Another mixed bag

This week has been crammed with doctor appointments and hospital visits.  All things considered, every visit went well.  Hmmmm, where to start.   I guess with Boise. 

We arrived in Boise on Tuesday night.  We ate and then headed to our cheap hotel.  I was so tired.  I love staying in Hotels because it's one of the few times I know my kids have no reason to leave.  They can't hang out with friends or go on any outings so while they are chillin on the beds watching tv, I went to bed.  It was only 9:30 and I was so happy to have the chance to get more than 4 hours of sleep.  As my luck goes, I could not sleep to save my life.  I was so bummed when I 'woke' up more tired than when I went to bed. 

Anyways, I digress.  Our GI, Dr. Thompson is one of my favorite doctors.  He is the guy who started it all, made the final diagnosis on my kids almost 12 years ago.  He always spends so much time with the kids and gives them all sorts of good information they can use.  For instance, Spencer is trying to bulk up with weight lifting since he is such a 'small' guy.  Dr. Thompson shares weightlifting tips with him, as well as supplements to help his struggling GI system handle the added load on his body.  I really like that he tries to include them in the care plan. 

Here's how the stats on the kids break down from a Gastroenterology stand point.

Shelbie...Her GI system is really being stressed from the problems she is having with her immune system and empty bone marrow.  There isn't much we can do for her.  That was sad to hear.  She had a really tough time hearing some of the things he had to say.  We all get so good at denial that weeks like this, really bring things into magnification.  

Spencer...He finally made it on the growth curve!!!!  His eyes just beamed when he heard that.  He has always been in the 0 percentile.  He is now about the 3rd percentile thanks to an 8lb weight gain this year!  He only grew 1cm but he was happy with the weight gain.  We are starting him back up on pancreatic enzymes to see if we can get things to settle down as far as the nausea and pain.  If that doesn't work, he feels like Spencer's biggest problem is the mitochondrial issues.  Since mito affects muscles, it makes sense that it is also wreaking havoc with his GI track since it is basically muscle.  I am really hoping that the enzymes work. If it's mito, there is no treatment and it is progressive.  I just don't want to see his organs start failing, especially his colon etc. 

Sam...he had some great gains as well.  He also made it to the 3rd percentile with his 4lb gain in weight and 2" in height.  It's about time that poor kid had a growth spurt.  He is in the same boat as Spencer, probably more mito going on than anything.  Sam is still on enzymes so not much changes for him.

So, that's that.  We also found out that our Hematologist from Seattle, Dr. Shimamura's favorite GI doc left Seattle and now works at ST. Lukes with our GI!!  He specializes in SDS.  We were able to meet him and he will work in tandem with our regular GI so I am really excited about the team I have worked so, so hard to place!  I am pretty happy with all of our docs right now so I guess you can't ask for more than that.