Late last month we traveled back to Birmingham for a few days.
Michael Luke was able to do some networking on and off campus at UAB and I was able to attend a really great seminar on using essential oils to support your hormones and soft tissue. We didn’t plan a trip just to run around town like mad men for a week though. All these events just happened to fall within the days we had blocked out for Esther to have another surgery.
For those of you that have been following Color Transformed Family for a while you may remember last year when she had a series of surgeries. If not, you can go back and read about her “special eye’ here and what a brave girl she was with her first surgery and throughout the following months here and here.
When we went back to her ocular plastic surgeon this year we really hoped to set a date for the bone reconstruction of Esther’s series of surgeries. Instead, we found out that Dr. Ray had moved to Virginia to work in an under served area. We loved Dr. Ray as a doctor but we weren’t terribly bummed that he was gone because now we get to see Dr. Grant. Dr. Grant is who Dr. Ray trained under and he has even more experience with Asian eye reconstruction because he trained in Seattle were thee is a larger Asian population.
Dr. Grant was pleased with the progress that was made last year but felt before moving onto bone reconstruction we needed to do one more tissue expander. The purpose of the expanders is to stretch her good smooth skin so that the scarred tissue can be removed and only beautiful healthy skin remain. We also found out that he wants to wait on the bone reconstruction surgery until she gets a little older and her front baby teeth fall out. Her permanent teeth have already formed and he wants to wait until they drop down so that he will have more room around the eye socket to work with.
So while finding out we have to wait a little longer was a bit of bummer it’s still nice to know that we can work to get her even more smooth skin on that beautiful face of her. I do pray that all these surgeries are over and done with before her peers start start to notice her deformity and then use that to make fun of her. She’s still at that magical age right now where most children don’t notice and if they do they just point out something is different and move on. It’s like saying, “She’s wearing a yellow shirt and I have on a red one.” They just verbalize the difference. Her self confidence and self-esteem are still strong and she sees her self as beautiful (because she is) and I don’t want that to change). That’s one reason why I make an effort every day to let her know how beautiful she is and even more how beautiful she is on the inside because that’s what really matters. Mom’s this is so crucial. We have to pour into our children before the world begins to rob them of their confidence.
Just like last year we prepped Esther mentally for her upcoming surgery. I know each child is different but she loves facts and wants to know every detail so we don’t hide anything from her. We run through the series of events over and over so that she can process what awaits her. For the most part she took everything in stride and like last year looked forward to getting her own bed, watching an endless supply of Disney, and having breakfast and juice delivered to her room. Seriously, this girl loves to be waited on hand and foot!
About a week before the surgery it became evident that deep down she was nervous. We began to up the amount of times a day we applied the essential oil blend Tranquil to her. At one point she was even waking up around five times a night screaming and crying. She was never truly awake so just going in her room and touching her was enough to calm her. My heart broke for her in these moments because I knew then how brave she was truly trying to be.
Occasionally, she would tell us that she was nervous but we were always quick to reassure her that everything would be ok and in the end there would be Disney Channel and juice. Even the morning of her surgery she woke up excited to Children’s of Alabama. The previous year when she donned one of her fanciest outfits but this time she was fine with leaving her pajamas on and enjoying the relaxing morning.
Noah and I dropped Michael Luke and Esther off at the hospital and then I drove Noah across town to have breakfast at one of our favorite spots, Magic Muffins.
But like I mentioned earlier I knew how she really felt and everyone else was about to find out.
They came to wheel her away for surgery and she barely looked up because she was playing some “decorate your princess” game on the iPad. But before we made it to the “bubble wall”, this wall with air bubbles and lights in it, to say goodbye she screamed out “Mommy, I’m getting a little scared.” So I rushed up to walk beside her and I soon as I did she grabbed on and started trying to jump out of the moving hospital bed. When she’s scared and upset she’s a strong little girl and there was no getting her back in that bed. I was trying my best not to cry too and just about lost it when the nurse took her from my arms and carried her away from us.
Her body remembers. It remembers everything about her last three surgeries and it remembers “the day she didn’t feel like smiling”. Her body knows that the next couple of months just might be difficult and a little painful and honestly who can blame her for wanting to “jump ship”.
The surgery went well and this time they even included a skin graft. Dr. Grant took a sliver of skin from behind her left ear and moved it to her left eyelid so that it can close more. This offers her eye more protections, reduces the amount of times a day we need to apply eye gel and eye drops, and preps her eye for some of the upcoming work.
Children and their resiliency amaze me! Once again all she needed was Tylenol with Codeine one time after surgery. One time! I’m sure it would take a lot more for me. We supported her healthy skin afterwards with Lavender, used my Sandalwood Moisture Cream on her neck where the medical tape had been, and applied DiGize to her tummy to ease feelings of nausea.
I spent the night with her and enjoyed some special cuddling time with her and somehow managed to get a decent night’s sleep in the hospital. The next morning we were given permission to discharge before 7:00 but Esther insisted on staying and eating her breakfast first. And who can blame her… I had ordered her a feast!
In a few weeks we will start the injections again and they will follow almost the same schedule as last year. Dr. Grant will give her her first injection and then Michael Luke and I will do most of the others at home ourselves. You know… just your normal family sitting around watching tv while poking a needle in their daughter’s head. It’s true! Barney was the best distraction for her injections last year. She and Noah looked forward to those nights because they were allowed to pick an episode of Barney to watch. I’m not a fan of Barney and could really do without those songs but if I worlds again this year I’ll endure it.
Like last year, I more than likely won’t share a lot about our experience as it happens but you can expect to continue seeing her beautiful face in my pictures. Thank you everyone for all your support and prayers.
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