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.
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| Aaron at the kitchen table...the only time I let him get this close to it! |
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| The dining room table was a bit safer for him. :) |
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| He wanted his brothers to see he had a TV in his room. |
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| This house had so many fun colors everywhere. |
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| 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.
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| This ball maze was pretty neat. |
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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. |
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| 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."
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| Aaron combines his crackers and cheese snack with his bingo card. |
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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.
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| 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. :)
