Monday, December 19, 2011

December update

Amid all the Christmas preparations the travel plans for the Italy trip are in full swing. “Uncle” Martin was able to purchase the airline tickets by using his considerable amount of frequent flyer miles and that is such a huge help. (Who knew that his constant work-related travel would turn out to be such a blessing for Amelia.) DJ and Kristina have located a small apartment to rent near the hospital in Verona and they have been gathering lots of helpful information from two other families who have already been through this experience. For example, it’s good to know that in an Italian hospital you are expected to do what you’re told and you don’t make requests. Amelia’s head will be shaved prior to the surgery and she will probably be transported by ambulance to another facility for observation right after the operation. She will be in the hospital for approximately three weeks and one parent can stay with her. They won’t be in the children’s ward, so they need to have lots of things to keep her busy. Another helpful hint was to bring shirts that will not have to be pulled over her head while the incision heals. We also learned that when the device is activated (three to four weeks after surgery), it is done in very small increments and under sedation. One of the children showed signs of being able to hear some sounds about a month after activation, the other took a bit longer. Since every child responds differently we have no idea what to expect. Adjustments of the device are called “mapping” and we hope that this can be done at the House Ear Institute in LA after they return home. This is the clinic that is working toward obtaining FDA approval of this surgery in the US, so the staff at HEI are very interested in following Amelia’s progress. One of the doctors has expressed an interest in traveling to Verona to observe her surgery.

In order not to let anything interfere with the Italy trip we are keeping an eye on Amelia’s overall health. She seems to get colds quite frequently and is congested much of the time, which is probably due to all the Kindergarten germs Siena brings home to share with the rest of us. At her last ENT checkup Amelia showed an ear infection and had fluid in both ears, so Kristina and DJ are leaving room in the schedule for possible tube surgery before they leave at the end of January.

Our fundraising efforts are continuing and we are reaching the halfway point. Our family continues to be overwhelmed by the generosity of our friends and family in these tough economic times. Even perfect strangers who hear of Amelia and are touched by her story are sending donations.

“Amazing Amelia” is just taking all this activity in stride and she seems to be enjoying the Christmas season. She is surprisingly careful with all the decorations and is adding lots of holiday signs to her language repertoire. It did not take her long to learn “pie” at Thanksgiving and she very quickly learned “Christmas tree, Santa, presents, angles, stars, snowman and hot chocolate“. She mimics absolutely everything, even when we scratch our heads or cross our legs! Recently she has started to show an interest in letters and numbers and she can now recognize A-F and 1-4. She sees Siena doing her homework (yes, really, lots of homework in Kindergarten!) and wants to participate. Reading books with her is a constant challenge since she wants to sit on our laps, touch the book, turn the pages and observe the signing at the same time. One or two more hands would be so helpful!

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