The Givens Family: October 2008

We went to Palo Alto (Stanford) with Brennan this last weekend for the 2008 Microtia/Atresia Conference. We braved the road and drove (5 hrs) with both Grandmas who helped a great deal with Brennan throughout the weekend. Each of them now has intimate knowledge of the Wiggles including songs, videos and character backgrounds. A huge thanks to both of you!

We settled into our little host hotel and soon were met with other families who also have children with Microtia and Atresia. What a relief to see and talk to someone who didn’t need an introduction to Brennan’s condition and who also has all of the same questions we do. We have waited so long to talk to people who actually understand more about the challenges we face as a family. It was humbling to say the least as we continued to talk to families who are living the uphill battle of insurance, complications and little understanding from the general medical world about what their children are going through. Here we thought our little boy with one ear was complicated. I was challenged personally to pray continually throughout the weekend for these boys and girls and their families who have much more severe complications. By far some of the strongest people mentally and emotionally we have ever met and it was inspiring in so many ways to spend time with all of them.

The first day we sat through about 4 hours of presentations from doctors and specialists in the field who live and breathe Microtia/Atresia. We sat with about 40 other families as they each went through their area of expertise. Topics included Audiology, Reconstructive Surgery of the outer ear using the “rib graft” method (a piece of the child’s rib is used and carved into the shape of an ear and surgically attached- four stage surgery at age 6), Reconstructive Surgery of the outer ear using the “Medpor” method (a synthetic porous material shaped into a replica of the opposite ear and surgically attached- one surgery at age 3), Atresia surgery (opening the absent ear canal following a high enough score on a CT scan hopefully to restore hearing to normal limits, and finally hearing aids (if one does not qualify for the surgery following a CT scan). There were lots of numbers and “….percent chance” used throughout the day. All in all many things that were covered we already knew from our own research but it was good to hear about and see on video some of the surgeries. Lots of difficult decisions are ahead of us in the future.

The second day we met with each of the doctors (one on one) that spoke the day before.. for free. A lot of people see this as just a way of getting around a co-pay but these people are the best in the world and have waiting lists months long. This was a huge opportunity especially for those people who came to the conference from overseas and the east coast. It took most of the day but we got to ask all the questions we wanted and they gave us all of their attention for about 15 minutes (absent Brennan running around in circles while we’re trying to talk). We learned so much and we walked out with several prescriptions for hearing and speech evaluations which usually take at least two or three regular visits (and co-pay) somewhere in LA and usually spread out over months time. We got that in five minutes. Overall a very productive day in our understanding of what to expect in the next couple of years.

This weekend was a huge step in Brennan’s life. The information we came away with and the new relationships with other families are priceless. We learned that we have a lot of homework to do as well. The reason for going to this conference was to develop an immediate plan for the next few years of Brennan’s life. We walked away with a clearer picture but it’s not a walk in the park. A lot more tests and evaluations for Brennan are ahead which means countless phone calls (on hold), tests and doctor’s visits. We are so grateful for the Let Them Hear Foundation for putting this conference on. So many families are completely in the dark when it comes to this rare condition. We now have more friends to pray for as well. Many of the children we met there have a much longer and harder road than Brennan and we are grateful that we were able to meet them and their families. Thanks to all of you for your prayers for Brennan. We couldn’t do this without you. God Bless all of you.

The morning we left... Brennan watching his favorite show

Dinner with the other families at the conference

Brennan in the waiting room with the other children. They had lots of activities for the kids to participate in.

We took pictures with the specialists!...