Thursday, November 21, 2013

my struggles....

I spoke earlier that my last meeting was back in August, and we had Dr Stetson at our meeting... its meetings like that, that reminds me why I keep doing what I do. I have been struggling a lot lately with if I should even be involved as much as I am with Chiari stuff. I didn't have a meeting in September or October, to big reasons were that we were moving, and my brother was getting married. My next meeting is Nov. 30th, which is going to be a great meeting for whoever is "new" to this whole journey. It's going to be on the basics of Chiari... like terminology, looking at MRIs... things like that. In some of the groups I am in we will through out abbreviations like CM, SM, RO, BI TC, OTC... the list goes on and on.... and even though we know what it means, and we type like that because its faster... we forget about the newer patients and parents. So, since in our Oklahoma group there has been many new patients since I started the chapter... I have decided to give a fast track course in chiari and its related conditions.
Anyways... since I have not given a meeting... I have really enjoyed the time away from it all. Its really true, when things are good... why look back. This is what it really comes down to.... if I am not affiliated with a non profit backed by a medical advisory board.... then I cant help or get the doctors in our community to listen to us. Sometimes I wish we could just be "Chiari Friends of Oklahoma"... and we are not with any non profit.

Right before October, I watch a documentary called Pink Inc.  (you can see this on Netflix)... and it really made me think about non profits (in general). All though the film was dealing with breast cancer organizations.... and NONE of the chiari ones even comes close to that big of organizations.... it just started making me think what I "wanted" to do a long time ago when Kay was diagnosed. Which always leads back to where I still want to be.... better educating OK medical professions, and helping the ones here that financially cant do it. I want to show them... the resources that can help you, or even help them in their fundraisers. I will probably Never do a walk or 5K, or and financial awareness here.... I guess because I rather that $200 or $2,000 I would raise go to the child's parents or adult that cant pay for that MRI they need, or to help them travel for better treatment.

I was recently approached by a group of high school girls that are working on a community awareness project for their nursing program. They had gotten my name because one of the girl's moms works at Kaylie's school, and had seen the bracelets for Kaylie.... they wanted to help spread awareness for Chiari and raise funds for Kaylie as their project. I was so appreciative of the offer.... but told them that we were fine with Kaylie's medical bills.... but if they want to still raise money for the organization I was with OR I knew several patients in Oklahoma that could use that support, they could. I was so happy when the choose to help another patient.... and what's even better is they picked one of their own peers. A girl that goes to one of the high schools, that one of them goes to. I love how this whole project will spread awareness about chiari, financially help this family get better treatment for their daughter, and teach her school and peers of her school whats really going on. In time I will feel you in more on this whole project.
I guess I just need to find a happy balance between living a regular life (meaning not always focused on chiari and worried about patients I get attached too), and still doing what I want to do for our chiari community.

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.