Wednesday, August 31, 2016

14....

14 years ago, on your 26th birthday, you asked me if I would marry you....
It's been 5114 days

  • 441,849,600 seconds
  • 7,364,160 minutes
  • 122,736 hours
  • 5114 days
  • 730 weeks and 4 days


Here's our story...


  • Mike and I had met at a 4th of July BBQ (2o02). We had met a couple of times before this but really just in passing at parties, etc. The only reason I was going to this 4th of July BBQ was to see Mike. Thanks Matt Kennon for taking me there! Mike and I hit it off that evening literally....we were in the pool and playing pool baseball and we bumped heads! We "connected" during a catchphrase game with about 8 other people there (and anyone who knows my catch-phrasing ability know that that is a tough feat!) From that BBQ we spent every day together....thank goodness for summer!

  • Fast forward to August 31st (2002) yes...less than 2 months later....we were on our way to a wedding of one of Mike's friends. (Angie and Adam!) Little did I know that Mike had this proposal planned....below is the story in his words.

  • "I had hidden a build a bear leopard that was dressed in a wedding dress that I made for her and a bottle of wine and of course the ring in my luggage. As we were leaving (for Angie and Adam's wedding) I said I forgot my car keys in the room (which didn't work as smoothly as I hoped b/c we were walking there and back), but I went in and set everything up on the table and put the ring (still in the box) in a passport carrier around my waste. At the reception she put her arm around me and put her hand right on the ring on my back and of course she asked what it was. Due to a bit of quick thinking, I told her that I told my dad that my back was hurting from moving stuff into my apt. all week and he gave me a back brace, then she said, but it feels like there is a box back there and I said "I don't know what that box thing is, but it sure feels good", which was enough to convince her that it wasn't anything too interesting. After the wedding reception we walked back to the hotel and when she walked in the room she saw the build a bear and read who it was from, "her fiance" and then when she turned around I was on my knee and she was crying and she said yes before I finished my little speech that I had been trying to perfect the last week and then she got down on her knees with me. After she stopped crying and we had hugged for a while she asked me what I said, so I made her get back up and I asked her again ("The one thing I really wanted for my birthday that would make me the happiest man in the world would be if you would promise to spend the rest of your life with me")and she said yes again and I then put the ring (which was 2 sizes too big) on her finger. "

  • I called my mom and told her (my dad already knew because Mike went over and asked him for his permission). When I told my mom, she didn't know because my dad knew that if she knew....she wouldn't be able to keep that a secret! ha! We got married about 4 months later on Dec. 28th, 2002.










Dear Mike,
  • 14 years ago today your birthday present was when you asked me to be your wife...
"The one thing I really wanted for my birthday that would make me the happiest man in the world would be if you would promise to spend the rest of your life with me" ...and the icing on the cake was when I said yes. :)
  • So today, on our 14th year anniversary of that day, I am saying YES again....


  • Yes, I am so glad that I met you, got engaged, and married all within 6 months
  • Yes, you make my life complete and I'm so thankful for our sons
  • Yes, you still make me smile from across the room when I see your face or if I hear your name
  • Yes, I love you....not for what anyone thinks you should be, but for what you are, what you strive to be, and what you always will be...
  • Yes, some days are better than others...but I wouldn't trade them for anything
  • Yes, you have a way of making good times better just by being there
  • Yes, you are the love of my life
  • Yes, you are still a dreamer and a romantic and you overwhelm me with happiness
  • Yes, I still thank God for you everyday
  • Yes, I am still crazy about you and I am SO thankful we walked into each other's lives
  • Yes....I still wonder how did I ever get so lucky????
  • Yes...I'm so thankful for the ups and downs in our life. Yes, there have been many hard and difficult moments. For us. For our amazing, beautiful boys. For our family, but knowing those difficult moments bring us closer together in the midst of chaos, is actually comforting.
  • Yes, to the amazing adventures and trips and the ones we will have in the future.
Happy 40th birthday my love....
So thankful for you and our boys.
xoxo
-K


 
 
 





Love ya Mike! Here's to many more celebrations and birthdays!
xoxo

Thursday, August 25, 2016

What we've been up to...

Here's a few things we've been up to lately...


