Sunday, November 17, 2013

It's Been Too Long!

I know, I know... every time I post I say that I am going to get more in the habit of updating more often. Sorry... I suck!! lol Last time I updated, we were celebrating Kaylie 1 year post op... between then and now, so much has gone on... all for the good of course!
In August we also celebrated Kaylie's 7th Birthday, and all the kids started school too.

At the end of August I had my monthly ASAP Chapter meeting. We had a special guest, Dr. Nathaniel Stetson. He is the new neurosurgeon at Mercy Hospital here in OKC. He did his residency at North Shore University Hospital up in NY where Kay had her surgery done. He also worked along with Dr. Rekate & Dr. Bolognese of TCI with patients of NSU Hospital. So needless to say he has been taught well on the chiari side of neuro. He also is very compassionate. You can see his Bio from Mercy Hospital here. Anyways, he came to our meeting,  introduce himself, and probably was shocked out how large of a group we have. He answered general questions of people, and explained a lot too. We look forward to him being at another meeting one day!

At the end of September we closed on a new home, basically 7 miles from our old one. But, we do live in the same neighborhood (around the corner) from my parents. I really enjoy living close to them, and the kids love it too!

Mason turned 4 mid October. He is getting so big! And Halloween was a blast. Kay was a witch, Abby a Voodoo Doll, and Mason was Mr. Incredible.

Another piece of cool news is that Kaylie was excepted in the Beads of Courage Distance Program. To learn more about beads of courage go here. They are an organization that shows children with serious illnesses courage through art (gosh!, I hope I explained that right!!) Anyways, Kay is part of the chronic illness program... the other programs they have are Cancer, NICU, Burn Victims, Cardiac, and a couple others. Children get a bead for each treatment that they go through, and each bead represents a treatment. Anywhere from MRIs, blood draws to surgeries. Its a great program to show our kids how strong and brave they are.... and they can get through anything. If you are a bead maker, this would be a great program to donate your services to.
This is Kaylie's beads.... Beads of Courage sent her all these, except for a purple bead on the end (I added to the strand to represent her fight with Chiari), and the two red crosses (I added those one for the time she was blessed by a priest in NY right before her surgery, and the second was when the Rabbi came into her room at the hospital and prayed for her). Those two moments were very important to us as a family. The strand continues to get longer as she lives her life.

I'm looking into changing up some of this blog.... still and always focused on Chiari & related conditions.... but to start turning it into a general family blog. I think I would be able to update more often, due to having other things to talk about besides chiari. But, that's all still in thoughts right now. We are excited to celebrate Thanksgiving and Christmas soon... we love the holiday times with family, and ready to start new traditions in our new home.

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