Monday, January 23, 2012

Questions asked

I am a member of an online group of parents raising children with Rhombencephalosynapsis. It is a wonderful place to compare notes, ask questions, gather information, etc. I consider it a very valuable resource. Recently a new member has joined and she has been a delight. She asks plenty of questions and drums up a TON of great conversation with all of the members. Many of her questions have lead to some thoughts about great potential posts. They are all things that new RS parents might want to know about.

So I am going to try to spend some time posting about these questions and our experiences with these topics.

The first topic was when our children started walking. Here is our experience...

Abby didn't meet any of her milestones on time. NOT ONE! We had her in physical therapy from the time she was 4 months old because of this. By the time she was 18 months she was FINALLY crawling, rolling over and starting to stand up. It was a long road to get her there but we got there. Unfortunately there was minimal effort to walk.

Because we had spent so much of her life playing catch up I decided it was time to be proactive. I researched, I consulted, I talked to our PT and docs. Then I got Abby a walker.

People constantly stared, asked questions, prodded, etc. It drove us a little nuts. She was so tiny for her age they had no idea she needed the walker. COmplaining aside it was amazing for her. She only needed it for a few months and she had made so much progress she started walking on her own. At almost 22 months she walked!

1 comment:

  1. Hi, I'm having a hard time finding the support group. The only ones I've found haven't had any messages for a couple of years. If possible could you give this.

    Thank you,
    Jean Ann