just being happy....

I am well over due for a blog post, and what better time, but during September, Chiari Malformation Awareness Month.... well, the last few days of it! lol 

This summer we went to a children's museum in Tulsa, OK
I specifically choose this particular day, b/c they had an exhibit over the Brain.
Kaylie is holding an actual human brain!!! 

With the kids getting older, and everyone in the house in a good healthy state, we just don’t have time to slow down. I like it that way, because if I sit too long, I start thinking too much.

2018 has been a year of milestones in our house. Our oldest started high school, Kaylie started middle school, and Mason finally found a sport he likes… Soccer!

Kaylie started middle school this year, which brought on a new school building, changing classes, and having to use a locker…. And tons of worrying for this mama! 

Kaylie's 5th grade graduation.... on to middle school!

Luckily, our elementary school made it an easy and smooth transition! Before Kaylie graduated from 5^th grade last year, her team from her elementary school got together with Kaylie and I with her team at the middle school. Everyone got to know Kaylie, and we were all on the same page. They also showed her around the school. Her IEP is still in place, but only under health impairment…. She doesn’t see a special resource teacher for anything, doesn’t do anything different than the other kids… but the IEP is there, just in case. Due to Kay’s memory sometimes, the whole changing classes and having a locker combination really stressed me out. For the locker, we were lucky enough that she could bring her own lock for her locker, so she practiced a lot a few weeks before school started. As for changing classes… she has 7 different classes, so each class got its on color on the schedule, and then I colored in on the school map for each class. This helped a lot. Now, she says she is a “Pro” doesn’t even need to have it! One of her teachers sent home “parent homework”, where she wanted us to tell her about our child…. You can imagine the response I sent back, but then CCed all her other teachers. Kaylie’s school provides a Mac laptop to each child, so that has also been a learning  experience for her. Pretty much everything is done on this laptop, even test. So far she is doing well, and really is enjoying her 6^th grade year! Kaylie is still playing piano, and her viola too. She also enjoys choir! Last spring, Kaylie was roller-skating in our driveway, and fell backwards hitting her head. Thank God, she had a helmet on. At the ER she had a CT, and none of her screws and rods had poped out or broke. We got really lucky… but boy was that a wake up call of, “Kaylie still has to be careful!” She is doing really well…. And it’s nice!

Kaylie & Abby at All City Orchestra Concert

As for the rest of our family… Abby is a freshman in high school, she is part of her school’s color guard, and of course still plays the violin and cello for the school orchestra. Mason is playing soccer, - No head bunting, and he is now playing piano too. Ben and I finally finished the girl’s bathroom last spring, and just really enjoying that our lives aren’t based around doctor’s appointments, or worrying about chiari stuff.

The ASAP Walk & Roll for a Cure will be held Oct. 20^nd at the DC on Film Row in Oklahoma City, OK. There address is 609 W. Sheridan Ave, OKC, OK. 73102
If you need more information contact Ann at oksupportgroup@asap.org 

The date of this walk was previously Sept. 22^nd, but due to weather the walk was post pone. Unfortunately, we will not be able to make it this year.  We hope all our fellow chiari warriors are doing well! And hope to see everyone next year!

Oh My Gosh… how could I forget!! We added a new member to our family…. London, a dalmatian! We have had Dalmatians in the past, and were really missing one. London is amazing… she is now 6 months old. She is great with all the kids, and other 2 dogs. She really fits in with our family!                       

When London was 2 weeks old.... she just started getting her spots!

Kaylie's first day of school

                                        

                     

March...

Year after year, the month of March holds so much significance in my life. 5 years ago, Kaylie was diagnosed, and 2 years ago was her second surgery, the cervical fusion. One of my favorite Apps, is “Timehop”. I love to see things that I posted so long ago. It occasionally posts some difficult times, but there is way more happy times, than the difficult ones we thought we would never overcome … but we did! Every time around this year, I start looking for that first post of Kaylie’s dx. I never can remember the date I posted it, b/c it wasn’t the date we found out. We kept a lot of stuff that happened in March to ourselves. Many people had no idea she was even having an MRI early in March for headaches.

