Monday, February 8, 2016

2016 Daddy/Daughter Dance

This has been a good week! Kaylie had a couple headaches, but our weather has been a little crazy… from mid 60's then to really cold… not good for chiarians! But, she is always a trooper. This week I also had Kaylie's yearly IEP meeting, went as planned, everything is really good… the school has been amazing with her! We did change how she is given spelling test a couple months ago. This was something that was actually suggested from her neuro-physch several years ago. I never pushed it, and no one ever put it into practice. But her teachers this year suggested it. Instead of the spelling words being called out to her, they give her a test where she has to choose the correctly spelled word, out of a group of words that all look and sound similar. Her spelling tests grades have dramatically gone up.
We have been a little concern with her memory, and we are looking to get her into a new neuro-physch that takes our insurance. But, Im not in too big of a rush for this, due to I think swelling takes awhile to go down from these types of surgeries… and I want to give her that year of healing before anything.

Daddy/Daughter Dance was this past weekend. Ben & the girls had a blast! As they got ready for the dance, I couldn't believe how much they are growing up…. before I know it, they will be getting ready for a Prom!



Monday, February 1, 2016

Finding Happiness Again...

As you may have noticed I have been MIA since July! That's because at the time, which I will talk more about it later in this post, I came to the immediate realization that if I didn't make some changes in my life, things were going to continue to go downhill, quickly.
I first want to talk about Kaylie! She is almost 11 months post-op from her cervical fusion surgery (2 brain surgery)!!! I can't believe how fast it has gone by, and how well she is doing!!! Seriously… she is doing so well, that in January she received an award for attendance!! Yes, I said that right! She hasn't missed any days of school last semester! We can't believe it… she even checked to make sure they had the right "Kaylie"! LOL She got a cute purple & yellow star pin for it. And then, the perfect attendance shortly came to an end b/c she got strep, last week! But hey!, it wasn't due to a headache… and that's saying a lot coming from last year of 54+ days missed!!
Things have been really good for her, hardly any headaches, maybe a couple a month. Her neck rotation is really good as well. She is riding her bike, and doing all the things a normal kid should do. She is still not in PE, we want to wait till her year post-op MRI comes back. We plan on going up to New York in June, for her year check up with Rekate and MRI. I couldn't be happier with how things have turned out for her.
Everyone else is doing really well, everyone loves school…  The girls are looking forward to the annual Daddy/Daughter Dance this weekend. Mason & I will go grab ice cream or something.
So, I have talked in past posts that I have been going through a lot. I believe in one post, while we were in NY, I talked about how I had got sick one day. The truth of it all, is that I had a major panic attack while we were up there, in the hospital! This past surgery for Kaylie has probably been the most stressful time, ever since the beginning of dealing with all this stuff. Which is weird, b/c I knew what to expect, it wasn't like I was going into all of this blind or for the first time. But, there was a mood/depression… I'm not even sure what to call it, that I was going through.  I was worried about that our insurance had changed somewhat, on top of it there was this whole heart issue we weren't sure was going on with her…. I just honestly didn't have a good feeling going into all of it. And not feelings over the doctor, or if the surgery was needed …. just everything else. Her recovery in the hospital was a lot slower than the first time…. and I think while we were there, it just all came crashing into a panic attack. Being sleep deprived doesn't help at all too!
When we finally got home, a few months later, I was still feeling bad… to the point it was physical. My hands, knees, hips, shoulders were in so much pain. I finally decided to go to the doctor. Between May & Sept. they ran a bunch of test on me, my Vit D came back severely deficient. I was put on a script for that, and it only brought it up to the "low" side. In Oct I was put on the script again, b/c it had dropped again. They will be checking it again soon, next week. During all this I had a hand MRI, which showed some concerns. Ended up at a Rheumatologist, and being dx with RA (Rheumatoid Arthritis). I'm now on a great treatment plan that is helping with all the joint pain & fatigue issues I have been having. I have talked to both my PCP & Rheum doc about all the stress with Kaylie's situation. They think that this last surgery with Kaylie is what triggered the RA to finally show up in me. I say that b/c I have had joint issues in the past… but in May, it just felt like everything came all on full force, and with the Vit D situation, that didn't help. They both talked to me about seeking professional help dealing with all the stress. I told them I was already in the process of removing things from my plate, and figuring out how to help myself. I knew that this could not go on any longer… I wasn't in a good place. Back in May/June I officially removed myself as the OK ASAP Support Group Leader. I was no longer doing support groups. Then I really focused on what was causing all the stress…. I think the word "Chiari" was probably 75% of my stress.  