Apr 20, 2010

Microtia... Gabriella's medical update

We took Gabriella to Riley's Children's for a meeting with the craniofacial team of specialist last week. As Curtis and I were there it dawned on me that I don't believe I have ever blogged about her "special need". Gabriella has microtia that affected her right ear. Gabriella's right ear is very underdeveloped and she cannot hear out of that ear.
We had her hearing tested with a speech pathologist in her left ear while at Riley and she tested with very mild hearing loss...however when the ENT examined her he found that over 50% of her ear canal was filled with wax and debris ~ something he felt could easily play into her hearing test reflecting mild hearing loss. The ENT was able to remove about 80% of the wax and debri and gave us drops to use for two weeks to hopefully loosen the remainder which he will try to remove in two weeks; if it can't be removed in the office she will need to have minor surgery to remove it.
We also met with a plastic surgeon who specializes in microtia reconstruction. When Gabriella is 6 years old she can begin the process to have her ear reconstructed. There are four surgeries spaced about 3 months apart. The initial surgery is the most difficult as they take a piece of her rib from her left side and utilize this to "make" the ear. The following surgeries consist of skin grafting procedures and are much easier and not nearly as long as the four hour initial surgery. A CAT scan would need to be completed to see if Gabriella's hearing could be restored in her right ear. The doctors both feel that based on her outward physical exam they are 99% sure that all the parts are there that would allow her hearing to be somewhat restored in that ear. As her right ear has not been open and stimulated they are projecting she would never have full hearing in that ear. That's ok, our family has been through Jordan's partial blindness diagnosis and we were told he would never play sports...well, you all know the story on that one!
The physicians all asked us if she could talk ~ ummm, yes can this girl talk! They then asked how many words can she say which I responded in Chinese or English? While waiting in between doctors Curtis and I counted that she has learned 34 words in the five weeks she has been home! Wow ~ we knew she was talking but had no idea she had learned that many words in 5 weeks! She will mostly utilize English when she is talking unless she is upset with Bailey our golden retriever...during this time she uses Chinese and based on the tone I'm guessing it may not be words that are considered the "norm" in our house.
Our entire family can honestly say we don't even think twice about Gabriella's special need. It's funny, when we began our paper work for special needs we had listed PDA, PFO (minor heart conditions), extra digits etc..we had not even heard of microtia!
In all the pictures from China, other than the one that did show us her ear, her foster mom tried to cover her ear with her hair...that little ear would never have changed our mind about adopting the child God had chosen for our family...personally, we love it and think it is very cute! I do think it's sad as Gabriella will sometimes try to cover it and act a little self conscience about it ~ when we see that happen we immediately start kissing on both her ears and telling her we love both her ears ~ this leads to giggles and happiness and we then keep moving on with our day that is always full of activities!
I can honestly say our only "challenge" with Gabriella's microtia is this girl LOVES to wear sunglasses and we have a hard time getting them to stay up on her affected side; however we have an appointment with an optometrist next week to get her eyes checked and his assistant has already reassured me we can come up with a solution for this little issue!
Our little princess continues to amaze us every single day and we truly can't express how much we love this little one! When God chooses the right child for your family, half way around the world, it one of the most incredible blessings one could ever experience!


Joanne said...

awwww. God bless. You are now the 3rd family I've met who have adopted a child with this SN. I'ld never heard of it before, either!! I wish you and her all the best :o)

TheDideonGang said...

I know so many with this condition and it really is such a non-issue with many. The girl at the same orphanage as Reagan had this. They do have sunglasses for kids that have bands to stay on the head - geared for a bit younger but our kids used them from time to time.
not as cute as most but work well.

Lilly said...

Hello Teresa,

I am so excited to see your girl so happy and full of life! What an amazing girl God had chosen for your family. We miss Gabriella giggles, dance and such and so blessed that now she has her own forever family.

angela said...

Thanks for sharing your story. My daughter has hemifacial microsomia, part of which means she has grade 3 microtia. I was wondering if you were able to find glasses that work. We have tried many types with bans etc and none work. My daughter is 18months old and loves glasses too!

Kristin said...

Hi I just found your blog when searching for Microtia and sunglasses. Was your optomitrist able to come up with anything? We've tried the headband ones but they slide off too and my daughter wears a BAHA hearing aid on a headband and so that gets in the way too.

I think it's awesome you adopted a child with microtia. It's been on our hearts to adopt our 3rd child and for it to be a child affected with a facial difference similar to our daughters.

Anyway I wanted to let you know that there are several online support groups on facebook and yahoo groups (just search for microtia) with a wealth of information. You mentioned the rib graft technique and I just want to let you know that there are several other options that may work better for her that are less evasive and don't have to wait until she's 6 to start. The californiaearinstitute.com has a lot of info and a majority of families affect go through them (they're worldwide)

Anyway Hi! Feel free to follow my blog too. If you have any questions let me know.


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