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.

Thursday Update

Ryan still has not had another seizure since the one Tuesday morning. He has been happily playing like normal and has really been such a good kid through this all. He had his EEG this morning and made it look easy. The lady said that they have had adults and older kids who could not sit still or handle the test as well as he did.
He also did much better last night than we had expected. Christopher and I stayed up with him until midnight. The boys had fun wrestling, having pillow fights, and trying to teach Luke how to crawl. Then Ryan was allowed to sleep from 12 to 4 am. It was pretty amazing because Christopher didn't wake up to his alarm to wake Ryan at 4 but at 4 on the nose, Ryan came walking into my room because he needed to go potty, so we didn't mess things up after all. After 4, Christopher took Ryan to Walmart and let him ride a bike around the store and play in the toy aisle. Christopher said he got a few looks from people thinking he was a bad dad for having his kid out at that time of the night. After shopping, the boys went out to breakfast and Ryan decided that he wanted to start his own restaurant called "Daddy and His Big Boy's". He kept saying, "Just me and my Daddy." I guess he really enjoyed all of that one on one time.
Then the boys picked me and Luke up from home and we went over for his EEG. We won't know the results for a few days but he did everything they wanted him to do including staying still, staying awake for awhile and then falling asleep. He was great! Now, Ryan seems a little sleepy but he is still going strong after only getting four hours of sleep. I am sure that he will take a good nap today. I just hope the other kids take a good nap too because I know I'm pretty tired and poor Christopher keeps falling asleep. :)
No tests or appointments scheduled until we see the pediatric neurologist in two weeks.

Update on Ryan

For those of you who haven't heard I wanted to fill you in on Ryan. Monday night I had just drifted off when I awoke to hear Ryan crying a very strange cry at about 10:15. When I walked into his room he was still doing the strange cry and was tossing around in his bed. I automatically thought he was going to get sick so I ran in and scoped him up and carried him to the bathroom. He was unable to stand and when he tried to talk, it didn't make any sense and it seemed like his tongue was swollen. I knew something was wrong so I called Christopher and asked him to hurry home because Ryan was acting so strange. By the time Christopher got home (about 10:30), Ryan was just about back to normal. We were not sure what happened but figured that he must have been sleepwalking.

The next morning at breakfast, Ryan was sitting in his chair across from me eating his cereal when he suddenly stiffened up and fell sideways out of his chair. I grabbed him and handed him to Christopher as he started having (what we now know was) a seizure. His eyes rolled back, his body stiffened and relaxed over and over and he started making a low guttural sound in his throat. Christopher held him and I called 911. The seizure lasted about a minute and then he started doing the same strange cry from the night before. When the firefighters and paramedics arrived he was still crying but was acting more normal except that his balance and speech was off. They told us that unless he had another episode in the ambulance or in the ER, they couldn't do much for him other than to tell us to follow up with our doctor as soon as possible.

After spending the day on pins and needles and trying to keep a constant eye on Ryan, we took him to his appointment at 1:30. After spending almost two hours in the office, the doctor agreed that Ryan had two seizures and that it was a cause for concern. We also discussed my family history of seizures. The doctor scheduled a MRI, an EEG, and gave us the number to make an appointment with a pediatric neurologist at the Children's Hospital in Denver.

Ryan had the MRI last night and was such a courageous little boy. We were put in a little room without a bed or chair for about two hours before they finally put him in a bed and ushered Christopher and I back to the waiting room. Since you have to be completely still for about an hour during the MRI, they had to put him under anesthesia to put him to sleep. He was very cheerful and showed no fear. The hardest part was that he wasn't allowed to eat or drink anything before the MRI so it ended up being almost 10 hours before they finally gave him a Popsicle. He was very excited when they wheeled him out of the hospital in a race car wheelchair.

He is doing fine today but a little disappointed that he can not have any sugar until after his EEG tomorrow morning. We will have to keep him awake until midnight tonight and then keep him awake from four in the morning until the EEG at 7:30. It may be very difficult because when Ryan gets tired, he will fall asleep anywhere. Luckily, Christopher is used to working nights and we are trying to plan fun things for them to do.

So far he has gone over 24 hours without a seizure and has been a real trooper through it all. We have a follow up appointment at the Children's Hospital in two weeks.

Anyone have any suggestions on how to get the medical tape goo off of skin? I have scrubbed and rubbed but I can't get it all off.

Easter 2009

Easter has always been my favorite holiday but for some reason I wasn't looking forward to this Easter. Maybe it was because I was scared that we would wake up to three inches of snow and since I had been suffering with a sinus infection for the last week, I certainly didn't feel like I was ready for Easter. I'm very thankful that we had a wonderful Easter afterall. We woke up to clouds and a chance of rain but no snow. (Yea! We could wear our Easter dresses without snowboats!!) Drove down to Denver for church and the kids were well-behaved despite the extended length of the Liturgy. Later we went over to Christopher's family's house and Marie set up a "treasure hunt" to find our Easter baskets and a short egg hunt for the kids. We had a large Easter dinner and stayed late talked and enjoying the family.

