Shriner’s

A very long day at Shriner’s today…we had a 2:15 appointment, and we finally saw the Dr. at 4:30. I learned many things from him in the first few minutes, which were kind of exciting. I had planned this long speech about how I am trying to balance Abbie’s total recovery. Turns out, he spoke the words for me.

Our PT (who waited that whole long time with us!) and I explained how variable Abbie’s tone can be. Sometimes she is limp as a noodle, able to relax and use her body. Other times she is tight, stiff, and locked up. Dr. O turned to our PT and said, “It’s the cortex override. That’s what make kids like Abbie so unique. They are impossible to predict, giving prognoses is just really taking guesses.” “Cortex override” means that Abbie’s cortex, or the white matter in her brain, is able to override the spasticity in her muscles, this is what normal brains do all the time without us thinking about it. Yet another professional telling us about something that Abbie’s brain can do!!

Dr. O explained that children who are injured during their childhoods are much different than children who are born with brain challenges. Their spasticity is often variable, like Abbie’s, and it makes treatment decisions more difficult. He nodded his head as I explained that I have been trying to strike the balance between her orthopedic needs and her overall recovery…not willing to drug her with Baclofen because it hid her potential, not willing to do serial Botox because I think it would interfere with the healing process that is ongiong. I was very pleasantly surprised that we seemed to be coming from the same direction.

Alas, the day was not over. We headed to the X-ray waiting room where I smiled about the cortex override…Abbie’s brain IS healing, and this is yet another indicator! We had films taken of Abbie’s spine, which is fine, and her hips, which are not. The right hip is still about 80% out of the socket so that hasn’t changed since last year. What has changed, however, is the socket that the bone fits into. The angle on it is changing, which leads to outcomes and options that are worst, worse, and bad.

If we leave things alone the hip may totally dislocate. This would not be all bad, but could result in spine issues as Abbie sits on hips that are uneven. What would be worse is a hip that is almost out, but not quite. As it hits the socket improperly, both the cup and the ball become disfigured and can never fit together again. This can also be quite painful. He described one surgery where they just remove the ball at the top of the femur, which can result in very floppy hips, obviously, and other problems. Lastly, we went over the surgery he has described to us in the past…removing about 1″ from each femur, repositioning the balls and using a blade to secure it to each socket. He will also now have to do some reshaping of the right socket.

We asked many, many questions, and he showed me the stainless steel hardware. It is a 5-hour procedure, and this is NOT what we want to do, but after looking at her films, we do not see any option other than surgery at this point. We are hoping to schedule it in mid-September. She will be in a chest to calf cast for 3-4 weeks post-op, so it will be a very trying time for her, and for all of us. Please, join with us in beginning to pray now that all would go smoothly, that we would get the results we are hoping for, and that her pain would be as minimal as possible.

I am still in an emotional freeze on this issue, just moving forward with doing what is necessary, not allowing myself to think about how I feel about it. I will be relying heavily on God’s grace to get us through this, especially the painful post-op part. I can’t escape the thought that I will be making her suffer. I asked Ray and our PT, “What did I do wrong? None of my other near-drowning friends are dealing with this.”

Ray said, “Whoa, stop! Many of the other kids were younger when they were hurt and haven’t grown as much. Others have chosen to do Baclofen and Botox and things we didn’t really do…what we have gained is Abbie’s cognition, awareness, communication..who knows how much of that we would’ve gotten if we’d made other choices.” Our PT agreed, and this did make me feel better. There are no right answers, although at times it can feel like there are many wrong ones.

Please pray for our family, as I sense that this next 6 weeks could be a long period of holding our breath. Abbie was injured so suddenly, and all the following surgeries happened quickly, that I’ve been spared a prolonged season of dread until now.

I must tell you I smiled, though, today, knowing that we are not facing this alone, and will be covered by your prayers. That means more than I can ever say!

One thought on “Shriner’s

  1. I can’t even imagine how very difficult it is to make decisions regarding Abbie’s health. I can pray for you and I do, each day. Obviously the decisions you’ve made since Abbie’s injury have been good ones considered how she’s progressed. It sounds like you have a very good doctor selected for her orthopedic needs. As a parent myself, I have made decisions for my children that weren’t always easy, but never of the magnitude that you make for Abbie. Personally, I believe that any decision you make, after first seeking direction from God, is a right decision. I will be praying for those specifics that you’ve asked over the next six weeks.
    In His Love and Blessings,
    annb

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