There's not a lot of change, and not a lot to really update. Jasper is still taking his treatments well. Still no negative reactions to the drug itself, thank goodness. He still varies week to week on how well he handles process(es). Somedays he allows the Emla cream to go on really well, and others, he has to be 'held down' while in tears when it goes on. I wish he could understand what the cream was for, so that he'd realize the next step would be much more painful without it. But all in all, for his age, I think he's doing amazingly well with it all.
Last week we had a different nurse, than our usual 'Cathy', and she wasn't familiar with our 'routine' so we ended up being there for an extra hour longer than usual which was frustrating, but Jasper had a rare nap while we were there too which helped pass some time for all of us.
Christmas is now past, it was a wild time at our house. Santa was generous (I think) and the kids are having fun with their new 'toys'.
I'll leave you now with some words from Grandma Kate. Take care everyone. God bless!
This past Wednesday I went with Darren and Jasper to the Children's Hospital in London. It was a moving experience. Wednesday must be IV day because I think that every child there was hooked up to one.
I was very proud of both of "my" boys. Darren knows the routine down pat and was able to help get Jasper ready for the infusion. He was so calm and tender with Jasper. Jasper strutted into the hospital and knew just where he was going and what happened at each stage. He popped up on his bed at 10:45 and stayed there until his infusion was done at 5:00 p.m. The only time he put up any fuss was when the port was put in and taken out, both of which procedures are painful. The rest of the time he played games, listened to stories, napped and taught Grandma how to play Angry Birds. He's a trooper.
I came away with an overwhelming sense of gratitude: grateful that there is an enzyme replacement therapy available for Jasper and that he can take it without any ill effects, grateful that his family lives close enough to a facility where he can get the treatment, grateful for the facility and the people there to administer the ERT, incredibly grateful that Jasper has a family willing and able to make the sacrifice to get him his treatment, grateful to communities and friends who help pay the travel expenses, and tremendously grateful to live in a province which funds a weekly treatment that costs nearly $5,000 each week.
Grandma Kate