 Alex is working on writing his name and apparently the first few days of school wrote his name as BMN (aka....Batman)
Hahaha!





Celebrated our nephew's 9th birthday!!!!!




And THIS one lost his 4th tooth! He kept saying "All I want for Christmas is my teeth to fall out!"
Well, buddy, they are :)
Welcome to the awkward teeth stage E.


Saturday, August 20, 2016

Pandas....and not the cute, cuddly bear kind.

PANDAS stands for Pediatric Autoimmune Neuro-psychiatric Disorders Associated with Strep. This disorder is the result of a misdirected immune response following an infection or illness usually associated with Strep. Children with PANDAS experience an acute onset of debilitating neuro-psychiatric symptoms when triggered by bacteria, viruses or strep.

We are all still learning about what it is....what it means....how to get help for our son. We would LOVE your prayers and thoughts as we navigate through this journey.
After many, many years of me never feeling like we had an "answer" for Evan's roller coaster of emotions and behaviors and random illnesses and sicknesses, we finally have an answer of what has been going on in his little body. Evan has an autoimmune disease.
 We believe the onset of it happened when he was 2 and was hospitalized when he was found to have bacteria in his blood. 

(Read more about that here)




So our son, has Pandas and it isn't this cute, cuddly kind. It's messy, chaotic, hard to figure out, and has changed his life as well as our lives. 

In Pandas, the body becomes confused after a strep infection, or virus or bacteria infection and creates auto-antibodies that begin attacking....the brain. yes. the brain that controls everything. It's so scary. It specifically attacks the basal ganglia, which is the area of the brain that controls emotions, movements, certain learning processes and other functions. When the brain is being attacked and inflamed, it unleashes unrelated symptoms that may look like mental illnesses or behavioral problems or neurological issues. Pandas can happen suddenly and dramatically. It seems like overnight your child develops OCD, tics, ADHD, anxiety, sensory issues, urinary problems, insomnia, rages, impulse, manic stages, anorexia and more. School work may decline, especially math and handwriting. 







Here is a video from earlier this summer that shows how bad his anxiety gets and how fearful he is when he is in a flair. And come to find out, a few days later he was diagnosed with strep. The second video is food aversions and anxiety over a peanut butter and jelly sandwich from lunch from last week and then come to find out, he tested positive for strep today.  For us, the symptoms always show up first. Defiance, mood swings, rages, lack of sleep, not eating, saying his neck and legs hurt, impulse, and anxieties.
This is a hard road to go down and I'm hoping that since we now have the results back we can get some answers and find the best treatment for him. 

https://www.youtube.com/watch?v=aSsOl-krzlc


End of school during a flair always, always, always resulted in a meltdown in the car on the way home. Crying, yelling at me, mad at himself, etc. We do a lot of blankets and holding to reset when upset. 
  


Wants to participate in activities, but then anxieties set in, and he feels like he can't do it. 


And when he isn't feeling good, almost every single night he is in our bed. Cuddled up and legs digging underneath for added pressure. 


Looking back, I have realized how much his body was crying out for help. Way more tantrums and more emotional outbursts the older he has gotten. More intense, more impulsive, more anxious, and even saying that he has wanted to be dead on more than one occasion. Saying that his body hurt, his legs hurt and his neck hurt. Over the last 5 years, we have seen multiple doctors, have tried multiple therapies and spent thousands and thousands of dollars trying to figure out what was going on with Evan. We have always had problems with preschools and mother's morning out and school. Looking back, when E was getting sick is when the behaviors would significantly increase. Not wanting to go to school, impulsive when something would happen to him and he would react back to them, usually with hitting, kicking or running away. ahh...the number of times he has run away....I can't even count. Running away from the situation, himself, other people....just to get away from it all. It's so scary knowing that something is going on in him that we can't control and never knowing when or how he will react. He's been so scared by something, usually insects, that he's run away or has refused to get out of the car, or had panic attacks on playgrounds because he can't make it back to the car. He's run away from us, from his teachers, run to other classrooms and hid, has run through the woods by our old house, across a 5 lane highway after running out of school, etc. He has hit us and punched and kicked and has tried to head butt others when his is in a flair and we have had to restrain him to hold him down to get him calm...to help him feel safe again.
Pandas symptoms are so fast and so intense and usually without warning. When E isn't sick or has all of this inflammation going on inside his body or his brain, man....that kid is amazing. Helpful, caring, kind, positive, loving, and on and on....but when he is having trouble, he's just crying out for help in a ton of different ways. 


