Wow! It has been a long, long time since we wrote anything here! That just means that not much is going on! :) Yea! Or...that we have that precious little girl to keep us busy and not posting ;)
Actually, a lot of little things have happened over the last 1 1/2 years since the last post. Alex has a new GI doctor in St. Joe, MO (Dr. Doumit) who was Dr. Shen's (Cleveland GI doc) resident just a few years ago. We have traveled to St. Joe (about a 1-1 1/2 hour drive) several times since we started seeing him about 9 months ago. He is able to do many of the procedures Dr. Shen does in Cleveland. This should save us some trips! We couldn't be happier to have found a doctor in KC who understands the treatment plan and communicates so well with our Cleveland doctors. What a "coincidence" that one of Dr. Shen's own residents would be practicing nearby. We are so blessed. He is like our own little piece of Cleveland, just 13 hours closer ;).
On a sad note, Dr. Geisler, Alex's Cleveland surgeon left the clinic. We are not sure where he went, but he will be greatly missed. Hopefully we will find out more when we go back next time. Our next trip is planned for March 1st. We have been 4 times since his major surgery (I think...they all start to run together after a while!). Dr. Shen and a new surgeon are doing an exam under anesthesia during our next trip to dilate any areas of Alex's small intestine that have strictures and try a new (and somewhat experimental) procedure to close up some of his fistula tracts. Right now the main thing is to try and keep the strictures in his small intestine open so that more fistulas do not form and food can pass through his gut without blockages. We can tell when the strictures start getting tighter again b/c he has pain and vomits. Right now, he is able to go about 6 weeks-2 months between dilations. The plan is to alternate between seeing Dr. Doumit and Dr. Shen to scope, dilate and assess any changes from there.
Dr. Shen has given us the name of a doctor at the University of Chicago that is experimenting with stem cell transplants. Basically, they are finding that patients with co-morbid Crohn's and Leukemia who get stem cell transplants are cured of the Crohn's following the transplant. This is all in the very early stages of trials, but could be an option for Alex in the future, if necessary. Obviously, we are not anywhere near this option (thank goodness!) and this would be a near-last-resort treatment.
Above is a picture of the family over Christmas. We LOVE this little lady God has blessed us with. She is our sunshine through good days and bad! lydiasloop.blogspot.com is still up and running, and I promise to post more often on that as well. :) Love to you all!