Been a while since I've been here, but I see the forum is as helpful as ever. What a great place to share our anxieties, fears, frustrations and good news with others that understand them. I wish a forum like this existed for Spencer's disease (PMD Luekodystrophy)...sigh.
Anyway, thought I would give you an update on Spencer for those who may be interested. Spencer's fusion was a little more than a year ago and so the docs now want to go in an remove the portion of his rod that pulled through the vertebrae and is protruding from his lower back. Hopefully this won't be a big deal since it is just hardware removal, and also hopefully it makes him more comfortable when lying on his back. Still, it is another surgery and I feel very bad for the little guy.
Otherwise, Spencer remains about the same. He continues to have GI issues and he went through a really bad bout with the flu this year (two trips to the ER) even though he had a flu shot. I will be very glad when the high temp of the day is above 60 degrees.
Thanks again to all of you who helped us so much a year ago, and keep up the good work.