Tiana's visit to Shriners

Tiana had an appointment at Shriners yesterday. It was her three month post-op checkup, and she was scheduled to get her brace off and have her activity restrictions lifted...

That's in a perfect world though...

Thank god we prepared her for the eventuality that she might not get the brace off, because that's exactly what happened.

So let me start at the beginning. Tiana was supposed to go a week and a half ago, but her doctor has had a personal medical emergency that will keep him from working for two months. So they did a quick shuffle and rescheduled her appointment for yesterday with another doctor.

He was a very nice man, and we brought him up to speed on Tiana and her progress so far, and then let him know what her Doctor had told her would probably happen at this visit. He put her new x-rays up on the board next to her x-rays from two months ago, and immediately my heart sank. Her back is all out of whack again.

Now part of that is to be expected, as she grows the rods don't grow with her, so her back will start to curve until the rods are lengthened. The problem is in the amount of curvature that Tiana has gained since her surgery. In a nutshell, she's growing to fast for the schedule.

When Tiana had her surgery, her back was at a 67 degree curvature. At her one month pre-op appointment, the X-rays showed that the surgery had corrected her back to about a 42 degree curve. Now, two months later, her back is at a 56 degree curve... That's almost 15 degrees in two months, and she's got two more months to go before her lengthening surgery is scheduled.

The doctor was concerned that as she continues to grow, and the curve progresses as she approaches her lengthening procedure, that there will be too much pressure put on the rod hooks, and that she could be in danger of popping a rod. So he's keeping her in the brace to alleviate that pressure, and keep the rods firmly attached to her spine where they're supposed to be.

The good news is that she doesn't have to wear it 23 hours a day anymore. She can take it off when she's sleeping, and just laying around the house. She can also take a bath, which she was really happy about since she doesn't like showers. She was cleared to start swimming lessons, but not to start playing Soccer, or even go back to gym class. Yet, having the good news mixed in with the bad was enough to make it a little more tolerable. She took it well, she was disappointed, but she's a trooper.

So that's the latest update... I wanted to share it with you because so many people ask about Tiana and how she's doing. It's wonderful to have so many people who care!

Hugs,
Anne