A Different Boat

Upon arriving at the hospital this morning (after getting up at 4:30am) we were told that they had canceled Wesley's procedures since they weren't able to get all 3 scheduled together and no one had called us to let us know. For that matter, we got a call on Thursday confirming his appointment and I talked to orthopedics on Friday about everything making sure to emphasize that it was important for us to get the endoscopy done as soon as possible. So after I calmed down from my frustration, they were able to reschedule the endoscopy (with Wesley's GI doctor) this morning and we will have to do the ABR when we do his hand surgery. So the endoscopy showed irritation in his upper stomach. They took a bunch of biopsies to try and determine if the irritation is a cause, or just a result of all of his vomiting. Hopefully by Friday we'll have some answers.   Over Christmas we tried a blenderized diet for Wes which helps some kids with delayed gastric emptying as a complicati...

So the longer I wait between posts the more I procrastinate writing a post. I get overwhelmed with the idea that I must include every medical update, emotional struggle, or developmental milestone on here and so I do nothing (I might have a little bit of perfectionism in me). I'm trying to get past that and remember I started this blog to help me. So if I quit writing because I feel like this has to be a perfect record of this journey, it is not serving it's original purpose. Tomorrow we have to be at Children's at 6:45am for Wes to get an endoscopy and sedated hearing test. In the near-ish future he will also need surgery on his thumb which we were hoping to schedule for tomorrow too so he only had to get one round of anesthesia. They amazingly were able to coordinate 3 teams of doctors and nurses but couldn't get an operating room so we'll have to do the hand surgery another day (the others can be done in a non-sterile procedure room). We're really hoping the...