Wednesday, December 25, 2013

Merry Christmas Craft Time

My little craft-crazy preschooler wanted to do a Christmas Eve craft last night before dinner, so we did the "Grow Borax crystals on a snowflake-shaped pipe cleaner."  I'm pretty pleased with the results:

Jealous?  Here are the instructions.  Dissolve borax in hot water in a wide-mouth container.  Recipes I've seen on The Internet said about 3 tablespoons of Borax per cup of water, but we had trouble getting nearly that concentration.  You can dye the solution if you want colored crystals, or you can use a colored pipe cleaner, which is what we did.  We used a single pipe cleaner, cut into thirds, and twisted to the shape of approximately a snowflake, but really any shape will do as long as it can be totally submerged in your saturated borax solution.  We used a piece of thread and a popsicle stick to suspend the snowflake in the liquid and waited over night (about 16 hours).  Voilá!

Some brief research says that, while light exposure shouldn't burn your skin, you probably want to wash your hands thoroughly after you touch borax, including the crystals on your final snowflake.  Interesting, considering this project is touted as safe for kids.  I guess "well-supervised kids" are technically still kids...

Sunday, December 22, 2013

Have yourself a Merry Christmas parade down Memory Ln

Last night the local ABC affiliate decided to broadcast a local Christmas parade.  The guide info said it was from 2004 (no, not a type-o) and the broadcast was scheduled for 2 hours.  I watched about 5 minutes of it, dumbfounded, and I believe I identified the reason (other than commercials) for why it took 2 hours.  All of the floats in the parade were boats and apparently anyone with a boat was welcome to be in the parade.  I still have no explanation for why a local Christmas parade was A) televised in the first place; we don't live someplace like NYC or Miami or LA where they have cool parades that other people might want to see.  What we have is an over-abundance of boat owners. And B) why said parade was rebroadcast nine years later.  Craziness!

Friday, December 20, 2013

Not part of the original story

Our church Christmas pageant was last weekend.  Nora decided to go for an alternate interpretation of the story.  She was a shepherd (1 of 2; there was also 1 shepherd herder and 2 shepherd herder herders).  Nora felt that her first task as shepherd was to collect (some might call it "stealing") as many stuffed sheep as she could.  That kept her entertained long enough for all 3 (kind of 4) angels to appear and direct the shepherd/herder/herders to where they might find the baby Jesus in the manger. Nora toddled over to the manger, looked down at her sheep, up at the baby Jesus, down at the sheep, up at the baby Jesus, dropped the sheep, and tried to take off running with the baby Jesus.  It was quite entertaining!

Thursday, December 19, 2013

Waiting and seeing

We had Spina Bifida clinic last week and got some expected, but not fantastic news, that Addy has some early symptoms of tethered spinal cord.  Spina Bifida is a condition (disease? I'm not looking to make this a semantics issue.) that hits several medical specialties, which is part of why specialty clinics are so important.  Because the early symptoms of tethered spinal cord (neurosurgeon) are changes in bladder (urologist), bowel (urologist or gastroenterologist), or gross motor function/mobility (orthopedic surgeon), it is critical that your doctors can and do talk to each other.  Seeing them all on the same day, at a facility where they all have access to all lab reports, diagnostic tests, etc. that have been performed at that facility is a time and sanity saver.

So we waiting for a chance to see an MRI of the spine to be able to visualize the extent of the tethering that is going on (most, if not all, people with myelomeningocele *look* tethered on an MRI, so most neurosurgeons act based on the severity of symptoms).

In the mean time, we also had a swallow study done today to try to figure out what has been going on with eating.  The good news is that it seems to be just texture issues (still) and a wicked case of acid reflux.  So our next step is to resume feeding therapy and try to figure out what is causing the reflux.

The up side of having tests at the children's hospital the week before Christmas is the fabulous holiday activities they have!  There was live Christmas music near the food court today, so we stopped to dance for a little bit before heading back to the car.

Wednesday, December 4, 2013

On the first day of Christmas

I just can't bring myself to participate in "Elf on the Shelf" and I got too side-tracked to do a proper Advent calendar this year (again), but I still want to start some fun holiday traditions.  We're going to try doing 12 days of family activities leading up to Christmas this year.  Here's our list (order still to be determined):
1.  Find an "angel tree" and play Santa to someone else
2.  Read Christmas stories (titles yet to be determined)
3.  Make handprint ornaments out of salt dough
4.  Decorate handprint ornament (No, it's not cheating!  The dough has to bake and cool before you can paint it.  It really will take 2 nights.)
5.  Make cookies or Chex mix
6.  Watch a Christmas movie
7.  Drive around and check out Christmas lights
8.  Get out our Nativity set
9.  Sing Christmas songs
10.  Make Hot Cocoa
11.  Color Christmas pictures
12.  Put together a Christmas puzzle

And as long as we're on the topic of Christmas, I saw a suggestion I actually like from the deepest, darkest, most evilest, time-suckingest part of The Internet: Pinterest.  It's a fill-in-the-blank Christmas list idea.  You give your kid 4 lines to fill in.  1) I would like ___. 2) I need ___. 3) I would wear ___. 4) I would read ___.  Short, sweet, and not too gluttonous.  Hopefully we can pull it off.

