For the last month, Makenna has been out of her brace during the days; she was only supposed to wear her hug machine at night. We kept to this most days... unless mommy was a little overly paranoid in the morning, or those days where she actually ASKED to keep it on. I followed my instinct on this one.
To say the least, I was a nervous wreck last week. Borderline-crazy, irrational mom. I was convinced her curve was getting worse. I could just tell. And I was stuck in this place of no control... a place I think I'm going to have to get used to.
In an attempt to regain some of that precious control, I tried to prepare for the visit. I have found myself one too many times sitting in a specialist office literally speechless after receiving an update I wasn't expecting or news I wasn't ready to hear. My mind doesn't think fast enough to ask the right questions; so I end up just nodding and following directions. I didn't want that to happen this time. So I sat down and thoughtfully made a list of questions. Well, two lists of questions. One was for CASE A - the curve is the same; and one for CASE B - the curve is worse.
So off we went, list in hand, for her "lucky" appointment. 11/1//11 at 10:15. We checked in at the hospital, waited a little, filled out some paperwork, waited some more, went to x-ray, waited again, and then more paperwork - this time a research questionairre on how the scoliosis is affecting the patients feelings about their personal appearance and if they think they look good in clothes, etc... that was easy in reference to a four year old! We meet some new friends, were entertained by some clowns, entertained some clowns and then they called her back. 10:50.
Height, weight and change into a gown. We talked to the nurse a little and she looked Makenna over. "He'll be in shortly". Makenna drew on the chalkboard to pass the time while Dave and I watched the clock... How close to 11:11 would we get we wondered? And what did Dr. Sturm think of the x-ray. We had seen it, it looked pretty good.. but what would he say about it?
11:08 - "Mommy, I've got to go to the bathroom"... Of course you do. So, I gathered her up shuffled off to the bathroom. I checked my phone when we walked back in the room, Dr. Sturm was following... 11:10
It wasn't very long after he walked in the room that he sat down, crossed his arms over his chest and said, "She looks great". We're calling it 11:11.
She had maintained. There was no difference in her curve. It's been somewhere around 14 degrees since July. Even only wearing it at night. This was very good news:)
He was tempted to have us ditch the brace for good. So, there I sat in a specialist office speechless. I even said outloud, "Wait a minute, I don't have a list for that one!" I hadn't even considered that as an option. Completely brace free? The thought hadn't even crossed my mind.
After some discussion and weighing the situation carefully, we decided we will keep her in the brace at night. And will probably continue to do so. With the HGPPS, we are in completely uncharted waters. There just isn't a lot of orthopedic data out there about early management. The most I've ever gotten from those who've seen the most cases is that the curve is resistant to treatment. No one has been able to successfully manage it with early onset like Makenna. We have. And no one involved is willing to loose that edge.
We go back in 6 months to see how she's doing. Six months is a long, long time... which is why I am going to work on being comfortable in a place of little control:)