Tuesday, May 5, 2009

The Good, The Bad and The Hopeful

I've been trying to get my thoughts straight to compose this blog entry. Many people have asked about Lucey's appointment and I've procrastinated in answering. I will try and make it simple for my sake and for yours. I'm sure you don't want to read a bunch of complicated mumbo-jumbo.

Lucey has Hemifacial Microsomia (click it to learn more about Lucey's facial deformity).

I'll start off with the Good:

1. On May 1-- Lucey met with the Craniofacial Team at Children's Hospital. Here is a picture of Lucey Lu and I waiting to talk with the director/surgeon of the Cleft Palate and Craniofacial Institute at St. Louis Children's Hospital (our last stop of the day). He will be the one to do all of Lucey's surgeries. Our day started early. We were at the Hosp. at 8:15 a.m. and finished around 4:00 p.m. It was a long day and Lucey was a perfect angel.

2. Ron made it home the night before after being gone for nearly 3 weeks. Praise God!

3. Andrew and Christian went with us and did not complain one time. In fact, they did their homework like they were told and then played some games and took a walk around the hospital. They missed their dad so much and wanted to spend time with him even if it had to be at the hospital. Ron played games and walked the hospital with them when we were waiting to meet with a specialist. There was quite a bit of waiting but nothing too major.

4. Each team member was very compassionate and had such nice things to say about Lucey and her development. Lucey makes everyone smile.
5. Lucey had a hearing test and did great. She sat on Ron's lap in a sound proof room and she understood what she was suppose to do right off the bat. She is a sharp one. Her left ear hears within normal range. GREAT news! We received a brochure on the BAHA (click BAHA to learn more) hearing aid for her right side. It's a bone conduction hearing aid. We are waiting to hear more about that avenue. (BTW: Lucey would wear it on a head band while she is young)
6. We feel confident in the team and feel very confident in the surgeon who will be working with us until we are old people. This is a long process involving many years for Lucey. Which means Ron and I will be 60 or more when we say good-bye to the surgeon.
1. Lucey's CT scan.... Where to start? The obvious, Lucey is missing a functional outer ear, an ear canal and a middle ear. It appears that she has an inner ear. What she has is an ear remnant which is located very low and forward. Dr. K said, "It's out in no man's land." True. Dr. K. gave us several options with that ear remnant. It's really not usable in it's current location. We don't want to put Lucey through many more surgeries than necessary to save that piece of tissue and then to have more scaring and a possibility he would not be able to use it in the end (for an ear reconstruction).
2. What we can't see is that Lucey is missing a large portion of her right jaw. Lower and upper. Dr. K has classified it as severe. Lucey does have her facial nerve. (Yes, the big smiles!) She is missing part of her ramus (lower jaw) and zygomatic bone (upper jaw) She is also missing cheek tissue...We knew this....we can see and feel her to know this. The CT scan took our breath away. Ron and I had eyes as large as saucers as we looked at the 3D imaging. Neither of us was prepared for what we didn't see. Dr. K was compassionate. He said it was bad. There is no great solution but there are ways to make Lucey look and function more normal. Right then I thought....the ear is secondary to her jaw. We believe the jaw needs more attention right now.
Ron and I are praying for wisdom as we begin to make critical decisions for Lucey and her future. We have resumed our prayer walks. Last year Ron and I would take nightly walks together lifting up in prayer our family needs, needs of friends and most of all if we should adopt. (It's obvious that prayer was answered). I love walking with my husband and praying with him--it makes me feel closer to him and to God. Here we are, over a year later and we are strolling Lucey along with us and praying for her future. We have confidence that the Lord will give us direction like he has in bringing her into our family. We are human though and this is not easy. No one said it would be easy. But, we feel so incredibly blessed. The boys feel blessed. That warms my heart. They love her so much. We love her so much. We are all ready to help Lucey through her journey by giving her unconditional love, support and a future. We feel even more than hopeful....confident! Confident in the Lord to guide each and every step we take.
If you have any questions...I'll be happy to answer anything that comes to your mind. Some have asked how many surgeries will Lucey have. I asked that question too.....Dr. K explained that we don't go to the store and buy everything we see....if we did everything possible to "fix" Lucey then it would be easy to come up with 30 surgeries. No kidding....that's what he said. But, we are not going to "buy" everything. We will take it one step at a time and do what's necessary for Lucey. Doing what's best for her and her future. We want to give her wings....

On a total different topic....
We are all tickled that Lucey is taking a liking to her books! Whooohooo....she stacks them all up on the couch and then looks through them one by one--upside down too. We all LOVE to read in this house and Andrew, especially, was worried that she was not interested in books. He has said that he wants to be the one to teach her to read. She's a Tucker and she'll be a reader! ;-)
One more thing...Dr. K is ready to perform two of the surgeries this summer (at the same time). He said we could take time to think about it. He gave us his phone number and email in case we had more questions. He said he would make time for Lucey so not to worry about getting on his calendar at this time. Ron and I are praying through this strong possibility right now. Please pray with us as we make this big decision. Thank you so much.
With love,


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  2. Beth - thanks for sharing. I know that Jia's jaw is probably the most significant issue as well.
    Have you looked into the microtia/atresia yahoo group? Lots of info and support there, even adults with condition.
    Glad you're forging ahead with all of this, I will be follwing in your footsteps soon I hope!

  3. It's overwhelming, isn't it?! As someone who has never had medical problems, my daughters have taught me a new respect for people with truly severe medical conditions.

    I do medical transcription for a large ophthalmology facility in Northern Colorado. One day when I was delivering some work, I talked with a mom whose Korean son had only half a face. We were in the surgery suite, and the pediatric ophthalmologist was in the process (many surgeries) of the tedious construction work. It has been amazing to watch the step-by-step handiwork and to see how this family has literally loved this little guy to health. I have no doubt that you will do the very same. I will pray along with you for wisdom in making the best decisions for little Lucey.

  4. Thanks for posting about your visit with the craniofacial team. Our daughter Lydia also has UMA and HM but it's a very mild case of HM. I am trying to learn more because I know we will request this special need again in the future. I had never considered it could affect the jaw.

    Andrea in CO
    Navy wife

  5. My Hannah has HM, but luckily has a mild case. She will have to have jaw surgery and at least 2 sets of braces, but it is do-able. I am looking forward to following your journey with your China princess. I know ours has changed our life!!

  6. Thank you, Heather, for your post...what an incredible blessing we have in Lucey and I know you have in Hannah...Hannah is beautiful. These little ones will go through a lot but I suspect they are both tough cookies and will do well. I don't feel alone at all with such a great network in blogging. I'm in awe.

  7. Just catching up on your blog today - a month later from when you posted. Thank you for sharing. Lucey is such an adorable, sweet little princess! I hope someday I am lucky enough to meeet this charming little sweetie! Stay in touch - Joanne Bergstrom


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