I type this post with excitement in my heart and tears in my eyes.
Our little girl CRAWLED for the first time today!
As you will see and hear below, it’s not the typical first timer crawl – it has crying and frustration and anger – and I couldn’t love it more.
Josephine was starting her PT session and Lana wanted to tape her back with Kinesio tape (which helps give more input so Josephine can sit straight up instead of sitting back on her sacrum bone – http://www.kinesiotaping.com/physiological-effects.php).
Apparently, Josephine was not thrilled with that idea and wanted Mama instead.
She got into quadruped and spontaneously started to crawl toward me. Both Lana and I were speechless. Hand went over my mouth and tears ran down my cheeks. Our little girl crawled 2 feet!
This video is a few minutes after that event I will vividly remember forever. It’s days like today that make me happy to have Josephine home with me and not in day care.
What more can a mom ask for…WATCH!
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Hi Krista and Sheldon!
I have just read some of this blog you are writing, amazing! Krista, you are a wonderful writer, I can feel your pain and empathize with you, wow. I am so glad to see that Josephine is now crawling and doing sign language. And, I am so very impressed with both of you for the amount of research you have done and the energy you are expending! Good job to both of you, you can be so proud of yourselves. I smiled as I read your frustration with the stroller/wheelchair! I hate bureaucrats! And, I am one! I had to call the social security office today for something very minor, I wanted to jump through the phone and spit on the person I was speaking to! 😉 Thankfully, that’s not possible!
Good luck to all of you, hang tough.
Love,
Judy
Hi Krista and Sheldon:
I met your brother Robert through the Google Grants program. I am working with an organization called The Children’s Rare Disease Network and Global Genes Project that has a Google Grant. I was having some trouble with setting up my ADs and he offered to help.
I have six year old identical twins with an ultra rare disease — it’s a fatal condition called Niemann Pick Type C.
Your video of Josephine’s first crawl was very moving — my Mom and I were in the kitchen watching it and rooting her along all the way!!
Please know there are others out their facing similar situations with our children.
Wishing your family the best,
Chris Hempel
Sorry if I spelled your name incorrectly Krysta. 🙂