Monday, December 2, 2013

Dear Other Parent Shopping At Target Yesterday

You were about 20 feet away from us, but I heard your little boy ask you a question yesterday.  I'm sure you were uncomfortable--he was loud and his question probably felt kind of rude.  But over the noise of the Sunday-after-Thanksgiving shoppers, over the beeping of the barcode reader at the check-out line, and over the sound of my own kid's voice I heard your inquisitive child ask you "Why is she doing that?"

I secretly hoped he was talking about someone else, but since he was looking in our direction and pointing at my daughter, there is little doubt that he wanted to know why my 3 year old was using a wheelchair.  I didn't hear your answer, but I did hear your son's follow-up question: "You mean she can't walk at all?"

Get ready for a constructive criticism sandwich.

Bravo to you for patterning more polite behavior by using an indoor voice when responding to your child's question.  It isn't rude to have questions.  Certainly there are rude ways to ask them, but your son is young and curious.  Please don't be embarrassed.

Don't ever assume what my child can and can't do.  And don't you dare tell my child--or allow your child to tell mine--what she can't do.  It just so happens that she can walk.  She works hard--REALLY hard--at walking.  She needs the help of a walker and leg braces to do it, but she *can* walk.  It is, however, tiring and not practical most days for her to walk while shopping, which is why she uses her wheelchair.  Don't think for a second that she can't walk.  And I'll thank you to make sure your son does likewise.

Finally, thank you for answering your child's question.  Kids are curious.  They ask questions.  There's nothing wrong with that.  Answering his question means he's more likely to be accepting of different kids at school or our shopping or at the park.  And just for the record, yesterday was pretty hectic, but on most days it would be okay to ask me and my daughter about her wheelchair.  I'd much rather have you know the facts than make up some wild story about how she can't walk.

Sunday, December 1, 2013


Addy's thankful list:

A warm house
Mommy and Daddy

Monday, November 18, 2013

Hit the ground running

First day of big kid school for Addy today, and what a full day it was.  She used her walker for part of the day and her canes once, experienced her first ever fire drill (during nap time!), and even has homework.

Saturday, November 9, 2013


I needed to take Addy on a quick shopping trip to Walmart in search of some disappointingly elusive dinosaur stickers for a birthday present.  A bit of a shop-a-holic, Addy was eager to go along this morning.  Before we left I asked her if she wanted to use her wheelchair or ride in the cart when we got there.  "Actually, I would like to use my walker at Walmart." "Are you sure?  We could bring your wheelchair and you could use that at the store."  "Or I could use my walker."

Oh boy.

With few exceptions, Addy doesn't use her walker when we go out.  She just isn't quite fast enough in it to be safe while walking in a parking lot (never mind how long the actual shopping would take).  That's easy enough: just carry her and the walker from the car to the store, then set her up inside and go.  The shopping is still kind of a molasses pace, but that's not the end of the world.  The other issue is that she must wear her KAFOs when walking and the logistics of that is tricky because she can't ride in her carseat in the tall braces so we have to put them on at our destination and then remove them before departing.  

One option is to sit in the back of the van and get the braces on (not always fun if the weather is yucky) and then carry her with her braces on (kind of awkward because the braces don't let you hold her comfortably) plus carry the walker across the parking lot and into the store. Another option is to tote kiddo + braces + shoes + walker separately into the store (possibly using a shopping cart) and then find someplace to put on braces (probably the restroom, but even that doesn't sound super fun).  

We went for option 1 this morning (put on braces in the van).  I carried her, with the walker slung over my shoulder, from our mercifully close handicapped parking spot and into the store.  We got from the front door to the main aisle in front of the registers when Addy looked up at me and said, "Where's my wheelchair?  I'm tired."  Which brings me to the third prong that has to be balanced when using the walker in a store: what to do when she gets tired?  

We could have brought the wheelchair with us (I didn't, but I could have).  Or I could carry her and the walker (or not)  Or we could find a cart (which we did, but I made her walk across to the other entrance to get it.  She made me stop at every impulse bin along the way to check out what all they had.  Tuché, Addy.)  Either way, there are still braces that aren't totally compatible with sitting plus a walker to deal with.  (Addy's short braces sometimes catch on the edge of the buggy seat when we try to pull her out, so tall braces are even more fun to get shimmied back out when you're done.)  I opted for crossing my fingers and leaving the KAFOs on and folding up the walker and putting it in the cart.

Then we could finally start looking for what we came for.

45 minutes after arriving, we found ourselves unsuccessful in our mission to find dinosaur stickers. We purchased Superman and alien stickers instead.

Now to get back to the car.

It was a bit chilly out this morning, so I chose to extract my bionic preschooler from the cart while we were still inside the store, which meant I needed to carry her (braces on) plus the walker plus the disappointingly non-Dino-riffic stickers and still be able to get my keys out to unlock the van.  Perhaps I could have removed the braces in the store (they come off more easily than they go on), then put her back in the buggy seat, and used the cart to tote everything to the van, but I didn't.

And that is why, when my kiddo asked me this morning if she could walk at the store, I tried to talk her out of it.  But it's also why I went ahead and did it.  It won't get easier if we don't keep trying.  Eventually we'll find a rhythm to everything.  It may not ever really be "normal," but it should become a routine.

PS, we ended up finding dinosaur stickers at Dollar Tree.

