What is Spina Bifida??

Since I have renamed October (see FB post if you are not sure) and want to help answer questions and help others understand what Spina Bifida means in our family. I thought where better to start than with what is SB?!! I found this snippet  attached at the bottom, but before you read that  here's a little note from Phoe.

Hi, I am Phoenix, I am 4 years old. I love my family, BIG, I can't stop wanting to be with them and a part of everything they are doing. I love conversation and Music, ohh I love Music, especially fixated on guitar these days. I watch music videos and try to mirror the guitarist's fingers on my Papa's ginormous guitar. I LOVE my Papa, he is my legs and my goofy, anchoring and understanding confidant. I light up when new people make time for me, I have a Fabulous smile and the Best laugh, that's what others tell me. I am super sensitive in my heart. And sensory sensitivr when others are too loud or make sudden unexpected noises. I work hard everyday to do life and some days I am emotionally drained from simple things like moving my wheelchair. On those days I whine and cry A LOT. I have breaks to recollect myself and snuggles help too... Really I am just like you, our differences are many, but none are big enough to not Celebrate each other! I just have a lot of extra people in my life on a weekly and monthly basis (6+ specialists, 1 Physical Therapist and 1 Occupational Therapist), some surgeries and some life long medical challenges. This is just my body and it can't do everything yours can, but the heart and spirit of me are strong and beautifully complex (just like you).

Oh and I have a pretty special Sister, her name is Baby Genevieve and she has Spina Bifida too. I think she'll walk one day and I LOVE HER! I am always wanting to hold her and protect her. I know we'll bring each other great joy and in sharing the challenges of Spina Bifida we'll be able to cheer eachother on. You'll love her too, she's a little bit like me.

What is spina bifida?

Spina bifida is the most common neural tube defect (NTD),
a birth defect of the brain and spinal cord. The most severe
form of spina bifida, known as myelomeningocele, results
in a sac-like lesion along the spine where the spinal cord
and the nerves are open and exposed; there is no protective
skin or backbone covering. The less serious forms of spina
bifida are meningocele, in which the spinal cord itself is
not damaged but its protective covering is exposed, and
spina bifida occulta, in which only the bones of the spine
are malformed but the nerves and spinal cord are normal
and covered by skin. Throughout this information sheet,
the discussion of spina bifida will be largely focused on
myelomeningocele, the most severe form of the condition.
The damage caused by spina bifida varies, depending on
its location along the spinal column and to what extent
the spinal nerves are affected. About 80% of spina bifida
lesions are on the lower back.

Spina bifida can be surgically repaired after birth, but the
nerve damage is permanent, and can result in paralysis,
sensory loss, learning disabilities, difficulty with bowel and
bladder control, orthopedic problems, and hydrocephalus,
an accumulation of the fluid that is produced by the brain.




http://childrensnyp.org/mschony/MungoBlobs/256/197/CJ_Thain_SpineBifida_2.pdf


Next up will be how to talk with your kids and help them and (you ;) know the Best way to love those who have Spina Bifida or anyone "different outwardly" really!