On Tap The Next Few Weeks

The weekend was kind to us as it was relatively calm. We had a little chance to get some much needed rest to prepare for the next series of things to come. In the next few weeks we will be adding Neurology, Endocrinology, Cardiology, & Genetics to our list of doctors following Elias here. We still are waiting to add an Otolaryngologist (ENT) that specializes in the ears. Elias' current ENT, Dr. Rutter is just too focused on the airway right now and this is his forte. So he is in agreement that we should have a second ENT look at him for the hearing aspect. We also have follow-ups with Pulmonology and GI soon as well as ENT planning on doing another bronchoscopy in about 3-4 weeks to visit the tracheal repair. Urology is sitting back waiting to tag on test and surgeries. It is likely these will occur with the Pull-thru surgery. We should be getting a general idea on a time line for when they are interested in doing that soon as well. We still have a few test to complete for this and those are being scheduled for the next couple of weeks too. We finally have an opportunity to get into a local pediatricians office next week. Which is good because Elias is due for some vaccinations and we desperately need someone to help manage his feedings. The beginning of October is out next FA clinic appointment and blood counts for Elias. They are also going to be drawing blood from Katharine & me to send to NY for the FA registry and research. Somehow amongst all this we are also trying to finally get his therapies going again. We have four services there we are trying to work in. So we will still be staying plenty busy and I’m certain more things will pop up into the schedule. At least we were able to catch a breathe over the weekend. Sometimes I do not know how we manage to maintain the crazy schedule we do, especially since it is always changing and shifting. I think we try to just ride the tide so to speak and take things as they come. I often wonder what it is like for Elias? How does he manage all of this and still stay so happy? He is truly an amazing kid.