Its also weird the things you remember during difficult times. I remember when I got the call from our pediatrician’s office to come in, that I was on my way to class, and that I kept driving, and driving, and I ended up on Northwest Expressway in a parking lot at a Buy4Less…. I never go out to Northwest Expressway, but I could tell you the exact spot I was parked in. Another significant memory that sticks out is I remember where we were at on the highway coming home the next day from the doctor’s office, when I was on the phone with my mom and I told her…. “we don’t have to worry, its not a brain tumor… its just this condition called Chiari something”, or the exact spot off the exit ramp, where I turned to Ben, and I told him “No matter what, we can’t let this come between us”… all in the same day. Its funny how memories work.

So 2 years post-op!! Things couldn’t be better! I should say that doesn’t mean things are “perfect” with her. She occasionally still has headaches, at least once a month. She still has forgetting issues (will always be there, but we work around them)… but that’s about it. That’s GREAT for us! Especially coming from a child before this fusion surgery missed well over 54 days of school in one semester, the nurse called me every other day.

We have reached out to our “going to be new” neurosurgeon once Rekate retires. L Things are in line with her, which is a HUGE relief off my shoulders.
*side-note… this is all I am going to say about this right now.

I guess let me talk about our year since I last left off! School is going great for her! We recently had her annual IEP meeting, I was going in thinking she didn’t need to be on one anymore, but her team still noticed memory issues, that didn’t happen all the time, but enough so that leaving her on an IEP for “maintenance” would be the best decision, and it would benefit her as she moved up in grades.

Kaylie has a love of reading and science… (here is hoping for a future neurosurgeon!) lol, Her science side is very interesting. She loves all sides of it, not just one particular area. Her school has a Robotics team, but b/c so many kids want to be involved, they do a draw of the name thing to choose the participates. This year they had a few other like programs, that are short, to try to be able to let more kids be involved. Kaylie was part of one that was to “learn more about robotics” It was only for about 6 weeks or so, time Christmas came I was on the hunt for robotics items. Out of all my research, I had found out that our public library were the ones helping the schools with their robotics stuff, and that the library also had their “own” robotics club. It had already started and was filled, but there would be another time for her to apply for the program in the spring. Well, come January the application was out to join, but it was only for 6^th grade to high school. So we filled out the application anyways, pleaded her case…. And they accepted her!!! I had to sit down with her to explain that she would be the only elementary student, and possibly the only girl…. But she didn’t care! She has been going for a while now, and absolutely LOVES it!! It’s so funny, because she is the tiniest person in there, but she holds her own! There are 16 kids, including her, 3 girls. What she tells me, they have split into 2 groups, one group is building a Lego sorter, and the other group (which she is on) is building a life size robot to greet at the doorway of the library. The life size robot also is divided into groups, she choose to be on the “eyeball” team! LOL

Most of the kids are in high school ....they are so much taller than her!

I went back to school last fall!!! Spring semester came around and I needed to take that Human Anatomy & Physiology class that I have had to drop twice. As much as it has become a superstition to me, I decided to take it in an 8 weeks time frame instead of the semester… I just finished it last week! I’m so proud of myself, and that I conquered the fear of ever time I took this class, something happened to Kay! While I was taking it, she would get such a kick out me telling her what I was studying, or showing her a picture I took of a sheep’s brain. We had to do a cow’s eyeball (which I didn’t take a pic of), but one day she was all “Try to get a picture for me”…. Lol I love my little science nerd! A girl after my own heart!

Only, b/c Kay would look back on this and be all,
"Where is the picture of the sheep's brain?!?"  LOL

I’m not sure if I mentioned that Kaylie started piano this past September. She is doing really well, and her teacher is the “perfect” fit for her! She loves it!

The holidays were good! Our Halloween party was a blast! Christmas was good too! So glad it’s spring…. I love the warm air and all the flowers and trees blooming. Speaking of spring, we finally got a tornado shelter!

Our shelter, before it was placed underground! Yes, it fits all of us!

Abby & Mason are doing well! Abby is still very involved in orchestra, and Mason has started playing baseball!
No summer plans, I think we are going to finish remodeling the girl’s bathroom, and do a lot of stay-actioning! And enjoy "things" being good!!! 

                                                  ~The Barnes

September is Chiari Awareness Month!

It's Sept 1st.... the beginning of Chiari Awareness Month... and probably the best time to update Kay's blog! LOL We had a great summer! We have also had a great start to the school year! Kaylie has an amazing teacher this year for 4th grade... who happens to have a cousin that has Chiari. The cousin lives in a different state, but its nice that her teacher gets the basics of it all. 

