Friday, January 23, 2015

Because not everyone is on Facebook….or maybe because they are.

The Flamingos are going great!!! We thank all the families that have been involved and continue to pass them on to support Kaylie. This has to be one of my favorite fundraisers I have done. I love hearing the stories of those homes that are flocked that have little kids. We hear they think they are chickens, or purple ducks… I even had a little boy catch us in the act of picking the flamings up. My heart just broke for the look on his face! Before we leave for NY, I'm going to surprise him with his very own, one night!
So, I had said before I was trying the whole social media outlook of things this time around. Its great in all, for the small percentage that "likes" Kay's page. But I feel like I can't write the posts I want to write on there… I feel like something holds me back. Maybe I will write on here, and occasionally link them to her page, who knows. We are down to a month in a half. This time around is different. I had a lot of fear last time, just like any normal parent would be with their child going into surgery…. but to be honest, this time is different. I have this horrible pit in my stomach. This surgery truly scares me, I can't stop thinking about all the horrible possibilities…. and I don't know why. I didn't do this last time. I was so positive last time… and I just can't seem to bring myself to that point! Maybe its the fact that this time she is having 8 screws put into her skull and cervicals, and that there is a huge artery near the placement points… or maybe its the fact I am just so tired of living in this life of my daughter having these problems. I just want her to have a break…. for good.
The whole thing sucks! I'm just having one of those days! :/

Thursday, January 8, 2015

What is with all the Purple Flamingos?!?!

Did you wake up to a flock of Purple Flamingos in your yard… or was the above the scene in your neighbor’s yard??? This is “Flocking for Kaylie”… 
**Note: If you are a homeowner with flamingos in your yard, please check the "info tube" on the sign. 
“Flocking for Kaylie” is a fundraising event to help support Kaylie Barnes. Kaylie is a 2nd grader at Truman Primary. March of 2012, Kaylie was diagnosed with a brain disorder called Chiari Malformation (Kee-AR-ee). Chiari is a congenital anomaly in which two parts of the brain, the brainstem and the cerebellum, protrude through the opening at the base of the skull. She suffers from many symptoms of severe headaches, ear pain, eye pain, fatigue, light & noise sensitivity, clumsiness, and Aphasia (word finding, word retrieval and recall issues). Her parents sought out a pediatric neurosurgeon highly experienced in this condition and related conditions, which is at The Chiari Institute of New York. In July of 2012 she underwent a brain surgery, surgery was not a cure; it helps relieve some of her symptoms and the progression of this disease. Since the surgery things have gone well, till this year, some symptoms have returned, some new, and some a little different. This past fall Kaylie had a few different MRIs, which showed she has a related condition to Chiari. She has Retroflexed Odontoid Process, and will need a cervical fusion of the neck. On March 11, 2015, Kaylie will have this surgery. To help off set the cost of travel and medical bills we are fundraising for Kaylie. 

Why are the flamingos purple??? Purple is the Awareness color for Chiari & Related Conditions. 

Join us in a Flocking Fundraiser for Kaylie! If you live in the Moore/Norman area of Oklahoma and would like to “flock” a friend, please contact us here, and we will send you the order form for flocking! It is a $25 donation to flock a friend.
Flocks may not migrate outside the Moore/Norman City Limits or onto public property or apartment complexes. Flocking is done in Good Spirits and is not meant to be malicious. The last flock will migrate North on March 1, 2015.

Please pass on to your friends the excitement of being “Flocked”!!! And thank you for supporting Kaylie!
You can read more about Kaylie on this blog, or you can visit her Facebook page “Kaylie’s Chiari”.
You can also make a donation through Kaylie's GoFundMe Account or donation can be sent to:

Kaylie Barnes Benefit Account
600 NW 5th St.
Moore, OK. 73160

Friends Flock Together!

Tuesday, December 9, 2014

In 3 Months….

Sorry it has taken me so long to give an update. There was a part of me that took some time for myself, talk to family, and I more less wanted the date set before saying too much.
We had our Skype with Dr. Rekate, as always it's so nice to have a caring, compassionate doctor that wants to help. It was everything we thought would be said, along with a little bit of new information. Kaylie is very unstable in her cervical spine. There was a lot more details, like measurements, talks about her symptoms, but the bottom line is that he suggest a cervical fusion surgery for her. He said sooner rather than later, but could wait till school was out. Ben & I have thought about many different options, but think March would be best. Our thoughts on this is that we could pull her out of school for the rest of the year (about 3 months), when we return home from surgery she could be home bound schooling, time summer came, her summer wouldn't be ruined, and time mid-August, she would be able to start the new school year. With that March was decided on, and today we got hospital confirmation, March 11th.

