{Flashback Friday}

This picture was taken four years ago.....Rhett was 4 and Ethan was almost 2. I love looking back at how much they've grown!!

Rhett came home from school yesterday talking about a book he wanted to buy with money he's been saving. It's called "Diarrhea of a Wimpy Kid!!" he told me.

It took me a minute to figure out what book he was really talking about and try to correct him. I told him what Diarrhea meant, and he was grossed out. He kept referring to that book with the wrong title though, the rest of the night and this morning. He can't get it out of his head....so funny!! After he'd say the wrong title he'd say "Ugh, Ugh, I mean DIARY of a Wimpy Kid".

{Flashback Friday}

I've seen this done on other blogs and thought it would be fun to do on mine as well! I love looking back at older pictures and the memories that come with them. This picture wasn't taken too long ago, just a year ago. Ally and Brittany love to make short movies with the boys as their actors. They turn out soooo funny....often times with subtitles, bloopers at the end, and music too. I can't remember the theme of the movie they were doing in this picture....but your guess is as good as mine!!

{The Cook Next Door}

You've heard me rave about my dear friend Candace before....now I need to rave about her new cooking blog!! It's called The Cook Next Door and you need to check it out!! Everything she's ever made that I've tasted is delicious, and I am so excited to get her yummy recipes! The picture below is one of her recipes, Tortellini Soup. It's sooo good, a perfect soup for winter.

{Thanksgiving}

Can we say a little behind on the blogging? Hee Hee. I want to turn my blog into a few books in the near future...so bear with me as I catch up!

It was our turn to go up to Utah to spend Thanksgiving with the Ashton Family, so we decided to make a few extra stops to see friends, family, and Moab.

The first day we drove to Moab, and stayed the night in a hotel. We had fun going out for pizza and good old Hogi Yogi. That night we swam in the indoor pool where the water was not as warm as one would think!! Of course the boys didn't let that stop them and had a great time.



The next morning we packed up and drove a few miles to Arches National Park. I was very impressed! I wish we could have spent more time hiking and enjoying the breathtaking rock formations. We went on a little hike a mile or so which led us to a nice view of the Delicate Arch. We hiked back, drove around a bit, and then jumped back in the car.



We stopped in Farmington to visit with Paul and Amanda, and their cute kids. Cody and Paul worked together when Cody was in college, for Powerschool (Apple). They had a zipline in their backyard and Ethan and Kade loved it!



Next we drove around Ogden and Layton, showing the boys the houses and apartment we lived in when we were first married. The first house we rented part of the top, and Cody and Lindsay rented the basement. There are lots of fun memories of searching for jobs with Lindsay, having each other over for dinner, and lots of great times together. Next we lived in an apartment, that has lots of memories because that was where we brought Rhett home when he was born. After that we were lucky to rent a home in Layton from Cody's Uncle Thomas. Seeing that house brings back lots of memories: the cherry tree in the backyard, a great ward, dinners with Uncle Thomas, and lots of great times.



That night we stayed at my sister Melissa and her husband Sam's home in Ogden. My sister Brittany was also in town from BYU-I so it was fun to be together and catch up. Melissa is such a great cook, she made us homemade pizza and yummy salad, then dessert and a great breakfast in the morning. The picture below is not fair, I'm the only one with makeup, but it's the only picture I had of our visit with them so I had to post it! They were nice and let me use the bathroom since we wanted to get an early start on our way to Logan.



The next few days we stayed in Logan at Teri and Jace's home. It was fun to be surrounded by their sweet kids and gave Cody and I so much respect to see what it takes for Teri to cook and take care of her nine children! The kids all help out a lot, and they were so sweet to Rhett, Ethan, and Kade.

Thanksgiving dinner was delicious, we had it at Gene and Cassie's beautiful home. Yum!! If you know me, you know I love good food, and Thanksgiving dinner is one of my favorite meals. I don't care about the pie, but love everything else! I guess I am a meat and potatoes kind of girl.



There wasn't very much snow during our trip, but there was some on the ground so the boys got to use their snow clothes a little bit and had snowball fights in the backyard. I think we'll need to go to Flagstaff this winter to get a little more of a snow fix this winter!!



