The Atresia Microtia conference weekend in California

So I'm finally going to post about our great trip to California for the Atresia Microtia Conference! Here's a link to my photoshow from the weekend: Palo Alto, CA trip photoshow (hit the back arrow to return to the blog when the show is over).

We flew out on Friday, Oct. 10th, on Southwest airlines (with Faith's and my tickets being provided by Southwest on a medical transportation voucher which we were so thankful to get from them -- please think about choosing Southwest for your next trip!) We went to the hotel where Fred's family met us, first his parents, Bob and Rosemarie, then Bob and Hilma and then Jim and Hue. It was a really nice evening and Jim and Hue generously brought us all dinner from a nice Italian restaurant.

On Saturday I went to the conference with Fred's parents and Hue. We listened to 5 doctors talk about options for opening up ear canals (atresia repair) and outer ear reconstruction (using either the child's rib cartilage or a synthethic material). It was very good to hear, especially already knowing that these doctor's are considered the very best in the country (according to many parents who have compared other options), maybe in the world for these two surgeries. That evening, Anthony went home with Bob and Hilma while we went to the pizza social at the hotel that I organized and AmeriFace Org paid for, where we got to meet a bunch of the other families attending the conference. We met Janalyn and Cicily (and Chris, Maya and Grandma), Jana and her twins Tyler and Jacob, Deena and Teresa Joy, Aretha and Yasmine, Lynn Marie and Jake and so many more plus all of their familes. It was just wonderful being able to meet so many people I've been chatting with from the Yahoo groups for Atresia Microtia, Goldenhar and Treacher Collins.

Online friends Jana and her twin boys Jacob and Tyler,

Deena & Teresa Joy, Cicily and Faith

Faith and Cicily - future best friends? We hope!

Faith is just 1 week older than Cic!

Janalyn & Cicily, Aretha & Yasmine, Me & Faith

On Sunday each of the families got to meet one on one with each of the doctors for just 10 minutes, but it was nice to meet them and briefly discuss our options. As I mentioned before we went, we found out that Faith is a candidate to have her ear canal opened (atresia repair) on one side and they confirmed this again and basically said we should focus on her jaw first and do her atresia repair when she is a little older (probably between 4-6 years old) just as long as it is before she gets her trach out so that we don't have airway issues and will be able to do her surgery in the surgery center instead of in the hospital.

The cost for the 3 major surgeries (one to open her right canal, one to reconstruct the right outer ear and another to reconstruct the left outer ear) is roughly around $50K each and we have no idea yet whether any of it or just how much would be covered by insurance. We have good insurance through my job, but I've heard a lot of stories about this not being covered and Faith's Medicaid (secondary insurance) is limited to services provided here in Colorado. So, who knows, that is a few years away but we may end up needing to do fundraisers to help cover the cost.

For Faith's left ear which she is not a candidate to have the canal opened, we are going to go ahead and have her Baha (bone anchored hearing aid) implanted within the next few months. We have an appointment with her local ENT on Nov. 11th to discuss it further and set a date for that surgery. The surgery itself is fairly minor, about an hour for them to implant a titanium screw in her skull (exactly the same as a dental implant) and I believe insurance will cover the full cost of that. After the surgery we need to let the site heal for three months before her Baha can be attached directly to her head, so in the meantime she will continue to wear it on a headband. Even though it sounds straightforward and I know it will be one of the easiest recoveries Faith will have of her many future surgeries, it stills makes my heart and stomach hurt to think about it.

Enough of that depressing stuff! After the conference ended on Sunday we drove up to Bob and Hilma's house for a nice dinner to celebrate Mom & Dad Kargoll's 56th Anniversary! It was a beautiful sunny day and Hilma cooked a great meal! Anthony had a great time spending the night there and terrorizing their two adorable little dogs, Radar and Bandit. That evening we went back to the hotel for our last night before flying home on Monday. It was a really good weekend between the information we learned at the conference, meeting new families and getting to spend a couple days with Fred's family as well. If you haven't already seen it, please enjoy the photoshow from our weekend! Just hit the "back" key if you want to return to the blog when you are done: Palo Alto, CA trip photoshow

Hope everyone is well and preparing for a haunting Halloween this Friday!!
Love,
Robin

Getting Ready for California

We are going to an Atresia Microtia conference in Palo Alto, CA this Friday to find out if Faith is a candidate for having ear canals created (atresia repair) and to meet a couple of the best doctors in the country for doing outer ear reconstruction. It's way too early to begin those surgeries, but it's a good time to be researching our choices and this conference is a great opportunity to learn about them directly from the surgeons. Plus we get to have a mini-family reunion with Fred's parents (driving up from San Diego), and his brothers and sisters-in-law, Bob & Hilma and Jim & Hue, who live in the San Francisco area. We will be celebrating Bob and Rosemarie's 56th anniversary while we are there too!!

In addition to getting to see Fred's family, we will also get to meet other families dealing with issues like us. I am especially excited to meet Cicily who is just 1 week younger than Faith and her mom Janalyn who started Cicily's Adventures blog and gave me encouragement to create Faith's blog and to start blending Faith's food. It's all the other families out there in the ethernet that have made dealing with Faith's issues so much easier by knowing we have never been alone in this journey and by having the benefit of learning from their experiences.