As September starts off I start to see my Facebook timeline fill with everything Chiari.... purple ribbons, awareness messages, and videos... and reminders of walks coming up. But it quickly reminds me of what my past four in a half years has been like. In four years, I have cried countless tears, and even argued with just as many countless doctors. I have watched my daughter go through two major brain surgeries, all being 1,452 miles away from home.... 

I know doctors think Chiari is nothing, some may say "it's all in their head".... they're right! It is ALL IN THEIR HEAD!!... Literally her brain is falling out of her skull... to be literal! I'm sorry to all those doctors that we went to where her condition was not interesting enough, for them to give a damn.... I feel sorry for them, they are the ones that took a oath for no reason! I'm sorry for the patients that have chiari and go years and years till they finally find a doctor that listens. But as this month goes on and we posts are facts and purple ribbons, and walk miles for a cure...... if there is one thing I have learned.... is as a parent of a chronically ill child (and at that its an invisible illness).... TAKE CARE OF YOURSELF!!! We can not let this condition rule our lives. We can't take care of, advocate for, and give our children what they need..... if we have not taken care of us, FIRST! I will never be able to walk enough miles to see a Cure for Chiari in my lifetime... probably not even my great-grand kids lifetime!! That's Big Pharma for you! But I can take a step back.... and enjoy my life WITH my child, and help her learn how to take care and advocate for herself. 

I love this girl more than anything, and would do anything for her.... 

1 Year Post-OP CT of Cervical Fusion

We went up to NY for Kaylie's 1 year post-op checkup for her cervical fusion surgery she had back in March 2015. Beside us seeing Rekate, the reason to go up to NY is for the CT equipment that they are able to do. They of course did regular CT, but also did a 3D CT. The images below are all the 3D images. Besides that they are so cool.... I truly wish this was available to all patients.

All the darker yellow/orange around the screws and rods are new bone growth

When viewing the images on the CD, I can physically rotate the skull... this type of imaging is simply amazing!
As for the check up... Everything is great!!! He said her fusion has really taken well, so well that if she needed to have the rods & screws removed it would be ok. She does not need to have them removed at this time. Last year during her surgery, he had told us about retiring in a few years, well his retirment will be coming sooner, so this is probably the last time we will see him. Im so fortunante to have had him as a surgeon for my daughter. He was the best decision we made 4 years ago. Im so sad to see him leave, but happy that he will get to spend more time with all his grandkids (he talks about them all the time). We currently don't have another NS lined up, but have spoken to him about one doctor, that will happen to be closer to us in Springfield, MO. In a few months I will look more into her, and some others, just to have someone lined up. But, Im not worried. For once I feel really at peace of where she is at with all this.
We have also enjoyed a few sites, and spending time with all of Ben's family in PA. Its been really nice.

We "Thank" him, for saving our daughter's life, and giving her back
the quality of life a child deserves. 

Cervical Fusion - 1 Year Post-Op

It's Kaylie's 1 year post -op on her second brain surgery/cervical fusion. What a change from a year ago! Not only the Biggest change of her health, but over the course of the year I saw an advocate come out of her. I'm not sure if I had shared this on her blog or not, but the day she finally got out of the bed, and walked down to the play room, she sat down to paint. We thought she was painting a heart.... but to our surprise she painted an awareness ribbon. 

I believe this was the day she "got it". That she understood the importance of awareness, advocating for herself, and that even though she has this condition, it doesn't define her. 

Besides the video, she would draw these ribbons elsewhere. While waiting for a teacher-parent conference, I look up at this wall of hands... and there it was. I knew that was her hand. 

Do you see it? Lower, left corner! 

There was also times through out the year, that she made references about the cognitive effect this condition has on her academically. The most recent one was when I picked her up from school and she said she had a "happy" day. I had told her that's great, you had a good day! Then she tells me how when she has a good day, she can remember things a lot better, she doesn't forget as much. And when she has a bad day, she forgets everything. 

She's learning, and for me, I can rest a little easier, knowing she will be able to advocate for herself. 

Her health is So Good right now, I really think the best it has ever been. She only got sick once this since surgery. Having less headaches, I just see a happier child, a more out-going child. 

One Year Post-Op - Once Again, Dr Rekate & Dr Insinga did a fabulous job!!