A real 21st century kid

Nora's top 3 favorite things to play with are:
* Your cell phone
* Whatever toy Big Sister is playing with
* The TiVo remote

We tried giving her a different remote with no batteries in it.  She wasn't fooled.  The TiVo remote lights up and the TV does stuff when she pushes the buttons. She's been having a blast this morning, changing channels, viewing the record history, filtering the guide data, putting the morning news on slow-mo, etc.

Friday, November 8, 2013

Dream home 2013

"Mama, let's draw a picture together."

"Okay.  What did you have in mind?"

"Let's draw a picture of the castle I want to live in."

"Okay.  How about like this.  It could have some towers, and a big wooden door, and windows.  How about a princess in this window?"

"Yeah, that looks good."

"Do we need a dragon in this other window?"

"Yeah, I guess so."

"Maybe he can breathe fire.  Here, you take a turn.  How about if you add some clouds in the sky."


Thursday, November 7, 2013

Baby steps, big and small

Addy had a busy morning of meeting her new classmates at school.  She (and Daddy and I) joined the class for their morning activities.  During their circle time, she got to participate in The Welcome Song.  When Addy's name card came up, her teacher suggested that she could pick one of her new friends to help her out today and put her name card on the attendance board.  So Addy turned to the girl next to her and said, "Excuse me, Sarah.  Would you mind helping me out with putting my name card on the board please?"  I thought the teacher's jaw was going to drop through the floor.

At the end of circle time, we read a book about garbage trucks and then got to make a garbage truck picture out of construction paper (Addy loves crafts and glue and trucks, so she was on Cloud 9 about the whole experience.)  We went to the gym for a few minutes after craft/play time, and then headed home to meet with her PT.  Bear in mind that she walked around--from the school office to the classroom, around in class during play time, from the classroom to the gym, running around in the gym, then from the gym back to the classroom--ALL morning.  When we got to the classroom as we were leaving, she looked up at her daddy and said, "Daddy, could you please carry me?  My legs are tired."  Again, I thought the teacher's jaw might hit the floor.

At home, we met up with her PT for the very last EI therapy session--mixed emotions there.  Early Intervention only covers until age 3, at which point the public school system takes over (if you qualify).  I'm very sad about wrapping up this particular PT format, but very excited by all the progress Addy has made in her almost 3 years and also excited about the transition with school.  Today was definitely an end-on-a-high-note therapy session.  Addy did lots and lots of independent standing (a.k.a., "ready steadies") and even took a single step without holding on to anything three different times.  Three!  And all by herself!  She was completely distracted, playing with a toy or looking at a book each time, but I say it still counts.  And that was all AFTER she spent 2 hours at school, walking, running, chasing, and meeting new friends.  So excited that PT got to see it.

So all of that is Addy's big steps.  Nora is also starting to toddle around now.  Also very exciting and terrifying, and a cause for celebration!

Wednesday, November 6, 2013

School daze

Addy gets to start Pre-K right after her birthday.  Yay!  Also: say what??  It's been the longest and shortest 3 years ever.  To get ready for the big day, we had to go shopping for school supplies.  We got most of the things from our list, but still have a couple of outstanding items (like a lunch box, which was not actually on the supply list from the teacher).

Thursday, October 31, 2013


Addy had Trick-or-Treating at preschool this week.  She wore her Batman dress, pink mask, and gold crown and went as Princess Batgirl.

Today being actual Halloween, we went ahead and dressed up for a little while, even though we didn't go out (all 4 of us are doing battle against The Sinus Infection From Hell, plus Nora has an ear infection).  Addy was quite certain that she needed both the crown and the mask to go with her princess dress.

I think Super Princess and her pet dragon are quite adorable.

Tuesday, October 29, 2013

Nora's Baptism

I finished up most of Nora's baptism dress a couple of weeks ago, and put the finishing touches (bloomers and sewing on one last button) on Saturday evening.

We had lots of family in town to help us celebrate.  A fun visit for a beautiful day!

Thursday, October 24, 2013

Happy birthday

Someone is a whole year old now!

Life's too short not to eat cake first on your birthday, so that's what we did.

Then we had a decision to make: bath first or real food?  We picked real food on the assumption that she couldn't get any dirtier than she already was.  We were wrong.  In between bites of chicken nuggets (which were really almost molé chicken if you think about it), she brought her foot up and smeared crumbs and frosting in between her toes.  Well played, Nora.  And happy first birthday.

Monday, October 21, 2013

1-2-3 Go!

Fifth tooth and first independent steps: it's been a full day for Nora!

Thursday, October 3, 2013

Look who's standing now

Nora has declared herself to be so big.  No more baby food for her.  Chicken nuggets for dinner and juice in a straw cup thank you very much!  And the standing--so much standing!

Tuesday, October 1, 2013

October is more than just pink

It's Spina Bifida Awareness Month--yay!