Prep for the conference and future jaw surgery:
In order to determine if Faith is a candidate for atresia repair, we had a CT scan done last Monday, Sept. 29th. There is a 10 point scale they use to determine if kids are candidates, called the Jahrsdorfer scale, named after a doctor who has been a pioneer in atresia repair surgery. We also need the scan for sending to the jaw surgeon (once we make that decision - see my earlier post on Jaw Reconstruction versus Jaw Distraction ). Since she needed to go under anesthesia for the CT scan, our ENT also tried to do a bronchoscopy, where he puts a camera tube down her throat to make sure everything looks normal so that when the day comes to decannulate her (remove her trach tube), that we know she has no other issues to affect her ability to breathe normally. He tried to do a bronchoscopy when Faith was about 6 months old, but could not get it past her tongue. This time he was able to see as far as the bottom of her vocal cords, but said that she is still an impossible intubation at this point and that she of course needs a jaw distraction to improve that. So, basically this served as a baseline tracking point to see how much space is gained from her first jaw surgery, whenever that will be.

Faith, as usual, handled the whole procedure without any complaint. In fact, the Anesthesiologist said she behaved like a 5 year old. :) We got Faith out of bed around 6am (about an hour before she normally wakes up) dressed and out of the house by 6:15 to check in at 7am. They took us back around 8am to prep Faith and they gave her a ton of stickers to keep her busy, which worked very well! I got to go with her into the CT room and hold her hand while they put her under -- I attached the tubing to her trach and I signed to her that it was medicine and that she was going to take a nap. She had no problems with it at all, and this is another one of those strange times when I am thankful for her trach. Many kids are absolutely terrified of going under by having a mask put over their mouth and nose.

I took a couple pictures of her day:

Faith busy putting stickers on her doll:

Faith showing off her 3-D butterfly sticker, I have never seen anything like it!

Faith's babydoll covered in cat stickers:

Faith still sleeping after the procedure:

CT scan results already and some GOOD NEWS!!!
So while I was busy typing this posting, I got a phone call from Sheri at the California Ear Institute (the host of the conference we are going to) to give me the results from reviewing Faith's CT scan which I mailed to them last week. I'm so excited I can barely contain myself -- Faith IS a possible candidate to have an ear canal made on one side of her head (on her right side which is more developed than her left). They graded her right ear at a 7 and her left ear at a 5, and they think the 7 may go a little higher following her jaw distraction. They recommended that we go ahead with implanting her Baha on the left since that will likely never be a good candiate for repair and then following her jaw distraction do another CT scan of the right and see if it goes higher on the scale. I believe even at a "7" they would be willing to do the surgery with a fairly high probability of success, but I will have to verify that when we talk to the doctors this weekend. I'm really excited about this because I was really expecting to hear, no she is not a candidate.

We now have a lot to think about because the surgery does not come with a 100% guarantee, in fact, I think I heard somewhere the grade on the scale correlates to the probability of success, meaning a 7 would roughly equal a 70% success probability. But, the thought of her having normal hearing, even in only one ear, means that she could hear while she is swimming or in the shower or at night when she is sleeping. While the Baha is amazing, it also has some drawbacks, including feedback when anything touches it (like a hat or laying on a pillow), maintenance of the surgery site for the rest of her life (but not unlike brushing your teeth or your hair regularly) and keeping a suppy of batteries handy and sending it in for repairs when it breaks - which we have been fortunate not to have to deal with yet. It is also emotionally hard to think of your child having a screw in their head with a small box attached to it and not worry about the teasing that may come with it. So, even though the good news is only for one side of her head, it is wonderful to know she has more than one option.

Well, this is way too long to expect you all to read, my apologies!!!

Love, Robin

Happy 2nd Birthday to Faith!

Sorry this is over a week late already, but we've been busy! Faith had a wonderful birthday week, starting with celebrating it 2 days early with her DHH (deaf/hard of hearing) toddler group where they sang and signed "Happy Birthday" to her and I brought in a cute little florescent pink cake! Rachel, one of Faith's favorite nurses is sitting behind her and her best friend at school, Mia, is sitting to her right. Mia made Faith a beautiful pink birthday card studded with jewels!

On Friday, her actual birthday, we had a pretty low key day and had cake and presents from us and relatives that evening. She loved all of her gifts, but I think the bunny rabbit hand-warmer from Aunt Rosie, Uncle Bruce and Emma, may have been her favorite - see how stylish she looks?

Saturday was her birthday party, which we had at the park near our house. The weather was perfect although it turned a little chilly near the end. My favorite was watching the kids play duck, duck, goose - Faith's first time playing. Faith is loved by so many people, but her cutest "admirer" is Colin (4 yrs old), one of Keshena and Dennis's 3 sons, who just treats her so adorably. It means a lot to us the way their boys have bonded with Faith and still like to call her "Baby Faith".

Duck, Duck, Goose!

Friends: Gracie, Colin, Faith & Aidan

Colin and Faith

Rachel and Faith

As you can see Faith had a great time and we enjoyed celebrating her birthday with so many good friends!

Love,

Faith & Mommy