The cervical fusion would involved her being fused from Occiput (bottom of skull) to C2. Something we learned during our Skype consult was that her C2 and C3 are naturally fused. This is actually called Klippel Feil Syndrome, but Kaylie has a very mild form of this syndrome. Nothing will be done to this… I have asked if it will have to be broke a part (while in her fusion surgery), but the answer was no. Kaylie will spend 5 days in the hospital, then a week at Ronald McDonald House, until we get the clear to travel home. Much like her first surgery. Speaking of her first surgery her decompression… it looks fantastic!!! Dr. Rekate was very happy with how everything has turned out with that part.
So this is a little bump in the road, we have always known this was a possibility… Dr. Rekate does think this fusion surgery will help her greatly. Her current symptoms are headaches again… mainly frontal, and on the right side. She also has been getting ear & eye pain, along with sometimes having blurriness in the eyes. She tries really hard to be in school, she loves school… and we are very fortunate that Kaylie & her siblings have a very understanding and supportive school. Kaylie also has a great school nurse!!
Before our Skype appointment, I got a copy of her attendance report… she had left early or missed the entire day of school over 29 times since school started. It is kind of like last time, she is just progressively getting worse, or the symptoms are getting worse & more frequent.

I have decided that I will keep her Facebook Page "Kaylie's Chiari" updated more… I think it will be easier, and better social media wise. So please follow us, "Like", and "Share" her page. We also have a "GoFundMe" account set up too. Ben & I have a really cool fundraiser planned, she is excited about it also… we will start that in January. Till then…. thank you for all your thoughts, prayers, good vibes, and your support. She is a strong little girl… she will get through this!

Tuesday, November 4, 2014

ASAP's Next Meeting

Oklahoma's next ASAP's support group meeting is Nov. 8th, at 1pm, the Southwest OKC Library: 2201 SW 134th St, Oklahoma City, Oklahoma 73170
We have a guest speaker that will be talking to us about using essential oils as an alternative therapy for pain. I'm really excited about learning more about these oils. I hear them used in many different conditions. I hear that peppermint oil is used for headaches, and when we have kids that have chronic headaches, medication routinely used can be dangerous (ie:Tylenol, Advil, Aleve). I also think there is always that glimmer of hope to find something that just works, and at least relieves the symptoms for a short time.
Anyways, if your in the OKC area, stop by! Once again, our meeting are always open to the public, and to other conditions. You can find the "event page" on Facebook here.

Monday, October 27, 2014

more waiting...

As you know Kaylie had her 2 year post op MRI this summer, which came back her having a secondary condition called Retroflexed Odontoid Process. After a couple emails with Dr. Rekate, it was decided that Kaylie would go ahead and get a Flex/Extension MRI... basically they flex your head forward, then extend it back. She had this MRI at the end of September. The day of the MRI, there were some issues with our Children's hospital putting her under and doing that type of MRI. So with talking to them, and Kaylie, it was decided that she would try to do the MRI without sedation. They aloud me to be in there with her.... basically I was rubbing her little toes, so she knew I was there the whole time. She did amazing!!! I could not be prouder of her!
We got the CD, and mailed it off to TCI/Dr. Rekate.
He has emailed us saying she is quite unstable at the occiput & cervical spine ligaments. He would like to either have a Skype consult or face to face consult with us, to discuss more. We have set up a Skype time for Nov. 17th.
So till then... we wait....

Kaylie at her school's jog-a-thon

 On another note.... we had the Oklahoma ASAP Walk & Roll for a Cure on Sept 20th!! It was amazing! Everything went so well. We had 352 walk participates, and we raised $13, 220.00 for research! I cant thank all of our sponsors enough, and all the volunteers that helped me put this event on! Thank You!!
Our other sponsors (which had their own banner) were: SHAWPC, Dr. Shon Cook,
The Chiari Institute: Dr. Harold Rekate, then all of the above and in the pic were on the back of the walk shirt, along with:  4imprint, Bricktown Clowns, GoGo Squeez, Starbucks, Small World Pediatric Dentistry, A's Towing & Recovery, Dr. Archana P. Barve, DJ Paul Camacho, Max Tuepker, and Dr. Joanne Pham


Kaylie & her friend Brinlee

My Supportive Family!

