January 16, 2014

Addison Audiology & ENT Update

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.
The nitty gritty... because of the construction of the ear in people with down syndrome, sometimes the procedure is impossible to do.  We feel confident in knowing that Dr. S is the best doctor in our region.   He treats many children with Down Syndrome so if anyone can do it, he is the one.  These tubes are only a temporary fix and will most likely need to be replaced 2-6 times (every 6-12 months) before Addison is over the hump.  The down side to that scarring caused by repeated incision into the ear causes scar tissue that can in itself cause permanent hearing loss.  This is compounded in people with Down Syndrome, who have a difficult time healing to begin with. (Note stomach bug took out our other kids for 1-3 days and Addison was sick for more than 14.)  Dr. S feels that Addison's case is worth the risk, at least for the first set of tubes.  We will take each set step by step and evaluate whether or not it is advisable to repeat the procedure in the future.            

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
Once again, we are struck by the level of care God has given to Addison.  From our insurance to his therapists to his coordinators and social workers and by the amazing doctors we have worked with.  Not all children are blessed with the level of care that has allowed Addison to do so well up to this point.  I would ask that while you think of Addison you also pray for the many children who are held back because they do not have the ability to pay or because they do not live in an area with programs as good as those we have access to.

Until next time,

Kat

2 comments :

  1. I will certainly be praying for Addison! I truly think that the people at Children's are amazing, and we have always had completely positive experiences…
    Let me know if I can help in any way, or if you just want to talk. As you know, we are very familiar with hearing loss and deafness, and I would love to be as much use to you as I can be.

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  2. What a cutie! Praying. Which reminds me, I need to take Arabella for a hearing test. She seems just fine, but since she has a bit of a expressive speech delay (she is going for therapy) they want me to have her checked.

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