Within the past few months of getting Evan to our infectious disease doctor, Dr. C, I've begun to notice changes with his behavior to recognize if he is having a flair. I can tell he is getting sick just by the changes in his behaviors. He starts having issues with sleeping and becomes way more anxious at night. He will say that he "never sleeps". He isn't hungry and won't eat. He has tantrums and huge emotional, crocodile tears where his feelings are hurt so bad. He is bouncing off walls and can't sit still and way more impulsive where he'll hit or throw and the chewing on his shirts starts back up again. He starts having tics by constantly sniffing as well as screaming to anyone who touches him to "don't touch me!". He becomes obsessive with certain toys or screen time or will obsess on repeatedly asking the same question over and over, even after getting an answer. He will pace and walk in circles. The onset of these behaviors is usually sudden and we are learning as we go with this. We got the blood results back less than a month ago, and now we take it a day at a time and hopefully continue to educate ourselves as well as others. 


It isn't "always" all of these symptoms at the same time. When E ran away from school and was found a mile away by a worker at a hardware store, he had had spots on his torso. I asked if he had ate something with eggs (since he is allergic) and he said no. Well, this most likely was a bacteria or a virus and his symptoms were on high alert and he wasn't himself or thinking. His brain was being attacked and he had some uncharacteristic behaviors. Last fall is when we noticed the huge shift in behavior. He was trying to head butt his Brain Balance instructors, spitting, kicking, running away and hiding. This was when we also went in to the doctor to see what was going on, and again he tested positive for Strep. He showed no signs of strep or complaining his throat was hurting. Just a huge shift in behaviors. These amazing instructors were the ones to actually suggest we look into Pandas and getting him tested for this disease. Another time this summer (before finding out he has Pandas, but suspecting he did), he was "off" again and I took all of us to get tested for Strep. Our younger son actually tested positive for Strep with the rapid test and then sent Evan's away for the culture and his ended up being positive too. Neither of them showed signs of strep except for E's change in behavior.
This first week of school, E's behavior was off. Anxieties, impulse, hitting, etc and this morning I took him in to get tested and sure enough....positive strep test.


And what can be confusing is that Evan doesn't exhibit these Panda's symptoms all of the time. He is not always ocd, adhd, anxious, sensory overload, etc. These are just symptoms of pandas that are not always present. Looking back, Evan can be fine for weeks and months at a time. He went 14 weeks this past school year without a referral. That was HUGE for him. He wasn't being impulsive and hitting others. He wasn't running out of the classroom. He will not run when bugs are around. When he is fine, he's fine and when he's not fine, it's hard and overwhelming. 

This video is one of my favorites. He's calm and talking and playing with a flying bug. Usually those stress him out big time. 



I cried when the Cunningham Blood test came back. I feel like we finally have a reason and an answer as to what has been going on with Evan these past 4-5 years. It's been a roller coaster ride for sure and I know we will continue to have our ups and downs, but I know that we will fight this and help Evan's brain recover. 

Pandas kids can recover and go into remission, but it can take months or even years. There may be new flares or a exacerbation of symptoms when they get sick or are exposed to illnesses that trigger the Pandas autoimmune reaction that results in brain inflammation. It's overwhelming for sure. There isn't a lot of attention for this disease and it's especially hard when something is going on with him and he's acting up, for others to look and judge him and his behavior. It makes me sad. It's an invisible disease and hard to explain to people.  I didn't know that an average, normal, everyday infection that we can all be exposed to, can trigger these behavior responses.  That when an infection or bacteria or virus is in him, it triggers a response and the child you see is suffering and you don't recognize him. The behaviors hit quickly with the sudden onset of different symptoms. 

I'm so incredibly proud of my son and everything he has to do to make it through each day. He is such a brave little guy.




Here are some helpful articles and websites
for kids (In a Pickle over Pandas book) helpful for kids and teachers
A new documentary called, My Kid is not Crazy
http://okgazette.com/2016/05/12/third-graders-new-diagnosis-leads-to-calmer-focused-life/


Thanks for reading along and joining us on this auto-immune journey. 
-Kasey




Thursday, August 4, 2016

a look back...

