Our Disneyland Trip

I realized that my last few posts have just been about Ryan's seizures and have not talked about all the fun we have had. I thought I would share a few of our pictures and stories to show that our life is not just about recovering from seizures (thank you God) but about Disneyland and riding bikes and growing like weeds.

So, first was our vacation.
Our flight left Denver at 8:30 am so we left our house around 5 after staying up until about 2 trying to get everything ready. The drive down to Denver, parking, and security was smooth as expected with four kids and lots of luggage. This was the kids first time flying since they were little and the first time they will remember. Shaylee and Ryan sat next to the window and were able to get a great view of everything, including the Rocky Mountains, Grand Canyon, desert, and the landing. Claire and Luke did much better than I had expected. Luke slept though most of the flight and Claire was busy lap-hopping from Grandma and Father Michael's laps. I packed lots of books, coloring books, toys and water bottles for the kids.

We landed and found Nana and Papa (my Mom and stepdad) waiting for us at the gate. Collected our bags, and eventually got our rental van to head to the beach. The kids had never seen the ocean so we had to take a trip. It went great. The kids loved walking in the water and running from the waves. By the end, they were soaked! I had just pictured walking along the beach and didn't change them out of their traveling clothes. My mistake! We looked very silly in our jeans when everyone else was in swimsuits or wetsuits so we stuck out like a soar thumb. We had lots of fun and by the end the kids were drenched and covered in sand.

Ryan running from the waves. I just love his smile in this picture.

The beach girls. They both loved it. I finally had to pull Claire away from the water because she did a barrel roll in one of the waves and got soaked. She got covered in sand. It was in her hair, her ear and all over her face. Then it was on me from holding her. She also got very cold and was shivering but refused to get out until I had to take her on a walk along the beach to let her warm up.

Luke was okay with putting his feet in the sand but hated the water. He screamed when we put his feet in the ocean but now we can say he touched it.

Love this one!

Then we checked in to the hotel and tried to put the kids down for a nap. Claire had fallen asleep in the car and was out. The others were wide awake after their short power naps so we just let them watch a movie to keep them still and quiet while other people were sleeping. That evening we went swimming over at Grandma and Grandpa's hotel. They stayed at the Paradise Pier hotel. The pool is on the roof of part of the hotel and it started getting very chilly when we got there. After swimming for a little while, everyone went up to the room to change and visit. Later we took four very tired kids back to our hotel and put everyone to sleep.

The next day, we got everyone ready and walked over to Disneyland. The kids were very excited to see it all but were a little overwhelmed. We walked through the castle first but did not realize that it is a little scary- another mistake. Then they were freaked out so we took them on the carousel and the Peter Pan ride to calm their fears. By then, they were excited and ready to do more. That day we rode the rides in Fantasyland, ate our packed lunches, and I took the kids back to Grandma and Grandpa's hotel for naps. It was awful! They were too excited to lay down and be quiet. Finally, Ryan and Shaylee passed out but Claire was trying everything she could to wake them up and keep Luke from falling asleep. I finally gave up after letting the older two sleep for awhile and working myself up. Christopher came and helped walk the kids back to the park for lots more fun. (Claire, of course, fell asleep in the stroller during the walk back.)

We rode more rides and watched the parade that night.

Grandma and Claire watching the parade. Note the dropped jaw. Alice was their favorite because she made a point to wave and blow kisses to each one of the kids.

Luke and Sarah (Aunt Rebecca's niece who's about one) sharing kisses and hugs.

Next day- more fun! Christopher walked over early with Ryan and Shaylee and Mom, Tom and I walked over with Claire and Luke when the park opened.

Ryan and Shaylee got to meet a few of the characters before the crowds got there and rode a few rides. Later, Mom and I took the girls to meet the Princesses. Little did we know, the line would take two hours! Christopher took Ryan on a few rides while Mom, Tom and I took turns walking the girls and Luke around while someone else stood in line. When we finally got in, we met Belle, Pocahontas, and Ariel.

Shaylee loved meeting Belle and Claire did not want to leave Ariel.
Later, we walked over to the California Adventure park and saw the Playhouse Disney show,, met Lightning McQueen, and rode lots of rides. Big people got to go on big people rides and the kids had a great time in the Bug's Land area and Soaring Over California.

