Wednesday, July 31, 2013

What is this "cup" thing you speak of?

Nora has been mostly confused by sippy cups so far. They're just slightly tasty teething toys as far as she's concerned, and not really a source of liquid refreshment. Tonight I dug out one of the soft straw cups, though, and she figured it out pretty quickly. Watered down apple juice gets a big cheesy grin and a thumbs up from Nora! (Addy had quite a few teeth when we'd gotten these and she nearly chewed the end of the straw off the first time I gave it to her.)

In other Addy + Nora news, Big Sister has been hovering at the edge of obsessed with "Signing Time" lately and narrates proper technique on various signs to all of us (she's usually correct, btw; she might have a career in being an interpreter). It's excellent fine motor practice for her, even if it does distract from more important things like eating her lunch. The adorable part is that I've noticed Little Sister has been doing a lot of babble signing lately in her attempts to be Just Like Big Sister.

Tuesday, July 30, 2013

Deep thoughts with Addy and Nora's Mommy

I accidentally ran across a post on someone else's blog yesterday that talked about her experiences parenting a child with Spina Bifida.  She talked about how much emphasis everyone puts on standing and walking and mobility and how frustrated she is with that.  The gist of her post was that the ability to stand is not an indicator of quality of life.  Not walking is not the same as failure.  I get that.  Totally agree with her 1000% on that point.  I strive to make sure that both of my children understand that point.

The part that pissed me off (pardon my French) was that she chose to use as her battle cry the Shel Silverstein poem "Standing is Stupid" (which she admitted was not a great choice because it's about a kid who is lazy and not one who finds standing to be physically difficult).  I have a few choice words for this blogger, starting with "How dare you?"  Standing is not stupid.  Standing is awesome.  Just ask Nora and Addy.

To the extent that it isn't physically dangerous for her to do so, my goal is for Addy to have all of the same opportunities and experiences that her sister has and that includes standing and walking.  Addy and Nora may do things differently from each other (and the rest of the world) and they may have different interests and strengths, but they will have the same opportunity to discover those strengths and interests for themselves.  As long as Addy finds joy or benefits from doing things like standing, I will bend over backwards and turn my house up-side-down to encourage, facilitate, enable, and generally make it happen.  And I will shamelessly celebrate with her when she does things like stand on her own.  Same for Nora (though I don't anticipate needing to do things like install 8-foot-long parallel bars in my kitchen for Nora's benefit).

If it wasn't enough that each of them finds happiness in the simple act of standing all by herself, my daughters both find it to be a bit of a challenge right now and I think they really enjoy the achievement as much as the act of standing.  Nora squeals with delight when she pulls up to stand.  Addy always says, "Look at me standing/running/jumping/dancing!"  Who am I to tell either of them that what gives them a sense of accomplishment is actually "stupid?" Moreover, who the hell is anyone else to tell them that?

If we live long enough, there will almost certainly come a day for each of us when standing will be impractical if not impossible.  Addy will reach that point much earlier in her life than Nora will and I will almost certainly not live to see Nora get to that point.  Does it mean that life will cease to be worth living once standing is no longer possible or practical?  Nope, not even close.  A very full life--full of meaning, full of joy, full of hope, full of delight--can and will be had without standing and I plan to instill that lesson in both of my girls.

Until then, standing is far from stupid.

Monday, July 29, 2013

Expectations too high?

I did the great wheelchair exchange today at playgroup (the vendor offered to meet me at the therapy center where playgroup meets, so we wouldn't have to make an extra trip).  Addy had already gone into her classroom when the vendor representative arrived, so I didn't actually get to see her try to use the wheelchair with its fancy, shmancy cable/pin-lock brake system until we got home.  Well, the brakes work, and the wheels turn, and the footrest is in the right spot, but the brake switches are mounted right next to the wheels and poor Addy's thumb got pinched in it when she tried to roll herself from the car to the house :( I think there should be room on the frame to mount the brake switches further away from the wheels, but I feel really bad about it.

