Monday, October 27, 2008

Microtia Conference

Now to discuss the whole reason we were in California - the Microtia/Atresia Conference!
Saturday Chris and I went to Palo Alto to hear presentations by the very best doctors specializing in microtia and atresia. Dr. Roberson talked about creating ear canals (atresia repair), which we found out Cicily is NOT a candidate for and we are not too sad about. Drs Reinisch and Lewin talked about Medpor ear reconstruction. Dr. Brent presented on rib graft ear reconstruction. It was all amazingly informative and impressive to hear and see what they can do! The major thing Chris and I both determined was that all of these procedures are very complex and we only want one of these doctors who do these procedures weekly to be working on Cicily.
Sunday we had patient appointments with each doctor where Cicily was able to come and we could ask specific questions. We saw all the doctors and were impressed with them all professionally and personally. After it was all over, we've decided either the Medpor ear reconstruction or prosthetic ears (not presented at this conference) would be our choice.
Medpor - For medpor ears, the surgeon takes a porous polyethylene implant shaped like an ear and places a membrane and skin grafts from the patients' head on top of the implant. The result is an ear that is shaped like an average ear and sticks out from the head like an average ear. The medpor ear can move when pulled on and the live skin can be moved around on the implant just like a typical ear. This surgical method requires one surgery for the right side, one for the left and possibly a third revision surgery to touch up any little areas. What's the downside then you wonder? While the medpor ears look amazingly good, they still do not have the exact appearance of a natural ear with all it's intricate folds and curves. I have pictures of some of these ears in a powerpoint format, I guess you can let me know if you'd like to see it and I can email you.
Prosthetic - For prosthetic ears, you have an anaplastologist take an ear mold (of Mom's or Maya's ear in this case) and create a latex ear using that mold. This ear can be painted to perfectly match the person's head. It is attached to the head using glue, implanted magnets or clips. This ear looks absolutely perfectly like a natural ear. The downside you ask? The ears last 3-5 years and then a new one must be made, the color doesn't "tan", and you have to take them off and put them on each day. This site has excellent pictures

We would probably have either of these options done when Cicily is around 4-5. Both methods are rather costly and insurance typically does not pay for much, if any of the cost. I'd love to hear what all of you reading would prefer if it were your little ears in question, so please vote in the poll on the sidebar! Thanks

Tuesday, October 21, 2008

laundry & scar tips

Along with all the detailed new medical knowledge I've acquired being Cicily's Mom, I've also learned some useful everyday tips I thought I'd share.

#1 Laundry Blood Tip
We've had a lot of blood on clothes around our house in the past couple months, but not a single blood stain! Here's the secret: salt. Pour it directly onto fresh blood or two day old blood and soak it in cold water, wash the clothing, and blood will be gone. We actually had a salt solution in our washing machine every day during the month of July.

#2 Scar Tip
Growing up I always put vitamin E on my scars to make them dissappear. Dr. Singh also recommended this practice and added massaging the scar to the regimen. I bought a bottle of vitamin E capsules and 3-4 times a day I poke one with a pin and massage a little into Cicily's jd scars. We'll see if it's just as magic as the salt in making things dissappear. :)

Tuesday, October 14, 2008

Meeting Friends

Good Friends (at least their Moms hope so!) - Faith and Cicily
Faith is one week older than Cicily, lives in Colorado and has Goldenhar Syndrome which is very similar to TCS. Faith also has a blog It was so cute when they met Cicily smiled so huge at Faith and Faith gave Cicily a hug!
On Saturday night after the microtia conference, we went to a pizza party for all the families at the conference. I finally got to meet 3 Moms and their children that I've talked with on the Treacher Collins Syndrome Yahoo group. It was so great - like meeting instant long lost best friends! All 3 children were born within a few months of Cicily and have such similar issues. It was awesome to talk trachs, BAHAs, jaw distractions, food aversions, etc. and be completely understood. Hopefully we can continue to meet up as our kids grow.

Mom (Janalyn), Cicily, Faith, Mom (Robin)

Jacob, Jana, Tyler (twin brothers and their Mom), Teresa, Deena (Teresa's Mom), Cicily, Faith

Robin, Faith, Janalyn, Cicily, Aunt Dorothea, Yasmin

San Francisco

Our family took a trip to San Francisco, California last weekend. There was a microtia/aural atresia conference in Palo Alto, CA that we went to on Sat. and Sun. (more on that later) so we decided it would be a great idea to go a few days early and see San Francisco. It was Cicily's first time on a plane and she did great. We enjoyed riding in the cable cars, touring the Boudin sourdough bread factory, Ghirardelli Square, Fisherman's Wharf, Chinatown, the beach, etc. We stayed in a really nice hotel next to the opera house that was tall and skinny just like every house in the city! Grandma DeEtte came with us to help with Cicily and made the trip even more fun -thanks Grandma!

Monday, October 6, 2008

Happy 2nd Birthday!!!

I'm a big 2 year old girl!
Cicily had a good birthday inspite of having surgery 4 days earlier. She had a shared birthday cake with Grandpa Courtney the night before and on her actual birthday we went to the zoo with her cousins, played, and opened presents.

Maya, Birthday Girl, and Mom at the Zoo

Maya and I wrapped all of Cicily's presents in tissue paper this year, and she did a great job opening them all up.