Shriner's

Yesterday was Abbie's follow-up for her Botox treatment at Shriner's. I knew I would have lots of non-Botox questions for her orthopedic surgeon and was incredibly blessed to have Abbie's PT Lynette join us for the appointment. She drove into town from Ewa Beach on her day off -- just typing that makes me cry.

Anyway, first the good stuff...Abbie's knees are bending very well; easily past 90 degrees on the right and about 90 on the left without any kind of warm up. Dr. O. said that what we are now seeing is not the effects of the Botox but Abbie's improved range that we gained from stretching her while the Botox was at its peak. In other words, what we've now got she should be able to keep. Her feet weren't as great - just to neutral, but we think there is an additional muscle group involved that we are going to try to treat with the next round of Botox, which will probably be in October.

Dr. O described a tendon lengthening surgery he does where he basically nicks the tendon allowing it to stretch but does not "release" the whole thing by severing it completely. Depending on how the next round of Botox does, this is something we may consider.

Then, it was time to talk about her hips....again. We got her previous films out, which show her right hip about 75% out of the socket. The left hip is also subluxating, but not nearly so much. Dr. O. told me that we didn't absolutely have to have the surgery by the time she is six, that just makes it easier. If we wait until she's 11 or 12 the cup portion of her hip socket will have lost it's ability to remold around the ball once it's reinserted, which necessitates surgical work on both the cup and the ball. If we do it while she's young Dr. O. will only have to work on the ball, making the already major surgery a little easier.

I mulled that over, and then we talked about an aspect we've not previously discussed. The head of the femur, the "ball" is supposed to be at an angle to insert into the cup. This angle allows for the proper movement and fit of the joint. The head of Abbie's right femur is practically vertical, there isn't much angle left at all. As I absorbed that I said, "So, extra weight bearing, Botox, stretching, special exercises...none of that is going to make the angle reappear..." The answer was "no". In my mind this moved the surgery from something we may try to avoid, to a certainty. I was alright at this point, the sadness and anger would come hours later.

Once I realized the surgery is inevitable I decided it will probably be better for Abbie to do it sooner rather than later, while her hip sockets can remold themselves. I was fearing, after corresponding with a near-drowning family whose daughter just underwent this surgery, that it would mean 8 weeks in a chest to ankle cast. Dr. O. said they do 2-3 weeks max, and that's really just a comfort measure for the patients. He said they get the hips so well fixed that they don't need a cast to hold the hip in place, but the patients were uncomfortable without an initial cast.

So, within the next year we will most likely take Abbie in to have portions taken out of each femur and the heads of her femurs secured to the hip sockets with metal blades. The metal screws and blades will stay in for about a year, and we should only have to do this surgery once. As I told my small group last night, through tears, I still have to believe what God has told me about Abbie, even when everything I see shouts to the contrary. So, I must still believe she is going to be a walking testimony someday, and this surgery is our chance to ensure that when she walks it will be as easy and painfree as possible.

The anger...it came in waves that evening as I realized that this was almost certainly avoidable. The heads of the femurs lost their proper angle because Abbie didn't have enough chances to bear weight on her legs. I raged at everyone, from the beginning rehab folks who didn't have the proper equipment (it was 8 months before we even got her into a stander), to the case managers who wouldn't submit a request for one since we couldn't even get life/safety things like stand-by trach devices or a bath chair, to the surgeon who saw Abbie 2 months after her injury but didn't propose any preventative measures like sleeping with a hip pillow or buying a stander....but mostly I raged against the system of payors who drive everything, both private and governmental. They never see Abbie, they don't have to live with the consequences of their denials and abhorrent system functioning, they certainly don't have to endure her physical pain. There is no accountability for them and no recourse for Abbie. Abbie has been failed by everyone, including me. If I would've known early on how absolutely vital this was, we would've come up with the $4000 to buy one for her. This same anger is what is driving me so hard to get the Hope Program going, but I cried bitter tears last night that much of the benefit of it will be too late for Abbie.

Typing this is getting me to the same emotional place again, so I need to move on to tell you how we have again been carried through this. I want to share another email from my friend Julie, who recently wrote to introduce herself and remind us that none of this was an accident. At the end of that email she said she was going on vacation to South Dakota and would pray for Abbie while she was there. This is part of the note I got upon her return.

I wrote you a couple of weeks ago and told you that I was going to South Dakota and that I would pray for Abby while I was there. I have to tell you what happened to me while I was in South Dakota. I was shopping in a gift shop at Mt. Rushmore to buy some gifts for the daughter of my best friend whose name is Anna. They had some beautiful Indian bead bracelets that had names beaded into them. I looked for Anna but they were out as I turned to walk away from the display my purse caught on one of the hooks and the bracelet that said Abby fell off and onto the floor. It gave me chills. I picked it up and bought it and wore it for the rest of the trip. On our last night there I bought a helium balloon with a smiley face on it and I tied the bracelet to the balloon and I sent it off to God with a special prayer for Abby. I just know that the bracelet falling off of the rack wasn't an accident. Thank you again for allowing me to feel so much love through your daughter.

I just imagine that balloon flying high above the heads of four American heroes, floating up to God. And, it reminds me that all we think we know or understand is so far below what God thinks, knows and plans for us.