Spina Bifida is a neural tube defect that happens during the first month after conception.  There are several forms with big, scary sounding names that describe the defect, but they don't really tell us non-doctors a whole lot. The main things to know are:
* The exact cause(s) are not known.  Quite a few correlations have been identified, and there seem to be both environmental and genetic factors involved.  But the details are still being studied.  I read about some research that indicates that the diet your grandparents ate can impact your odds of having a child with SB.
* Experts talk about folic acid being able to reduce the risk of having a baby with a neural tube defect.  It does, by about 70% according to some research, but it doesn't eliminate the risk entirely.  Some women aren't able to metabolize it efficiently and there are medications that seem to interfere with the metabolism of folic acid.  That said, FA is easy to add to your diet.  If you're female and of child-bearing age, get at least 0.4mg (that's 400 micrograms) daily.  Ten times that if you have a family history of neural tube defects.
* Every person with Spina Bifida is just that: a person.  They do things differently than able-bodied people sometimes, but they really are just people.  Like able-bodied people, everyone with SB is different.  Even people with the exact same lesion level may have different challenges.
* There is no cure.  There are surgeries (a LOT of surgeries), hours of therapy, doctor visit after doctor visit after doctor visit, tests, evaluations, meetings, medications, procedures, equipment, braces, skills, plans, etc that help a person to be productive in spite of their disability, but none of it cures the nerve damage that happened due to the original lesion or continues to happen due to tethering of the spinal cord.  Maybe that will change in the future with stem cell therapies and other medical advancements, but right now, there is no cure.
* Like most disabilities, Spina Bifida is not contagious.  It's not "cooties" and your kid won't suddenly stop being able to walk just because my kid uses a wheelchair and they're in class together.  (Important side note: Even if your kid did need to start using a wheelchair, they would be no less awesome than they were before.)
* Finally, SB is the most common permanently disabling birth defect in the US.  It affects a growing community of some 166,000 people in the US and you're likely to come across some of them at church, at school, or even at the grocery store.  So be aware!

Monday, September 23, 2013

Tryke Day

Yesterday was Tryke Day for us.  Addy was soooo excited about her new wheels!

We did a ten-parking-space loop in the parking lot at least 5 times before dinner, then she rode the whole way from the AMBUCS trailer to our car, then she had to do another quick ride when we got home before she went in the house.

Saturday, September 21, 2013

Just around the corner

Halloween is coming!  I made fantastic progress on Addy's princess costume (still needs a zipper and a hem, but it's otherwise done as far as I'm concerned).

It's McCall's pattern 6141 in a girls size 3/4.  Or at least, that's the pattern I started with.  Bodice was crazy (and too big) so I redrafted the front as a single piece and modified the back to be a bit smaller.  The yardage was off by a lot, too, so the skirt isn't quite as wide at the bottom as originally designed.  Overall, though, I was able to alter/draft, pin, cut, and sew the whole thing (less the hem and zipper) in less than 12 hours.  Not bad.  And Addy seems pretty pleased with the outcome, too!

Nora's dragon costume is waiting on the arrival of the awesome lizard fabric I ordered yesterday.  I'm planning on a hoodie dress with spikes down the back and wings between the sleeves and the body.  Should be fabulous!

Friday, September 20, 2013

These canes were made for walking

Addy walked about 10 feet across the living room this morning using her canes, almost all by herself! Miss C hovered nearby in case Addy lost her balance and had to remind her not to get ahead of her canes a few times. Other than that, she placed her canes and took her steps all by herself. Yay!

Come on weather forecast

Saturday's forecast just gets more miserable looking every time I check, but so far Sunday is looking to be a decent day weather-wise.  I'm hoping that holds true because we're supposed to pick up Addy's AmTryke on Sunday!

Sunday, September 15, 2013

Raising awareness

It's September, which means that it's Hydrocephalus and Chiari Malformation Awareness month (it's also several other awarenesses' month, but hydro and Chiari are what hit home for our family).  So consider yourself aware and check out some info if you would like to  (Chiari info and Hydrocephalus info)

No, I didn't forget to make you aware of Spina Bifida.  SB awareness is next month!

Friday, September 13, 2013

We've got 3; do I hear 4?

Nora has been making a sound like grinding teeth today, which seemed weird since she only has the 2 bottom teeth.  It turns out that isn't the case any more.  The top left tooth has just barely popped through.

Tuesday, September 10, 2013


I took Addy's canes to the mobility vendor's office today to see if they could get them straightened out--success!  One of the canes had a slight bend in the handle piece, which was preventing it from sliding over the post on the base correctly.  A pipe cutter remedied the situation.  And some Hello Kitty Duck Tape transformed the canes into quite the fashion accessory!

Thursday, September 5, 2013


We have canes!  

They're the aluminum canes that Addy had tried out several weeks ago at the therapy center.  They still need a small height adjustment, but we have canes!  

Right now it's a two-person job to help Addy use them--one in front to help with cane placement and one behind to help with balance.  The biggest problem is that she's used to being super speedy in her walker and now we're having to slow down again and really think about each step.  I figure in a month or so she'll be pretty independent with the canes.

Monday, September 2, 2013

Comedy gold

After I told the banana/orange knock-knock joke to Addy tonight, she decided to try her hand at making up a joke.

Addy: Knock knock.

Mama: Who's there?

Addy: Apple.

Mama: Apple who?

Addy:  I don't know.  Can you tell me?

Thursday, August 29, 2013

Cooking school

Addy insisted on helping me cook her grilled cheese sandwich for dinner tonight, so I had her unwrap the cheese and put it on the bread for me. I only had to remind her once to not just EAT the cheese.

Wednesday, August 28, 2013

A picture is worth 1000 words

Here's the picture:

I call it "Territory Dispute".  Some things to note:
* Addy's location
* The location of her walker.  Don't see it? The silver and blue thing in the lower left corner (right next to the Pack 'n Play) is the right handle of the walker.
* Nora's location

Now for a bit of back story: This was the second, distinct incident within a 5 minute time span in which Addy decided to walk to the PnP with Nora already in it; cruise around said PnP; and Nora stood up, reached over, and tugged on Addy.  This is sadly normal on all levels.  We've progressed to cruising between furniture items as well as progressing to doing this close enough to Sister that she'll probably try to annoy the tar out of you.  Yay.

