Thursday, February 10, 2011

We have one more year.....

.....until some major surgical work occurs for Shea.

Whew!  That is good news! Sort of.....

Earlier this week we went for our annual Cleft Palate appointment.

We were there pretty much all day.....which is normal when meeting with several doctors and therapists.

We met first with the speech pathologist.  She was very impressed with Shea's progress.  Shea is doing so well with her speech that this is going to be her last year of therapy until after her next round of surgeries. Like usual, Shea was very serious when being evaluated by the speech pathologist.  She was concentrating so hard...making sure she was pronouncing words correctly, making sure she was articulating well, making sure her tongue placement was precise.  She was working so hard.  I was so proud of her.  Apparently so was her doctor!

Then she had her hearing tested.  Everything was a-okay.

We then proceeded to visit with {our} favorite doctor.....the ENT guy.  He is wonderful, gentle, kind, & patient!  He seemed to be a tad bit concern about obstructed airflow due to the p-flap surgery she had about a year and a half ago......which then made me concerned.....(of course).....
He wanted to make sure she was sleeping through the night....not gasping for air......hmmmm......suggested doing a sleep study.
He wanted to know if she wakes frequently.......hmmmmm.....
Well, Shea usually wakes up several times each night.  But not because she is 'gasping for air'.  She wakes to check on me.  She wants to make sure that 'I am okay'.  We are still working through some attachment/trust issues.....it is complicated.....but, I think she is making sure I am still 'here' and will be 'here' when she wakes up in the morning.  sigh!
I explained this all to the doctor.....he was so compassionate....so thoughtful......He decided that we should put the sleep study on hold.  Thank God!

Next up.....the big dog......the plastic surgeon!
I love this guy!  He travels to third world countries and works on cleft affected kiddos....I think it is so cool that he does this!  He really gets how cleft affected kids feel.....what they need....why they need surgery....when they need surgery.  He, too, is very compassionate and kind!

He said that Shea will have another year of reprieve....no surgeries.... until her bottom four incisors fall out. Yay!
She has lost one, another is VERY loose....and the two on either side are starting to get a little wiggly.

This is what we can expect next year:
Bone graft surgery to repair her gum line.
Wait for three months.
Then the procedure to bring her upper jaw forward begins......this will require my husband and I to 'turn a crank' to move her jaw forward.....yikes!  Overall this is a better option that a surgery.
Wait three months.
Then begin the first round of braces. (She will have at least three different sets.)

Whew....exhausting.

This was all confirmed by the pediatric orthodontist, who was our last stop for the day!  Who we {also} love.  This woman rocks!  She is so knowledgeable and encouraging.  Plus she always tell Shea that she is beautiful!  :)

Shea is a trooper.  She took all this information in.  She is processing.  I am now waiting for the questions to come.

She heard that there will be some dramatic changes to her face.
She heard that she will look like she is suppose to if she wasn't born was a cleft palate. (This is a hard statement to hear.....I am still processing it.)
She heard that this is only one phase of the many surgeries to come.

She is so brave!

I am very grateful to this team of doctors.
I know they care about my daughter.
I know they have her best interest at heart.
I know they care about her physical, emotion, and psychological well being.
I know.

It's just hard to know that this is all coming down the road.....

She wants to know why she was born with a cleft palate and lip.
I tell her I don't know.
But, I do tell her that God has equipped her to be strong enough to get through all of the surgeries and recuperation.
I tell her that God has a purpose for her and His glory will be demonstrated through her.
I tell her how much I love her and how incredibly proud I am to be her mother.

I thank God for her daily....

12 comments :

  1. What a stunningly gorgeous girl! Just had to say it!

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  2. Did she actually hear the words "like she is suppose to if she wasn't born was a cleft palate?" That would flip anyone out!

    I think she's beautiful and amazing.

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  3. Shea is made in His image. Glorious!

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  4. We just scheduled our first (of many!) appt. to start the long conversation about hearing aids for Li'l E.... There's so much to take in and I'm woefully behind in everything. Unfortunately, that includes my own research and investigations about bone anchored hearing aid and the process it involves. A year reprieve would feel great right about now.

    I'm anxious to hear what comes of Shea's processing - she's had so much going on since I started following your blog (new sister, big sib's changes, etc.) that I'll be curious to see how she processes all the changes coming too. I think Li'l E is too young to do that kind of processing right now, but given how long her process of the hearing aid conversation might be, I'll try and glean from you and your learning curve before ours :)

    Catching up on a bunch of your posts - love all the beautiful pics. Except that Packers post. Ugh. Shoulda been The Eagles against the Steelers. :) I'm just sayin' . . . . :)

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  5. "She heard that she will look like she is suppose to if she wasn't born was a cleft palate. ~ Glad she had you by her side when those words came. I have no doubt that a loving mommy makes any potential sting that could come with such much easier.
    And I just have to say, that smile? Is BEAUTIFUL!

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  6. What a brave, beautiful girl! I've been reading your blog for a few months now and would love to talk with you as you progress through surgeries with Shea. We adopted our 5 (almost 6) year-old daughter from China 16 months ago. She also had a cleft lip and palate and it sounds as if she and Shea have a very similar treatment plan. I've even noticed that Shea and Ava Laurence have very similar facial structure and smiles. We are looking at bone graft to repair the gumline either this year or the next, and then "the crank" will follow fairly soon after. Blessings to you and your family as you navigate the waters of surgery and recovery.

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  7. We've been home just over two months, and are just now starting on this road. I read your words, and I see my future...Caden's future. It's hard for our babies to go through all of this, even if the end result is that they look like they're "supposed" to. These cleft kiddoes are stronger than anyone gives them credit for!

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  8. What a trooper Shea is! She is brave and perfect! She will teach everyone lots of lessons through this process! Love her and yall!

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  9. She is beautiful, and a trooper. Wishing her the best for the future treatments, she seems like a brave little girl.

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  10. Hello Shea~
    You know what?
    When I look at your bopping down the hallway or peering into the classroom door, I smile and thank God for the joy that you bring to our classrooms, school and your family!
    It's only when your mommy mentions your cleft lip that I go, "oh, that's right!" I listen to your mommy bravely tell me about the crank (it's HER I'm worried about!) and I pray for all of the doctors and nurses put into your path for your care.
    Truly, when I see you, I only see Miss Shea; favorite big sister of Avery and beloved child of God (and one of Graham's 'girls'!)
    So, keep bopping down the hall; spreading your joy wherever you go!
    In His Love,
    Mrs. F

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  11. God does not make mistakes. Shea is one of his many miracles.
    So happy to hear she had such a good day of apts.

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