I haven’t posted much about Bella lately. I thought this video of Oliver dancing with her, shows her getting to do her favorite thing….spinning!
Bella has been having an off winter. She is still non-verbal, and always will be, so trying to figure out exactly what is going on has been hard. To those of you who are new, I thought I would write a quick explanation of Bella.
Bella was born with a chromosome abnormality affecting chromosome 11 and 13. She is the only one that has this particular makeup that we know of. Which means we don't have much information on what to expect. She has extremely low tone all over her body. Basically meaning anything that has a muscle acts like it is extremely weak. So this affects being able to sit, move, eat, etc. She is non-verbal, nor does she have the capacity to use sign language. We are working on an adaptive form of communication, but we have no way of knowing how far behind she is mentally. We can tell there is thought process up in that head of hers, it's just really hard to be able to prove it. It seems that at nine years old, Bella is more like a 6-9 month old.
Our holiday party was postponed due to an impending ice storm back in January. And can I just say that the whole ice storm just totally threw me off for more than a week. As I mentioned it was supposed to be a huge ice storm and it had a possibility of hitting early Friday morning. So they cancelled school on Friday, they cancelled the holiday party on Saturday evening, they even cancelled churches on Sunday. The ice storm came early Sunday morning and it was minor.
I was supposed to have all the kids out of the house on that Friday so I could have a much needed catch up day. Then Saturday we had babysitters (grandparents) lined up to come over so we could get out to a much needed time away, not to mention what should have been a good party.
Instead all of the kids were home on Friday. On Saturday we did not get out to our party, nor even out of the house for that matter. On Sunday my husband had to work all day, so again I had the kids stuck inside the house. On Monday it was a holiday from school AND AGAIN all the kids were home and stuck inside the house.
I think it took more than the next week to get my sanity back. Also, if I’m being honest here, my house still hasn’t recovered. I just haven’t had to energy to pick up after the kids anymore.
My “real job” has picked up and I’ve been working enough hours that we have justified putting Gray in school. Here she is going off to school for her first day.
She has really enjoyed going to school and the first week she did great. This is her second week and she is a little more hesitant to leave, instead wanting to stay home with mom. I think it’s been great for her to get to play with kids her own age.
Our holiday party did get rescheduled and occurred this past weekend. Even with the three week extension on making the dress, I was still running behind and finished it up on Saturday with only hours to spare.
I may have sewn the bodice twice. The first time I got the dress all finished, tried it on, and ….blaahh. The top just wasn’t right. So I took the bodice all apart and modified it to look a little less school marmish, but still keeping things covered up.
I meant to get pictures of us all dressed up. The party location was at the Nelson-Atkins Art Museum. Would have been a great spot for pictures. Zero were taken. I guess that just shows you we were having such a great time we forgot to take pictures.
And here is side by side of the inspiration photo, so you can see how it turned out. The fabric I used for my dress I had purchased 6 years ago. In fact I had already cut out the pieces to make another dress that was similar. And as much as I wanted the lace trimmed sleeves, I just didn’t have enough fabric for them. I did like the dress I made, and may someday make another one out of black lace. I think I have all the kinks worked out!