There is nothing sweeter than a sleeping child :o)



The Ferguson kids are great wrestlers, so they shared some tips with the younger cousins....



The best part of the trip was lots of cousin time! I love all the fun cousins my kids have to play with!



The rest of the trip was filled with games, shopping, good food, memories, laughing, movies, and so much fun. We stayed the last night with Boyd and Mona. It was a great trip and made lots of great new memories.

(Kade's lovely turban of wires covered by gauze that he wore in the hospital for his EEG)

My last post on Kade left out quite a few details...while the kids are napping I'll try to fill in some of the gaps!

Last July (2009) was when Kade had his first seizures. He had 5 in 3 days, and we were in the hospital where an MRI was done and an EEG (a couple of hours long). The MRI was clear, the EEG showed abnormal activity on left frontal lobe. We met with a neurologist there, who became Kade's neuro for the next few months, who prescribed Keppra. That worked great for a few months, we didn't see any seizures. The ones he had in July were tonic clonic, the kind you picture when you hear seizure. Stiff, shaking, etc. Then in November we noticed he had two different kinds of seizures. Very short, 5-10 seconds. It was as if he would zone out, we'd call his name and he wouldn't look at us...then he'd snap out of it. He also was doing these little body jerks. After we told his doctor about these strange behaviors we learned the zone-outs were called Absence Seizures and the jerks were Myoclonic Seizures. Myoclonic seizures are bad for cognitive development so he doubled Kade's Keppra and told us to give it two weeks. It worked at first, but after 13 days they were back, and more frequent than other. Other medication was added, but things continued to worsen. And that brings us to my last post, where he began having seizures almost every minute.

His first 24 hours at Phoenix Children's Hospital was pretty rough. The IV team tried four times (both hands, both feet) to put in an IV which resulted in four blown veins. That equals lots of blood, a traumatized three year old, and an exhausted mom and dad who were trying to hold him still while comfort him at the same time. He did earn a Nerf Gun in the process though, which was a lifesaver in those coming days! The staff was great, in the six days we were there he was given the gun, about 10 stuffed animals, Buzz Lightyear, a book, Mr. Potato Head, and a few other toys I am forgetting. He made out better than at Christmas :o)

After the EEG was hooked up we learned that he would be on it at least 24 hours (turned out to be 6 days). The room has a video camera in it, and a nurse is constantly watching him on a video at her station to detect seizures. We were given a button to push when we suspected a seizure, so they could look at the time we pushed it and the activity on the EEG. There was also a sensitive microphone in the room, so for 6 days our every action and word was recorded and observed....yikes!! He was not allowed to watch TV or Movies because it's hard to detect his Absence seizures if he's staring at a TV. At night we had to sleep with the lights on so they could watch him on their screen (luckily near the end they let us turn a couple of them off). He couldn't have his blanket, which he is VERY attached to, because they didn't want anything covering his body when he slept so they could see what he looks like when he seizes. Not fun!!

The first night also was fun when he threw up four times. I guess that is one perk to having the lights on, I didn't trip on anything as I grabbed the vomit bucket and ran to him. For some reason he would go crazy each time he threw up, 3 out of four times grabbing the bowl and dumping the vomit all over him, the bed, and me. I felt bad for the nurse and CNA on that shift, they had a fun time changing sheets and cleaning our room all night. Luckily I had brought several sets of clothing. It was the flu, we found out the next day that both his brothers were sick at home that night as well.

As I said before the next two days were hard, filled with lots of seizures and medications not helping. Things were getting very serious and we were worried he was going to go into a long seizure which can result in brain damage. The doctor was talking about what the next step was, either giving him steroids to stop the seizures or putting him on a Ketogenic Diet, which can be effective for many children who don't respond to medications. The Ketogenic Diet is a high-fat, low carbohydrate diet. It may still be in our future, but is very hard to stick to, especially with other children in the home.