Looking back at these photos, makes me so happy and sad at the same time! It's amazing how fast the years have gone. From the chubby toes and hands to the amazing little boys they are becoming, I'm so grateful for documenting the every day life. I want to get better at telling their stories, our stories, and remembering the little and big things.













Here they are a few months ago. Getting ready to enter kindergarten and 2nd grade. I feel like they were just crawling all over and strapped into the double stroller. Love these two!








Thursday, July 28, 2016

summer slowly coming to an end...


As summer slowly dwindles down to the start of the school year, I'm a little sad that it went by so fast, but also excited to get started again with the school year. My oldest is starting 2nd grade and my youngest will be starting kindergarten! Man...how fast the years have gone by. I can't believe my baby will be in kindergarten! We will all be starting at a new school this year that just opened and I've been slowly getting my room set up, and of course essential oils are going to be in that mix. They help me so much throughout the school day as well as helping to keep us healthy throughout the year. Backpacks have been picked out this year, so I'm hoping we can actually make it through the year without them ripping or tearing....we shall see! ha! 
Hoping to enjoy these last few weeks of our summer with a few different local excursions and then gear up for another school year. 





Friday, July 15, 2016

Friday Faves!

Something that I've been doing for awhile is share what I am loving lately and today is NO different! Today is definitely a happy Friday! The sun is shining, we are halfway through July and we have a fun weekend planned.

Here are some favorites lately to help decorate our new home.


I've always loved Meg Duerksen and have followed her blog for years. She loves color and it just makes me SO happy!

http://megduerksen.bigcartel.com/

Can't wait to hang this print and 2 others in the playroom!




Wishful Printing from Etsy

Can't wait to hang this style in our guest room. I ordered 9 to display on the wall in the spare bedroom and it will fit in perfect with the wall color and new bed spread. WOOT! Love the quotes she has in her shop. 



Artful Life Designs from Etsy created a custom piece for our family. I love it.

I've been wanting to find a piece of artwork or print that shows our family picture in a sentimental way for us. Since we never did get to see our third baby, I felt like this really was a way to share for us. Can't wait to get this framed and hung in our house.






SK Wood Designs


 For the last Friday Favorites I got this from the above etsy shop and I LOVE how it turned out. This little piece is going to go in our living room and I'm excited to showcase both Columbia and St. Louis. STL will always be my home even though we've been here in Columbia for 12 years :)





Monday, June 20, 2016

if you don't mind...

At the end of this month we have a big ol' test and medical stuff going on for our oldest with blood work and information that I am still reading about and learning. Our doctor and our brain balance teachers think E has an autoimmune disease going on called Pans/Pandas. Pediatric Autoimmune Neuropsychiatric Disease Associated with Strep or other bacteria and viruses. We would love your prayers as we start this journey and trying to find some answers.

See more information here at PANDAS Network.

Here is the list of symptoms of this autoimmune/neurological disorder:

 

Symptom presentation and severity can vary from child to child. It can also vary in each exacerbation. Below is a list of possible symptoms a child may exhibit. Not all need to be present. Not all possible symptoms are listed.
OCD (OBSESSIVE/COMPULSIVE DISORDER)
See OCD in a Young Child for a list of how OCD can present itself. OCD is not only obsessive hand washing!
RESTRICTIVE EATING
This includes selective eating to full out food refusal.There can a variety of reasons why the child experiences this, including contamination fears, sensory sensitivities, trouble swallowing, fear of vomiting or weight gain, and more. If restrictive eating is resulting in severe weight loss, call your provider immediately.
TICS
ANXIETY
EMOTIONAL LABILITY
Emotional lability includes not being able to control one’s emotional response. It may include uncontrollable crying or laughing. This is a neurological symptom.
DEPRESSION
IRRITABILITY AND AGGRESSION
BEHAVIORAL REGRESSION
This includes baby talk.
DEVELOPMENTAL REGRESSION
DETERIORATION IN SCHOOL PERFORMANCE
This includes deterioration in math skills, inability to concentrate, difficulty retaining information, and school refusal. School performance can also be a result of another contributing symptom, such as OCD or severe separation anxiety.
CHANGES IN HANDWRITING
This includes margin drifts and legibility.
SENSORY SENSITIVITIES
This can include being sensitive to touch, sounds, and noise. Simple touches may feel like they are hurting. One may not be able to stand the way socks feel or the texture or temperature of certain foods. Sensory processing problems can also cause difficulty in finding an item when it is among a vast selection of items. For example, a child may have a hard time finding a shirt in a full dresser or finding words in a word search.SOMATIC SIGNS
This includes sleeping difficulties, enuresis, frequent urination, and bed wetting.
HYPERACTIVITY

