Swick Family Update

I looked back at the blog and realized we never put on there what has happened in our life since Jaron was diagnosed with a rare form of epilepsy, known as Doose. Below is explanation of what has happened over the past 8 months

In March, Jaron got sick. He started running a fever and had a febrile seizure (a benign seizure caused by fever). Since he was already diagnosed with mild form of epilepsy, I knew being sick can cause extra seizures and didn’t worry about. He went the rest of week with no issues. However, a week after he got sick, our life changed. On March 10^th, I was holding Jaron on the couch before leaving for church, when he had a tonic clonic (commonly known as a grand mal). Thinking it was from him being sick again, I didn’t worry, but decided to keep him home to monitor him. After the first tonic clonic I laid him back in bed. He slept for 2 hours. When he woke up, he had another tonic clonic seizure. This time I called his neurologist and we were told to take Jaron to hospital to see if there was anything seriously wrong with hims. While in the emergency room, Jaron was not acting himself. He wouldn’t eat or drink anything. He was super fussy and nothing made him feel better. It was like he was confused about where he was at and who was with him. His brain was not functioning right. After spending all afternoon in the emergency room they decided to admit Jaron for observation.

When we got to his room we talked with the pediatrician. She basically thought we were over reacting. After all, he is a kid with epilepsy who is sick. Of course he would be having seizures.  While talking with her Jaron fell asleep on a chair. By now it was 7pm. It had been a long day, so I laid him in bed and put myself to bed. Jason went home to take care of Josiah and to sleep. At 8:30, Jaron awoke again and had his 3^rd tonic clonic. The pediatrician decided 3 tonic clonics in one day was not a good thing, so she called up to Doernbecher Children’s Hospital to ask their neurologists what to do. Jaron was given a medication through IV.

The next day we went home. We took it easy and we all slept a lot. Tuesday morning Jason went in to check on Jaron. A few minutes after being with Jaron, Jason runs into our bedroom with Jaron in his arms. “I think he is having more seizures.” I looked at Jaron. He wasn’t shaking or twitching. He looked fine. “Why do you think he had a seizure?” I asked. “Because when he was sitting in bed, his face went blank and he fell over. Like he passed out for a moment.”

Unfortunately, Jason was right. That “drop” would be the first of hundreds of drop seizures Jaron would have. Over the next 2 months Jaron’s drop seizures increased. He also would have absence seizures where he would space out in mid sentence. We added a new medicine which would help for a time, but then the seizure count would go up again. The neurologist we were seeing seemed too busy to take the time to help us. As we watched our son fall and hurt himself with not a lot of help from the neurologist, I decided to do my own research. I learned about a syndrome, called Doose Syndrome. It is a rare and hard to control epilepsy. It fit all the characteristics of what was happening to Jaron. In my research, I learned the ketogenic diet was the most effective way to treat the syndrome when 2 medicines had already been used and were unsuccessful. The ketogenic diet is a high fat, adequate protein, and low carb diet.  It causes the body to enter into a state of ketosis, where the body uses ketones to feed the brain rather than glucose from carbs. For unknown reason, this often helps in controling epilepsy. The hard part about this diet is that all Jaron’s food would have calculated to a certain fat to protein/carb ratio. His food would also weigh to the tenth of gram. In other words, it was going to a  lot of work. I told Jason what I had found and we began preparing the family for the strict changes in Jaron’s diet. We contacted Jaron’s primary care doctor and asked her to make a referral for Jaron up to Doernbecher Children’s Hospital. We wanted to see Dr. Wray, head of the ketogenic diet clinic. We were told 3-4 weeks to wait, which is really fast in the pediatric neurology world. Often it can take months to get in. We were content to wait knowing we had a direction. While we waited we found out there was another family in the area whose daughter was on the diet for her epilepsy. On May 4^th, I went over to their house to talk with them about what to expect and how to get started. Upon leaving their house, Jason called and said Jaron was having a drop seizure every 2 minutes. He had over a hundred so far that day. We decided enough was enough and headed to the emergency room. The doctor there agreed Jaron needed help and needed it now, so he transferred us to Doernbecher the next day. At Doernecher, the doctors confirmed what I already knew. Jaron has Doose Sydrome and the ketogenic diet was a good treatment plan for him. We were at Doernbecher for 5 days as we started Jaron the his new diet and learned how to calculate his food.