Ben & Kay

The whole walk

Chiari & Syringomyelia Patients of Oklahoma

Monday, August 25, 2014


Sunday morning… my list is full of things to do, I glance at my email… and there it is, the email I have been waiting for. Its amazing how one thing, can change the course of a day… even your life. 
Our neurosurgeon said the scans looked great… that there was great flow. But, the only thing on the scan that is not completely normal other than her surgery, was that she has "retroflexed odontoid process". This is what I have been worried about, we have always know the possibility of her having this was there. This is actually what Mason has… but you have to remember Mason does not have Chiari. Nor does he have symptoms… the only thing Mason struggles with is his Apraxia Speech, which is a oral motor planning issue caused by a neuro issue… Retroflex Odontoid can cause motor planning issues. 
Back to Kay… so, basically we need to keep better track of her symptoms. I know they are happening a lot more often than I ever tell people, or that I log. I have kind of slacked on logging her symptoms… b/c things were going so well. So, I have revised the way I log symptoms, one day I will talk about this more. Our NS suggested that if symptoms are getting worse to get a cervical spine MRI with flexion and extension. I will be talking to our pediatrician about all of this, and possibly getting the MRI now as a baseline. 

Whats all this lead to… well, there will probably come a time where she needs another surgery, a cervical fusion to be exact. This is the surgery that my friend Amy just had, that I have talked about in previous posts. This surgery really goes off some measurements and her symptoms. So it may not be this year or next… we really need to take this one step at a time. But I can say her probability of needing to have one in the future is high. 
So below, I have posted 4 of her MRIs… the top two, is before surgery, and 3 days after surgery. 
Bottom left is 3 months after surgery, and the bottom right is a few weeks ago(2 year post op). Then there is a single one below the group of them… that again is her 2 year post op one. 
On the 2 year post-op one there is a purple arrow pointing to the area of concern… that is your C1 & C2, The best way I can explain all of this, is basically your C2 is turned backwards (formed this way due to a connective tissue disorder, like EDS) and then the C2 b/c it is turned backwards it compresses the brain stem area. I have talked more about this under "Basilar Invagination" the top tab on my blog, when Mason was diagnosed. Terms used with all this is cranial instability, basilar invagination, retroflex odontoid… 
So, that's whats going on…. even though we will be facing another surgery one day…. this time its different. Yes, yesterday I was upset, but I have know about this for the last 3 weeks…. I think what is upsetting is that there is always a glimmer of hope that since you aren't the doctor that you might be wrong… but when you hear back from them… its finalized. That's the upsetting part. I think it almost a curse either way… knowing too much information on a condition, and at the same time not knowing enough…. either way, it always hits you like a ton of rocks! 
We will keep you updated! 

Thursday, August 21, 2014

Still Waiting….

Still haven't heard back from anyone at TCI or Dr. Rekate…. my nerves are really starting to take a toll. I feel like I am constantly stalking my email account…. hoping to see his name pop up. This wait is normal, those that know TCI (The Chiari Institute) sometimes, they do a review board over MRIs… so its just not one neuro doc looking at your scans. just keep waiting…

On another note… Kaylie's 8th Birthday was a few days ago! Can you believe she is 8 now….
She had a skating party with some of her friends… she had a great time, and she did so well out on the skating rink. Never fell. We didn't make her wear a helmet…. it was in the car (just in case), but I knew she would be holding on to the side wall most of the time… like I said, she did great! 
fake glasses…. lol, she is so cute!
The kids started their new school yesterday…. they did great! And this mama never cried! They all liked it, I think Kay & Mason are a little nervous, but that's to be expected. I was a little worried about Abby, … at her age, a lot of the kids know each other… but she said she met 5 new friends, and sat by them at lunch… she is her mom's personality… so she will be ok! 
I know… they are getting so tall!!! 
Well…Im wearing bracelets, and posting… hoping my rituals will take effect, and I will hear something soon!