All in one, convenient spot

A friend was asking what all we've done therapy-wise with Addy to work on walking, so I thought I would try to re-cap and put it all in one post. I'm not a therapist of any kind, so please don't take this as professional advice. But if you're looking for some new ideas for what to ask your PT about, here are some activities and equipment we've used (and a few that we didn't actually get around to trying).

First and foremost, my biggest piece of advice is do not take "your child might not be able to..." as an excuse not to try something. It may sound like a glass-half-full-vs-half-empty thing, but "might not" also means "might." You just don't know what your kid can or can't do, so, as long as it's not actually dangerous, let them try! See what they can do and then adapt the activity as needed. Your child will always surprise you.

Bracing and therapeutic garments
Mermaid pants: You can buy these pre-made, but I made a pair myself out of some lycra fabric (sew it into a tube and stitch through the middle at one end to make leg tubes). The point was to help keep the hips and knees in alignment as she was learning to crawl. They really helped with getting into a true hands-and-knees crawl stance, though she obviously couldn't crawl in them with her legs held together. We used them from about 6-9 months old I think.

Neoprene shorts: We really didn't use these a whole lot, but they were the recommended next step after the mermaid pants. They're made out of stiff neoprene, but have actual separate legs instead of the tube shape of the others. They were a major pain to get on her because they need to be tight-fitting, but they don't have any stretch to them at all (we had to bounce her into them, which she thought was hilarious). Because they're pretty stiff, they don't really work well for crawling, but they do offer some hip support for standing. Maybe if we had used them more often, they would have broken in and been softer for crawling.
All by myself!

AFOs (Ankle Foot Orthotics): Addy got her first pair right after she got her stander and she's outgrown them about every 8-9 months or so (she's on her 3rd pair right now). The 2nd and 3rd ones were fabricated by an off-site vendor that is very popular with some people and not at all popular with us. I plan to really push for ones that are made in-house by our orthotist (or at least by a different off-site vendor) this fall.
Addy's AFOs (side view) New AFOs (side) AFOs v2.4 New AFOs

Therapy Suiting: This was recommended as a next step after the neoprene shorts, but we didn't end up pursuing it. It's a body suit with special straps that help to position and/or support the patient. The brand that was recommended is quite expensive and comes with a high frustration quotient. It's intended to be worn under clothing (and diapers), which may or may not be ideal for all patients.

Knee Immobilizers: We used these a lot this spring to help keep Addy's legs stretched out after her surgery and to help get her standing before the KAFOs were fabricated. We also used them for when she wanted to walk out in the community until we noticed that she was developing tibial torsion; she almost exclusively uses the KAFOs for walking now.
Walking back to the car from dinner

KAFOs (Knee Ankle Foot Orthotics): She got her first pair this spring, following the dual tendon releases. To me Addy's look like HKAFOs (Hip Knee Ankle Foot Orthotics), but I know the Rx we got said KAFOs with drop lock hinges and a belt. We use these all the time now (as in, most days Addy is in her Ks more than her AFOs). They aren't super convenient for walking when we're out and about--she really needs to lay down to get them on correctly and it just takes a few minutes to get all of the straps done up and shoes back on, which is why the knee immobilizers were so great--but they do such a good job of supporting her and keeping her legs aligned correctly. The knee joints on hers have what's called a drop lock; it's a little metal piece that can float down to lock the hinge in place. The hip joints are just hinged with no locks to them. We usually leave the left knee locked, but use a piece of tape to hold the right side in an unlocked position (Addy's left leg is much weaker than the right, so she needs extra support on that side).
KAFO (side view)

Exercise ball: Addy still loves to sit and bounce/rock on her gigantic yoga ball. If you look carefully, you can find ones that are latex-free, but you do have to look. It builds core strength and provides good vestibular input. You can also use it for standing and weight bearing by laying over the ball on your stomach and slowly rock the ball back until your feet touch the floor.

Mobile Stander: Addy got hers when she was about 11 months old--around the time able-bodied kids start pulling up to stand. Hers had big wheelchair-style wheels to it, so she could propel herself around the house (which she learned to do with amazing precision!). Standing is just such a "normal" activity and it does great things for the vestibular system, helps to stimulate bone growth, and having kids at eye-level with their peers is fantastic for their social and verbal development. So much good stuff comes from standing! We attached a standard-issue bike basket to the front of the stander so that Addy could tote toys, books, etc around with her.

Gait Trainer: We used the gait trainer for a relatively short amount of time, but I really think it was the key to getting Addy walking. The brand we had comes with all kinds of accessories and features, so it's really useful across a wide range of diagnoses/needs. It's also kind of overwhelming to try to figure out exactly which settings and accessories you need at any particular time, but it's a fantastic piece of equipment once you find that magic combination. The thing to remember is that as you make progress with strength/balance/endurance/etc, then adjust the equipment to meet the current needs.
Gait trainer
(Before surgery)

Standing 20130215
(3 weeks after surgery)

(6 weeks after surgery)

(3 months after surgery)

Walker: After we got the KAFOs, it seemed like Addy really found the bulk of the gait trainer plus Ks to be too much, so we traded in the gait trainer for a light-weight walker (not unlike the kind adults use, just sized for a smaller person). The one we use is a posterior walker--the frame comes around behind the patient--and it has wheels on all 4 feet. The front wheels can either lock straight or swivel; the back wheels can either roll forward/backward or be set to ratchet forward only. Again, the bike basket is an important feature so that Addy can go pick out a book from the book shelf and then take it to a table to read it (or walk with me to the mailbox to help pick up the mail).