I would like to say Jaron responded immediately to the diet, but that wasn’t the case. While his seizures did go down from 100+ to 40/ day Jaron was still hurting himself. During this time Jaron  put his front teeth through his bottom lip several times, he always had bruises on his face, and we made him wear a helmet. 3 months later after tweaking the diet and medicine we started seeing seizure free days. It was the longest 3 months of my life.  Jaron had his last drop seizure on August 13. He went two months seizure free. Now he goes 2 weeks seizure free and then has 2 or 3 tonic clonics around 6am in the morning. But we haven't seen a drop seizure in 3 months. While we would like Jaron to be completely seizure free, we are grateful that he is no longer falling and hurting himself and is living a normal life now.

Since Jaron is on a diet that can have serious side effects if not monitored, Jaron has to see the neurologist every 3 months to make sure his body is handling the diet okay. We have another appointment in December and we will discuss other options to get Jaron completely seizure free.

As I wrote earlier, Doose Sydrome is hard to treat. Sometimes treatment works for awhile then quits working. We ask that you continue to pray for our little guy, that he can be seizure free. If we can get total seizure freedom for 3 years he can go off his diet and medicine and be seizure for the rest of his life.

Thank you to all our friends and family for their love, prayers, and support during this stressful time. We couldn’t do it without you.

Tough Stuff

Here is what we have been dealing with since March 10th. It is not fun.

Wyoming

Our second trip of the summer was to Wyoming to visit my family. The day we arrived in Lander, Josiah turned 5 and I turned 30.

 

Here is Josiah with his ice cream cake.

 

Since Josiah was born on my birthday, my birthday often goes un-noticed, but this year Jason and my sister made it special by making me a homemade pecan pie.

 

Before we arrived in Lander, my dad buried some treasure at one of the local parks. He made a map and gave it to Josiah. Josiah got us to where we needed to go. I have a video of the treasure hunt, but not a picture. Here is picture after we found the treasure. Later in the week my dad took the boys down to the bank and they got to deposit there treasure into their own savings account. 

 

Grandpa and his boys at the park.

 

We helped my dad build an overhang at a neighbors house.

 

One of the days Jason and I got away and went on a hike. We walked 4 miles on the Stough Creek Trail. After 4 miles of uphill, the trail opens up and you get a beautiful view of the inside of the Wind River Range.

 

My toughy lifting rocks. :)

 

At the end of the week we went up north and visited my Grandma, aunt and cousins. We spent the evening at the fair. This is us with my grandma.

The next day we had breakfast with my grandpa and then we started driving toward Oregon. The next post will be pictures at Yellowstone.

Nebraska

This by far has been the busiest summer we have had. Jason had some extra responsibilities at work this summer. But scattered throughout the busyness we made sure to take some vacation. At the beginning of the summer we headed to Nebraska to visit Jason's grandparents and extended family.

 

To get to Nebraska we flew to Denver. Then Jason's sister and her husband let us borrow their truck so we could drive the rest of the way. They saved us a lot of money. Both boys have been on a plane when they were babies, but this was the first trip that they would actually remember.

 

Jason and Josiah on the plane.

 

Amanda and Jaron

 

After a  nights stay in Denver we continued on into Nebraksa. While traveling through Nebraska, we stopped at the Cabela's in Sydney. Here is Jason and the boys looking at the stuffed animals.

 

We stopped in Ogalla, NE for the night to vist with Jason's Grandma Swick and Uncle Chancy and Aunt Teresa.
The boys with Grandma Swick.

 

Here is Chancy and boys watching a tactor on the street.

 

After two days of traveling we finally made it to our destination, Sargent, NE. Jason's Grandpa and Grandma Hansen have farm. While on the farm the kids enjoyed playing with the kittens...

staying cool by playing in the pool...

 

reading books with Grandma Debbie (Jason's Mom)...

 

playing cards with Grandpa Chuck (Jason's dad)...

 

and going on 4-wheel rides with Great Grandma Pauline (sadly I do not have pictures of this).

 

 

We had really good time, even if it was over 100 degrees everyday. It was good to get away from the busyness for awhile.

Daddy we love you because...

Thank you Daddy for all the sacrfices you make to provide for our family. Thank you for always making it a priority to spend time with us even when you are really busy. We love you!!

Changes

Lots of changes have going on in our life and around the house. The biggest one is Jason graduating with his Masters. We received his diploma in the mail yesterday so it is official. It is nice to not have school work hanging over our heads when he gets home. When he is home, he can focus on hanging out with the family.

I would like to say that since Jason has finished school that life got less busy. That has not been the case. We are redoing the front yard. We are making progress, but it is not going as fast has we would like because of the other stuff going on in life. The grass is coming in nicely. The pathway is a slow process, but we are almost ready to start laying the rock. You can see the outline of the path on the left side of the picture.

