Conclusion to "Once Upon Another Time" plus another (complete!) story

The End.

(In all honesty, I couldn't keep track of the princesses' names and I'm not sure Addy could either.  She officially declared the story finished and done a few weeks ago.)

The newest tale goes like this:

Once upon a time there were 3 princesses and a prince.  The prince had icky, sticky fingers because he had been eating something and got it all over his hands--yuck!  They found a big scary dragon, who huffed and puffed like The Big Bad Wolf and blew them away.  Then the dragon went to see a scary witch.  The princesses and the prince climbed a tree so they could hide and see what was going on.  The witch waved her wand in a circle and that made the dragon go away.  Everyone lived happily ever after.  The End.

The stocking are to be hung where exactly?

According to the local preschooler, we need to build a brick wall in the living room so that we can add a fireplace so that there can be places for the stockings to hang so that Santa can bring us our presents on Christmas morning.  I promised her that there is, in fact, no absolute necessity of a fireplace or even a chimney in order for Santa to stop by.  Good behavior, however, is definitely still required.

Speaking of stockings, Little Sister and I found ourselves with an unplanned day off together this week, so we made a stocking for her.  I really should have gotten Addy's out to use for a template, because the new one is a bit smaller.

Oops.  Good thing Santa is happy to leave things outside the stocking if they don't fit.

Oh Christmas Tree, Oh Christmas Tree

Obligatory "can you tell that our kids decorated the tree?" picture:

It's the first tree the kids have actually seen get put up because The Evil Wire-Chewing Cats are currently banished to the laundry room--the first and only other time we put the tree up, it took Merry and Sam about 36 hours to chew through all but 1 strand of the lights on our pre-lit tree.  The kids were really excited to see it and put the ornaments on themselves.  Nora squealed, "Oh look!  It's Christmas!" every time we opened a box.  But my sappy "aw, don't 'fix' it, just let the bottom third of the tree be decorated because that's how far the kids can reach" idea backfired because Addy has pointed out about 50 times that if I would just go to the store to buy more ornament hooks, I could put up the rest of the ornaments and fill in the "barefoot" spots on the tree.  Yup, she's definitely my kid. 

Once Upon Another Time...

Once there was a princess who lived in a castle.  She was dancing and she had a cat in her hand!  Her name was Asia and the cat's name was Fooda.  Fooda was pink, like Strawberry Shortcake's cat, and had pink stripes.  Asia was wearing a pink dress that was pink like Fooda, and she had on shoes called "slippers."

Asia lived in the castle with her 4 sisters.  They all had cats, too.  Each of the princesses lived on a different floor of the castle (except for the twins, who lived together on the same floor).  Asia was the oldest and so she lived on the top floor of the castle.  Next was Fooie, Fia, Fia, and Daygwyn.  (Fia and Fia are twins.)

Kid-isms

Nora took a sock off after snack today (yes, she took one off and left one on).  She was asked why she did this.  "So I can feel the floor," was her response.

In a separate conversation today, Addy was sitting at the table and Miss C pointed at the cup in front of Addy and reminded her to "be sure to not just eat pretzels, but also drink that, too."  "You mean the liquid?"

Chapter 3

[Part 1 is here.  Part 2 is here.  This is the thrilling conclusion of "The Animal Friends."]

After they finished watching the surfer girl movie, the animal friends had some lunch.  They had peanut butter and nutted sandwiches.  [A nutted sandwich is when you add extra nuts to your peanut butter.  This time, the chipmunk went outside to the back yard and picked up acorns to chop up for the sandwiches.  She had to be fast because there was a squirrel outside, too, and you do NOT want to eat acorns that squirrels have eaten!]

After the sandwiches, everyone put on their jackets so they could go outside.  The chipmunk's jacket was pink, the elephant's jacket was green, the pig's jacket was purple, the monkey's jacket was dark orange, the gorilla's jacket was blue, and the baby bear's jacket was yellow.  They all ran around in circles and were very dizzy outside.

After that they were ready for an adventure!  Everyone packed a flashlight, a backpack, and a sleeping bag.  But nobody packed a tent!  They went next door to the horse's barn for their adventure.  The horse was nice and opened the door for them.  She also put together a tent for them to sleep in.  It was a big tent--big enough for everyone to fit--and it was yellow because that's what color tents should be.

