This week there was a number of comings/goings amongst the residents, but mostly comings. The adult stroke therapy session got underway and two men - one from Alaska, the other from Chicago, arrived with their spouses and sons. They would join us in the chamber only and surprisingly it wasn’t too crowded. Also, Ken (father of Holly) left on Sunday and his mother and mother in law filled in until Wednesday. Of course weekend dads (Rob and Daniel) also departed. I have to say that despite having extra bodies here, the older adults give the camp a much better balance. With exception to Kim and me, the other parents are in their early-mid 20s, with one only 18!The biggest change to the therapy was a new "block" devoted to individual programming. Following the group stretching, standing, stepping exercises, every child now follows a separate program, according to their individual goals. Each day this changes, so it provides a variety to the routine, as well, it focuses more on Thomas’ needs. Thomas mostly spent this time working on his walking and balance. Everyday he used a Kaye walker, which is a low-end support walker that doesn’t hold him in at all, he controls his core balance 100%. Although I hold him from behind at the hips, this is the type of walker I have always hoped Thomas would strive for – the other ones we had been trialing really locked him and didn’t give him enough control or challenge. In the Kaye walker, he held himself very nicely, controlled his gait with few corrections and pushed the walker forward while stepping. This was a great exercise and we would practice after dinner, walking down the long corridor. He also had to walk outside of a large 2 x 4 type board to help control criss-crossing, as well use parallel bars to side-step in/out of a horizontal ladder. I wish I had a gym like this at home to use! Another day he spent 10 minutes riding a rocking horse, then stood holding onto two bars at his sides, while kicking a ball.
The last part of the day always ends with the group sitting down at a table, working on fine motor skills. I was surprised when the conductor placed a wooden puzzle in front of Thomas and he was able to pick up the small pieces with the finest tips, including his left weaker hand. They sing more songs during this period with kids participating with different hand movements like shaking a rattle or raising a bar up/down and using a ring as a steering wheel to sing “wheels on the bus”. They also focus on fingers and thumbs and I noticed that Thomas still has difficulty isolating each one. As well, they do speech exercises like blowing a bubble off the wand, placing a straw between their lips or trying to lick off jam from above their upper lip. The kids take a final break for lunch and we receive tips on eating skills. All in all, a very well rounded program - you feel like you are addressing the whole person - and all the different challenges.
On Wednesday, Thomas was being very disruptive and uncooperative, so I pulled him out a bit early. I knew that he needed a break and we ate lunch on our own then went outside for some fresh air. I placed him on a swing and he thoroughly enjoyed it. At one point, he had this very concentrated look on his face and bent and extended his legs like he was trying to self-push. He usually just lets his legs hang so this was good to see. Later that day in the chamber, we were throwing bean bags back/forth and Thomas reached for one while lifting his leg up at the same time - another new maneuver. I keep noticing more vocalization and that he carries his voice better (not just with loud screams and cries) using words – he bellows back “nah” for no and “yea” for yes, and calls out to me “mum”.
The sage bath routine is now in full swing and taking on a life of its own. With the preparation, steeping, then 20 mins soak, followed by the stretching, this takes anywhere from 60-90 minutes in duration. I pretty much have to start right after dinner, following a quick lap down the hall in the walker. During baths, Thomas is becoming less reliant on using his left hand to stake his balance and uses both hands to do things like putting the facecloth right over his face and over his head. Although it is time-consuming to engage in these nightly rituals, I have noticed that Thomas’ tone is much looser when he wakes up- it used to be quite regularly tight.
This week Phillip, a 2 ½ year old boy from Texas, suffered a seizure in the middle of the night. It lasted 4 mins and 59 seconds and his mother Jennifer was extremely worried – anything over 5 mins could result in a coma. Although Phillip takes anti-seizure medication, oxygen is known to flush impurities out of your body and in some cases, make medication less effective. The following night, she noticed that he was moaning in bed and rushed him to the hospital – luckily, it was only an ear infection (also common with oxygen chamber) so he had to take a break from it for 3 days. Phillip unfortunately has one of the more severe cases among the group. He does not have CP, rather he was born with a brain malformation that severely limits his muscular movement as well as his ability to digest food. He is a fairly big boy (about Thomas’ size) and quite observant as he scopes his surroundings and can make eye contact with you from across the room. It is often heartbreaking to watch him, he seems to have had so many challenges and so little quality of life. On top of that, Jennifer is a single mom who also has a 1 ½ year old daughter and although we clashed a bit during the first week, I have come to admire her relentless strength and dedication to her kids.
The week ended with Rob and Adrienne’s visit, which many people now seems to look forward to. Friday night we joined the group and played some euchre - Rob and I finally became partners and lost 2/3 games. We now owe another couple a cooked dinner (thanks Rob). On Saturday night, we went into town (while Adrienne babysat) and discovered a pub that has live music, which we decided would be a good regular spot. Today Adrienne and I got busy planning and distributing invites to Thomas’ birthday party next weekend and are looking forward to receiving our first visitor – my sister Cynthia from Ottawa.
I would say that we are definitely starting to settle in…
