Saturday, October 11, 2014

Co-conspirator and Who Turned the Drama Up to 11?

"Come here and I'll get you in."

That's what I heard The Almost-Four-Year Old saying to The Almost-Two-Year Old.  Upon investigation, the younger was inside a cardboard box that we use to store the many and various stuffed animals we have collected and the older was attempting (with little success) to join her.

Unrelated, Nora was feeling kind of frustrated this morning when she couldn't find a particular toy.  "I can't find the ball.  I just don't know what to do anymore!  I can't find the soccer ball!"  Fortunately, Daddy took pity on her and helped her find the ball (a small soccer ball that fits into a foot-powered ball launcher, which she then wanted help using.)

Thursday, October 9, 2014

More spina bifida awareness

Spina Bifida fact of the day: people who have Spina Bifida are at increased risk of having an allergy to latex. The risk is believed to be due to increased exposure, probably due to the higher-than-average number of medical appointments and procedures that also comes with Spina Bifida (and, believe me, there are A LOT more appointments and procedures).

What do you do about it? You do what's referred to as "latex precautions." You avoid latex, even though you haven't had a reaction yet. Easier said than done because latex is in darned near everything! Anything that sticks really well--Duck Tape, Bandaid (brand name) bandages, etc--probably has a latex adhesive. Interestingly, hardened rubber (like wheelchair tires) usually doesn't contain the allergen even though it is made from natural rubber.

At our house, we avoided latex baby bottles and pacis when the kiddos were little bitties, we use latex-free bandaids on our boo-boos, and you won't find rubber balloons at our birthday parties (the dusty coating inside the balloons is particularly dangerous for someone with an actual allergy because the allergen gets in your lungs and nasal cavity). I do let Addy be in a room with balloons since she isn't actually allergic, but don't allow her to play with them. If she develops a full-blown allergy, I will have to be "That Mom" who calls before Addy goes to another kid's birthday party to suss out the balloon situation.

For more info about the SB-latex connection, check out

Wednesday, October 8, 2014

A Thousand Days of Progress in Under Three Minutes

Not everyone who has spina bifida is able to walk and those who do often need the help of braces and/or crutches of some kind.  Walking--even short distances--makes life a heck of a lot easier and we've always had it as a goal for Addy.  This video montage shows her progress from starting with the mobile stander to a couple of weekends ago when she decided to run to the park.  You've come a long way, baby, and you've worked hard to get there!

Sunday, October 5, 2014

Diagnosis, schmiagnosis. This big jumble of big scary sounding words are some of things doctors have said that Addy has. Here's what they translate to:
* Spina Bifida is the spinal malformation.
* Myelomeningocele is the specific type of lesion that she had. The spinal malformation (myelo) allowed some of the spinal nerves (meninges) to protrude out of the spinal column in a in a cyst-like pocket (cele) outside her back. In her case, the membrane covering the cyst was still intact when she was born, which helped protect the nerves from damage.
* Chiari Malformation is a brain malformation in which the base of the brain protrudes down into the top of the spine. In the case of a Chiari Malformation that is secondary to Spina Bifida it's caused by the spinal cord tugging on the base of the brain due to the Myelomeningocele. It can cause breathing difficulties and gag reflex issues among other things. If the symptoms are significant, it can require brain surgery to relieve the pressure. Addy does have some gag issues, but they are successfully addressed with occupational therapy exercises instead of surgery.
* Hydrocephalus is a problem with the flow of cerebral spinal fluid (CSF). Sometimes it's a blockage along the path where the CSF is supposed to flow and sometimes it's caused by an over-production of CSF within the brain.  In either case, it causes a build-up of CSF in the brain.  If the pressure from the extra fluid isn't addressed, it can cause brain damage.  In the case of someone with Spina Bifida, it's usually caused by the Chiari Malformation disrupting the CSF flow into the spinal column. You can have hydrocephalus without Spina Bifida and you can have Spin Bifida without hydrocephalus (though most people with a Myelomeningocele lesion do have both). Almost all people who have hydrocephalus (including Addy) require surgical intervention to address it. In Addy's case, that intervention is a shunt, which redirects the excess fluid into the peritoneal cavity. Shunt failure or blockage is something we have to keep half an eye out for and usually requires emergency surgery to address.  We are very lucky that Addy has only needed 1 shunt revision so far.
* A syrinx is a pocket of CSF that forms within the spinal column. Again, you can have a syrinx without Spina Bifida and you can have Spina Bifida without a syrinx. The risk is that the syrinx could grow and pinch the spinal cord or the spinal nerves, causing loss of function or nerve damage. Addy has 2 small ones right now and will be having imaging (full spine MRI) to monitor. If she becomes symptomatic, we will have to look at surgery to address the issue.
* One thing doctors have failed to diagnose is the grit, drive, determination, and pure moxie that Addy has. That's okay with me, though, because I'm pretty sure our insurance company would figure out how to deny all of our claims if they knew about it.

Wednesday, October 1, 2014

Spina Bifida Awareness!

It's Spina Bifida Awareness month!

What is Spina Bifida?  It's a neural tube defect.  It's the most common, permanently disabling birth defect.  It's the most complicated, multi-system condition that is still compatible with life.

What isn't Spina Bifida?  For starters, it isn't fully understood.  Folic Acid seems to play a role, but taking it only reduces the risk of your child having it.  It isn't contagious.  It isn't curable.

Spina Bifida is a malformation of the spine that occurs very early in pregnancy.  The location of that malformation gives some clues about what kinds of challenges a person is likely to have, but it isn't a strict correlation.  This chart (link) from the Spina Bifida Association has some general information about how lesion and function are connected.

The most important thing to know about Spina Bifida is that everyone who has it is affected differently.  Even two people whose lesion was at the exact same spot on their spine may have different impairment and challenges that they face.  Still hungry for more info?  Check out the National Institutes of Health fact sheet on Spina Bifida (link).