They also had a campfire and roasted marshmallows and hotdogs.  They didn't tell ghost stories around the campfire, but they did read a story about Monster Pinkfoot.  He's a boy.  He's pink.  He's a pretty nice guy.  And then, while they were reading his story, he showed up so he could sing them a song.

"I .... like to sing.  Oh, I ... like to sing!"

That's the end of the song.

And that's also the very end of "The Animal Friends" story.

Chapter 2

[This is the exciting continuation of the epic story "The Animal Friends."  You may recall that at the end of the first installment the pig, monkey, elephant, horse, baby bear, gorilla, and chipmunk had been playing games together since 3:00.]

The horse had to go home at 4:00, so he did.  The other animals wanted to watch a movie together.  It was about 4 surfer girls.

The first surfer girl wanted to check out the bottom of the ocean, so she did.  And do you know what happened?  She got stuck!  Stuck under a rock under the ocean!

The second surfer girl wanted to check out the waves, so she did.  Do you know what happened?  She got bonked on the head by a wave and couldn't get back!

The third surfer girl didn't know what she wanted to do.

The fourth surfer girl wanted to go surfing, so she did.  She surfed in the waves and then wanted to check out the sand, but when she got to the sand, she got stuck!  (It was just regular beach sand, not quick sand.)

After that, the third surfer girl figured out what she wanted to do: she wanted to go rescue the other surfer girls.  First, she went to the bottom of the ocean to rescue the first surfer girl--the one who was stuck under a rock.  She had to puuuuull reeeaaaally hard to get her unstuck, but it worked.  Then she went to the waves and rescued the second surfer girl.  Then she went to the beach and tried to rescue the fourth surfer girl, but it didn't work very well at first because she didn't realize she needed to dig at the sand.  Once she figured that out, it worked much better and the fourth surfer girl got rescued, too.

After everyone was rescued, they had to go take showers because they were covered in sand.

And that was the end of the surfer girl movie.  All of the animal friends liked it.

Some Nora-isms

Nora is very keen on knowing what the rules are and correcting anyone who might be breaking them.  Case in point: We went out to dinner at a restaurant that had football playing on several TVs.  Nora looked up after an exciting play and said "Dat's enough running!  Stop the running--all the TVs!  Stop running!  Stop clapping!"  This evening she looked out the window of the car and saw some birds on a utility wire and told them "Get down from there!  Get down, birdies!"

The Animal Friends

Addy told me this story tonight while we were getting her ready for bed.  It will be even more epic after there are illustrations, but, for now, I need to write down the story so I don't forget it.  Part 2 can be found here.  Part 3 is here.

Once upon a time, there was a pig, a monkey, and an elephant who lived together on a farm.  They went for a walk in the woods one day and got lost.  Then they found the path in the woods that leads back to their house, so they walked on the path and got back to their house.  Then they were unlost.

When they got home, they decided to celebrate by spinning in circles.  They used a bicycle, a scooter, and a rocket sled.  They took turns because they were nice friends.  Then their friend the horse came over and they all rode on the roller coaster together.

After that, they were hungry for dinner.  They had spaghetti.  It had butter and cheese on top.  There were oranges on top of that and spaghetti sauce on top of that and some kind of peach-like things on top of that and some blueberry-banana yogurt on top of that.

Next they needed a nap.

The 4 animals--the pig, the monkey, the elephant, and the horse--all worked together and the flipped the couch over so that it would make a cave.  The pig, the monkey, and the elephant all got in the cave to sleep, but the horse wasn't tired.  He went outside for a while.  Then he came back inside to check on the other animals.  They all still had their blankets.  Then they all woke up.

That's when the baby bear, the gorilla, and the chipmunk all came over and they all played games together.  The horse was still there because it was only 3:00 and he didn't have to go home until 4:00.

The end.

Phew, October is over and done with!

October is kind of a busy month between the dodging all of the pink breast cancer awareness barf that permeates everything, Spina Bifida awareness (which doesn't permeate nearly enough!), Nora's birthday, Halloween, etc.  Anyway, time moved forward, life as we know it continued, Little Bit turned 2, and we didn't go Trick-or-Treating.  I'm ready to move on into November, a.k.a., Birthday-Palooza with some Thanksgiving on the side.

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.