Day three, we went to Toontown and met Minnie and Mickey,

the kids rode their first rollercoaster, and we found Buzz Lightyear!! Part of the group had seen him on Day 1 but we couldn't find him for Ryan, so on day 3 we ate lunch around the area of the first spotting. We had almost given up when he walked out. Ryan was thrilled but acted very cool.

Is it just me or do they look a lot alike?

Bob and Marie took Ryan and Claire back for a nap while Christopher took Shaylee on Splash Mountain and the Matterhorn. She was so excited to go on the big people rides and she was "Brave Shaylee".

It's hard to see but Christopher is in the very back and Shaylee is in front of him wearing a poncho. She loved it!

After naps, we met back up with Ryan and Claire, met Tinkerbelle,

and walked over to California Adventure to see the Pixar Parade. The kids, especially Ryan, really enjoyed that parade because it had a lot of their favorite characters in one place.

Everyone had a great time overall, and the kids are already asking when we can go again.

Ryan update

We had our appointment with the Pediatric Neurologist down at the Children's Hospital in Denver last Thursday. Long drive down there and much longer drive back because we hit rush hour traffic. Very nice hospital that puts lots into being kid friendly. After talking to the nurse, the doctor came in and told us that the EEG came back normal and that they think he may not have any more seizures but if he does to give them a call. We asked all of our questions and kept thinking, "Couldn't our local doctor have told us this?"
Then on Friday, Ryan kept stopping what he was doing to tell us that he thought he was going to have a seizure. I would go with him to lay down and nothing (that we could see) would happen. I thought he was just worried about having another one because we had been talking about them. Later, he was eating and fell over onto me and then was fine. He did this several more times and once when he was standing up and I watched him stiffen and fall straight backwards, I knew something was going on. It was almost like the seizure started but stopped before he started seizing.
That night, he was scared to go to sleep in his bed and wanted to sleep on the floor because he was afraid he was going to fall off his bed if he had a seizure. I really felt bad that he was living in fear of another seizure. I tried to make him feel better by telling him that the doctor didn't think he was going to have anymore seizures and by making a roll to place next to him to help him from falling off.
Saturday, he woke up and didn't say anything about thinking he was going to have a seizure. After breakfast he was climbing up on the couch to sit next to me while I was nursing Luke when he suddenly stiffened, fell back, and started seizing. Christopher held him and he seized for about 45 seconds to 1 minute. Then, he cried and was having trouble with muscle control. After maybe 5 minutes, he was back to normal.
We called the Neurology dept at the Children's Hospital but since it was Saturday, we had to have the doctor on call paged. About an hour later, they called back and let us know that since he had a third seizure we should put him on meds and we could do it then or wait until Monday morning and call back. We decided to wait and Monday morning we called again. After describing everything that happened Friday and Saturday, the nurse talked to the doctor and the doctor called us back. She agreed that he should start on some anti-seizure meds and called in a prescription for a medicine called Keppra.
I talked to the nurse about all the side effects that included tiredness and behavior changes. I started to research this med and found that depression, fatigue, and irritability were also side effects. After reading some message boards, I found out that adults who are starting this med have experienced some huge behavior changes that they call it "Kepprage" because they bite people's heads off. A lot of parents discussed severe problems like anger, sleepiness, and even depression. Not something I want for my little boy! I talked with Christopher, Bob, and my Aunt Rebecca and decided I also wanted to talk with my pediatrician before I started him on the meds.
We had an appointment with our doctor Tuesday afternoon. I talked to him about the seizures that Ryan experienced Friday and Saturday and asked lots and lots of questions. He looked up the risks of side effects and said that all the side effects had about a 9-12% chance. The doctor was very helpful and supportive. I voiced my many concerns about the side effects changing Ryan and we decided that there would be no harm in not starting the meds right now. Since Ryan is becoming more aware of an oncoming seizure, his seizures are short and infrequent and he is able to recover so quickly, and we have a med to help stop a seizure if it lasts too long, the doctor agrres that if we are not comfortable with the risks of this medication we can keep him off of it unless the seizures get worse.