Addison has had an eventful week. Part of me wants to say, "Poor Addison," but really I think this little fellow is so amazingly blessed!
To recap... You may remember we were having trouble getting the appointments recommended by Addison's geneticist for him to be evaluated by the audiologist and ENT at Children's hospital. The earliest appointment we could get as of October wouldn't be until June 2014. Henry's service coordinator at Infants and Toddlers recommended and made arrangements for him to be tested here in Frederick. (Blessing 1) Two days before Thanksgiving we learned Addison is completely deaf in his left hear. At that time he had full hearing in his right ear. The opinion of the Audiologist here in Frederick and our pediatrician was to wait and see if the fluid resolved itself since there were no signs of infection at the time. Addison has remained infection free since then. (Blessing 2) Dr. L was not comfortable with waiting to see if the fluid cleared. She expedited the appointment process at Children's Hospital to get us in with Dr. S, ENT and Dr. L, Audiologist. (Blessing 3)
Since December we have seen a concerning decrease in Addison's progress on all fronts. As you know he was ill with a stomach bug over the Christmas holiday. It took more than 2 weeks for him to fully recover and we chalked his lack of progress up to the illness.
However, it seems there may be other issues at play.
We spent today at Children's hospital meeting with Dr. L and S. (Blessings 4 and 5) These two, as well as their entire staff, were phenomenal. They apologized for the trouble getting appointments and told us how inexcusable it is. Dr. S told us to email him directly in the future so we don't have to mess with the scheduling issues again. Both Dr. S and Dr. L knew their stuff. They spoke with us, and with Addison, clearly and with kindness and patience. They answered our questions and inquired about our family. Again, we were floored by the level of care we encounter through Children's. This is such an answer to prayer, as we had strong reservations about going to Children's at all. (Blessing 6)
What we learned today is at this point not only has Addison's condition not improved, but he has profound hearing loss in both ears. To sum it up simply, he is deaf. However, there is no permanent damage at this time. That means, Addison CAN NOT HEAR but he has the POTENTIAL to hear. (Blessing 7) Unfortunately, he has lost 2 + months of critical language development. But fortunately, we have the knowledge to help him, a plan is in place, and we are working on the process.
As we suspected he would, Dr. S recommended immediate surgery to drain the fluid in Addison's ears and insert tubes to allow the fluid to drain in the future. Pending insurance approval (which we do not believe will be an issue) and scheduling we hope to have this done as early as next week but definitely by this time next month.
How can you pray?
* For easy approval process with the insurance company.
* To get surgery scheduled next week when Allen is not due to travel.
* That Dr. S will be able to do the procedure
* That Addison will do well under anesthesia (both Brianna and I have had adverse response to anesthesia)
* That this will reverse the problem and keep the ears clear of fluid
* That his hearing will return to normal after the procedure (he will be retested at 4 weeks post op)
* That his speech will recover and catch up once he can hear
* That this will not need to be repeated in the future
Until next time,