Curry verdict

Chick pea curry was easy peasy to freeze and cook, smelled fantastic all day, and tasted good to everyone over the age of 3.  It also made a TON of food, even after I cut the recipe in half.  I ended up doing individual portions with the leftovers and re-froze them.

Original recipe (link) called for 3lb of chicken and 2lb of chopped butternut squash.  I used 32oz of canned chick peas instead of chicken and halved everything else.  To cook, I put the freezer bag contents in the crockpot along with half a can of coconut milk.  It didn't look like enough moisture to me, so I added half a can of broth, too.  About 30 minutes before we were ready to eat, I added the rest of the coconut milk and about 2/3 bag of frozen peas (peas are Addy's all time favorite vegetable, so I cooked the rest of them plain so she would have something to eat).

Mommy and Daddy ate the curry with rice and got quite full.  The girls did at least taste the sauce, but ended up eating plain rice, plain peas, crackers, and cheese.  Overall, it went about like I expected, but not as well as I had hoped.

That's me on a bandwagon

I'm jumping on the not-at-all-new freezer cooking train with the hopes of having more sanity in the evenings.  With one slow eater and one picky eater--much improved over 6 months ago, but still pretty limited in the proteins and veggies that she'll eat in any measurable quantity--we don't have time to cook multiple dinners and get kids fed and up from the table in time to get them (and us) to bed at a reasonable hour.

Level 7 Zen Master Freezer Cooks manage to spend a limited amount of a Saturday preparing and freezing a month's worth of meals (breakfast, lunch, dinner, and snacks) and there are websites and blogs devoted to menu and process planning.  I'm not even remotely there (yet) and I'm also kind of apprehensive about jumping in full-force.  Part of the time savings comes from making double or even triple batches of meals, but if it's a recipe you decide you don't care for, why would you want to have 4-6 (or more) serving's worth haunting your freezer?

Most dinner recipes I found are either casseroles or slow-cooker recipes.  I went with all slow-cooker ones this time (though the fresh batch of Sloppy Joes I actually cooked in a skillet).

I spent a couple of evenings looking for recipes and trying to figure out if and how to modify them--onions don't agree with some of us and I decided I wanted at least 1 vegetarian option.  Then came trying to figure out a sane order for doing the chopping and bagging (and then when I actually got started with prepping, I looked at the clock and decided to do things completely differently).  Go me.

So far we've had Sloppy Joes, which have turned out to be pretty yummy.  Here's the original recipe (link) and here's what I did differently:

First off, I looked at the tomato paste and decided that, since I hate dealing with partial cans of tomato paste, I would go ahead and make several batches so I could use up a whole can.  Two tablespoons is about an ounce and tomato paste comes in 6 ounce cans, so that means making 6 batches.  Sloppy Joes are pretty safe and this recipe looked pretty good, so I went ahead and risked it.  Five batches went into the freezer, one was cooked up right away.  If you have one, the shredder blade on your food processor is your best friend for this task.  It was mine.

Second off, this recipe calls for onion, which, as I mentioned, is not enjoyed in large quantities in our family.  I reduced the onion by about half and subbed part of a rib of celery to make up the lost volume and moisture.

Third off, the instructions say to cook the whole thing and then freeze it so you can just reheat it later.  I think it's silly to go ahead and cook food just to re-cook it later.  Besides, I usually buy hamburger in a 3lb family pack and freeze the 2lb that I'm not using right away.  What I decided to do is mix up just the sauce (minus the canned tomato sauce), portioned it into bags, and froze it.  That also leaves the recipe flexible for using ground chicken, turkey, or tofu instead of beef when it comes time to actually cook it.

Overall, this one is a winner.  It fed 2 adults and 1 toddler for 1 dinner as sandwiches--I did get the picky preschooler to eat a sandwich with just the sauce plus a slice of cheese, but she declared it too salty (ha ha!) and would only eat plain cheese sandwich after that.  I made some pasta to add to the leftovers to make it into a second dinner plus 2 adult's worth of lunch.

Tomorrow night: Chickpea coconut curry.

This ain't no house of straw

Addy built a house out of Mega Blocks this morning.  The following conversation ensued:

Addy: Nana, the house is ready!  You can be the Big Bad Wolf and I will be the 3 little pigs.

