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!















5 and 7

I am not sure how these two are already 5 and 7. Both are obsessed with Jurassic World and Legos so that was the theme this year. :)
Happy birthday to the two best things in my life! Love you both!
















Saturday, June 11, 2016

Congrats Mike!

Mike graduated with his 2nd masters! We are so proud of you! Now to finish the phD! love you!







Photo by Shane Epping

Monday, April 25, 2016

Weekend Recap

I'm not even sure I can put into words this weekend. Friends. Education. Familiarity. Family. Real life. My tribe. Life. Learning about myself and how to grow my business. How to grow my team. How to grow as a person. Self reflecting. Connecting as individuals. Personal real life stuff. It's honestly a lot to comprehend and take in. I'm so blessed to be a part of these individuals. This team. These people. Helping. Educating. Taking time for myself and my business. Just spent the last weekend in Salt Lake City. Going to the farm, seeing the Seed to Seal guarantee. Learning. Growing. Just simply amazing. 
















me....



Lately I've had so many thoughts running through my head. About who I am. What I want to do. How hard this last year has felt. Overcoming obstacles. Enjoying life. Sacrificing things. Laughing. Crying. Questioning? Advocating. Traveling. Teaching. Sadness. Happiness. Lots and lots of emotions. I feel like I'm juggling a lot. And I know I am. 

We lost my Grandma last July. I still don't think I've actually gotten over it. I was the only one with her when she passed. I am so thankful that I was with her but it was also the hardest thing I might have ever gone through. I miss her. alot. 

The miscarriage that we had this year also rocked me. Tomorrow is the due date of our angel baby. I just don't have any words. Still struggling with this one. 

Also we are having some health issues with E and trying to figure out what is going on. It's scary. Hard. Overwhelming. I've been researching and advocating and trying to bring awareness to what it might be. Still waiting for some final testing and blood work to be done. 

We have also had some really fun things this year. Alex is loving soccer and Evan is loving gymnastics. We sold our house and bought a new one with a closing date in June. I've traveled for my Lemondropper oil events and leadership retreats. Mike is graduating with his second masters in May. Life is good. really good. It's all about finding some balance and being thankful each and every step along the way. 

I love blogging here. I miss blogging here. I am going to make a regular commitment to getting back to what I love. To finding time to write here. Celebrate the fun. the silly. the good, bad and ugly. 

Making a goal to start hustling here in and writing our family memories down again. 

Let's find some balance. :)
xoxo
-K




Sunday, December 13, 2015

2015 Birthday Celebrations!


May is ALWAYS our busy month. It's the end of school, we have 7 May birthdays in our immediate family as well as mother's day.

This year Evan turned 6 and Alex turned 4!

To see our previous birthday celebrations click here...


Alex wanted a Paw Patrol party and Evan wanted an Avenger party. Thankfully this year the party was small. Just a couple of friends and their cousins. It was low key and I loved it. :)


This paw patrol rescue center... we got on Zulily but it can also be found at Target



 Their amazing invites and thank you cards were from LCMomCreations on Etsy




Alex's 4 year old Paw Patrol shirt came from Zulily and Evan's shirt came from Odell Sisters on Etsy









 I made their birthday sign in photoshop and had it printed poster size from Sam's Club




The paw patrol masks were from Momma Cricketz on Etsy. I love them. Great felt and quality. :)









 Definitely had fun with this low key birthday! They are growing up so fast!