I'm gonna go check the mail

Quad canes ("granny canes"): We tried these once, but Addy is too short right now for the smallest size that our therapy center had. Once she's a little taller, these will probably be the walking aid she'll use.

Parallel bars (or, as Addy calls them, "peril bars"): There are how-to tutorials you can find on the internet for making your own out of PVC or you can order a kit. We're borrowing ours from our therapy center (another family had made them for their child and donated the bars when their child no longer needed them). Ours are about 8.5 feet long, so they take up a LOT of floor space, but it's a good length for walking back-and-forth. Addy uses them at least 3-4 times a week. We decorated ours with butterflies and foam hand prints so she can give her bars high-5s as she's walking.
Parallel bars v2.0

Wheelchair: Yes, this post is mostly about how we've been working on walking but I think it's important to remember that walking is not an all-or-nothing kind of deal. I hadn't realized all of the "kidness" that Addy wasn't getting up to until we started taking her shopping in her wheels. She's able to navigate around the store herself (obviously, we keep an eye on her, but she's able to pick what aisle she wants to go down and what toy or shoes or box of cereal or what-have-you she wants to check out). Your insurance company may disagree, but working on walking does not mean you don't also need to use a wheelchair some (or even most) of the time.
Addy in her new wheels

Ups (a.k.a., sit-to-stands or squats): We used a small stepstool for a bench, parked it and Addy in front of the sofa, and put an irresistible toy just out of reach to encourage her to stand. Addy now does this at the parallel bars by standing with both hands on the same bar and doing squats.

Sofa climbing: Start by taking one or more cushions off the sofa and put them on the floor in front of the sofa. This provides (1) an intermediate step for climbing onto the sofa and (2) and soft place to land if you fall off the sofa (though a safe technique for getting down is a good thing to work on, too). After floor-to-cushion-to-sofa-frame is mastered, take away the cushion so you're going straight from the floor to the sofa frame. Finally, just climb straight from the floor to the sofa (with cushions on the seats like they're supposed to be).
Mountain climber

Marching: Either standing on the floor or sitting on a stool, get the legs moving in a marching pattern.

Godzilla attack (and variants): Either standing on the floor or sitting on a stool, stomp on or kick at something that causes a reaction (bubbles, a tower of blocks, toy bowling pin, any toy that lights up or plays a song when you hit a button, your hand--be super dramatic about it because kids love slapstick humor). Growl like Godzilla. Light-up shoes are also effective.

Booty bumps (a.k.a., bridge): Lay on the floor on your back, knees bent, feet flat on the floor. Push up with your legs/abs to raise your backside up off the ground (may need someone to help hold your feet on the floor). If you have a small toy car/truck, try to hold your backside up off the ground long enough for the car to be rolled along under the "bridge" (just be sure you don't accidentally land on the car while it's under you--ouch!).

Treadmill therapy: This was an out-patient therapy we did at our therapy center, but not all centers offer it. It's a harness system that suspends the patient over a treadmill, which allows the therapist to stay seated while helping manipulate the patient's legs in a proper gait pattern. We did 6 weekly sessions when Addy was roughly 18 months old.

Standing at a table/easel: A coffee table at the right height for standing and coloring, painting, reading, playing trains, playing play-doh, etc. A sand and water table is the same idea, though perhaps a bit more messy.

Basketball (or Snaps In The Box): Addy in the gait trainer, starting about 3-4 feet away from me, me holding a small toy for her to come get and then throw into a box (or a ball to throw through a basketball hoop). Simple, but effective.

Cruising: It's so "normal" you almost forget that it's therapeutic. Just like a toddler will cruise the furniture while they transition from standing to walking, it's good for later walkers, too.

Climbing stairs: We have a 2-story house, so every night at bedtime we climb the stairs.

Decorating the patio doors: We have patio doors from the living room out to the back yard, so I got some vinyl stick-ums for Addy to be able to decorate the windows.
Standing at the patio doors

Playhouse: Santa brought a playhouse for Christmas last year. It lived in the living room until it got warm enough to take it outside. Now that it's finally cooling off again, we're playing with it. It has two sides that swing open so you can walk (or roll!) all the way through, and there are lots of doors to walk through and shelves to be able to hold on while you stand/walk/cruise/pull up/etc.
Playing at the playhouse

Golf: Helps work on balance, confidence, something fun to do while standing (or sitting in a wheelchair, by the way).

Ready, Steady, Blast-off: I put my arms out on either side of Addy and let her steady herself. When she's ready (and I really think having her decide when she's ready is what's important with this game), she lets go and we take turns counting down from 10 with an exciting "BLAST OFF!" at the end. It's silly, but it's fun. It really got started with Addy standing at the coffee table, trying to psych herself into balancing by herself by telling herself "Ready... Steady... Ready... Steady..." as she would let go of the table briefly.