Miss C: Okay!  Little pig, little pig, let me come in!  Now you say, "Not by the hair on my chinny chin chin!"

Addy: Not by the hair on my chinny chin chin!

Miss C: Then I'll huff and I'll puff and I'll blow your house down!  [Miss C blows on the house].  Addy, you're supposed to knock down the house, remember?

Addy: Nuh-uh!  This is a house bricks!

More kid-isms

All separate occasions.  All pretty hilarious:

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Nora: I want sammich!  And cheese!  And butter!

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Nora (who has gone from having zero patience for books to an insatiable need to hear stories, or at least look at all the pictures): I want... moggers [monsters] book.  And dinos.  And monkeys.  And piats [pirates].  And egg.  And pincess [princess].  And George.  And...

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Addy: Excuse me, Mom and Dad, but Sister and I need to have a private conversation over here, so please stay over there so we can have some privacy.

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Addy: I would like some orange juice please.  Do we have all the ingredients to make that? [She specifically wanted orange flavored Kool-Aid.]

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Addy (upon finding that the hamburger stew that I made for dinner had carrots, celery, mushrooms, and bell peppers, but not peas): Mom, why did you forget to put peas in the pot so they could cook?  Those are my favorite!

I'm not sorry

Now that we're fully entrenched in this life phase of having not 1 but 2 children who are fairly steady walkers, if not always fast or focused in that task, I find us moving at a different pace than most of the world around us.  It's definitely a different pace than we were moving at even a few months ago and it's exciting and awesome and interesting in all kinds of ways.  And while "slow and steady wins the race," I can't help but notice that we tend to cause a bit of a traffic jam as we walk down the aisle of a store or make a slow exit from a restaurant (restaurants especially take more effort just because of the doors and mud rugs that need to be negotiated).

So far (knock on wood) we haven't gotten many negative comments--Loud Anonymous Neighbor Guy is really the only negative person I've heard so far--but I can see when someone has to abruptly stop and wait for us to pass that sometimes they might be thinking something along the lines of "Hurry up already!" or "You brought a wheelchair; use it!" or "Just carry her already!"  (That last one is really ironic because most people, when they see you carry a 3 year old, will bust out with the helpful opposing advice "Let that child walk!")

For whatever reason, I usually feel like I need to acknowledge that we have interrupted a stranger's day.  Yes, it's about a 5 minute delay on getting their French fries or getting off the elevator or getting to the shampoo aisle, but it's still something they didn't expect to find.  I started out apologizing when we were first encouraging Addy to walk any- and every-where, but that felt so wrong.  The truth is that I'm not sorry that she walks slowly and I don't want her to be sorry either.  I'm proud of her.  She works hard--really REALLY hard--and has made a ton of great progress as a result. I'm grateful more than I am sorry.  Grateful that she's able to walk and dance and be independent and be so self-motivated to keep working at something that is such a challenge.

So "sorry" is out.  What do I say instead?  I choose to say "Thank you" instead.  "I really appreciate your patience."

News Flash: I have bad days sometimes

Let me just preface this with a quick disclaimer: the title of this post should not be taken to mean that things are "bad" right now.  They're not.  Things are actually pretty rockin' awesome.  Kids are healthy.  We're healthy.  Nora is a talking, singing little crazy ball of energy (actually a pretty tall ball of energy; the little stinker is wearing clothes that Addy wore last summer already).  Addy is a walking fiend and is getting fabulously quick with her crutches.  The house is a wreck with toys and whatnot, but that's to be expected.  It's a little rainy this week, but we have food, a roof, and good jobs.  And now, if you'll excuse me, I need to go knock on every piece of wood furniture I can find...

The back story for this post is that someone had posted a picture on FaceBook yesterday.  It's a picture of the person's son with a Superman cape draped over the back of his wheelchair.  To the image she had added the message "Always Be Strong Because You Never Know Who You Are Inspiring."  

Not cool Mostly Anonymous Woman On FaceBook.

"Always be strong" is just about the dumbest, most misguided, sanctimonious advice you can give out.  I am strong most days, mostly because I don't know how else to be and still get stuff done.  That's how most moms--and dads!--are and special needs parents are no exception.

