Hello Everyone.
I am NOT new here. But, because it has been such a long time, I am finding myself again drawn to my MPS family. Life has been such a whirl wind since I last visited the forum. I was married last time I frequented this forum, and between the doctor visits and regular life, I have been so overwhelmed that I had to just let go of alot of things and just go out and find things out on my own. I live in Colorado now with Ian, and my daughter lives in Texas with her father.
For those of you who don't know us, Ian was diagnosed with Sanfilippo A in 2009, We did the UofM study, then Ian regressed alot, and I divorced.
I first wanted to say thank you to the members who have sent private messages checking in on Ian and how he is doing, it is much appreciated. You have no idea how lonely it has gotten, and Hello Jessica Wellman!! I find myself missing my mps family because you all are truly the only people who could ever understand how it feels to live the kind of lives we do.
Where are we now?
We are doing okay considering the degeneration over the last couple of years. It has been disturbing how quickly things have gone downhill. I believe last time I logged in here Ian was getting a g-tube put in, and he did quite well with that. He is back up to weight now! It has taken this long to get him back up to weight, but the liquid diet has done it's job. He belly still works but is slow. His swallowing continues to regress, and he only takes thickened liquids by mouth. He can no longer tolerate walking for more than 20ft or so. His feet are clubbing and there is contracture in the wrists. He had his first true grand mal a few weeks ago where we had to use diastat. He has avascular necrosis of the hip, chronic pain, and is sleeping more. But all in all, over the last couple of years Ian has gone from my little boy to be engulfed with the symptoms of this horrible disease. I am hoping we plateau soon.