Bad Day

Have you ever just had one of those days? Today is one of them for me. I woke up to Erik's friend calling to say he wasn't going to pick up Erik that he was sick. Mind you this really isn't a big deal exept that it was 3:30am. Then I couldn't go back to sleep. I love my husband but no I don't want to talk at 3:30 I want to be asleep. I love that he has been carpooling lately. It makes my life soooo much easier not to menchion the gas I save. You wouldn't think the 4 1/2 miles Erik goes to work wouldn't add up. But taking my lunch and trading him cars and him coming back to get me and all that stuff adds up. So I hope his friend is feeling well in the next few days so today we have to rotate the car.

Anway back to my story. Then I finally get back to sleep. I slept through the alarm. Johnny finally comes in and asks, "will you ever turn that thing off?" Referring to my alarm. I looked at the clock and I only had 15 minutes until Kimmie's bus was going to be at my house. So I ran in and woke up Kimmie. She was not about to get up today. She had some seizure problems over the weekend and was not going to get out of bed. So I forced her to get up go to the bathroom and get ready. By this time her bus was at my door. I sent Johnny out to tell the bus driver just one minute. So that I could get Kimmie her meds and shoes on. So I finally get her out the door and tell her bus driver to have Kimmie go to eat breakfast at school. I ran upstairs and got in the shower and started to get ready. Then I remember if I am going to trade the car with Erik I need to have Johnny ready as well. So I ran downstairs poored him a bowl of cereal and hand him his clothes. To this he says,"Mom I don't want to wear this today." I about strangelled him. Because right as he says that Erik calls and is half way home. I ignored Johnny's I don't want to wear this and told him to get dressed while I ran up the stairs. At this point I am still only half dressed and need to do my hair and make-up. So I get my make-up in a bag to take with me. Hurry and do my hair. Erik walks in and says, "Johnny why didn't Mom get you dressed we need to leave." To this I just said, "Please get your son dressed." I finally got Erik back to work, Johnny to Bethany's and on my way to work. Then I remembered I forget everything I needed to bring today for my EAU board meeting. Realizing that I was going to have to trade the car later I decided to just go to work and not turn around. I stopped and splurged on a McMuffin sandwich from McD's. When I finally got to eat it was cold. I got to work only 30 minutes late talked to my mom and went to work.

No sooner did I start a big project than Kimmie's school called. The conversation goes like this, "Mrs. Hansen Kimmie is having trouble at school we think she doesn't feel well. Will you please come and get her." Me (really suprised after this morning), "really, what is happening?" "She is hitting the teachers, she is complaining about a headache and screaming." I agreed to come and get her. All the way over thinking of all the things I was going to say for hitting her teachers. I walked into her classroom to pick her up. Her and the main teacher were the only ones in the classroom, I said Kimmie why are you having trouble today? Her teacher pipes in saying, "I am so sorry, I didn't want you to think that I did something horrible but I put my hands on Kimmie's cheeks when she was acting up and told her to look at me and stop. She started to scream and said I was hurting her. I didn't mean to do anything (her teacher almost crying at this point). My daughter laughing. I really wanted to just smack my daughter. I tell her teacher not to worry about it that Kimmie was fine and I do the same thing when she gets out of control (the psycologist told me to do that). I made Kimmie apologize to her teacher give her a hug and pick up her stuff to go home. On the way out of the parking lot Kimmie says to me, "I'm hungry, let go to a nice restraunt and get rootbeer." Kimmie's idea of nice restraunt is KFC. Like I was going to reward my daughter for being such a brat.

Short of the other long story I picked up Erik. Bethany still has Johnny and will bring him home later. I dropped off Kimmie and Erik picked up my EAU work and headed back to work. By this point I have been gone from work 1 1/2 hours and because breakfast wasn't good I was hungry. So I stopped and picked up a corn dog (my comfort food from college) and put the car in drive and headed back to work. Then I dropped my corn dog full of extra catsup, all over me, my car, and my purse.

I give up I am going back to bed. I really need a good nap!

Thanks for listening to this big long bad day...

Father's N What???

My ward made a thing about a father's n sons and needing to be free to bring their daughters. The original trip was planned for a few weekends ago but pushed back due to weather. But that put it on Memorial weekend so apparently it wasn't attended well. But Erik took both of my kids and went. (I had an evening all to myself! Although I spent it making Kimmie's birthday cake and doing Memorial Day flowers so it wasn't really relaxing). I love this photo of my kids. They slept in the van due to the cold weather. Erik didn't sleep much but the kids thought it was fun.

Johnny's Graduation

I am so very proud of my son. He has now officially graduated from Pre-school! He can't wait for Kindergarten to start. He will miss his pre-school. They did a fifteen minute graduation thing for the kids, I loved it! He looks so stylin' in his suit coat and jeans. I am proud of you my big boy!

