24 Hour EEG Adventure

Last year at this time we were struggling with Aaron's continual medication changes, blood tests, and multiple daily seizures. Sometimes I forget those difficult days, because Aaron is doing so incredibly well now! He takes his Depakote twice a day. He visits our chiropractor once a month, on average. His seizures are under control and we don't see any obvious episodes like we did in 2011 and 2012. We give ALL praise and glory to our Great God for that!!!

At Aaron's November visit with his neurologist, we decided to schedule a 24 hour EEG test to give us an accurate picture of what is going on in Aaron's brain. We see him doing extremely well in school and at home, but we want to know if there is anything we might be missing. As far as we can tell, the only negative side effect from his medication is the restlessness it puts in him. He is constantly in motion--and not just from being a 9 year old boy. The kind of movements I see him make are from his medication, I just know it. I would love to decrease his dosage, but what if we do that and the seizure activity picks up? Hopefully this EEG test will give us some answers as we move forward with his care.

When the nurse scheduled Aaron's EEG for April 10th, that sounded years away from November. But of course it arrived in the blink of an eye. Grandma agreed to keep Braylen and Kaleb while we were gone. A friend of ours let us stay in her very nice house, just 10 minutes from the hospital, saving us from spending 2 nights in a motel. Everything fell into place...and then the weather came along and just about messed everything up...

Rain + hail + ice + snow + wind + no electricity did not stop my husband from going forward with our plans! I am so incredibly thankful for his leadership and for the way he took care of us throughout this adventure. We literally threw our things together in a hodge-podge-let's-leave-town-early-to-beat-the-ice sort of way. I'm not even sure we stopped the car to drop off Ginger at the kennel--we just threw her out the door and kept driving. (Just kidding!) But that is how I felt inside--jumbled and fearful and pretty sure I forgot to pack what we needed and what Braylen and Kaleb needed. We didn't even tell them goodbye since we left (unplanned) during the school day. Parts of the interstate were closing and if we didn't get on the road when we did, we never would have made it.

Well, we made it in one piece and I felt like I was holding God's hand with each step. Our boys back home were in good hands with Grandma. This house we stayed in was a real treat. We were pampered, to put it simply. :) We had the best meal at Mimi's Cafe while the ice and snow pelted the window at our table. We rode the indoor Ferris wheel at Scheel's. Thunder and lightning woke us up during the night, but by morning it was just a light rain. We checked into the hospital on April 10th and I felt at peace. We were where we needed to be.



Aaron at the kitchen table...the only time I let him get this close to it!

The dining room table was a bit safer for him. :)

He wanted his brothers to see he had a TV in his room.

This house had so many fun colors everywhere.

Scheel's is one of Aaron's favorite stores.

Since the hospital was running a bit behind schedule, we wandered around until they were ready for us. By 10:00 Aaron was all hooked up with electrodes and wires and we walked to his room. He had constant video and audio recordings along with the EEG test, so as long as we kept the camera pointed at him he could move around in the room. For the first half of the day he didn't want to get out of bed, since the tight headwrap gave him a pretty bad headache. Watching Bugs Bunny cartoons was the only thing he wanted to do until that headache went away. Eventually the ibuprofen helped.



This ball maze was pretty neat.

The glue smelled bad and Aaron didn't like it. The tech had to scrape each spot
on Aaron's head before applying the electrodes. Poor Aaron didn't like that either.

In his room and feeling better.

The highlight of Aaron's day was playing hospital bingo on the TV. He was the first patient to black out his game card and I called it in from his room phone. He thought it was pretty cool to see the person on TV talk to me on the phone! He got a visit from the prize cart for winning the game. The prize he picked? The movie, "All Dogs Go To Heaven."

Aaron combines his crackers and cheese snack with his bingo card.

Aaron and Daddy made 3 duct tape wallets, and Aaron gave one to each of his brothers.
Can you guess which one he kept for himself?

We had plenty of things to do in Aaron's room all day. I ended up bringing more than we needed, even while rushed and jumbled. :) Derek and I took turns going to the cafeteria or just taking a break from the room. If either of us suspected Aaron was zoning out or having an episode, we had a button to push and a log to fill out. All in all, this was a laid-back afternoon. Aaron liked filling out his menu and eating in bed, watching TV, and playing with the things we brought. A friend suggested we get Aaron some thinking putty, and that turned out to be a really good idea. When he was in pain or too tired to play with anything, he worked his hands through the bright blue putty and it soothed him. It's even called "Crazy Aaron's Thinking Putty." Pretty cool!

