Our Minnesota Adventure, Part 3: The Pendulum Swings

On Tuesday morning (and Saturday morning, and Sunday morning, and Monday morning), Sarah Kate had the same breakfast: a giant pile o’ bacon and a chocolate donut. Given that chocolate bacon donuts are a thing these days, I guess it’s not all that odd (she did eat them separately, at least). Her plate was a culinary pendulum – extra sweet on one side, extra salty on the other.

Like Sarah Kate’s breakfast, Tuesday was a pendulum.

Before we headed over to Gillette for her consult with the orthopedist to find out their recommendation, we chatted a little about what to expect. Sarah Kate’s attitude (at least since she found out she won’t be awake for the surgery) has been that she wasn’t too excited about the surgery, but she was looking forward to the post-surgery-post-rehab time when her body will work better. She asked me if she’d be like “normal” kids after her surgery. I answered her honestly, that she probably wouldn’t but that she should ask the doctor when we saw him.

After a little while I noticed that she had gotten very quiet so I asked her what was wrong. She told me she’d been so excited about the surgery because she thought it would make her normal, but now she doesn’t care if they do it or not.

My heart was broken.

I told her all the things I knew she should hear. That she will never improve at all – and will likely get worse – without surgery. That she has a great deal of control over how much she improves by choosing (or not) to exercise and stretch, not just now but for years to come.

We boarded the hotel shuttle and rode the short trip to Gillette, and she began to cry. She’s tired of people staring at her legs – or, more specifically, she’s tired of people “never looking at her face and only looking down at her legs.” We arrived early for X-rays and were then assigned to exam room “Purple 7”. I asked Sarah Kate if she thought it was a good sign that we got not only a lucky number, but her favorite color. She just shrugged.

Fortunately, we didn’t have to wait long to see the doctor, and he was careful to explain the gait study clearly, but also didn’t hem-haw around with his recommendation. The gait lab process was pretty fascinating stuff, and it not only included gathering the information, but processing it, as well. The gait analysis used Sarah Kate’s information and then ran it against all possible combinations of procedures to determine the one with the best outcome. The doctors then reviewed the computer’s recommendation and compared it against their own separately formed opinion.

The verdict?

A smorgasbord of orthopedic delights (yeah, not really):

1. Distal femoral extension osteotomy – to correct the inward turn of her femurs/knees
2. Patella tendon advancement – because of her crouched gait, her hamstrings are firing constantly, pulling her kneecaps up too high
3. Possible tibial osteotomy (TBD) – her feet look good now, but depending on the outcome of #1, that may change, because her tibias are turned outward
4. Botox in her hip flexors – to loosen them up and get her “over the hump” (because Botox only lasts 3-6 months)

So, basically … the tougher option with longer recovery time that was advocated by Lisa, the physical therapist (I should note here that PT didn’t “trump” ortho – he wasn’t against this procedure but leaned toward a little more cautious start, as the two options aren’t mutually exclusive).

It wasn’t what we were hoping to hear, but we weren’t surprised, either.

One bit of good news from the day is that the gait lab team found very little spasticity in her muscles, so the problems she’s facing now are largely (if not completely) due to her recent rapid growth. Some girls have increased spasticity at this age, so it could surface and wreak havoc on her body at some point, but the doctor seemed to think that the odds are good that this round of treatment will be “it” as far as major procedures are concerned.

That’s very good news, indeed.

I’m cautiously optimistic, as well, because Sarah Kate has exceeded expectations many times before – a product, I believe, not of her physical makeup but her inner drive and determination. One of the questions I was asked in gait lab was if we could tell a difference pre- and post-SDR (selective dorsal rhizotomy, which she had at age three), and I nodded my head vigorously. From dependent on a walker to independent ambulation in five months?

Definitely a difference.

Sarah Kate had a chance to ask a few questions and although she didn’t really perk up, she wasn’t sad or crying anymore. We headed back to the hotel, packed up our things, and took the shuttle to the airport. We checked our enormous suitcase, printed our boarding passes, and then took the light rail to … (drum roll, please) … the Mall of America.

Do you know what’s at the Mall of America? American Girl Boutique and Bistro.

Sarah Kate is like her momma – not anti-doll but not doll-crazy, either. She tends toward stuffed animals more often than dolls. But for awhile she’s had a hankering for one of the lookalike My American Girl dolls. She mentioned it casually in passing before Christmas, but I didn’t think she was serious. She’s brought it up several times lately, so on Tuesday, I asked her why she hadn’t asked for one for Christmas. Her answer? She knew they were expensive so she felt bad asking.

I decided right then and there that my baby needed an American Girl doll.

Meet Ella Katherine, the doll with the same brown hair, blue eyes, fair skin, and freckles as my Baby Doll.

After we finished shopping (and meeting a very nice family from Iowa whose daughter also has spastic diplegia cerebral palsy – Hi, Dan, Hannah, and Chloe!), the three of us had a late lunch at the American Girl Bistro.

The smile broadened and the pendulum swung.

At each table is a little box of conversation starter cards, so Sarah Kate and I took turns asking each other the questions. One of the questions that I drew was, “If you could trade places with someone else for a month, who would you choose? Why?”

I had barely finished speaking when she answered, without a hint of hesitation, “Nobody! I like myself.”

After we finished lunch, we went downstairs to the area of the store with the historical dolls. We had passed by them quickly when we arrived, because we were most interested in getting to the lookalikes. We oohed and aahed and talked about the different dolls and their various outfits, and then turned a corner and saw … the Bitty Twins. Or, more to the point, the blond-haired, blue-eyed, fair-skinned boy half of the twins that looked just like Nathan.

So, yeah … it ended up being a Two Doll Day.

She named him Jake (as in Jake-Jake, kinda like Nate-Nate).

Eventually, we made it back to the airport to wait for our flight, and while we were waiting, it began to snow. Our flight was delayed, then delayed a little more due to de-icing, but eventually the four of us buckled our seat belts and said goodbye to Minneapolis.