The tragedy at Sandy Hook, CT is too much to bear and too incomprehensible for me to write about. Two other women have done a far better job than I ever could, so I would very much encourage you to read Ann Voskamp, for poetry, perspective and honest emotion, and Rachel Evens for a no nonsense, straight up AMEN post about where God is in all of this.
I will write instead about our past week and the amazing time we had at Children’s Hospital in Denver, of all places.
We scheduled Jack Jack for some routine tests and evaluations at the Down syndrome clinic at Children’s. We think he is marvelous, but thought maybe we should get some expert opinion on his development and some help charting a course for his therapies once we move to Afghanistan.
We took off for the six hour drive, right as the first major snow storm of the season showed up. There were some scary, icy roads and at one point, a total white out where the semi truck in front of us kept disappearing into the white fog.
The next day we went to Children’s Hospital. Our first stop was Audiology for an in-depth hearing test. Jack Jack enjoyed the attention he was getting from these smiling, enthusiastic ladies, and sat still for every test they gave him and never fussed when they stuck all sorts of things in his ears and head. He was way too busy flirting with the tech!
Turns out Jack Jack does have some hearing loss — not something we were expecting to find out. We’ll need some more tests done and he’ll probably get ear tubes put in to make sure it’s not congestion that is making things muffled up. We are praying that will do the trick, but it’s possible that hearing aides are in our future.
Then we went upstairs to the Down syndrome Clinic. I was especially excited to have Jack Jack seen by Pat Winders, the physical therapist, who literally wrote the book I have on my shelf, about gross motor skills in children with Down syndrome. She is a total rock star in our community and after a half hour with her I could see why. She had Jack Jack running up and down the hallways — really running, not the awkward fast walk he normally does — pedaling a tricycle and being a general hazard to the poor folks getting on and off the elevators, and jumping, with two feet on a little trampoline. She was very encouraging of his progress and potential and made us feel confident that we could carry on in Afghanistan.
Jack Jack also saw a Speech Therapist, an Education specialist and a pediatrician who all specialize in Down syndrome. All of them agreed that Jack Jack was doing very well and that we should just keep on doing what we’ve been doing! I think that says a lot about our team of therapists here in our little mountain town. After spending the day at the hospital, surrounded by experts and fancy therapy tools, I left feeling so blessed that we have been able to stay in our little town and given Jack Jack a great start in life.
We finished up the week with a sleep study. Oh joy — not! Most people with Down syndrome have some issues with breathing and/or sleep apnea and we were noticing some signs in Jack Jack.
The wires and leads to the machine were something else. Jack Jack behaved so well. Not even a whimper as the nurse hooked and taped him up. Once the lights were out he looked around the room with huge eyes and seemed nervous, but never made a sound. I stroked his nose — the one part of his face without tape on it — and he slowly fell asleep. I stayed on the ever so comfy “parent couch” but didn’t get much sleep as the nurse kept coming in to reattach leads or monitors.
We were up and out of there by 7:00 the next morning. I got to celebrate turning 37 by blearily eating at a favorite Denver dinner “Snooze” and making Mr. Incredible, aka The Christmas Grinch, go shopping in the big city and then the long drive home.
The sleep study did show some mild sleep apnea, so along with another hearing test, we will be going back to discuss him getting his tonsils removed and ear tubes put in.
Stay tune for the next post, all about meeting Miss Claire and her wonderful mom and fellow blogger, Melissa Moos. Let’s just say, we were both smitten.