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.)

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 http://www.spinabifidaassociation.org/site/c.evKRI7OXIoJ8H/b.8277195/k.12A8/Natural_Rubber_Latex_Allergy_in_Spina_Bifida.htm

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!

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.

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).

Not a recipe post

Busy little princesses we have.  Addy is full-force in her second year of Pre-K and loves it.  She's in the middle of all the pre-reading phonetics stuff that makes you sound like you're stuttering ("What letter does h-h-hat start with?").  I may never have a normal speech pattern again!

Nora is enjoying her routine as a more-or-less only child for several hours during the day.  And growing like a weed!  The stinker spent the summer wearing the clothes her big sister wore last year, and this fall is wearing the pants that big sis has just barely grown out of this summer.  I see hand-me-ups in our future.

Another recipe post

We're tried several other freezer recipes recently: Chicken and Applesauce BBQ, Creamy Chicken with Broccoli, Chicken Tacos, Honey Rosemary Chicken, and Spinach and Mushroom "Empanadas."

My initial thought on the Chicken and Applesauce BBQ was kind of "meh," but I think it had more to do with having had a mid-afternoon snack of BBQ chips than the recipe itself.  My kids wouldn't eat it, but the gown-ups did.  It was better as leftovers with some baked potato wedges.

I had my doubts about the Creamy Chicken and Broccoli.  Italian dressing packet plus cream of mushroom soup?  It sounded weird, but turned out really tasty.  When I made it again--which I did last week--I subbed Italian seasoning instead of salad dressing mix.  The texture is a little weird since this one actually cooks pretty quickly and, unless you like shredded creamy chicken and broccoli, you need to plan on it cooking in about 3-4 hours instead of 8-10.  Or maybe do it as a casserole.  I don't know--raw chicken scares me, which is why I've stuck with the shredded-in-the-crock-pot version.

Chicken tacos.  So stupid-easy.  Chicken, salsa, taco seasoning.  That's it.  I found it a little saucy and really salty.  I will probably use low-sodium (or home-made) taco seasoning instead when I make it again.

Honey Rosemary Chicken was highly rated by the person who posted it. "Be generous with the gravy; it's fabulous," she said.  I'm not sure why.  It was so gross that we had drive-through that night (I had handbell rehearsal that evening and went through a drive-through on my way home).

Spinach and Mushroom "Empanadas" was the one non-crock-pot recipe I tried in my first round.  I used jumbo crescent rolls instead of making dough (press the dough flat, add about a tablespoon of filling at the wide end, and roll up like you usually would, making sure to seal the edges).  I made 16 of them--SIXTEEN OF THEM--and still had about 1/3 or 1/2 of the filling left over.  I put the 16 rolls on parchment paper on a cookie sheet and froze them for a few hours until the were hard, then put them in individual bags so I could cook a few at a time, and stuffed all the baggies into a gallon bag.  (The extra filling went into a gallon bag in the freezer.  I cooked it with some extra cheese and some chicken broth and put it on pasta.  Really yummy.).  The kids kind of ate the stuffed rolls.  Big thumbs up from the grown-ups on this one.

That's the scoop.  The mostly good and only one really bad and ugly on my freezer meals.  I'm not convinced that evenings are less hectic, but I do feel like my grocery shopping is somewhat more efficient most weeks and it's nice to kind of coast and only have to pick up milk, bread, yogurt mid-week.