Yoga/Dancing: Addy really enjoys dancing, so I had taught her how to do "ballet" (really it's just squats with her hands held over her head). I also looked up some kid-friendly yoga poses--her favorites are the tree pose (arms up over your head and sway back and forth) and the rainbow pose (arms up over your head and lean to one side like the arc of a rainbow). Whether doing yoga or dancing, she needs help to stay balanced while standing. If we do seated poses, then obviously we could actually both do them together. Addy also really like Dora, much to my chagrin, but there are several episodes where there are little dances that she likes to do. "Little Einsteins" is another show that has some kind of simple dancing in every episode, and PBS usually has some kind of "get up and move" segment between the kids shows.

Gymnastics: We haven't tried it yet, but I have heard that gymnastics can do wonders for body-awareness, mobility, strength, etc. There is a gym in our area that I know works with special needs kids. I need to give them a call soon to see when they have classes opening up!

Look who's ready steady now

Nora did some free standing last night.  She had pulled up at the book shelf and grabbed a toy in each hand.  Just standing there, not holding onto anything.  Prayers are appreciated.

Monday, August 26, 2013

More sewing craft projects

Addy has made it a daily request that she get to work on a sewing craft project with mommy.  While we haven't managed to do one every night, we have done something several nights now.  Last night we started on a multi-night project of making her a pillowcase-style sundress.

This morning she wanted to add pockets.  And make a matching purse.  And a dress for Nora.

And speaking of Nora, I started playing around with what to do for her baptism dress.

So far, some form of beaded smocking is what I'm leaning toward, but with white beads on white fabric.  I would go ahead and make something out of the red/off-white sample, but the red paint kept rubbing off the silly beads.  Not a good quality for beads to have, especially if they're going to be used for clothing on a drooling, chewing 10 month old.

For those who don't know or don't remember, Addy's dress was made from the train from my wedding dress.  I'm planning to use some of the rest of the beads from my wedding dress for the smocking on Nora's dress.

Wednesday, August 21, 2013

Mommy gets deep again

There are 4 kinds of knowledge in the universe:
1) The things you know you know.
2) The things you know you don't know.
3) The things you don't know that you know.
4) The things you don't know that you don't know.  Sometimes these masquerade as category 2 pieces of knowledge, but it's usually the true vastness of your lack of knowledge that distinguishes this category.

Which brings me to my current, honest-to-goodness category 4, never-knew-that-I-didn't-know-it, deep thought: disability models.  I had never heard the concept of a disability model, let alone the specifics of either the medical or the social model, and I have really only started putting any effort into figuring what they are and what they mean for us as a family adapting with Spina Bifida.  And Hydrocephalus.  And Chiari Malformation.  And their secondary symptoms.

I'm over-simplifying, but here are some basic definitions I've come across. The medical model is a construct in which the disability or impairment is seen as needing medical intervention in order to bring the person to a state of "normal."  The disability must be treated/addressed because quality of life is reduced as a direct result of not being "normal."  By contrast, the social model makes a distinction between a disability and an impairment.  It says that an impairment is the physical inability to do something like walking and is caused by damage, injury, malformation of the body.  A disability, on the other hand, is a barrier created by society.  A person who uses a wheelchair isn't disabled because they have mobility impairment.  Rather, they are disabled by the lack of ramps/elevators in public places.

(There's more to both theories and I would encourage you to read up on them and form your own opinions.)

There are elements of each that seem true to me.  From the medical model, it seems obvious that when quality of life can truly be improved by medical intervention, then medical intervention should be sought out (or at least considered).  If we break a leg or get strep throat, most of us would go to the doctor and seek treatment with the goal being to return the body to a "normal" (pre-injury/illness) state.  I think the real flaw in this as a framework for treating/managing a chronic condition is in who gets to define what is an improvement in quality of life.  Ultimately I think that should be left up to the person who has the disability, though, there are situations in which that person isn't able to decide, due to age or mental impairment or what have you.  I have to admit that deciding what is/isn't in the long-term best interest of another person is one of the challenges of parenting that I dislike the most (yes, I think it applies to parenting in general, though there are more opportunities to question your motives when you are caring for someone who has a disability).  I want Addy to have the best chance at an active, independent, happy, full life and I want any procedure or therapy to lead to that goal.

On the other hand, the social model with its almost defiant "there's nothing wrong with me; I was born different but different isn't bad" attitude is somewhat refreshing.  What turns me off from it is the blame shifting that goes on.  "I, as an impaired person, don't need to adapt.  Society put up these barriers; society needs to change."  That really rubs me wrong.  It builds a lifetime of confrontation and aggression that, in my opinion, leads to wasted energy.

The social model also seems to neglect how we got to be a society of stairs and other barriers.  Society didn't decide that multi-story buildings are a good idea in order to intentionally exclude people who use wheelchairs or canes.  Stairs came into being as a way to efficiently use real estate.  I'm not saying that we shouldn't all work diligently to remove barriers like stairs and be more universally inclusive.  I'm just saying that perhaps a less angry and confrontational attitude might be called for when trying to navigate the world (which is very easy to say when you're someone who is able-bodied and hasn't faced a lifetime of stairs I couldn't climb.)

