Appointments

Today we had GI and mito dr. follow ups.  On the GI front, the hydrogen breath test was completely normal.  Good and bad I guess.  Good because he doesn't have bacterial overgrowth, bad because we still don't know what is causing his symptoms.  He also lost a pound, which I was sad to see.  We work so hard for the weight we do get on him!  Tonight I have pulled out his Farrell bags, and am going to try to use them.  I've had them a while but we've never used them.  Farrell bags are a bag that you can hook up to his feeding extension, so that he can be fed and vented through his tube all at the same time.  Hopefully this will help with some of his stomach pressure issues.

Hudson had a good time playing with Dr. K, his mito doctor.  Since about October, Hudson has had a limp on his left side.  She watched him walk up and down the hall over and over, and she told me that she was looking for signs of a stroke.  She said he is at an increased risk for one.  His limp isn't noticeable all the time, and although his gait looked off to her, she wants me to catch the limp on video and email it to her.  So begins the days of following Hudson around trying to catch something a doctor wants to see on video!  I did this so much when he was younger with seizures.  Catching the limp shouldn't be too tough though, it's pretty obvious.

She is also starting him on a trial of MCT oil.  She said only about 3 of her patients currently meet the criteria for this.  Mito moms, if you're interested, it's having really low Complex I but really high Complex II.  Hudson has very low Complex I and I & III, but his Complex II is working at about 80%.  The theory goes that since Complex II is processing fats well, adding MCT oil, another fat, may help the body out.  She said Complex I processes the sugar.  This all basically goes back to being able to supply Hudson's body with energy it needs to function.  The risks of MCT oil is that it can cause the body to become acidotic, so we'll have to keep a lookout for that.  I hope we see good things from it!

Friday is the big day!  Team Hudson's fundraiser!  I'm ready for it to be here and excited.  Hope to see everyone there!  Thank you so very much to everyone who has put their time and energy and efforts into this.  I appreciate it so much and could never have done it without the help of everyone who has participated.  THANK YOU!