Its been awhile

I have not been a very good blogger these days!!!!!

Nothing too crazy has been going on though.  Poor Isaiah is still struggling with retching.  He has basically been retching nonstop.  It is horrible :(  He used to at least get a 2-4 wk break in between but now it is so unpredictable and pretty much constant.  It is really affecting his quality of life.  He has barely gone to school these days. 

Avery has been feeling good but continues to struggle with his feeds.  He is not even tolerating 5cc/hr which is crazy.  He is losing fluids with not being able to get his feeds so now we are adding extra IV fluids to make up the difference.  Yet another thing that sucks, a gut that doesn't want to work.  His gut has gotten so much worse of the past yr and it is scary.  I fear that we will lose the ability to give him meds in his gut.  That would not be a good thing at all but it seems like that is the road we are heading down. 

This is such a nasty disease that affects so many parts of the body.  So unpredictable and uncontrollable. 

I do have to be thankful that Avery's respiratory status has significantly improved.  At least I am not battling respiratory and GI issues b/c then I would totally lose my mind.  I just hope we can find shome relief for Isaiah soon.  We are off to see the endocrine dr. regarding his diabetes which is stable thankfully.  I am interested in hearing her perspective on things. 

I do have some video to load which is sooo cute.  It is of Avery standing up and just cracking up at himself b/c he is standing which minimal support.  It will surely put a smile on your face.  I just have to find the time to do it though.