Bill Signing

Thank you again to everyone for your help with the epilepsy bill. The governor did a ceremonial signing last week. Here are a couple photos (thanks Marisa).

Sports Day

Every year Jordan School District does a sports day for the special ed elementary classes. It is like a mini special olympics. Kimmie did really well. I am so proud of her. I got sunburned but she had a great time. Thank you to Daddy and Aunt Jeanette for coming to see her in her events.
The photos are of her jumping, the ribbon for running, and the opening ceremonies. She received two 3rd place ribbons and a 4th place.

We are so proud of you Kimmie!!!

Yard Sale- Thank you

I wanted to thank everyone for their support. I can't believe the response I have received in the last two days. I have had a bad couple weeks and everyone has just made me feel so very loved. Thank you!

Dravet Syndrome

Many people have asked what Dravet syndrome is, so the long story is...

Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a progressive childhood neurodevelopmental disorder characterized by severe epilepsy that does not respond well to treatment. Estimates of the prevalence of this rare disorder have ranged from 1:20,000 to 1:40,000 births, though incidence may be far greater as new genetic evidence is discovered. It occurs more frequently in boys than in girls, but knows no geographic or ethnic boundaries.

The course of Dravet Syndrome is highly variable from child to child. It begins in the first year of life. Development is normal prior to the onset of seizures. In most cases the first seizures are correlated with fever. These seizures are often prolonged. In time seizures increase in frequency and become more likely to occur without fever. Additional seizure types may appear.

During the second year of life, progressive regression of aquired skills and developmental delays are usually observed to varying degrees and additional neurological symptoms. Additional features that are seen in most children with Dravet Syndrome are poor regulation of body temperature and increased susceptibility to infection. For a significant number of these children secondary problems can also include sleep disturbance, slowed physical growth, movement disorders, and orthopedic disorders.

At this time, the treatments available for Dravet Syndrome are to improve symptoms, primarily anticonvulsant medications to control seizures. The seizures are very resistant to therapy and the response to different medicines can be highly variable from child to child. Certain medicines have been found to be the most useful for most individuals with Dravet Syndrome, a few others have been quite consistently found to have an aggravating effect.

Social Development: One way that many parents first become aware of delays in social development is when their children do not demonstrate the expected stranger anxiety or seperation anxiety that most typical children experience between the ages of one and three. Parents note that their children with Dravet syndrome lack a sense of appropriate social boundaries. They do not fear strangers and, in fact may be excessively affectionate toward strangers. Children with Dravet syndrome may have difficulty learning to imitate others’ behavior. Many tend toward solitary play and may engage in parallel play, but cooperative play is difficult and many do not understand turn-taking. Their ability to understand the concepts of ownership, belonging and others’ points of view may be difficult to assess, but based on parent reports, difficulties in these areas are common. Individuals with Dravet syndrome are likely to remain dependent on others for assistance with self-care skills such as toileting, dressing, and eating, often into adulthood.

Behavioral Development: Ninety-five percent of the parents report that their children had some unusual behaviors. Those most frequently reported were perservation or repetitive behaviors, flapping or clapping of hands, obsessions, excessive stubbornness, and excessive activity. Many parents also express concern for the safety of their children because of their tendency to wander.

This is taken off of the IDEA league web site.

It is one of the most severe epilepsy syndromes.

Yard Sale

Kimmie has officially been diagnosed with Dravet Syndrome. I don't know if this is a good or bad thing. I can only tell you that it is nice for the fact that finally her unusual seizure behavior finally fits into a syndrome box with other kids. Well with that being said, the International Dravet group that I am a member in is having a conference in August. They will be holding it in Chicago. The really neat thing about this is that Dr. Dravet will be attending. The most world renowned doctors in this area will be seeing patients for consultations. A friend of mine e-mailed Dr. Dravet and she said that she would be interested in seeing Kimmie. I don't know if we will get a consultation with her or one of the other doctors but Kimmie and I need to head to Chicago. If there is any more ideas on what we could be doing different to help her I would like to find them. We officially with her new medication, can't afford the trip. I have received a grant to pay for our conference registration and the doctor consultations. I have also applied for other grants although nothing at this point has come through. So my dear friend Bethany suggested the other day that I hold a yard sale for Kimmie. So if you are interested in donating items or coming and helping or purchasing anything I will be holding a...

Fundraising Yard Sale to raise money for Kimmie's Chicago Trip
It will be held at my home (I don't want to post my address on the web)
June 7th
from 8am - noon

Fire Station

Despite me being on overload yesterday. Johnny had a great time on his field trip. I didn't get very good photos so I hope that Bethany got some but I had to share this one of Johnny and his friend Trevin looking at each other. They look so cute and grown up!