Today we found a table with 2 leaves and 6 chairs for only $200. The chairs are solid wood, but the table top isn't. We wanted solid wood, but after a year of looking, there was no way to get table this size with a solid wood top for less that $600 and we just are ready to put that kind of money into a table. I am okay with that because this table will provide the extra space we need to have people over for dinner without everyone feeling squished.

I was mowing the yard a few weeks ago and almost ran over these little guys. It had been awhile since had mowed because of the rain.  I saw something black in the grass and thought it was a rock so I stopped the mower to move it. I realized what I thought was a rock was a nest full of birds. Mama bird made the nest up against the house on the south side. We had the birds around for about a week before they were big enough to leave. It was fun to have them around.

That's fun we are having at our house. Now I better get outside and help Jason work on the pathway some more. :)

Fun outside

Here is what we were up to this past week:

Playing in Jaron's crib.

Playing on the slip and slide. This is Josiah's friend Samuel.

Going to the park.

Eating snacks.

Hope you are able to get out and enjoy the weather, too. Now I am off to mow the lawn. :)

School pictures

Here are some pictures of what we did last month in school. Josiah is getting better at writing. He is getting better at sounding words out. 

Jaron likes to participate during school also. I typically just give him worksheets or a whiteboard to draw on while I work with Josiah. Jaron learns a lot just by listening. He's learned a lot of his shapes and numbers that way.

Last month was fish month. I bought a full fish for the boys to study one day. Here is Josiah explaining to Jaron the different parts of the fish.

We also went to the aquarium and read lots of books on sea life. It was a fun month. We are winding down school for the year. Josiah likes school, so I will probably continue to do worksheets with a few activities, but not spend as much time working on it during the summer. Because Josiah turns 5 so close to the kindergarten cut off date we will keep him home another year.  I've talked to a lot of people and they all said you want to keep a boy out an extra year because boys mature slower than girls.

2012 Easter Egg Hunt

Here are pictures from this year's Easter Egg hunt. Jaron had a better understanding of what was going on so he had a lot more fun. Josiah of course knew what to do and he collected a lot of eggs. After is was all done, some of the older kids replanted their eggs for our kids to find again. Our kids are spoiled.

Then we got a few pictures up in the tree.

Jaron Singing

I know I haven't posted anything for awhile. I got off my weekly rhythm, but I am slowly working back into things.

A lot has happened since I last posted. My parents came out for a couple of weeks and we tore up the front yard. There were some drainage problems with it. Plus had a whole from a tree we took out when we first moved in that we needed to fill in and we wanted to add a rock pathway so the best way to accomplish all of that was to just tear it up and start over. It was a lot of work, but I think it was worth it. I will put up pictures when the grass starts coming in.

Jason finished up his last class of his Masters. He took his comprehensive Bible exam and is waiting to hear back if he passed. If he passed then he will DONE!!! He has been taking classes for 7 years. It will nice to have a summer where he doesn't have to work on school work.

We finally made it to Jaron's neurologist appointment. The first appointment was cancelled due to snow. The prognosis is really good. It looks like he will be on medication for two years to keep him seizures free and train his brain not to have seizures. Then we will wean him off his medication and hopefully be done. Jaron's verbal skills have grown by leaps and bounds. He is singing and talking in sentences now. He knows most of his shapes and recognizes several letters and numbers. He learned all of this from watching his brother.

Josiah is continuing to learn a lot. Reading simple words is getting easier. He can almost count to 100. He is learning how to add by one. He isn't enjoying the worksheets as much right now (I think he has spring fever) so we have been reading lots of books and playing learning games. I wish we were playing outside, but we have only had a few nice days this spring. The rest of the time it has been raining. The books he likes to read right now are comic books and Great Illustrated Classics. Jason got him hooked on Spiderman comic books. Now Josiah is likes to pretend he is Spidyboy and tries to climb the walls with his "sticky" hands. I am considering finding a place to make a climbing wall. :)  I got Josiah on Great Illustrated Classics because the shorter books were getting boring for him. I like these books because they are chapter books, but every page is a picture for him to look at while I read. We read one book about every 3 days because he is always wants me to read.

I don't have any pictures, but I took this video of Jaron singing with my computer camera. It is kind of fuzzy, but I think it is cute.

While Jason was away...

Jason was gone to Memphis for his last class for his Master's. After 7 years of schooling we are finally seeing the finish line. We are very excited.