SEVERE SEPARATION ANXIETY
HALLUCINATIONS
This includes both visual and auditory hallucinations.
FIGHT OR FLIGHT RESPONSE
DILATED PUPILS
URINARY PROBLEMS




 Evan has shown these symptoms in the last few years. I had NEVER heard of Pans/Pandas. It wasn't until Brain Balance where he (we now know...was having a "flair") was regressing, spitting, trying to head-butt people, and was in constant fight or flight mode. It would get bad for about 1-3 weeks and then he would go about 10-12 weeks with no problems at all. No dilated pupils, anxiety wasn't on edge. wasn't as emotional, etc. But we were trying to figure out what was going on. This was different than his "typical" diagnosis of Sensory Processing Disorder and Anxiety Disorder. We were still missing something. Brain Balance asked their supervisors what could be going on and they had asked if he had strep recently....and he was diagnosed a few days before following up with us on his behavior,etc. They suggested it was PANS or PANDAS (one is associated more with strep and the other is more viruses/bacterias). We started reading up on it. And we read some more and the more we read, the more it "sounded" like E. We called and talked to our doctor and he said he would get in contact with the infectious disease doctor here in town who specialty is PANS/PANDAS.
We also knew something was seriously going on when Evan ran away from school. :( He slipped through a locked gate and went a mile away from school and crossed a 5 line highway. Thankfully there were some store workers who brought him into the store until the police arrived. So scary and his anxiety and flight response have been getting worse as he gets older and that was the icing on the cake for us. We made an appointment with the pans/pandas doctor and next week we see him. I'm hoping this blood test will help give us some answers on what is going on in Evan's body.

It's scary when your child is sick and you don't know what is going on. It reminds me when he was 2 and was hospitalized. I'm not sure if this is when the "symptoms" started with this, if it is this autoimmune disease, but this is around the time frame when we noticed a big change in Evan with everything.

October 25, 2011
October 28, 2011
October 31, 2011

June 2012 Giving back from our hospital stays 


Today, we've been noticing that E's behavior the last week has been reverting back to huge anxiety stressors....like not wanting to go outside at all because of seeing a bee. He hasn't been sleeping great lately and is highly emotional and then impulsive. I had a feeling he was getting sick. I took him to go get a strep test to see if it was positive. Alex and I also got tested to see if we were carriers. Well...turns out mine and Evan's were negative and Alex's was positive. This explains so much. Alex has NO symptoms of being sick. No sore throat or anything. E lately has been "off" and I'm guessing getting sick from Alex.

If you don't mind could you pray for Evan. Pray that we find some answers and get his body the treatment it needs. Pray that the blood test isn't too traumatic for him on Tuesday.

Thank you
-Kasey

Sunday, June 12, 2016

old and new...




Lots of changes lately. We've moved out of our home that we had lived in for 11 years, but we are excited about our new one and the memories we'll make in this one too! I'm going to be posting some before and after pics in our new home soon. Still unpacking ;)

Kansas City weekend


 A week ago Evan and I got to attend Arrowhead Stadium. This year at school he wanted to raise money for the American Heart Association that our school was doing for the Hoops for Heart. We had enough friends and family donate, that he ended up being a top 100 Regional finalist. We got to see the locker room, lots of games and fun things for kids to do, and also watch a movie on the field. It was awesome to have some mom and Evan time. My high school also made it to the final 4 and we got to go and watch Summit play before the event. They won and it was fun to watch. Made me miss playing! Alex also got his kindergarten shots! Can't believe he will be in kindergarten! Love these two!