I woke up this morning knowing Shawn was sleeping in his room down the hall. My house feels whole when he's here. And my own level of anxiety is just a little lower when I can see him.
Today is Thanksgiving and I'm sitting here thinking about all the incredible things in my life I have to be thankful for. And as much of a struggle as this past year has been, there are many many things on that list.
First and foremost I have to say I'm so overwhelmed with Shawn. His life has turned so completely upside down from anything we would ever have expected. The frustrations he has to deal with on a daily basis would have been enough to make so many people just give up. Instead he continues to focus on his classes, student teaching one day a week at the high school, teaching religious school, and writing music. His drive and determination astounds me and makes me proud.
I know this has been difficult case for Shawn's endocrinologist - all the tests he's done to try to find the cause of Shawn's spells continue to come back inconclusive and many other doctors we've encountered havejust given up on trying to find an answer. Throughout it all Walter has reached out to other doctors for new ideas, most recently suggesting he could try to facilitate getting Shawn's case to someone from Mass. General or the Cleveland Clinic if our current correspondence with a doctor from NIH goes nowhere.
Which brings me to the next person to be thankful for - Mrs. A., one of my mom's college friends. Her late husband was an endocrinologist at NIH. Mrs. A. suggested that her husband's friend, also an NIH doctor, might be able to look over Shawn's case. We sent Shawn's rather sizable file to him, he looked it over and then sent it to another doctor at NIH, Dr. P. Throughout the process Mrs. A. made many phone calls on Shawn's behalf, and she continues to check with us regularly.
Dr. P in turn is now trying to decide whether he wants to see Shawn himself or send him to someone else - his intial assessment is that even with all the currently negative biochemistry that it could still be what Walter suspected almost a year ago. On Sunday night I got an email from Dr. P. asking about a few more tests he wanted to see. Dave called Walter first thing Monday and he said he'd be able to spend some time the next day getting something set up for later in the week. So we were expecting him to call back on Tuesday. Within an hour he called back and said it has been set up for this Friday.
Which means that tomorrow Shawn will have a CT enterography, along with yet another blood test. So while we're still searching for answers, I'm thankful that we have so many very smart people interested in the search.
Finally, I'm thankful for all of you reading this. Your support continues to lift me up and bring me hope.
Happy Thanksgiving.
