We have many, many more appointments in front of us, but now I feel like these are the “fun” appointments. The ones where we will really start to see our little man open up in news way. I also know that he will tackle all these new challenges with the same determination and energy as he does everything else. This is just the beginning.
Technology is our new best friend!
Within five minutes of observing Gavin, she (and the rest of the team for that matter) said “the issue we have here is this super smart kid is in the wrong body. So we need to fix this.”
As special needs parents, we go on a lot of doctor’s appointments (some days I feel as though I should change careers we’re in docs offices or hospitals so much). With the exception of one of Gavin’s doctors from when he was born that we hated, we have loved every doctor and hospital we have been to. So when we went to Gavin’s intake appointment a few weeks ago at a new hospital, we were surprised by the disappointment we felt over what is a world renowned facility. So of course when we had Gavin’s two hour assessment with the complex care team at said new hospital last week, we were less than excited to go. With the previous lackluster visit we really weren’t sure what to expect this time around. All we were told was that there would be approx 4-5 docs from various specialties that would come in and evaluate him, that it would take approximately 2 hours and then they would make any needed recommendations.
SPOILER ALERT: We were blown away (kinda wish this had been our first appointment!)
Now when they said 4-5 docs what I think they really meant was 10 docs, a nurse, two stenographers and a communications expert. All in a normal sized exam room. All I could think was – “Gavin is NOT a fan of crowds, of people he doesn’t know, men with beards and glasses (with the exception of his father) and loud noise – this is going to be an awesome 2 hours.” But I was in for a big surprise.
My little man constantly amazes me. It was a 4pm appointment. He’d had a long drive and didn’t nap. While not a cranky kid by any means, when he’s tired and in a new situation, he can be kinda difficult. Well damn me if he didn’t smile and laugh the entire time.
When one of the docs asked if they could lay him down on the table to examine range of motion for his legs, I said it was fine but Gavin might not like it. He doesn’t care for those tables, hates the crinkle paper and can be leery of new docs examining him – especially men. Color me surprised. He was totally fine. When I needed to step away to speak with the communications specialist, he barely noticed (generally this would have been a BIG no – no on my part). He was so captivated by the four adults around him that he was good (now it MIGHT have had something to do with the attractive lady docs and nurses that were fawning all over him but I could be wrong….)
At one point there were about five side conversations going on. Several docs were involved in conversation about next steps, best approaches, etc. Gavin was still being examined by his team of four (they were measuring range of motion for his legs, can he fully straighten his legs, how far can he bend his knees, etc.) I was having a hard time keeping track but not my Gav – he watched and listened in to each and every conversation. He understood at least some of what was being said because he would respond at the appropriate time in the appropriate way.
Now it was time for the part I always hate most about appointments like these. It was time for the recommendations.
This team definitely takes a different approach, they put the things you would think that should be on the top of the list on the bottom. They all want Gavin to not just enjoy his childhood but to be an ACTIVE participant – not just be a bystander watching life pass him by. They want him to be able to have the same experiences that able-bodied children do – which to be honest is a huge challenge. To accomplish their goal the team has broken everything down into three components that they want to tackle (and in this order):
1 – Communications
2 – mobility/independence
3 – all the medical crap
This made us VERY happy. For us, the biggest part is the communications component. Most times I can figure out what Gavin needs. When school/camp comes to me with a situation, I can usually figure out what’s causing the upset and make a recommendation to try and help. But when he is in pain or upset I can’t do anything more than guess. I have no idea if he has an ear infection or if his throat hurts. If someone was mean to him or made him laugh – he can’t tell me. When I ask the kids about their days, he simply smiles at me (or yawns if it was a long day). But he also can’t tell me what he WANTS. It can be extremely frustrating and upsetting – for both of us.
The communications person is AMAZINGLY AWESOME!! Within five minutes of observing Gavin she (and the rest of the team for that matter) said “the issue we have here is this super smart kid is in the wrong body. So we need to fix this.” Anyone that knows Gavin is very aware that he is extremely expressive and that when he wants something, there’s no doubt. He will stare down what he wants until he gets it. He communicates with his eyes – pointing to what he wants or picking from options given to him. Having seen this, the communications expert knows exactly what her end game is – his stroller will be fitted with super cool technology that will have a board with objects (at first) on it and when he wants something a retina scanner will be able to tell where he is looking and TELL US what he wants. AND THE BEST PART: I thought he’d have to be older for this. NOPE. He is the perfect age!!!!!