Adelaide - 1 in 15

I always knew I wanted a child who was original and special, little did I know that we would have a child who was 1 in 15 in the world. I have posted here and there about some of Adelaide's medical mysteries and then I stopped blogging and talking about it because it was too tough. When I say tough, I mean mentally. I'm going to make this long story, short or else I'd be typing for days.
I think everyone knows that Adelaide has been seeing a Pediatric Opthamologist and we have had the brain scans and everything else done. So we'll fast forward to more recent months...delays.
One of the downfalls of taking your child to daycare is that you see what all of the "other" kids are doing. Grant and I spoke a lot about every child being different on when they hit certain milestones and quite frankly I was tired of people pacifying me with "in her own time, she is just being stubborn". So we went to our regular Pediatrician and we discussed some of A's developmental delays. They were also alarmed and at the time she was shaking at certain points, mostly around sleep times. We waited for 2 months and finally got into a Neurologist who said she wasn't having seizures, but highly suggested we started seeing a Geneticist and have A's DNA analyzed along with a whole slew of tests.
Blood work was done and 3-4 agonizing weeks later we got the call that A does have a genetic disorder. No, it's not something you have ever heard of before because there are only 14 people in the world who have ever reported the issue. Of course there are plenty more that more than likely have this issue, but it was never found. The problem when you have something rare is that there isn't any information to go along with the diagnosis of an interstitial deletion of the short arm of chromosome 8.
What we know at this point is that we live every day just like anyone else. Adelaide will be 17 months on Monday and still can't walk. We started taking her to physical therapy in November which was a colossal failure and now we are trying to get into a state run program. She isn't treated any differently at school than the other kids other than she physically gets tired much more quickly and she crawls instead of walks. The other 1 year olds protect her and call her baby since she is so much smaller than them and can't stand.
Moving beyond physical limitations, Adelaide is super cute, opinionated, great comprehension and the fastest crawler you will ever see.
Grant and I will be getting our blood work done next week to test our genetic makeup before deciding how and if we will grow our family. We haven't reached a verdict either way if we have passed the gene on to Adelaide or if it was a fluke whether we will have children or not. The test results will take approximately a month to come back so until then we keep loving life with Tootie girl.