again. We have asked them to stop and let them know if it continues they can not have meals with us again.

How do you deal with people who way overstep?!

Take care of yourselves!

~C

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