Just want to give you an update about Abbie’s visit to the orthopedic surgeon this afternoon.
God is so good…the news today wasn’t, but He is. I absolutely love the doc we saw today (Dr. B.), because he’s a skilled surgeon, is extremely empathetic and sees Abbie as a person, not a case. He examined her, noting her extreme spasticity, and he, Ray and I talked for quite a while about the baclofen pump, the surgery, and the sequencing of these procedures.
Then, he sent Abbie for Xrays, since the last films are a year old.
As soon as he put them up on the light box, I thanked God yet again for Maria. She’d prepared me for this day, because she told me the right hip was out, and it was…completely. Most of the socket is gone on that side. The left side hasn’t changed much and is still somewhat in the socket. Dr. B. said, “Wow, whoever that was who told you that the hip was out is very, very good..because I couldn’t feel that.” I think my smile said, ” If you only knew…”
He said, “I don’t like it when hips come out forward, like hers are, because they don’t want to go back in. This is going to be a challenging surgery.” But, you know what….he said that so calmly and gently that it didn’t even hurt, it was just a statement of fact, something that we are going to work through.
So, God readied me through Maria, and then God orchestrated things to allow us to have Dr. B do the surgery…since Dr. O., Abbie’s Shriner’s surgeon, is in Afghanistan through at least Aug. With Abbies’ hip completely out, we can’t wait around to begin coordination. We love Dr. O, but we are extremely comfortable at Kapiolani, where Abbie has gotten all of her care and continues to receive therapy,and where Dr. B. practices.
Our good friend, Rob, is Dr. B’s partner and also an ortho surgeon. In the hallway he pulled me aside and said, “If it was my kid, I would want Bill(Dr. B.) to do it.” In a later hallway conversation that included all of us, Dr. B. asked Rob to scrub in and do the surgery with him, and Rob readily agreed. So, Abbie will have BOTH of them…I couldn’t ask for more!
The biggest hurdle right now is finding a person or team to manage the baclofen pump after the neurosurgeon implants it. In yet another stroke of providence, the meeting that Ray had to leave the appointment for was attended by a pediatric neurologist who does manage the pumps for patients that already have them. He is not a fan of having them put in, and has some reservations, so we are going to meet with him to hear his viewpoint. Dr. B. is not wild about them either, but as he puts it “I just don’t have any other answer for spasticity like Abbie’s.” I’m pretty convinced that a pump will have benefits for Abbie, that at least in the next 2-3 years will outweigh the potential problems. We’ll see..
The crux of the matter, as observed by that wonderful DOE person yesterday, is that Abbie is a smart little girl completely trapped in her body, as Rob also noted today. We are going to have to take some extreme measures to provide her relief and release, but I have faith it will be worth it.
I was so very proud of myself that I made it through the whole appoinment without crying once! I think it’s a testament to Dr. B’s manner, the trust I have in him, and the comfort level I now have. He didn’t sugar-coat anything, but we are ready to face what must be done.
Perhaps we’ve waited too long to proceed with the surgery, but many things are showing us that perhaps we waited for just the right time. I told Dr. B. that the documented gains Abbie’s had in the last 6 months will change the way DOE looks at, and must work with Abbie for the rest of her schooling years. She has shown she is a capable learner and motivated girl. Does that make it worth the changes in her hips? Looking at the films, I have to say, “I don’t know”, it’s a pretty tricky trade-off. We could’ve saved more structure and not proven who she is on the inside, but perhaps then she could’ve been a girl with solid hips whose hidden intellect was ignored. In the end, it doesn’t matter, because we can only move forward. So, that is what we are going to do, hopefully putting in the pump in August and doing the surgery in September if we get our dream schedule.
We covet your prayers for Abbie’s health and strength to get through these things. Please pray for her comfort as well, since that right hip is a source of pain. But, always, please pray with much thanksgiving for how gracious and faithful our Lord is. I see His hand so clearly in the details of today, that I cannot do anything but praise Him and relax into the comfort of His protective grasp. If I can end an update like this with a smile, which I am, it is only a testament to the power of your prayers and the greatness of our God.