And let me tell you: it's downright exhausting being strong.  Physically.  Mentally.  Emotionally.  Every aspect of it.  It's hard work finding therapists, doing therapy work at home, going to doctor's appointments, dealing with medical supply orders, lifting wheelchairs, finding clothes and shoes that work with braces,  finding clothes and shoes for skinny beanpole kids with crazy narrow feet, feeding picky eaters, feeding non-picky eaters, doing laundry, keeping siblings from killing each other (yeah, did you know that kids are kids and they'll totally snag toys from each other, regardless of how disabled either one is?  And that this, without fail, causes World War III levels of fighting between said children?).

Most days, I'm strong and I can take whatever life (or my children) decides to fling my direction.  But sometimes, there are just a few too many things going on.  One too many insurance claim denials or foods that tickle the tongue just right or loads of laundry or can't-possibly-live-without-it toys.  Or maybe it's the thought of spending an hour walking through the grocery store just to get a gallon of milk or getting your finger caught in the hinge of a brace.  Or the tantrums or the never-ending string of "Why?" or the fights over whether we need to watch "Frozen" for the 10th time today.  Sometimes being strong just isn't an option.

That's okay.  It's healthy, even.

Sometimes you need to just take a break.  Let someone else take care of dinner (or just let the kids eat grilled cheese for the 4th meal in a row).  Cry.  Scream.  Hide under the blankets.  Do whatever allows you to regroup and reset and try again tomorrow and, most importantly, do so without worrying about who might be watching.

As far as being inspiring goes, I see two interpretations for that.  One is me motivating you, pushing you to work harder, do better, feel better about your lot in life.

Not happening.

Did you read through the seriously edited list of stuff we juggle around here?  I am not a motivational speaker.  I'm not your life coach.  I don't have time for giving pep talks to strangers.  (Friends and family are totally different, by the way.  Pick-me-ups are always available to y'all.)

The other interpretation I have for "inspiration" is more of acceptance or peace about your situation.  We're normal, boring people.  We do ordinary things like go to the grocery store and Walmart.  It's a bit comical now because it's usually mommy and Nora with the cart in front, Addy with her crutches behind us, and daddy behind her with the wheelchair for back-up, and we go at a pretty slow pace.  If seeing that everybody has a different "normal" helps you accept and love your normal, that's great.  That makes me feel good.  However, I'm not going to feel bad that you might see the other side of normal.  The side that sometimes ugly cries because things get overwhelming.  The side that lashes out at the people at the store who just stare at my kid.

Life is good.  But life is hard, too.

So, to the Mostly Anonymous Woman On FaceBook: please, for the sake of your own sanity, don't take your own advice.  Just live.  Enjoy your son.  And don't worry about what other people think.

On repeat

Nora, inquisitive child that she is, was investigating a box of sodas last night.  It happened to be a box stacked on top of another box of sodas and, she-Hulk that she is, she pulled it down onto the floor.  Fortunately, she didn't smash her toes.  Unfortunately, she exploded one can inside the box and nearly exploded a second in the process.  During the clean-up, she decided to sing "Twinkle, Twinkle" to me.  Literally just "Twinkle, twinkle" because that's the only word she could remember.  Maybe she'll add "star" to her vocal stylings.

Favorite book

Nora, having the attention span of a toddler, can be a bit difficult to read to.  There's a lot more pointing at pictures and occasionally reading the first or last sentence on a page, and forget about looking at every page or even looking at them in order.

But there is one book that she seems to really love: "Inside, Outside, Upsidedown".  Granted, it's the board book version (and possibly rather abridged), but she sits still and actually listens to the whole thing.  This morning she grabbed the book, climbed on my lap, turned to the last page, and said "Mommy! Mommy! I town! Side!" (go find a copy and see just how close she was). It was super adorable!

All the better to stomp with my dear

Addy was asleep on the sofa this afternoon when Nora suddenly became interested in putting on sandals.  The child is normally all about being barefoot, so this should have been a tip-off that she was up to something.  As soon as she got her sandals on she started to do a very heavy-footed march around the living room, so she could try to wake Sister up from her nap.  Well-played, Nora.

"Danger" is my middle name

Nora has taken to doing things like try to stand on top of the rocking trike she got for Christmas, while shouting "Look-a me!  Look-a me!"  Between them, I think our children are hoping we'll be on a first name basis with every physician at the local Children's ER.

In cuter news, Nora does a pretty good job of parroting both letters and numbers, getting a few in the right order all on her own.

