Summer Update

It has been a very long time since I've updated about Hudson, sorry!  Honestly though, no news is usually probably very good news!  We're enjoying summer and Hudson is loving having the two other kids home from school.

There have been a few minor medical issues, but nothing too bad.  We recently learned that Hudson has developed osteopenia, which is basically a precursor to osteoporosis.  This is a bit puzzling to his doctors, and today his GI ordered a few tests to see if we can figure it out.  He thinks it may be caused in Hudson's case by an absorption problem, leading to a nutrient deficiency.  Hudson has also lost some weight, so his GI is ordering an elastase test to check for pancreatic insufficiency.  He has fallen below the failure to thrive mark again, so we need to figure out why.  We upped his tube feed rate as well in an effort to get more calories in.

The osteopenia was discovered on an X-ray, initially ordered to check for what could still be causing his left sided weakness.  At his mito follow up with Dr. K a few weeks ago, she noticed that he holds his left arm close as well, indicating weakness of his left upper side, as well as the persistent limp from his left leg.  Thankfully, his MRI was normal, so a stroke has been excluded.  He just completed an EEG last week to check for seizures, but no results from that yet.  The other interesting thing we discussed with Dr. K was his abdominal migraines, which don't seem to be responding to medication.  She has referred him to a cardiologist who specializes in autonomic dysfunction, which she feels the abdominal issue could be related to, in an effort to see if he has any new options or ideas on how to manage Hudson's autonomic dysfunction.

Hudson and I leave early August for the feeding program at Kennedy Krieger.  I'm very nervous about this whole endeavor but anxious for it to work!  His GI put my mind to rest today, because I keep thinking, if I just work with him hard enough, maybe we can be successful at home.  The GI told me that the treatment Hudson needs isn't safe to try at home, medical intervention is absolutely necessary.  I suppose this was the reassurance I needed to hear to know that this 2-3 month inpatient stay is what he really needs.

To end on a great note, Hudson was medically cleared by Dr. K and his immunologist to go to school.  No more homebound services.  Hudson and I have been together for 4 years now, it will be hard to let someone else be in charge of him for part of the day.  I know he will love being around other kids though, and that ultimately it is in his best interest.  IF he doesn't get sick!  That part does terrify me, and Dr. K said we won't know unless we try.  His immunology numbers have been pretty stable, and she feels we should give it a shot.  If he's sick all the time, obviously the plan will change.  

Hope everyone is having a great summer!