It was stress about my daughter, the support groups, the groups on FB I was involved in, the patients I worried about, the future of this condition for Kaylie and my family in general. I felt like every single day the word "Chiari" was spoke or thought about…. I felt like it was controlling my life, our life. And that wasn't who we were. I didn't want it to define us any longer. I wanted to go one day without Chiari being talked about or even said. I had told my doctors by the end of the summer if things weren't just a little better, I would take their advice. But I knew I could get all this under control on my own. I knew, I WAS capable of that. But how?? I had already ended the support groups, it was time to remove myself from more. I decided to remove myself from every single Chiari group on Facebook. I literally don't belong to ANY of them!! That was big! I believe they are great…. but I didn't need them anymore.  I then deleted about 200 people from my friends list on FB. Some may not even know it happened, some may have taken it personal, but most of them were just people added to the list, b/c they had chiari. I didn't talk to them, I didn't know them… and I didn't need them on there. I kept several, the ones I have met in person, become close to over messages… the ones that there was a bond. I then removed a lot of chiari crap from my computer, the countless articles I saved, published researches, pictures, and inspirational sayings.
I have stopped over committing myself… and this is one I work on daily! I even call Ben or my best friend Sabrina and run things by them to see if I should start or go do some idea I have. I needed another person to tell me, "You don't have to do that… someone else can!"
Then there was this blog. I just stopped. In the past 7 months, I have teetered back in forth on deleting the blog. Will I ever write again, or just leave it up as is, indefinitely.
I had gotten back into art, doing the things I love to do. Creating things… I'm not sure if I have even ever talked about that side of me, the artist side. I have taught myself to let go of the future… the "it will be great when this happens, or we get this done" thinking. We bought our home 2 years ago, not only b/c we loved it, but we knew it would be a great home to entertain in! We have never entertained! That's my fault, as a perfectionist (which causes me to stress) I have felt we can't until the house was done… but there are so many projects that need to be done. But over this 7 months, I have realized… who cares! Who cares if I have black cabinets that are painted wrong from the previous home owner, who knows when the kitchen will be redone! Who cares, that I still need to paint the molding trim at the top of our hallways & entryway…. I will get it done one day. Who cares that we have several doors that need to be replaced… we can't afford it all to get done at once! So, why am I waiting to live "LIFE" in my house??? We aren't, anymore…. we/I am living for today, right now… not in the future, not when the girl's bathroom gets redone, but right now…. before the years pass us by!
I had a small little Christmas Party for the girls and a few of their close friends (Baby Steps)! It was fantastic! They had a lot of fun… and I didn't stress once. It felt so good to enjoy the fun of letting go. We are planning this Monster of a Halloween party for next year! … yes, I know… but I'm a huge planner, and at that… my art gets to come out in it all! We have wanted to do this for a very long time….
So back to the blog… I'm back as you can see, and what changed all that, you may ask…. Last week, I was working on my latest Halloween project (will have to post pictures soon)… I have paper-mache all over me, kids at school, Ben at work…. I started thinking about I needed to decide on the blog… do I renew my domain, or let it run out, and end it all. I had decided… I was going to shut it down, write a good-bye post… and let its time run out. And then I got a phone call from Kaylie's school. They wanted to know if they could give out my information to a parent of a 1st grader just diagnosed with Chiari. My heart sank, an overwhelming feeling of emotions came roaring over me. I said, "Of Course"! And then my old self, kicked into action. I was so worried about this family, and even though your info is given to them, not everyone feels comfortable reaching out, that I threw together this packet of information, and rushed it up to the school. I wanted to make sure if they didn't reach out, at least they had the "basics". I worried all day about that family. I even cried after getting the phone call from the school…. and I don't know why. Why does this condition pull so hard at my heart??
That evening I got an email from the mom, thanking me for the info. She had read some of Kay's blog, which had helped her emotionally. That's when I knew… the blog needed to stay. And I should still write. Because there is a lot of Chiari moms going through the same things, just like me…. that we all hide from the rest of the world.
The next day, I met the mom for coffee. It felt good, even like old times… the "good" feeling of helping someone. Leaving there I immediately called my husband telling him I was going to start the support groups back up…. he was busy, said he would call me back. I called Sabrina, and thank god, she gave me the reality check I needed. Her & I are a lot alike … she is a patient of her own chronic illness, we both constantly over commit ourselves…
She told me no, don't! That I was doing so much better, why would I slip back into the old routine.  I didn't need to give that much of myself to this condition. My blog was enough. My "enough" is the few patients here and there that are given my number, my information or through this blog that I help. I don't "need" to do everything for chiari. And she is right! I needed to hear that.
So this past weekend, as you may see … I have changed some things on Kay's blog, add things I have been meaning to add in the past year… lots of updating. Along with the promise to continue to blog, and take care of myself, one day at a time!

