This week was a bit slower than last week, and hopefully next week will be even slower. Trey had tubes put in his ears on Monday, and although there is stress associated with any surgery (especially your child’s surgery), now that we have entered into the world of MPS and BC Children’s Hospital, we realize that in the scheme of things, a tube surgery is pretty easy. And because Trey didn’t even get a General Anesthetic, he was back to himself soon after we got home.
Tuesday was a day free of appointments, so we relaxed (as much as one can relax with a 1 and 2 year old) in the morning and went to Science World in the afternoon.
Wednesday was a bit busier. The morning was mellow with Trey having a physio appointment with Jane from the Infant Development Program (IDP). They played a whole bunch and Jane made recommendations for how we can keep Trey’s body as flexible and working as optimally as possible. Right now, the only areas of Trey’s body that have any limitations are his wrists, hips, and shoulders, and they are minimal. She made suggestions for how to stretch those body parts throughout the day with easy stretches and play activities (ie. hanging from anything, kissing his knees together, pushing down on his hands to stretch his wrists using Play Doh or running toy cars along the floor, reaching for toys that I place up high etc.).
The afternoon was not so mellow. We had a bunch of things to do at BC Children’s Hospital. Trey’s ears were still draining fluid from Monday’s surgery, and because the fluid Dr. Moxham got out of Trey’s ears during the surgery was not clear (ie. if not infected, almost infected), Dr. Moxham told us that if by Wednesday Trey’s ears were still draining fluid, we would need antibiotic ear drops. So, we went and got a prescription and filled it.
We also had an appointment for blood work to be done at the lab for HLA typing. HLA typing will tell us if Avery, Ry or I are matches for Trey if we were to proceed with a Bone Marrow Transplant. If none of us are matches, a Cord Blood Transplant would be the way to go, since we would not do an unrelated BMT (really though, from our perspective, CBT is the only way to go).
After all of us got our blood taken, we met Kirsten Harkins at the Medical Day Unit (MDU). Her son, Nicklas (he has MPS I), was at the hospital getting his ERT. We met her because we are telling our story for the MPS Society’s ‘Annual Christmas Campaign Letter.’ We met with her to talk about what the Society has done for and how it has helped us.
And unrelated to Trey, but finishing off our busy day, Avery got some of his 1 year immunizations…poor guy, needles all afternoon!! Fortunately my dad came along for the afternoon to help keep me sane. Thanks dad!!
Thursday morning Trey had speech class with Tamara, who is noticing huge improvements in Trey’s language (he’s combining words and putting the endings on words) and he also saw his Osteopath Caroline again. I wasn’t there (Ry took him), but apparently the fluid in his head and spine is moving better than even last week. And that was it for medical appointments for the week!!
Just regular life and fun stuff for the next few days (like Avery’s belated, but not forgotten, birthday party). I’ve come to find that weekends are the only time I can relax because they’re the only days that we don’t have medical appointments and they’re the only days that doctors don’t respond to my incessant emails!!
Next week is so far very empty, just SLP with Tamara. Very nice. It’s weeks like these that I remember what it was like before diagnosis. When I actually had to think about what we might do…the Aquarium or the library? Baking or Science World? The park or painting?