Thursday, July 25, 2013

We ask so much

We went to go pick up Addy's new wheelchair yesterday (it shipped from California on 6/24 and only arrived in town last week on Thursday). Besides taking approximately forEVER to get here, the local dealer hadn't realized that the configuration we needed was not as simple as they had hoped (Addy needs 22" wheels so she can reach them and she needs the foot rest to be mounted at almost the highest spot possible on the frame because of the length of her legs, which left no room to mount the original braking system. The manufacturer had gotten around this problem by sending 20" wheels, but Addy wasn't able to reach them when we tried them out). It took about an hour of futzing around, trying different configurations, before they decided on using an alternate style of brakes. They're getting it all swapped around and everything, but it seemed like they kind of missed the ball on this particular order.

Tuesday, July 23, 2013


I think the parallel bars are more like 8.5-feet long. Note to self: add some kind of support to the middle of the bars.

Not sure what to think

We took Addy to an evaluation appointment today to see how she would do with forearm crutches and quad canes (wide-base "granny canes"). We started with a pair of pink canes, but they were just slightly too tall and too bulky at the base. We moved on to a shorter pair of stainless canes. Better fit height-wise and bulk-wise, but only 1 of the 2 canes could actually be adjusted. Then there was the actual using of the canes. It required just the slightest input and instruction from the PT and Addy was having a "Nope, I'm 2.5 and I'll do it my way" kind of day.

We didn't even get out the forearm crutches. (By the end of our 1-hour appointment, she was getting the hang of it, but she wasn't real happy about it.)

Kind of bummed about that.

BUT we are now borrowing a set of 6-foot long home-made parallel bars so Addy can work on doing more of a hand-over-hand motion while she walks (which she'll need when she tries canes again). Her PT is going to see if she can find a working pair of tiny canes for us to try at a later date.

Tuesday, July 16, 2013

Latest proof that 2-year olds are just plain crazy (cute, but crazy)


Addy is fascinated by iguanas. Or at least the word "iguanas."

Her favorite verse to "If You're Happy And You Know It"? "Say, 'Iguana!' 'IGUANA!'" The latest resident of "Old MacDonald's Farm"? An iguana. (P.S., What does an iguana say?? Cow says "moo," duck says "quack," but so far the iguana just stares in disbelief.)

Believe it or not, this is a welcome reprieve from her other favorite word of late: boogies. Did you know that "boogies" is the last letter of the alphabet or that "extra boogies" are the key topping to her favorite "Silly Pizza"? 'Cause they are.

Friday, July 12, 2013

What a difference a few months (and a hip release and some KAFOs) can make

January 24th was when Addy had her tendon releases done. Before that, she couldn't wear her AFOs for more than an hour at a time due to the plantar flexion in her right foot and she couldn't even stand with both feet on the floor at the same time because her hip flexor was so tight.

Now it's mid-July, almost six months later and she is able to stand and walk with tall braces and a walker for up to 2 hours at a time. (It's not the fastest mode of locomotion, but she's up and on her feet and independent about it for most of the day now.) She can balance by herself for 20-30 seconds at a time. She can cruise a windowsill, sofa, table, baby gate, etc. So so so much progress! So much progress, in fact, that she gets to go test drive some forearm crutches and quad canes later this month. Holy cow!

Monday, July 8, 2013

And she's off!

Nora has achieved crawling. More accurately, she achieved "crawling." She scooted forward with her belly up off the floor using both hands, her left knee, and her right foot. Forward is forward, so I'm going to let it count!

Sunday, July 7, 2013

It's kind of like ballet. Sort of.

Addy loved her faux ballet moves yesterday so much that she keeps asking for more. The problem is that I know approximately no ballet. At all. Let alone how to adapt it into something Addy could do. So we're going to try yoga instead. (Addy asked if she could wear her yoga pants and some yoga shoes for it, since she got to wear her "ballet" water shoes for yesterday's dance lesson.)

Saturday, July 6, 2013

Approximately ballet

I made the mistake of helping Addy to "pliƩ" (bend at the knees and stand back up, with her arms held over her head). Now it's all she wants to do, even when her poor legs are beyond tired.

Note to self: find a ballet bar.

Thursday, July 4, 2013

A round of applause for the 8 month old

Nora claps now. So cute!

She's also thinking about maybe considering the idea of crawling. She did a great 4-point crawling stance yesterday and even rocked side-to-side on her hands. Then she opted for laying on her belly and rolling away.