Friday, January 27, 2012

updates and ramblings

Mr. Aidan had an appointment with a new neurologist to discuss the possibility of doing botox in Aidan's legs to help with his tone. After the doctor assessed Aidan's tone, she decided that the botox probably wasn't going to help very much and suggested surgery to cut the heel cords, and to see if we can get the baclofen pump surgery soon as well.

In addition to the visit today, Aidan had an appointment with a pediatric orthopedist last week. We've known that Aidan was starting to show some signs of scoliosis, but we weren't sure how bad it was. He had some x-rays done of his spine and his hips. The good news is that his spine isn't as bad as we thought it might be so we're just going to keep an eye on it and follow up again in a year unless we notice any changes before then.
The bad news is that Aidan's hips are completely dislocated. I was so upset looking at the x-rays. I expected some slippage, but I really wasn't expecting what I saw.

The dislocation is not something that just happened. It pretty much happened from the beginning. The constant high tone and posturing during the storming episodes and the continued tone gradually over time caused it. The doctor does not recommend surgery to repair this since Aidan is not ambulatory. Surgery would be painful and would take a very long time to heal as it requires breaking bones and resetting them. As long as Aidan isn't in any pain due to his hips, I'm not willing to cause him any undue stress or pain.

I would love to believe that Aidan could be completely healed by a miracle, but the realistic part of me knows that he'll never walk. I'd like to think that with stem cell therapy he could gain some ability to sit up with minimal support and maybe be able to communicate using a gaze communication device, but we can't afford stem cell therapy. My hopes for him are to be able to live as comfortable a life as he can and try to push him to make what progress he can make. I know that there is a smart little boy in there just waiting for us to figure out a way to help him.

The 4 year anniversary of the accident is less than a month away. I'm not dreading it like I have. It's just a day. The memories are always there. The grief is always there and it sneaks up on you when you least expect it, and it feels like an elephant sitting on your chest. It just hurts so bad and there is nothing you can do to fix it.

Imagine your perfectly normal child with all of his future wide open before him, you have dreams of him going to school, learning to drive, graduating, going to college, getting married, etc. and then imagine in a matter of moments all of that is taken away.  You're left with a child that looks like your perfect little baby, but they're not really the same. The Aidan that we knew is not the same little boy we have today. There are little glimmers of that little boy, of his spirit, but he doesn't even smile the same way he used to.

We have been so blessed through this journey. We've had people who love us and support us praying for us this whole time, and we are so grateful for every single one of you. I hope that you all continue to keep Aidan in your hearts and that you share our story with other families, especially those with small children. I pray that more parents and caregivers are aware of the dangers of water and take more precautions to keep their children safe.

1 comment:

Leslie said...

This is heartbreaking. Which means I can't even BEGIN to understand what it's like for you and your whole family. I'm so sorry. I always am. I'm grateful he's still with you, but it doesn't help to say that. I know.

I'll keep praying that you and Russell are given direction for each need that comes up. And always praying for the miracle.