I stayed with Aaron that night while Derek went back to the house. I didn't know how well he would sleep with the headwrap and wires and all, but he did really well. It took him a long time to fall asleep, but once he did he was out all night. I slept about as well as to be expected on a hospital couch/bed. Aaron woke up when breakfast came at 8:30. Just before the electrodes came off his head, two pet therapy dogs came to visit Aaron. They only come on Thursdays, so it was pretty neat we were there! The first dog was a silky white Golden Retriever named Olive. She rested her head on Aaron's bed and let him pet her. The second dog was a dachshund named Roxie. She had each of her nails painted a different bright color.

Aaron and Olive

At 10:30 the gear came off--freedom! We washed Aaron's hair over and over, but the glue was like cement in his hair. It felt so good to pack up our things and walk to our car. Our stay was easy and fun compared to other kids' reasons for being at Children's Hospital. It was a myriad of emotions for sure. We won't have any results from Aaron's test until next month, or maybe even in June at his next doctor appointment.

We drove home anticipating his birthday the next day, and I felt like I had much to celebrate. Putting this test behind us felt so good. Derek really made this time fun and light-hearted. While we would not choose this road for Aaron, God allowed it and I know He's refining us through this. Now we wait and see what is next. :)

Picture Catch-up

Here are a few pictures to tell more of what's kept us busy this past month. First, Derek's grandma turned 90. She is a sweet lady and we are blessed to have her close by. :) My grandma turns 90 later this year. Hopefully we'll make it to her party, too.

On March 30th-31st we celebrated 10 years of living in our house. Much of the building process is a blur to me now. (I think that is a coping mechanism!) But one thing does stand out--the day the house was done and move-in-ready! 10 years later, we had a fun family weekend. Kaleb finally bought his new 26 inch, 18-speed, blue and silver bike. Derek taught Braylen to shave his face--one thing I know absolutely nothing about. It makes my heart happy to see him teach Braylen this masculine task. Our sons are growing up before our eyes, and nothing makes me realize that more than watching my firstborn son learn to shave! The weather was gorgeous and we spent lots of time outside. At that point we had no idea how snowy April would turn out to be!

Braylen showing off his dunk.

Aaron graduated to a new bike too--Kaleb's old bike!

I ordered this 12 inch cookie from the bakery. At the time there were no desserts in
our house--horror of horrors--so this cookie came at the perfect time!

Easter Sunday fell on March 31st this year--which would have been my grandma's 87th birthday. In honor of her, I bought an Easter lily through our church. We brought it home after the services that day and have enjoyed it very much. It brought Derek's allergies out from hibernation...he didn't enjoy that so much! Easter was a fun day filled with celebrating our Risen Savior. The kids told the Easter story through resurrection eggs during dinner at Grandma's house. They hunted for Easter baskets, and played with new water cannons in the yard. It was a busy day, but it was filled with all the right things--faith and family. :)

My handsome fellas

We had Aaron's birthday party with his friends before our trip to the hospital for his 24 hour EEG, which was our best decision ever! Derek's aunt blessed us with 8 tickets for the hockey game, so we figured that would be a great party for Aaron. He's loved hockey since he was 3! The boys played at our house for a bit, ate homemade pizza for supper, opened gifts, and had cupcakes--then came the hockey game! Aunt Sally told the arena it was Aaron's birthday, so during the game his name was announced, put on the screen, and he won a free Dairy Queen ice cream cake! How cool is that! The seats were in the front row, which meant the boys spent most of the time hitting the glass with their hockey pucks. (a no-brainer party favor!) Derek and I wished we had earplugs. Yep--we're old now. :) Even though our team lost, at one point during the game Aaron said, "This is the best hockey game ever!" I count that as a win. :)

Look at those smiles! See the hockey pucks by the glass?

The next day, Sunday, April 7th, God gave us a spectacular rainbow. My picture doesn't do it justice. To me, this rainbow was a reminder that God is faithful, and I can trust Him to bring us through whatever comes our way. Aaron's EEG was looming over me in the week ahead, with all its unknowns...and that deserves its own post. Next time!

Aaron is 9

We have been busy living life--too busy for me to keep up with my blog it seems. Since spring break we: celebrated Great Grandma Muriel's 90th birthday, took Kaleb to the store to buy his long awaited new bike, taught Braylen how to shave, celebrated living in our house 10 years, celebrated Easter, gave Aaron a birthday party with his friends, took Kaleb turkey hunting, took Aaron to Children's Hospital for a 24 EEG test, (then buzzed his hair to get rid of the glue--I miss his longer hair but it will grow back!) and finally--celebrated with Aaron on his birthday TODAY!!!