While Jason was away we tried to keep busy. I scheduled extra stuff in the evenings, like library story time and time with friends so we could get away from the house more. I stayed busy getting the garden ready for planting and organizing the house. My friend Jasmine helped me organize the boys' toys which has been a huge blessing. It is much easier to keep the living/dining room area clean now. She got me excited about organizing so I kept going. I organized our craft/homeschooling corner, my desk, and Jaron's closet. My bedroom is pretty organized, so now I just have to go through the hallway closet and Josiah's closet and I will done with my indoor cleaning. If summer ever comes (it snowed today) I can enjoy being outside and not have to worry about the house.

Last week was Moon week in school. Here is a picture of Josiah helping create a memory game with the different phases of the moon.

During moon week we learned about the phases of the moon, why the moon changes, took an imaginary trip to the moon, and watched some videos of the astronauts on the moon. He can count to 30 and is close to being able to count backwards from 10-0. We are still working on skills to prepare him for reading and sometimes he will challenge himself and read a word from signs he sees. He is even trying to spell simple words by sounding them out. It is amazing how fast kids learn.

Socially Josiah is really blossoming right now. He went through a shy phase for about 2 years. We have been talking to him about how to talk with people and making new friends. Recently he gained a lot of confidence so we enrolled him in soccer. Today Jason took Josiah to a free trial to see if he would like it. Jason said Josiah walked right up to the teacher and started talking to her with no problems. The free trial was of the beginning class since Josiah is new to soccer. Josiah's teacher said he did such a good job following directions and participating, that in a couple of weeks when the new soccer season starts, we could put him in the next level up. Josiah came home very excited so we think this will be a long term thing for him.

Jaron is doing really well. He has not had a seizure in two weeks. His vocabulary is growing by leaps and bounds and it is so fun seeing his personality come out. He is a really funny kid.

Jaron Dancing

Here is a fun video of Jaron!

Josiah's Crazy Thinking

Here is a fun video of Josiah's creativity. Enjoy!!

Jaron

As many of you heard, Jaron has been having seizures for the past 2 months. He is on medication and we are waiting until his first neurologist appointment to get more information. Despite having seizures 3-4 times a week, Jaron is a normal, active, learning 2 year old. Here are some things he enjoys doing.

He is a very loving kid and likes to give hugs. He especially likes to give hugs to Khalil.

He also likes books. His favorite is the Bible. He is always carrying around a Bible asking to me to read a Bible story. Here he is in a fort Josiah made reading a Bible.

He likes sports, especially football and basketball. Since we don't have a T.V., Jason and I watch West Virginia basketball on ESPN 3 on the computer. Now Jaron recognizes the ESPN symbol and will ask to watch ESPN. He is fan of the "Beebers" (Beavers), Broncos, and the Packers.

He also likes hats. Especially hats that have the sport icons on them.

Here is a fun video of Jaron playing with a basketball

Preschool

Once again blogging has fell by the wayside. I think about it often and then get overwhelmed with all the things I could write and then I don't write at all. This year I have lined out a schedule for myself so I can keep up on things. I have been doing pretty well so I decided I would add this to my regular schedule. I hope to blog once a week. We will see how it goes.

There are so many things I could put up from the past two months, but I am going to start with the present. If you want to know what we were up to over Christmas you can call or email. :)

Since Josiah is 4 he could go off to preschool, but for lots of different reason we are choosing to keep him home and we have been doing a regular preschool time 3-4 times a week. It has been fun seeing the progress Josiah is making. He knows all his letters and sounds. If I give him a word he can tell me what it starts with. He is beginning to sound out simple three letter words. He is getting good at writing his name. One top of the basic reading, writing, and math stuff, I also provide an activity where he gets to build and be creative. Below our some pictures of what we have done.

Not a great picture of Jaron, but we turned a cardboard box into a house for them. This a picture before we put in the door and the windows.

Josiah making a nest out of blankets and pillows.

All three got to play with dried black beans and cooking utensils. This entertained even the little ones for 30 minutes.

One day I put shaving cream on aluminum foil and Josiah practiced writing and then he drew pictures. He really liked this activity.

Jaron got to play, too.

Lately Josiah has been interested in outer space and rockets. We went to the library and got a few books on the topic. Besides reading to him, I decided I would give him a chance to make his own space ship. I collected a bunch of materials he could use and told him to design and make one. First, he made a drawing so he would know what his rocket should look like.

Here is what he put together. After this picture was taken he decided the rocket boosters (yes he calls them rocket boosters) were not correct. They were too flimsy and they wouldn't hold rocket fuel. So he cut some more cardboard and made better rocket boosters. Unfortunately, the space ship could not fly because there was no astronaut to fly it, so today we made an astronaut and a moon. The astronaut has made several missions to the moon today.