A loose definition. Especially after children.
There was definitely a delay in updates after our last appointments. There were a lot of things to think about, more tests to be done and additional information to gather. In January we went to Minneapolis to get a second surgical opinion, re-size Hailey’s brace and have some body work done on her.
I wasn’t too impressed with the surgeon, to say the least. It seems as though bedside manner has completely gone out the window, but at least she was straight to the point. We’ve done a lot of processing these past few months, so I’m going to sum it up quick and simple.
We have one surgeon that says brace and then surgery at age 4-5. We have another surgeon that says no surgery at this point. Wait until it gets really bad, then we’ll do surgery. (great idea) We’ve always been on the non-surgical boat and it still seems to be floating, so we’ll hang out there for a while.
We had testing done on Hailey’s kidneys last month. A significant number of children with this spinal deformity also have congenital kidney and heart conditions. Basically, she could have had any form of kidney malformation or simply had them not working and we never would have known. Good news is, she has two fully formed, functioning kidneys. Phew. If you’re immediate family and getting upset we didn’t tell you, be understanding. We didn’t want to freak anyone out if there wasn’t a reason to. We’ve had basic cardiac evaluations. It seems to be the opinion that we would definitely notice a congenital issue, so we aren’t chomping at the bit to take her in for a ton of tests. It will probably be in the future though.
We’ve had mixed reviews on the function of the brace. Surgeon says its crap. “Junk” was the exact wording, I believe. You can probably guess how well that conversation went from that point on. There has been some confusion on measurements, landmarks and specific evaluation techniques between docs.
We were under the impression that her curve had progressed almost 7 degrees from the January films due to a miscommunication between doctors. However, when I got back from Atlanta last week, I randomly swung into the radiology dept at the chiropractic school and one of the DACBAR docs that I know well took the time to go through all of our films with me. I trust his assessment and opinion. It seems as though instead of a 7 degree progression, there was actually an improvement in the curve. Meaning a decreased curve from when we started. Now, it can be very subjective and there can be confusion from one doc to the next on where the measurement actually is, but I’m encouraged. We’re going to a Scoliosis seminar this weekend, so we’ll take the films and hopefully get some expert opinions.
I should say, by they way, that if that is the case, if it has truly made an improvement in the midst of a huge growth spurt, that is a massive, huge, extreme win! I don’t believe that it has never happened before, and has really never been tried before. Please let this be the case. I’m not an expert, so I’m waiting on them to confirm.
Also while in Atlanta, I found another doc that is willing to help us re-fit Hailey’s brace. We’re under the impression that the one we have was made with larger straps than necessary, which is one of the major complications. It leaves sores and tears at her skin, so we end up not using it. We haven’t seen him yet, and we’re still getting him information, but I think we might be able to make some alterations to the brace that will help it function better and allow her to do normal kid stuff. To give you an example, the brace the way it is won’t allow her to go down a slide without toppling off and we really have to watch her going up and down stairs so she doesn’t fall. It would be great if we can get some changes made. We’re flying to the east coast at the end of April for three days to get that done.
After that, I’m hoping to continue taking classes, learning more options as a doctor myself and continuing to specialize in this area. It’s a lot of information in a short time. Hopefully, we can find a good fit on the east coast and just take her out every six months or so while I manage it from here. Praying that is the case. I swear the next flight I take, with or without the family, will be for an extended vacation on a beach without any medical, chiropractic or bracing appointments to be had!
Please pray that this is where we need to be. On another good note, I think we’re finally coming to terms with all the chaos. It’s amazing how fast things can turn around after hitting bottom. This is where the rollercoaster stops. It’s time to put on the brakes.
One more thing. You probably haven’t gotten a thank you note yet, but you will. It’s not for a lack of trying. I swear, if I could just get through two without ending up crying! In appreciation of course 🙂 I hope you all know you mean the world to me and we can never thank you enough for everything you’ve all done. I feel we’re finally getting back on track. Please don’t be sad or offended that it’s taken me, oh, you know, over three months to formally let you know.
Okay. That’s it. Keep this stubborn little girl in your thoughts and prayers. Even though she puts on a good front, she needs it. I suppose she gets that from somewhere, huh?
Sorry, that wasn’t quick at all.