Addy's latest goings on include settling in to a summer routine, which, for some reason it doesn't include sleeping in.  Lots of walking, lots of "Frozen," lots of plans for going to the beach.

"I plead the 5th"

Scene: In the car on the way home from school.

Miss C: How was school Addy?

Addy: It was good!

Miss C: How did you do with your lunch?  Did you eat all of your sandwich?  

Addy: Uhm... I think it would be better if you check my lunchbox when we get home.  

Perspective

Addy has been all about walking lately.  Walking around the house, walking to the car, while we're at church or shopping or grabbing a bite to eat, etc.  Last week was no exception.  We had gone out for dinner and she was quite determined to walk out to the car, then at the restaurant, back to the car, and from the car to the house when we got home.  We were, as you can imagine, happy to indulge her request.

We were walking (very slowly) back to the house after we got home from our adventure last week, Addy with her bright pink crutches and crazy bright knee splint, when a neighbor we've never met before walked past with his dog.  (We were walking right by the house, he was about 20 feet away near the street.)  He sees the situation and calls out to us "Well, that doesn't look very fun!" and keeps on walking.

First off, that's kind of an awkward first (and only) comment to make to a stranger and not a very friendly first impression to make to a neighbor.  If you're going to be an anonymous neighbor, at least be silent and anonymous.  Second off, she's smiling and has hot pink crutches.  Think for 2 seconds about the situation and I'm pretty sure you'll realize that she thinks she's having fun and this isn't just some temporary thing like a broken leg.  Third, even if she had broken her leg, which is about the only thing I can think of for him to assume, don't try to discourage her by telling her she isn't having fun.  Pardon my French, mais cela ne fait que vous regardez comme un âne.

What I wanted to retort back was a rather expletive-filled rant, blaming him and his ignorant attitude for the poor treatment of disabled people by our society and holding him personally responsible for perpetuating the situation.  The kind of thing that would put him to shame and make him beg for Addy's forgiveness and lead him to become a vocal advocate for disabled people everywhere.  Alas, I was unprepared to deliver such a tongue lashing.  Instead I turned to Addy and said, "What do you think?  Are you having fun?"  She looked up at me and grinned. "Of course I am!  I love walking!"

Quotable kid

[Scene: the breakfast table at the end of a long week that was short on sleep]

Addy: Mama, how are you feeling today?

Mama: I'm doing pretty good today, Sweetie.

Addy: I'm so glad.  I wanted to make sure you were having a good day today.

[Scene: the parking lot of WalMart]

Daddy: When you get tired from walking in the store, would you rather have your wheelchair or would you rather ride in a cart?

Addy: Uh, I'm not gonna get tired.

[Scene: the dinner table, after dinner]

Addy: I'm done with dinner.  Can we play?

Mama: I suppose we could play for a little bit.  What do you want to play?

Addy: How about Bear Toss?

Mama: Bear Toss?  How do you play that?

Addy: Well, first you get a bear.  Then you throw it.  That's what "toss" means.

Efficiency

Nora's latest trick is that when she wants to throw a fit, but doesn't want to put all the effort into actually getting upset and making tears, she will whine about whatever is upsetting her, point at her eyes, and say, "Eyes cryin'!"  Kind of a "Just use your imagination and pretend like I'm truly upset.  You can picture it, right?"

Being Exceptional

Addy has been all about the forearm crutches for walking lately--yay! This evening was no exception. What was exceptional was that she did her walking with less bracing that usual. She usually wears her tall braces, but they stay at school during the week (it's easier, trust me). She used her short braces plus a knee splint and did awesome!

One down

Addy had PT at school yesterday and practiced walking using just one of her forearm crutches--she did great!  The only down side is that she was very nervous about it and kept talking about how she was sure that she needed to use 2 crutches next time, and made sure to ask if we would still be proud of her if she used 2 crutches instead of 1 (that part broke my heart just a little).  She's been wanting to have a basket for her crutches so she can tote things around with her like she does with the walker.  If we can get her more comfortable with using just 1 crutch, then she'll have a hand free to carry things.

I want it

Nora has gotten into an interesting habit lately.  If she sees someone using something that she wants, she often says "Share?  Please?"  She doesn't usually wait for an answer--just goes ahead and takes it--but at least she's sounding polite first!

