Enssle Family

Day one

February 18th, 2008

A long, challenging day today, but things have gone amazingly well so far.

We had Anna’s initial evaluation and casting at 8:30AM at the UAB ACQUIRE program this morning. Anna did us very, very proud. All the doctors and therapists there were extremely impressed with how well she’s doing. Anna “passed” almost every evaluation they threw at her. It doesn’t mean she doesn’t have a ton to learn, but it does mean that she’s made some very significant progress in the last year and a half since her initial diagnosis, and it reflects well upon all the therapy we’ve put her through so far. This is truly a tribute to Tara for putting in so many long hours in doctors’ offices, hospitals, and therapy with Anna, and to the dear little girl herself for learning to endure and prosper despite it all.

During the therapy Anna was fitted for her new full arm cast. Tara had tried to prepare me for this ordeal, warning that based on past experience with her two previous castings “she’s going to scream bloody murder for as long as it takes”. Well, the good folks at ACQUIRE added a single, simple variable to the equation of putting a hard cast on an almost-two-year-old that made all the difference in the world: A Sesame Street video. Lulled into near unconsciousness by the psychedelic antics of that little red monster Elmo and his muppet friends, Anna hardly put up a fight and the new cast was on her arm in almost no time.

We’re very impressed with Anna’s new therapists as well. They clearly know what the heck they’re doing. Obviously they’ve got the casting and occupational/physical therapy parts down pat. But equally impressive is their understanding of the developmental psychology of the kids. Frankly, knowing what exercises to get the girl to do is only half the battle. The other half is figuring out a way to get her to want to do the exercises in the first place. So almost all the “therapy” consists of games, games, and more games, guided by a firm hand. (That bit is important too. I’ve already been ejected from the therapy sessions three times because I’m clearly the “softy”, and Anna tries to use me as a “safety net” when she’s upset with what the therapists are trying to get her to do — which, despite being a “game”, is rarely anything easy). Perhaps the most important thing is that Anna seems to really get along with her therapists, and they’re growing fond of her too.

After the morning session where we had the initial evaluation and the casting we went home for a quick lunch and to put Anna down for a nap. (The poor kid is still fighting a cold, which means she’s twice as exhausted as she normally would be, and it was a brutal morning for her even without a cold). Then our therapists showed up at our apartment with a truckload (literally) of “toys” and other therapy gear. They spent the rest of the afternoon “playing” with Anna, and they’ll be here at 7:00AM tomorrow morning right after Anna wakes up to continue the program. The goal is at least 6 hours every day (excluding naps) of one-on-one (actually, two on one since we’ve got an intern working with our primary therapist) therapy, 5-6 days per week for the next four weeks.

Overall we’re extremely happy with how everything’s played out so far. The main thing is that our therapy team really seems to “get it”. It’s not uncommon for folks to look at how “well” Anna’s doing and ask why we’re pushing her so hard. Today was a bit of confirmation from folks who really study this stuff that all our pushing has been necessary, that all the hard work has helped make an enormous difference in Anna’s capabilities, and that yes indeed there is a bunch more hard work to come.

But for the moment, we’ll allow ourselves to indulge in a feeling of accomplishment. When we asked what we needed to work on this evening our therapists recommended we just take it easy tonight, “let Anna do whatever she wants, and have her favorite food for dinner.” So we took a short walk together, and tried to relax over some pizza and a glass of wine/apple juice. It was over a year ago since we signed up to come on this adventure. It’s been a long year, and a long trip, and it’s a little hard to believe we’ve made it here after all. We’re happy to know that we’ve been doing well by our little girl, and to be in the company of folks who are experts in helping take her therapy to the next level. We now know this is a marathon and not a sprint, and that progress is measured in feet rather than miles, but today at least it feels like we’re on the right path and headed in the right direction.

I’ll sign off tonight by remembering out loud that the real star of the show today, in every way, was dear little Anna. So strong, so smart, so charismatic, and so very patient. She truly made us proud to be her parents.

Sleep well, and dream sweet dreams, little one. Tomorrow is another day, and another set of challenges. But we’re here for you always. We love you.

Entry Filed under: Family, Milestones, Alabama