So what does this mean for us as a family that is adapting, navigating, and occasionally fumbling through life due to a disability/impairment?  An excellent question for which I don't have a complete answer.  Neither model truly fits me and my hopes for my family, but I want to draw on each to help Addy make sense of Spina Bifida.  Certainly, as she gets older and is able to participate in her medical decisions, I'm going to encourage Addy to form her own opinions and to decide what will make her life better.  And I definitely want her to know that different isn't bad and that there are likely more commonalities than there are differences between her and her peers.  But I also want her to know how to adapt, how to look at a situation and figure out how to make it work for her, and to not take "you can't do that, you're disabled" from anyone.  I want her to kick Spina Bifida squarely in the ass and have fun doing it.  I want her to know that her diagnoses are part of who she is, but they don't define her and she can redefine them.  Most of all, I want her to have a happy and full life.

And now you know some of the things that, until recently, I didn't know that I didn't know, but now I know that I don't know enough about them.  Y'know?

Sunday, August 18, 2013

Betcha didn't realize you could swap like that

I blame the lack of sleep that comes with being a parent to 2 under 3, but one time Addy requested to sing "Jesus Loves Me" and I accidentally started singing it to the tune of "Twinkle Twinkle Little Star" (aka, "ABCs" for those who didn't realize that that's the same tune).  It totally fits, by the way, but it's REALLY hard to do it on purpose because you keep wanting to sing the words that go with the tune after you get through the first line or so.  Let's face it, though, "Jesus loves me this I know, How I wonder what you are" just doesn't really make a lot of sense.

Along those lines, we're getting Addy used to coming into the church service with us on Sunday mornings.  She loves to sing, but she doesn't read yet, so she and I just sing the words to "Jesus Loves Me" to the tune of whatever hymn everyone else is singing.  It's gotta be interesting sitting near us at church.

Newest baby

Addy requested to "work on a sewing craft project" with me this afternoon.  I suggested that we could work on Nora's baptism dress.  She countered with "How about an iguana instead."  So after nap she and I made Lucy the Lima-Filled Lizard.

Wednesday, August 14, 2013

Juggling act

The girls are at the point where they're about equal in their ability to pull to stand and their desire to try to walk (all the time).  Unfortunately Addy's walker is oh-so-shiny and tempting to poor Nora and I'm concerned she may get a finger pinched (or worse!) if she gets too close.  There is no "Nora plays over here with some toys while Addy walks around over there and plays with her toys."  Nora crawls and chases Addy and, when she catches her, tries to pull up on the walker.  And she's a fast little bugger, too!  On the up side, I don't think it's going to take Nora all that long to figure out how to walk, so this should be a non-issue before too long.  We'll just have to worry about them running after each instead.

Saturday, August 10, 2013

New experience

Addy got to try out an AmTryke hand trike this morning.  She was a little hesitant at first about the whole my-hands-AND-my-feet-move-at-the-same-time? thing, and she definitely was not happy with the weirdness that is a bike helmet.  But she overcame both of those aspects and is really excited about getting a trike of her own.  (A bit too excited methinks; it will be a little a while because our local AMBUCS club does a big order to make the most of the freight shipping charges.) Based on the helmet fiasco, we went ahead and procured a bike helmet to let Addy get used to it while she waits for the trike.

Tuesday, August 6, 2013

What could be more "normal"?

We get to take Addy for an AmTryke fitting this weekend--so excited!  She has been begging for a real bike lately (Dino Truck is really too small for her and her crazy long legs now).

Saturday, August 3, 2013

Of course she's right. She's ALWAYS right.

Addy keeps repeating "Do fish know Christmas or are they confused?"  Thinking that this was just yet another instance of 2 year olds are BSC (bat-scat crazy), we tried to just answer the question.  Obviously, fish are confused, just like the rest of us are by this weird and philosophical question.

No matter how many times we answered the question, we didn't seem to be getting it right because Addy just kept repeating the nonsense.  "Do fish know Christmas or are they confused?"  As Derek said, it's like she an alien or something and if we can just solve the riddle, then the secrets of the universe will be revealed to us.  But neither "They know Christmas" NOR "They're confused" made the question go away.  We were all getting confused.  And annoyed.

Cue Google.

I googled "Do fish know Christmas or are they confused" and got a hit: a blog post from a parent whose kid had watched the Curious George Christmas movie on PBS.  That little bugger, Steve, made up a stupid Christmas song to the tune of "We Wish You A Merry Christmas".

Do fish know that it is Christmas?
Do fish know that it is Christmas?
Do fish know that it is Christmas?
Or are they confused?

Apparently the irritating song has been an ear worm, stuck in poor Addy's head all day.  Now it's stuck in my head, too.  Thanks, Steve.

This word, I do not think it means what you think it means

Addy: My watch is fast.

Daddy: Really?  Your watch?

Addy: Yeah (looking at her naked wrist).  It's fast.

Daddy: What does it mean when your watch is fast?

Addy: (Shaking her head and gesturing quickly) Fast, fast, fast!!

Friday, August 2, 2013

I hate to disappoint you, dear

Thanks to a combination of Dora, preschool, and a very vivid imagination, I was informed several times today that we will be going on a family trip to the beach so that Addy can dig in the sand, swim like a fish, play with a basketball, and eat peaches with her daddy.  Oh, and we're leaving tonight.  

It sounds very lovely, but driving several hours to get to the beach wasn't really what I had in mind for this weekend.

Thursday, August 1, 2013

Now we're rolling

We took Addy's wheelchair back to the dealer's office this afternoon to see what they could do about the brakes--success!

(Old set-up with the brake switch too close to the tire.)

(New set-up with the brake switch rotated on the mounting bracket.)

(Happy Addy in her new wheels.)