Maybe next time I can post some pictures of our latest adventures. There is much to tell. But for tonight, I have just enough energy to highlight Aaron's birthday.

His party with his friends :)

I realize we celebrate birthdays every year. It should not be a surprise to see my youngest son turn 9 years old. But when I can remember so clearly when his brothers each turned 9...it is hard for my heart to catch up to what I see with my eyes. Aaron is 9 years old. I admit I still treat him like he's 6. Or maybe 7. I need to work on letting him grow into the young man God has planned for him to be, I realize that now. One thing that he still likes to do with me is snuggle...thank you, God, for that! :)

Aaron at 9 years old:
He makes a funny farting sound with his hands--frequently.
He's loud all day long.
He asks me questions I can't answer--like why did God give him his blank-outs, and if God allowed it to happen to him, then why do we give him medicine to stop it.
He prays for our soldiers every night.
He loves his brothers more than anyone.
He loves to fish!
He has lots to say to anyone who will listen.
His favorite car is a camaro or a dually pickup truck.
He may be little but he is strong!

Aaron at our family party tonight.
His cake had Yoshi on it from Mario Kart.

I like the quote on my mothering calendar this week. It says what my heart feels. :) "Children and mothers never truly part, bound in the beating of each other's heart."~Charlotte Gray

Happy Birthday Aaron!!! You are well loved!!!

The Garden in the Mountains

Finishing up our spring break trip...

While Aaron stayed at Aunt Sarena's house, Kaleb missed him. He would say, "I miss Ron. When will he be back?" (Kaleb calls him Ron for short...aaRON. Get it?) It is good to know he misses him. Sometimes I think they get a little too much of each other. :)

We reunited with Aunt Sarena, Daniel, and Aaron just before lunch and drove to Garden of the gods park. It is one of our favorite places in the Springs. We had a picnic lunch there and spent much of the day exploring. We all did lots of climbing. Braylen and I took lots of pictures. Derek held Danny a lot. Aaron liked finding small places to hide. Kaleb took Aunt Sarena with him on a climb. It was lots of fun for all of us.

It looks like our lunch consisted of 1 can of Pringles per person. Ha! :)

Notice the stroller on a path not made for strollers? :)
We took turns lifting it up the "steps."

This picture captures Aaron's personality.
At times he is so persistent he almost convinces me he can move mountains!

Braylen the photographer.
"Look, Uncle Eric, your old camera is in good hands!" :)

Aaron's favorite "cave" of the day

Kaleb with a very faint Pikes Peak in the background

A family picture + Danny :)

Not sure why they weren't in the other picture with Kaleb, but oh well!

We spent quite a bit of time watching two people climb one of the rocks with climbing gear. And when I say rocks, I mean very tall-mountain-like-rocks. The boys were fascinated. At some point during this trip Kaleb declared, "I was made for Colorado." This brings me to some funnies from Kaleb on this trip.

Kaleb spent half of our trip to Colorado riding in his aunt's car. (We followed her the whole way there.) She is really good at making conversation. Even with a kid like Kaleb who is content to be quiet with his thoughts. Here are some of their conversations in the car...

"Aunt Sarena, sometimes I get these urges...you know, urges to steer with my hands and work pedals with my feet...do you ever get urges like that?"

Sarena: Kaleb, do you know what mountain that is? Uncle Dave and I have hiked up it!
Kaleb: Yep! Mount Everest!
(It should have been Pikes Peak!)

Sarena: Kaleb, are you having a good time?
Kaleb: I'm having the time of my life!!!

They also kept track of license plates together, and continued to do that while we were in CO Springs. If you ever want to see lots of different state plates, CO Springs is the place to be. It's like one huge melting pot of America.

Now for a funny from Braylen. Yes, Braylen! He saw this sign near our hotel and asked, "What's D-I-P stand for?" Umm, it means there's a dip in the road. Ha! :)

After a fun-filled day in the park, we grilled hamburgers at Sarena and Dave's house for supper. Braylen spent the night this time, while the rest of us stayed at the hotel one last night. This trip passed quickly for us, but I feel like we did a lot without rushing around a lot. That is the best way to have fun on vacation, in my opinion.

We were blessed with beautiful weather, a healthy family, generous hosts, a great hotel, and lots of special memories. :) Another spring break to be thankful for!