We spent the last part of June, all of July, and the first part of August at my mom’s and grandma’s cabins at Cultus and Okanagan Lake, which is why I haven’t updated much. It was a blast and is the first extended amount of time in a long time that we have been able to enjoy ourselves without a whole lot of stress. We played at the beach, swam, went to the park, picked up bugs, caught fish and learned to play badminton. Of course, we came back weekly for Trey’s infusions.
So here’s what has happened while we were away:
In mid July we noticed Trey had another hernia, this time a left inguinal hernia (his last hernias were right inguinal and umbilical). It began popping out after Trey had been running around for a long time and didn’t seem like a big deal. At first I was hoping to put off surgery for as long as possible, since his last hernia surgery was less than 2 monthes before we noticed the new one and because it didn’t seem to be causing any discomfort. Since then, however, it has started causing Trey pain and he doesn’t want to do any extended walking or a lot of running. He’s cut down on his level of activity in a huge way and it’s causing him to be a bit stir crazy since he wants to be doing so much more.
We saw a surgeon today and should have a surgery date within a few weeks. It is very frustrating to say the least (as having your kid get put through numerous anesthetics and surgeries is awful), but there’s nothing we can do about it and in the scheme of all things related to Hunter Syndrome, a hernia surgery is no big deal.
Trey has also now been on ERT for 6 monthes. Yahoo!!! I will forever be appreciative for how quickly we were able to get Trey on ERT, especially after everything we’ve noticed in him as a result. We saw his growth charts at the hospital today and his growth is motoring along. When he would have stopped (or significantly slowed) growing by his third birthday without ERT, Trey’s height continues to follow the 95th percentile. His features are soft…I’ve said all this before. I am just so happy how much ERT is helping.
Six monthes of ERT also means that Trey has virtually no chance of having a serious reaction and because of this, we have made some helpful changes to his infusion day. Trey no longer has his blood pressure or temperature taken during naps which is nice because those would wake him up, and his post infusion wait has now been reduced from one hour to 30 minutes. Although these changes don’t seem huge, when we do this weekly, it makes a difference.
Speaking of ERT, we received some crappy (I have other words in mind, but won’t use them here) news from friends in Ontario. Their son, Andrew Lanese, about whom there is an article in the Media section from April 21, 2007, was denied funding for ERT for the second time.
Andrew was diagnosed with Hunter Syndrome before trials for Elaprase began, but was not included in the Elaprase trials. He is now 10 years old. As a result, his parents, Sonia and Nick, had to wait for the trial to begin, to be completed, they had to wait for FDA and then Health Canada approval and after years and years and years of waiting to save their son’s life (we didn’t even have to wait a year between diagnosis and Trey starting Elaprase so I can’t imagine), they were told that his life is not worth saving. At least not for the cost of Elaprase.
I cannot fathom their frustration and am deeply saddened and disappointed by the Ontario government and by Canada’s unwillingness to help families with rare diseases. To read more, visit his website at: http://www.caringbridge.org/visit/andrewlanese
And last but not least, Trey’s splints are causing blisters so we have an appointment to get them adjusted tomorrow. They are not an enjoyable device. He does not like them even though he is an incredibly easygoing kid, and they disrupt his (and therefore our) sleep. But again, in the scheme of things, this is no big deal. He is adjusting to them, just not as quickly as I’d hoped or expected. Otherwise things are rolling along. We’re back in town for the remainder of the summer and just hanging out and enjoying life. Thank you to all who continue to support us in our journey. It means so much to us and keeps us strong.