Monday, July 27, 2015

3 Years/4 Months

Three years ago on this day we were facing Kaylie's first brain surgery. I remember those days so well. The fear, worry, crying moments, happy moments, even moments of looking at other patients thinking to myself, "I hope we never have to deal with that…" or "This is it… we are good now." Now we are 4 months out (almost 5) from her 2nd surgery.
As I look back on everything, Im still happy with our choices we have made, the doctors we have chosen to care for her, the lessons I have learned about these conditions, and others as patients or caregivers.
Kaylie starts back to school little less than a month. She is very excited to go back, and to see all her friends. And as she will continue to still heal, I will always worry a little about her at school, but I am learning to let go. She knows what she can and can't do, and I have to trust in that as she gets older.
She has been riding her bike again, roller skating in the house, being a normal child again. PT has even gone down to once, every 2 to 3 weeks. It's time to get back into a normal routine.

Wow, from the first time we met with Dr. Rekate, to the time we were meeting him again
to talk about her fusion surgery…. where has the time gone. 

Thursday, July 9, 2015

Change… In Every Way!

We past 3 months post-op…. and will soon be 4 months post-op on the 11th!!! I seriously couldn't ask for anything better at this time!! Sorry for no 3 month post-op update… but to say the least, we have been living life… for us, not chiari. And this is a permanent change.
As of a 4 month post op update, she is doing great! And as you can see, healing quite nicely! We have also just dropped her PT down to every 3 weeks. She was measured today at PT, and her range of motion has gone from 10 to 30/40. Thats HUGE improvement!! Her PT guy does mostly cranial sacral massage/technique.


 School ended, summer began with lots of rain… I mean, lots!! We have had some flooding in our area… our backyard is really big, so it was never got close to the house… and after this first flood in the pics below, the kids never played in it again… I was too worried about mosquitos.

We also started a garden, mostly seeds planted. It took awhile to get itself started due to all the rain, but has you can see… it is thriving now!! The kids are excited about all the veggies that are blooming.


When 3 months came up in early June, Kaylie was due for a CT scan. We had it done here locally, then got the CD and sent it to Dr Rekate & Dr. Insinga. Kaylie did great during her CT, no sedation needed… but CTs are very short… nothing like MRIs.



In the CT pics above, the one is 2 days before surgery. Then the other two are her 3 month post op… its hard to see the change, and to the everyday person, your pretty much looking at hardware.

Kaylie wanted to send the doctors some cards, she is so thankful to both, but to Dr Rekate especially.  After they received the CD, they reviewed it, along with the report that I emailed them a few days later. A Skype appointment was set, which was last week. It went VERY well. Everything looks great, and in place. She hasn't had but maybe a handful of headaches since the surgery. Which is Amazing!! She is happy, and herself. She is still in PT, and probably will continue that for awhile. She is still healing. On the CT there was a small pseudomeningocele formation. This is spinal fluid (kind of built up), he said over the spinal cord area of where her surgery was at, it just needs more time to heal. He is very pleased at her healing as well, and how her scar looks. And we will see him a year post op, unless something comes up!
We celebrated "great" CT results with Snow Cones!

