Gracie's singing class

Gracie had singing class tonight (it is through recommendation from our friend Amanda whose daughter GiGi loves it) through WeJoySing. She loved it! She doesn't actually sing, obviously, but they get to play with instruments and we sing to them and play with them. It was fun.

I was sad though. In one part of it they asked the parents to help the babies learn to clap...problem. Gracie kind of claps. She can't really clap because she only has a palm on that one hand and it is a lot smaller. I was sad because when it is just us or just an outing at the mall or something it isn't an issue, but tonight was the first night that Gracie was noticeably different from her peers. She didn't care and no one else did either, I was just sad.

After the class was over, the lady in charge came over and was talking about how cute she is. I was thinking about a nice way to bring up the fact that I would need to make modifications for her sometimes and the lady stopped me and said, "Oh sweetie! I knew about her hand. My owner had looked at your blog and told me about her condition. It's fine. You do whatever you need to do for her." It was sweet. Sweet that the owner had done all of that and sweet what the woman said.

www.wejoysing.com

4 Months

Four Month Stats:
11 lbs 8 oz (8th percentile and counting!)
23.5" long (24th percentile)
16.25" circumference

She goes back in mid-January for her 6 month check-up.

Request Denied?

Dave and I had applied for SSI for Gracie. I did all of the paperwork and called yesterday to make an appointment to see someone (as I was directed). The guy at SS goes to make my appointment and asks me the said questions. He paused after I answered the income question. He said we'd be denied with my income alone. Huh? What does it matter? Does us being successful mean that her having a disability is okay? WTF. He was really nice about it, but still. He likened it to welfare at a federal level and said that he was willing to make the appointment, but that we'd just get there and wait all day to get denied. Classic.

Allow me to elaborate. We weren't trying to "get money". We were trying to get her assistance. We planned on banking any revenues and using it for school, surgeries, prosthetics, etc.

The resolution was this, he said to have her apply on her own when she turns eighteen. My question is what will happen then? Some sort of statute of limitations, "Um sorry Miss Chamberlain. You had to apply earlier in life..."

I am thankful for...

Gracyn
Dave & Nate
The last year
My health
That Miles is good with Gracyn and we didn't have to give him away
Support from my friends
My family
and that we are blessed.

A girl and her hat

Sunday morning sleep in

A girl and her kitty

This is Gracyn w/Miles

Naming Ceremony

Gracie had her naming ceremony Friday night during Shabbat services. It was lovely. Her name is Chanah. It means G-d's grace. Also, it was Chanah's prayer that I said when I was trying to get pregnant.

Genetics Appointment

We had the genetics appointment today. It went well, over all. They did not run her DNA because nothing in her history or physical appearance warranted further investigation. Dr. Atkin disagreed with Dr. Popp regarding his diagnosis of symbrachydactaly. She believes that this is either ABS (our original diagnosis) or vascular. She believes that the subchronic hemorrhage that I had in weeks five to fifteen added to the likelihood that this was vascular.

Okay. While I am elated that she doesn't have any other issues and that it is non-syndromic, I am left wanting. I want to know what happened. I want to be able to tell my daughter when she asks what happened what, in fact, happened. I won't be able to and that bothers me. I want answers and she'll want answers that I don't have. I'll have to say either "It just did" or "It is either a. b. or c." It sucks.

So, today was good. Aggravating, but good. She weighed 11 lbs, was 22" long, and had a head circumference of 16".

Little Harry Potter

Notice the lightening bolt!