10. We watched an incredible kids movie about feelings and memories and how sadness is important in order to feel Joy. It touched me on a very personal level and I will be sharing more about all the "feels" it gave me in a later post.
9. We recieved news after a 3 month wait that Charlotte was chosen to be a part of Children's Mercy's Exome Sequecing Trial. Actually Neal, Charlotte and I are all enrolled. We will have our blood drawn in December and we will then wait at least a few months for the results. This is something we have prayed about as it may give us the answer to what is causing Charlotte's low muscle tone and delays. All of this prompted me to buy this: 
Wish me luck!!
8. Charlotte finally showed off her crawling skills at the SPOT. Thus proving Mommy is not a liar lol and she really does have this rough army crawl down. (When she wants to.) 
7. Max had his first haircut. This was bittersweet for me as I watched his first curls fall to the ground. Also becuse he sat up so nicely in the seat and didn't need any of mommy's support. Not the same experience we had for Charlotte's first haircut. But both were equally special and equally heartbreaking as I'm watching my babies grow and change. Side note: Sheer Madness is a great place to get toddler hair cuts, why? Two words: Mickey Mouse. They play it on TV's right in front of your child. It was a sweet relief to have Max's third parent there.
6. Neal's parents celebrated their 40th anniversary. If it wasn't for their love, I would not have my husband and our two sweet babies! So Happy 40th Ron and Peggy! It was cool to see pictures from their wedding for the first time, for Neal and I both. Apparently their wedding photographer forgot to take the lens cap off and they didn't get any professional pictures. Neal's sister found these slides in Ron's Mom's basement. 
5. We found an inclusive park within 10 minutes of our house! Inclusive in this case meaning friendly for all kids, including those with disabilities. We had a blast there and can't wait for many more park days to come. 
4. We recieved this in the mail: 
If that is to tiny to read it basically says that our insurance company has approved Charlotte's customized manual wheelchair!!! Without a diagnosis, this is big! We should be getting Charlotte's chair within the month!
3. We discovered Variety Children's Club of Greater Kansas City and their amazing Executive director Deb. Already we feel a part of something so much bigger than ourselves and we are seeing kindness in a way that we have never seen before. We went to our first event on Halloween and had a blast.
2. Variety and Rockhurst chose Charlotte to be a recipient of a Go Baby Go car. We were over the moon thrilled and couldn't believe they wanted to give us this gift! We spend a lot of time fighting for inclusive equipment or paying big bucks for inclusive toys and here comes Variety willing to give us and 19 other toddlers their very own battery operated cars adapted to their needs by the engineering and PT students and multiple volunteers (including our awesome PT from the SPOT, you are amazing Bev!!) And to top this all off they asked Charlotte to be on the local news the day before the event to promote Variety. Here are some pictures of the News day and the Go Baby Go build on Satuday and a picture of Charlotte at home with her own special car!
And ......
1. My favorite part of the weekend was a last minute surprise. As we were leaving the Go Baby Go event, I grabbed Deb to say thank you and to tell her that we were leaving to go to Charlotte's friend Mason's benifit and how much I know they wanted to be here. And Deb got an excited look on her face and said that she thought she had an extra car I could take to Mason. It was magical. We ran inside and grabbed the car and headed to Mason's carnival. The whole ride I was shaking knowing that I would be bringing one of my favorite families something that they also very much wanted. And not only that I would be giving it to them for Variety at Mason's special event. Presenting the car to Chris, Amie and Mason was a moment I will never forget. I have never had an experience quite like it. Here I am another special needs mom who just recieved an amazing gift for her child and I was getting to pass on the same gift to a close friends child. Amie and Chris's tears of joy said exactly what was going on inside of me. This amazing feeling of thankfulness and kindness and the joy of getting to share it with people you love. Now Charlotte and Mason (our once immobile low tone babies) will be able to cruise the driveways together, like the regular 2 year olds they are. 
No comments:
Post a Comment