Cavity Free!!!
Kaylie also had her first dentist appointment since her fusion surgery. I was a little nervous about this appointment. I was scared about her being able to sit through it, having her head back…. but as soon as we walked in, that was the least of my concern! Im so thankful for the great dentist we have… they are always up to date on the kids medical history, and whats going on with them. As soon as Dr Guthrie, from Small World Pediatric Dentistry in OKC heard Kay had a fusion… he stopped and contacted Dr Rekate immediately. He wanted to make sure Kaylie didn't need to have antibiotics due to having hardware put in, prior to the dental exam/cleaning. (I had never thought about this before!) None was needed and Dr Rekate just told him not to hyperextend her neck. Everything went perfect, and this mama was happy!!!

We then headed to Dallas for a Rheumatology appointment. That appointment went great, the doctor we saw was great too, and they decided to test Kaylie for a few more things. Those results have come back normal, but the Rheum doctor told me to not always focus on the bloodwork, that things can come back normal… just not be showing up yet. But for now… things are good… so we are leaving it at that. We won't see her again, unless symptoms flare up more. One concern she had about Kaylie's EDS is her ankles, I guess they are "rolling" pretty bad… she suggested that Kaylie wear tennis shoes more often with special inserts to help strengthen and stabilize her ankles better.

Just the girls went down to Dallas.


Waiting for the doctor...

The other fun summer things we have done, is that we built a Lemonade Stand out of used wood pallets. Well, I built it, the girls helped paint it…. that was a little bit of a mess!

A couple weeks before the 4th of July, we got a new puppy!! Meet "Okie"! He is a chihuahua, you can't see his body below, but his body looks like a cow, spotted! His ears haven't come up yet, he still has a few more months for that to happen.

Coco, our other Chi, just loves him. They play all day, or at least until Okie zonks out!
Our 4th of July was very low key… we did the neighborhood thing, then went swimming, then saw a local fireworks show. It was nice, and relaxing.

Wednesday, May 13, 2015

2 Months Post-Op… well, a couple days ago!

2 Months Post-Op!!! It's going by fast, which is a good thing. Each day brings something easier or just a little bit better. And… more fused! The goal here. Kaylie is doing great! She is no longer on pain meds, really hasn't been for awhile. Doesn't wear her neck brace at home that much… only if she has had a "long" day or her neck becomes really tired. She does still use it when we are in the car. PT is still going well. Her mobility is really coming a long. Her incision is looking good too.
School work is going well, we are actually turning in all her work and supplies soon, and the year is over for her! Their last day is the 22nd, so it will be nice to have them at home.
We have had a lot of tornado weather in our area…. it's that time of the year. Kaylie has done very well, with it all. She hasn't had any headaches with any of the big storms… its only happens when we have a big front come through…. like it goes from hot to cold, dropping about 20 degrees.
Storm wise, we had a little damage…. nothing too big, a tree landed on one side of our home, but it is very minor damage compared to what could have happened.

In early June Kaylie will be seeing a Rheumatology doctor at Dallas Children's.

As for the family, we are all doing well, looking forward to the summer and nice weather. We have planted a vegetable garden recently, and the kids are really enjoying that… so far just planting seeds, and watching the sprouts pop up.
Myself as a parent, caregiver, and advocate…. I have really become distant from a lot of things…. A lot of emotions have gone about…. I'm not sure if that's b/c I'm realizing that this is a never-ending journey… which I have always "known" that…. or having Kaylie home day in and out, all the homework, PT, doctor appoints here and there….. I'm just physically drained. With having time to myself recently and just to focus on our family… its kind of had me do a lot of thinking.
The other night, Dateline was on…. it was on Tom Brokaw's journey with cancer. And all though it was about cancer…. it told our story. Trying to get our heads around pain levels, finding the right doctors, even if that means traveling, how you feel your life has done a 180, how as a caregiver…. I'm at my breaking point right now. It was an amazing episode, and if you missed it… I highly suggest you watch it…. you don't have to have cancer…. but you will relate to hit if you or a loved one has a chronic illness. Dateline Episode.
Hope