28 steps

We're still at that stage where every week seems to show seriously measurable progress. Last week Bobbi took seventeen steps in the pool without her therapist touching her (she's still holding on to a pool noodle to do that - something that she did NOT need before surgery in the pool, but still...) She also made some really good recoveries when she lost her balance - a very important skill.

Today, she and Rose came home saying that she had made 28 and 30 consecutive steps!!

And the bathroom

Although not leaps and bounds, Matt's been getting out there a few times a week lately, so things are slowly moving forward. Most notable is that the mudding of the joints is nearly done (I think he needs one or two more passes out there), and then we can sand and paint!

Also worth mentioning is that all of the fine-grade plywood trim (like we did in the 2013 addition) has arrived, and he's finished just today the last of the initial sanding and wiping down, and has moved it all into the 2013 addition basement in order to set up varnishing.

This weekend there won't be much forward progress, as tomorrow, in a number of waves, out of state and out of country family will be arriving over the course of the day. Saturday morning we will celebrate our immediate family Christmas, and in the afternoon my aunt and uncle and some of my cousins will be joining us for an extended family Christmas!

Rehab: day 1,000,482

(Or something like that!)

Have I mentioned that the recovery from this surgery is a long road? Well, if I haven't, I have now.

And yet, there is still measureable progress steadily happening. Here's a glimpse of the work on the robot two days ago:

Last week she walked for three minutes with the support of the sling, but doing all of the motions with her own muscles - no help from the robot itself!

On Tuesday, she went six minutes, and then did the rest of her session with the robotic legs, and then today when she and Dad got home I asked how it went, and she said that it was still six minutes, but they had her carrying a higher percentage of her own body weight.

As you can see, she's getting some help with positioning her feet, as the legs still have a tendency to want to pull in and cross, but she's doing all of the lifting and stepping forward - and those are nice big steps!!!

Minnesota Girl

Bobbi will tell you that she LOVES snow and LOVES cold weather. Good thing, too, because it's been snowing for the last 24 hours, and we've got a good foot of it out there, I would guess, based on what I see on top of the garbage can, and it's not going to be as cold as last week (-30 F without the windchill), but it's going to be cold enough that the public schools are starting two hours late tomorrow.

For Bobbi, that means no school tomorrow, since we pick her up for the day at 11:30 on Fridays so she can get to the pool for therapy, so there's no point in bringing here there for an hour.

And that, dear readers, is why Bobbi loves snow and cold. It means we get to stay home!!!!

This is how Bobbi looks after a day at school. (We were trying to take her passport photo in a place with even lighting...outside.)

And a nicer one after being reminded that she can't go on a trip to Bulgaria this summer without a passport!

And this one would have been just about perfect...if we hadn't forgotten that you can't have glasses on in the photo!!! Oh well. Better luck another day. Good thing we're starting months in advance.

Wow!!

Sometimes it just sneaks up out of nowhere and is almost like a punch in the gut. Last night it happened while I was laying Reuben down for bed - late, because we had watched a movie as a family (as has become our Saturday night custom), and it was one that we thought he might enjoy, so he stayed up with us. He absolutely did like the movie, excitedly calling out the names of things he's interested in: water, fire, down, candle, sploosh. But his inability to really let us get into his head, to be able to ask questions about what's happening, or talk with us the next day about his favorite parts, or any of that, is just simply not there. As I tucked him into bed, I was overcome by sadness over how trapped my nine year old son is inside the body that he's been given. I will never know him and interact with him the way I can with Owen, or will be able to with Eben.

I shared my thoughts with Matt as we fell asleep a few hours later.

The next few hours were punctuated with a series of tonic/clonic seizures, ending in a dose of valium, leaving Reuben tired and with no appetite for breakfast this morning, but still eager to get ready to bring his Bible and go off to church.

One of Reuben's favorite parts of the main church service is the music. He loves to watch the drummer, and is particularly pleased when our pastor is one of the guitarists. Today, the final song at the beginning was this one, Behold Our God. As we finished the song the instrumentalists cut out and the sanctuary was filled with the rich sounds of our voices alone, in adoration of our King. As the final voices were dying out, Reuben belted out his signature, "Wow!!!!"

Matt's initial response was the same ours always is in situations like this: Hush, Reuben. Though he and I looked at each other right after, recognizing that it wasn't as inappropriate as many of the other times he's loud and screeching...

After the service was over, both Matt and I had a few people approach us, sharing how it had touched them to hear Reuben's exclamation (because, yes, it was loud enough for pretty much everyone in our 200+ congregation to hear!) One man said how it had brought tears to his eyes - that what Reuben had exclaimed had expressed exactly what he had been thinking.

What a juxtaposition: our dear boy is trapped inside the many limitations of his body, impacted in every cell by a rogue 20th chromosome, and yet here he was, the day after I'd been mourning his inability to communicate, able to express out loud what so many of us were thinking, but had too many inhibitions to express. Shame on us, and good for Reuben.

Once again, I'm reminded that oftentimes we are a little too proud for our own good, and that God looks at things through an entirely different lens than we do.  

But God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong; God chose what is low and despised in the world, even things that are not, to bring to nothing things that are, so that no human being might boast in the presence of God. ~ 1 Corinthians 1:27-29