Same stage, different result

When Addy was first talking, she referred to all dolls/princesses as "Rella," which was short for "Cinderella."  Nora does the same kind of generalization, only she calls everything "Arie," for "Ariel."

Have Go Sticks, can go

Addy has been all about the walking lately.  Walking at home, walking at school, walking at church, and even walking at the store.  It's a slow process and not much shopping happens, but it's good exercise for all of us.  Thankfully the weather has been nicer lately so it's been possible to get the tall braces on and off at the van.  There might not be quite as much walking if it were super cold or rainy.

Easter dress progress

Each of the girls has most-of-an-Easter-dress so far.  They still need buttons, hems, and bows, plus Addy's needs a hook & eye.  But it's progress!

Reading every last word on the page

Addy was "reading" a note she found on the table today.  She traced her finger along the page horizontally and said, "'Addy has Spina ... (tracing along about 3 more lines, not saying anything) ... Bifida.'  And that's all this says."

Shhhh, I'm hunting cwaft pwojects

Because I can't just have 1 (or 2 or 3) craft projects going at once, I'm pondering/planning out a "quiet book" for the girls (a fabric activity book, often having the hidden bonus of fine motor practice, intended to keep children very quiet).  I'm thinking something along a super hero princess theme, but it's still very early in the process.  Besides having the fine motor stuff (lacing, zippers, buttons, etc), this has the potential for me to finally try out my embroidery machine.  (Amazon had a ridiculously good sale on sewing machines.  I gave myself an over-due birthday present.)

Besides the 2 Easter dresses (with matching purses), and quiet book, I also need to make ... I'm sure there's an official name for it, but a pouch/bag/quiver for Addy's forearm crutches to hang on the back of her wheelchair.

More PT progress

The teacher who brought Addy out to the car after school today said that she had walked about 40-50 feet today using her forearm crutches, and she was pretty fast with it, too!  That's follow-up to Monday's report that Addy got to practice climbing on the rock wall on the playground (funny kid!). She's had the walker for just under a year, the canes for about 6 months, and the crutches for a little over 2 months.  So excited to see what she'll be doing this summer!

Vocabulary

We have so far identified the following words in Nora's vocabulary:

Awowa (another/more, usually specifically a Ritz cracker)

Mama, Dada, A-Deee (Addy), May-ee (Merry/cat)

Show (TV show/movie)

Eye, ear, nose, mouth, foot, toes, head/bonk, hair, cheek, chin (all of which she will also try to forcibly remove)

Go, play, away

Up, Down

Door

Shoe, hat, coat, pants

Cat, meow, Dog, woof, Duck, qack (no "u")

Pretty

Hug, kiss

Cup

Joo (juice)

Appa (apple)

Book

Baby

Potty

Easter dresses (2014)

Addy declared that "we" (a.k.a., I) would be making her and Nora Easter dresses this year.  They are to be purple with matching purses, and Addy's needs a bow.  And I should make sure to buy enough fabric so that Daddy and I could have a matching dress and purse.  (Where does she come up with this stuff??). 

Progress so far is that fabric is purchased.  I found a cute springy print in white/purple for Addy and green/white for Nora.  And I found a blog with a bunch of dress tutorials and let Addy pick her favorite.  So far, Addy has the front half of a dress, but no bow yet, and Nora has 2 yards of green/white fabric.

A quick study

Addy has made a TON of progress with using her "go sticks" lately.  We've had them at home since about New Year's, and she's been taking them to school for her PT to work with her on them for the past week and a half or so.  Over the weekend she walked independently with them--woot!  She needs a spotter behind her (just in case), but she walked about 6-8 feet all by herself with her crutches several times.  Way to go, Addy!  (Yes, I have video.  No, I can't get it to upload right now.)

Patch not available

I'm having a love/hate relationship with the tall braces right now.  Overall, I love them.  They help Addy walk, stand, play, keep up with her peers, etc.  But the hip hinge has eaten not 1 but 2 pairs of her pants!  Hopefully a quick visit to the orthotist's office will take care of things.

I survived Dr. Seuss week at my kid's school and all I got was...

In honor of Dr. Seuss' birthday on Sunday, this week was "Dr. Seuss Week" at Addy's school.  A whole WEEK of special dress-up days.  Yay.