Here are a few pictures to share:

Sorry they are all so dark. I just love Claire and Luke in the last one.

The Countdown Begins

Now that April is finally here, everyone is getting very excited for our first trip to Disneyland. We will be leaving April 21st. It will be the first time any of the kids will go to Disneyland, fly on an airplane, or really have a big family vacation. Shaylee has a running count of days until we go. As of today, we have 19 days left! Are we absolutely crazy taking four small kids to Disneyland? Possibly, but we will have a large group there to help! :)

Fun at Nana's

I thought I would share some of the new pictures I have taken since we have been at my Mom's house.

Having fun in the backyard

We were all suffering from cabin fever so at the first sign of a nice day we grabbed our sweatshirts and shoes and ran outside to play. Christopher taught Shaylee and Ryan how to play catch. Ryan was very disappointed to learn that baseball doesn't include any tackling, so he put some in himself. Such a boy! Today I tried to take a picture of all the kids together but Luke was not cooperating. Oh well, I tried. :) (PS, Yes Luke's tummy really is that big!)

Happy Birthday to our little Valentine!

Very hard to believe but our little runt turned two today. We like to say that what she lacks in size, she makes up for in spunk! At just 21 lbs., Claire is a little firecracker who is also sweet (loves to give us all kisses), very creative (she comes up with a new name for herself everyday- everything from Meatball to Tink-i-belle), bright (very quick at puzzles), active (right now she is running around chasing or running from her big sister and big brother with a huge stuffed pink snake wrapped around her neck). She loves to sing, dance, tag along with her brother and sister, rub Mommy's belly, drink tea, color, read, and of course have the undivided attention of her Mom, Dad, Aunt Theresa, Grandma or Nana. She makes life interesting for all of us who love her. Happy Birthday Claire!

Sorry it's been so long since my last post. No babies, no major holidays and I feel like we have nothing to share. So, let's see.
Luke was baptized on January 18, the same day as Shaylee's birthday party. I will have to put up a pictures later. He was smiling at Father Michael the whole time and was easily comforted after the shock of the water. Luke is still the most calm and happy baby I have ever seen. And he's getting pretty chubby!
Shaylee had a wonderful(and loud) birthday party. My parents, Christopher's family, Tanya, the Grondins (friends from church and now Luke's Godparents), plus a few of Shaylee's friends and their moms. With10 kids ranging in age from 6 to almost 2, it got a little rowdy. My Dad said he hadn't been at a party that loud since high school. :) I was really proud of Shaylee because she did a great job including all of her friends.
Shaylee and I had our special day together. We went to Old Navy and went shopping. We tried on clothes and laughed at the funny things that we picked out for each other. Then we went to lunch to McDonald's, her pick. Afterwards, I took her to Petsmart to see the cats. She always says that she wants a cat, but has never been around them so I thought we would see a few and of course, she fell in love with one named Princess. Princess was a beautiful white cat with light brown spots who seemed to love Shaylee as much as Shaylee loved her. It took a lot of self-control not to take her home with us. After that, Shaylee started really complaining about her ears hurting and by the time we got home, she was crying in pain. We already had an appointment scheduled for that afternoon for her checkup and found out that she had her first ear infection. To top it off, she also had to get four shots and the fun day was officially over. I hope she will look back on it and remember the fun things we were able to do and not the pain she felt.

Happy Birthday Shaylee!

Our little girl will turn 5 tomorrow and I still can't believe it. For some reason 5 seems like a big deal to me. This year she will start kindergarten and suddenly she will be spending more of her days with someone other than me. (Okay, so I will most definately cry on her first day of school.)
Shaylee has already grown up so much. She has become a caring, independent, loving, talkative, creative, silly, smart, and beautiful little girl who likes to help take care of her brothers and sister. Right now she loves to talk, work on workbooks, cuddle, go shopping, dance, talk some more, drink tea, and color.
She has a smile that brightens my day and a laugh that is so genuine (and dorky) that you can't help but laugh along with her. When she sleeps, she still looks just like that tiny baby that demanded her Daddy walk her up and down the stairs and have Mommy sing Twinkle, Twinkle just one more time.
When we asked her what she wanted for her birthday she told us that "I don't want anything for my birthday. Whatever people give me is fine. I just want them to come to my birthday party." I wanted to cry right then. We will be having some family and a few of her friends over Sunday for her birthday party. My parents are even flying in for the weekend. We really couldn't think of anything to give her for her birthday so Christopher and I decided that we would treat her to a day alone with Mom. I will take her to lunch and go shopping and maybe see a movie. I am really looking forward to it and I hope she enjoys it too. If so, this may become our tradition for their birthdays once they get a little older.