It's funny how your perspective changes so quickly. In July when this all started, as hard as it was we were hopeful that in a few years he would outgrow it, and the only side effects of Keppra were impulsive behavior and irritability. We were desperate to avoid the stronger seizure medications that can cause liver and pancreas damage. However, in the hospital everything changed and we were forced to look at the big picture and trust in doctors to use the strongest medications in order to bring our Kade out of that horrible condition he was in. Now he is on two medications, which so far have been working very well. He has only had one seizure in the 7 days we have been home. We were told it would either slightly sedate him, or cause him to be hyper and irritable. He is hyper and irritable....which is difficult to deal with at times, but manageable. I hope it fades a bit with time as his body becomes more adjusted to the medication. For some reason the medication is not in liquid form as the Keppra was, so we have to crush the pills and give it to him twice a day in food. It tastes gross, so two times a day we have to pin him down and basically force him to eat it.

As I wrap this up, I fear it sounds very negative. I don't mean it to be, but it is what it is and although it is hard we will push through and hopefully make this as easy as possible for Kade. We'll meet in a week with his neuro and schedule the 24 EEG and MRI, and hopefully he will be pleased with his progress and the tests will give us more good news.

We do not know what is causing these seizures, he has been given the broad diagnoses of Idopathic (unknown cause) Epilepsy (2 or more unexplained seizures). He in some ways has traits similar to those with Doose Syndrome (Myoclonic-Asatic Epilepsy), but his doctor is not ready to give him that diagnoses.

http://www.doosesyndrome.com/index.html

Once again, thank you so much for all the support. A big thanks to: Shannen for a yummy meal, the Serros Family for several meals dropped at our doorstep, Lesli sending balloons and a monkey in the hospital, the Steere's for balloons, Cody's mother for flying down to help, Becca, Shelby, and Jennie for watching my boys and fun presents for Kade (poor Jennie watched Rhett for me when he first had the flu and he threw up 3 times at her house), my sister Brittany for coming to my house very early in the morning for several days to get my kids off to school and watch them when they had the flu, Dustin and April for helping with the older boys, Kaija and family for the sweet cards and stuffed animal, Mark and Laraine for visiting, Suzi for letting me shower at your house, all ward and family members who fasted for Kade, and thank you thank you to all other friends and family for the sweet texts, e-mails, calls, and offers of love and support!!

{Kade}

Hello everyone! It's been a long time since I updated this blog....I am way behind. As many of you know, Kade's seizures were increasing in December. His doctor doubled his medication, and when that didn't work, added a new one. At our last appointment with him, he said they would schedule an EEG within the next few days for him. Cody and left the appointment just feeling uneasy, as if he wasn't as concerned about Kade's high level of seizures as we were.

The next day, Kade's seizures worsened. He woke up Tuesday the 5th and was having seizures every minute (they would last about 5-10 seconds). After this went on for an hour, I called my uncle Jeff at 7:30am. The day before he had recommended a friend of his who is a neurological surgeon at Phoenix Children's Hospital. I called Jeff asking him if he would call his friend and tell him Kade's situation, so we would know what to do. Dr. Manwearing called us back, found out Kade's history and what was currently happening, then told us to come to Phoenix Children's. He said he was going to meet with a team of neurological doctors and eptologists who would get a plan together as to how to treat Kade.

When we arrived they hooked Kade up to a video EEG (electrodes glued to his head which record location and magnitude of brain activity), and he stayed hooked up on the EEG for all 6 days we were at the hospital. The first three days were very scary. Different combinations and levels of various seizure medications were used, and nothing was working. Finally on Friday we had a break through and his seizures were greatly reduced. The first three days he was having over one hundred a day that we could see, and hundreds more that are called electrographical seizures, unseen by the eye but recorded on the EEG. By the time we left on Sunday he was not having any seizures, but still was having too many of the electrographical seizures. We are hoping that in these next few weeks or days, the two medications he is on now will help reduce those further. He'll have a 24 hour EEG done soon to see if that's the case, and also an MRI.

Although this was one of the most frightening and heartbreaking times we have experienced, the good that has come of it is that now Kade's care will be provided by an amazing neurologist and eptologist. Dr. Buchhalter founded the Epilepsy unit at the hospital 3 years ago when we came from Mayo Clinic. He's the Chief Neurologist and we feel so confident in his expertise and passion to help children with epilepsy.

Thank you so much for all of your love and support. We have been home a week now, and have only seen one seizure, so things are loooking good. We are hopeful that his current medications will control his seizures and he can continue being the lovable, energetic, and inquisitive 3 year old that he is!