Monday was "comfy, cozy, lazy day," where the kids were supposed to wear sweats to school.  Tuesday was "red shirt and blue jeans day" in honor of "One Fish, Two Fish, Red Fish, Blue Fish."  A whole school full of kids in red shirts--it was a Star Trek fan's worst nightmare.  Wednesday was "tip your hat to reading day," where (for a $1 donation to the library) kids could wear a hat to school.

Thursday was "dress like your destination day."  My kid talks about going to 2 places that have distinctive appearal: the beach and outer space, and since I wasn't sending her to school in a bathing suit when it's 40 degrees out, we got to make an astronaut costume.  (White pants, white T-shirt, and a couple of astronaut mission patches from the gift shop at the Space and Rocket Center.  There was a tutu, too, but that was left at home due to too much glitter.)

Then there was Friday.  Friday was "dress like your favorite challenging and innovative (but teacher pre-approved) vocabulary word day."  I get it.  The school is pre-k through 6th grade, so things have to appeal to a wide age range.  But I really think this was a bit extreme for my 3-year old.  Thanks to the crowd sourcing awesomeness of FaceBook, Addy picked the word "constellation."

So, after a trip to WalMart to buy yoga pants, a red shirt, a white shirt, white pants, a black shirt, and star buttons, not to mention the trip to the gift shop at the space museum (which, for the record, we were already planning to go to last weekend, regardless of the school costume situation), we were set.

Yay.

Going going going

We got a note home today from Addy's PT at school talking about her walking progress--woot!  We started sending her forearm crutches with her to school last week and the PT said she has gone from needing moderate assist (hands-on support) to minimal assist in about a week.  Addy said she walked all the way from her classroom to the library!

Language is such a funny thing

In her attempts to communicate using language, Nora has taken to adding syllables to words to emphasize their importance.  "Awowa" is "more."  "Awowowa" is "more now."  "Awowowowowowa" is "IF I EVER GET OUT OF THIS BLASTED HIGHCHAIR I WILL EAT THAT CRACKER AND THEN CAUSE YOU MUCH BODILY HARM FOR DELAYING GETTING ME MY CRACKER!"  Message received.

Wrooby-wroo!

Nora is starting to talk, though it's often difficult to decipher the jibber jabber from the meaningful language.  Her biggest word so far is "another," which she pronounces in more of a Scooby Doo kind of way: "awowa."  For some reason "more" just doesn't appeal to her.

MRI results

We finally got the MRI results from the neurosurgeon last week on Wednesday afternoon.  Everyone in the imaging area had said we should have them by Monday, the SB clinic coordinator said definitely Tuesday, but there we were on Wednesday, finally with the phone call from the doctor.  Not real happy about that.  The results themselves were mostly as I expected.  Spinal cord is tethered--that's the nature of a repaired myelomeningocele lesion.  The real unknown was whether surgery is needed.  At this time, for this patient, with this surgeon, the answer is "no, not recommending surgery at this time."  His opinion is that detethering surgery should be a last-resort option, considered only when symptoms are not able to be managed by other (less risky) methods.  My non-medical opinion is to agree with the surgeon, though I can't help feeling like we're being reactive instead of proactive in this situation, since we're addressing symptoms instead of causes.  The problem lies in the fact that treating the "cause" tends to make things worse. But at least we aren't facing major spine surgery right now.  That's definitely a huge relief!

Working on being patient

Patience is something I'm not always very good at, but I find myself needing to be patient (or at least distracted) for a few days while we wait for MRI results.  We found out in December that Addy's bladder function has changed quite a bit, which can indicate that her spinal cord has become tethered.  To start answering that question, she had an MRI of her whole spine on Thursday.  And now we wait to see what the radiologist and neurosurgeon think is going on and, more importantly, what to do about it.

Ring ring

Nora has officially reached the "anything can be a pretend phone" stage.  Toy wrench, paper doll outfit, ANYthing can be a phone!

Practing for perfection

Practicing "Ready Steady" with her left leg unlocked on her braces--woot!

After that, it was time to lock her left knee to keep her more stable so she could practice with her crutches!

Getting bigger

Addy got casts made for a new pair of AFOs.  She picked out a star print.  Should be awesome!  She also had an adjustment on her tall braces; 1/2 inch taller now.