Field Trip Overload

Do you ever wonder what kids do at the end of the school year. I will tell you they go on field trips. I really appreciate and love the programs that my kids are in so this is in no way a complaint against them. Although Johnny has two field trips this month and had one last month. Kimmie has three field trips this month and two last month. I am just getting a little overwhelmed with the field trip thing. I am aware that they have a good time and need to get out of the class room. But could we spread them over the year a little bit more. Johnny's isn't as bad but five in 60 days for Kimmie's class is a little much. I am just wondering why??? Couldn't we pick a few field trips and spread it throught the year and buy more books or something. I am just starting to loose track of when each one is going where, and I only have two kids. I couldn't imagine any more kids and any more field trips.

With all this being said Johnny's went to the fire station today. He had a great time and learned a lot I will post fun fire station photos soon.

I love my kids classes and teachers so PLEASE do not take this as I don't like them they are wonderful! I am just feeling Field Trip Overload!!!

Personal Talk

Yesterday I did a scary thing. I was asked to speak to a group of researchers at the University of Utah. I thought okay I can handle a talk about epilepsy. I have done them before. Although I have a few board members that take care of that for the most part but I can handle talking about epilepsy. The doctor/professor that asked me said he was interested in sharing personal stories of epilepsy to show the researchers that what they do makes a difference in the life of real people. I first thought, personal story I have a lot of those about seizures. I can handle telling a story or two. The doctor sent me the format of the class and how long he wanted me to talk 15 minutes. That is a talk not just a few stories. So I started on my journey to write a talk about me and my experiences as a wife and mother of individuals with epilepsy. Someone once told me I needed to write a book about epilepsy. After my experience in the last three weeks preparing for this I don't think I could do that. I put together some photos and put it in a PowerPoint presentation. I wrote everything down and shared my speech with Erik. I had a total of nine minutes. I thought I am going to be scared and talk too fast I will be done with this in 5 minutes tops. So I add things to my talk hopeful to make my talk about 10 minutes. I had trouble putting everything together in the first place because it was all personal. Seeing the bad days Kimmie has had and putting them on the big screen is scary and emotionally hard.

I walked into work yesterday I thought I was already to leave for my speech. I though I can handle this. I went into Mom's office and she said, "do you know you have a stain on your jacket?" I thought no I look cute! I tried fixing it although to no success. It was only about penny size so I thought I don't care no one will see it any ways. I figured that I must not have looked cute or the stain must have been worse that I thought, because Mom handed me her JcPenney's card and coupons and she told me to go buy something to wear. The condition was that I threw away the outfit I was in (it was a hand me down from her). So now I have a complex, I thought I had it all together and now I look retarded and need to buy new clothes because I don't have time to go home and change. Great this is starting out really well.

With my new shopping trip I arrived a few minutes late (as usual) I had agreed to met another gal from my board 45 minutes before we spoke. I was glad for the extra few minutes. We still ended up sitting for 20 or so minutes before the class started. It was only the perfect amount of extra time I needed to completely freak myself out. I learned that not only researchers, but staff and neurologists attend this class. So there went a class from 20 max to 45, plus people that are a lot smarter than I am. The doctor that asked me to help told me not to speak on anything like our bill or need for research or anything like that because these people know that they just need a personal story behind it. So I scratched through my extra stuff. I am grateful that Margo went first. I really appreciated the extra time to calm down. I thought as I stood up to talk well at least I have a new outfit and I look really cute.

I started and something fun happened. I ended up not really using my notes I just talked. I ended up talking for 20 minutes. Then students started asking me questions. I didn't know my life was interesting. I have a bunch of new volunteers and people that are really interested in what we are doing! I can't believe I have survived. I think I did okay. I started to get teary when I talked about Kimmie's six hour seizure. I saw three ladies in the room crying. I think that is a good sign that things went well. I have been asked back for other speaking things. I didn't plan on this being a thing although I think it was good for me to tell my story I think it also helped me emotionally deal with some of the things that have happened over the years.

Regardless I survived my first major public speaking event!

Lost Tooth

Johnny lost his first tooth last week. He was not very excited, it scared him more than anything. Although the tooth fairy was a pretty neat thing. He has come up with a mile long list of things he wants with his tooth fairy money. Although none of which he could actually afford with his dollar. He now has two other loose teeth. He is the first in his pre-school class to loose any teeth. He is getting use to the missing tooth although he is still not too fond of showing it. I have included these photos of him. Becuase of how he is putting his teeth it is hard to see. So it is a bottom one!

I have people tell me it is rare to loose a bottom one first then I have other people tell me that they lost a bottom one first. I don't know

what is normal. But regardless he is happy that it is out and that he got MONEY!