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 http://www.prosthesis.com/ear_base.htm

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

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. :)

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 http://kargoll.blogspot.com/ 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!

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.

Jaw Distraction #1, Surgery #7 in the history books!

Cicily went in yesterday to have her distraction device removed. It went very well. Dr. Singh removed everything completely internally (via small incisions inside her mouth) so Cicily will only have two small scars where her pins were sticking out. Yes, Dr. Singh is a surgical marvel! She also said Cicily's bone looked good and her bite is closed in the back of her mouth and only slightly open in the very front (3-4mms). So Cicily has an underbite, which is exactly what we wanted so she could have some room to grow into her jaw.

Overall the distraction was a huge success. What a relief!!!

We want to thank everyone again for helping us. This was certainly a "village" effort. We have such amazing family and friends, extremely talented doctors and have been so blessed. Thank you very much to all of you and to Dr. Singh and Dr. Glick.

Cicily has done quite well since surgery. When she woke up enough in recovery, she started signing "out", "home", "all done", and trying to take out her own I.V. We've decided she equates the I.V. coming out with leaving the hospital! She got so frustrated after signing and trying to leave, she held her breath until she passed out (2 times in fact!). So we were very glad Dr. Singh thought she would do ok coming home. Cicily slept very well last night in her bed and has been up and playing today.

Here are pictures of Cicily post surgery. Once again, I pull no punches, so don't look if you can't handle blood.

Last night at home - about 4 hours post-op The pin sites were left open a little so they could drain. And drain they did! I tried cleaning her up before bed, but she screamed and almost passed out again, so I decided a little blood wouldn't hurt for one night.

Today - looking pretty good! Quite a lot of swelling in her cheeks. It reminds us of 9 month old Cicily. And yes, the right side of her face is not moving much. A little disconcerting, but should go away in a few days.

X-ray before and after

Cicily hates the x-rays, so she always screams and has an open mouth, which makes it difficult to tell what her jaw actually looks like! But, you can note how the mandible is further out in the second slide than in the first and you can see how the distractors are slid all the way to the bottom of the distractor body. Comparing both profiles is pretty amazing. Look in a straight line from her forehead to her chin- quite an improvement!

Also of interest is the difference in Cicily's right and left middle ears. In the first slide you can see a small opening of an ear canal (it's in the middle of the darker white area on the bottom of the cranium-where the ear is). The second slide is Cicily's left side which has complete canal atresia and all you can see is the same darker white area without any ear canal opening.