Friday, December 16, 2011

Keep Calm and Carry On

I want to update you all on Ella and her of speech/health stuff. After 2 years of driving around the state of Indiana searching for an answer, we found a surgeon who had some ideas. It only took about 5 minutes for him to win our approval. We immediately scheduled surgery for the week school got out in June and began mentally preparing for what was to come. This was not a quick fix, but it was a chance-- a long term commitment to her communication. There was an easy surgery that might work and a complicated, long surgery that probably would work. We trust him and agreed to try this simpler surgery first in hopes of avoiding the complications that can arise with option # 2, like life-long sleep apnea.

I have to brag on the the doctors, nurses, assistants and everyone at Peyton Manning Children's Hospital in Indianapolis. They were amazing. Ella has been a patient at several different hospitals and experience wise, this was hands down the best. She nor we even had a chance to cry or be scared during our whole trip, as they kept us smiling and eating orange sherbet the whole time. If you need a good Cranial Facial Clinic in Indiana, skip the trip to Riley and go see the Dr. Blocksom's team. We have been so impressed.

The surgery went perfectly. It was a procedure called a Z-plasty, where they were able to make her palate 75% longer.

And she got to drive herself to surgery in a jeep.
The hardest part for us was after surgery. Ella came home needing to be spoon fed for 8 weeks. This is quite difficult for an independent woman who goes to a Montessori school! But, she didn't want to tear out her stitches and would remind us when we accidentally handed her an utensil. Right away, things got progressively worse with her speech. Her muscles have all been moved to the back of her mouth, which means it is relearning time again. One step forward, two steps back. And all the progress she had made with sounds and being understood was pushed back to 2 years ago. It was a haunting deja vu. But, emotionally worse because she is so much smarter and aware. We cried a lot together this summer (partially from double pregnancy hormones) when I couldn't understand and she couldn't be understood. I imagine it was 1% of what it would be like to be deaf in our hearing world.

But in the past few months, we have seen small improvements. Her speech therapist has seen a bit more movement from her tongue and we have a V, people! Anytime we can add a consonant to her repertoire, we are opening the door to so many new words that people can now understand. It's not perfect; it's still completely emotional and near impossible for strangers to get more than a couple words. But, all we wanted was a chance and I think Dr. Blocksom gave us that.

Nick is set to take her back to Indy in January for another follow-up with the surgeon. At this time, they will scope her throat again and see if the muscles will ever be able to learn to work. If not, Plan B, which really feels more like Plan Z. Another surgery in the summer, this one much longer and more intense. A last resort for now. But I'm hoping not to go there. Most days, the hope is all we've got left. I know hope is never a promise, but God hasn't abandoned us yet and if he can grow an "impossible" muscle in her eye, then helping some muscles move doesn't feel like such a stretch. First day of school 2011

In other news, Owen is a kindergartner this year. He is eagerly and impatiently learning to read. He loves math and is quite good at it. My math skills will be useless to him after 4th grade and I'm serious! He is a good friend to everyone and overflows with compassion. He has been writing "I heart Angie and Nick" on everything. His future plans are to be a ninja and be married. That is about as far as he has figured out.

Sometimes I feel bad thinking of him reading this someday and wondering why I didn't write more about him. I hope he then finds this sentence: Owen, without you, I wouldn't have been able to get out of bed during all these hard things. Your heart is made of pure gold and we love you, not because you were easy and a parent's dream, but because you are a light in the dark. And yes, you are the bomb.