October 2, 2007 mcfadyena

Tube surgery, PT, private Elaprase funding

Trey had a successful tube surgery yesterday morning. Both of his previous tubes were out, so Dr. Moxham replaced them with permanent T-tubes. His left ear had some thin fluid in it, but his right ear was filled with a lot of thick fluid. Dr. Moxham got all of the fluid out, but his right ear required quite a bit of suctioning, so his ear is draining some blood tinged fluid. I’ll give more details in my blog, but all in all, a great and easy surgery…once the anesthetic wore off, he was back to his normal self.
We also received awesome news from Trey’s physiotherapist (PT) last week. For about the past year, Trey’s PT has been closely monitoring his joints, as he has been losing range in areas such as his ankles, elbows, wrists, knees, and shoulders. Two appointments ago, Trey’s range had increased a bit, but his PT didn’t want to say too much about it as she had only seen Trey a few times (Trey switched PT’s in June, this one specializes in joints) and he could have just been more comfortable with her. However, Trey’s range has continued to improve. At this point, the range in every joint in Trey’s body has improved as much as 30 degrees and all but his right wrist and elbow are now within “normal” range for a kid his age. With a progressive disease, we are thrilled when things haven’t gotten worse, but to improve…especially when Trey is athletic as he is…we’re ecstatic.
And in more good news, the family from Quebec who has been fighting to get Elaprase for their son, Nathaniel, has finally received funding privately through their family’s health plan. This is virtually unheard of in Canada (private funding… well, funding for any rare disease, but especially through private insurance), I don’t actually know anyone who has received funding this way before, but they have done it, and we are so excited for them. The family in Ontario is still fighting.


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