Zoo Trip

I am not a big zoo person but Jeanette asked me if we wanted to go to the zoo before the kids go back to school. It was a really fun trip. Finn and Erik joined us for a while. I think this was the best trip I had to the zoo.

Everyone together weighs 982 pounds the same size as a baby elephant.

Memorial Day Weekend

This memorial day was incredibly relaxing! My mom rented her time share up in Park City and we spent the weekend up in Park City! I did a lot of flower arrangements. It was a wonderful way to spend the weekend. For the first time in a long time I didn't have huge amounts of arrangements to do I just had some basic arrangements. I wasn't stressed at all with this years flowers. It also helped that a friend ordered flowers from the wholesale house for me! So it was one stop shopping! I love the flower wholesale house. I could spend hours and thousands of dollars in there. Kimmie's birthday didn't fall on Memorial weekend this year like it has in the past so we weren't worried about birthday party anything either. So the weekend went like this....

Saturday- we got up got ready did a couple flower arrangements went to the cemetary for Erik's mom and my aunt Ann and went to Park City. We did dinner, shopping and the swimming pool and went to bed.

Sunday- we went to church at the visitors ward in Park City. The kids did great through the one hour church and I even forgot the church bag with the snacks and things in it. We went back to the condo and I fell asleep. Erik took Johnny for a walk and my Mom taught Kimmie how to crochet. We did dinner and played phase 10 until bed time.

Monday- got up did more flower arranging. Erik started cooking dutch oven for lunch. Went to the cemetary did more flower arranging at the cemetary. Went back to the condo Erik had lunch ready, my aunt Jo, Glenda, my cousin and her husband and son came up. We had lunch sat and talked, took the kids to the playground. We took Jo back to the cemetary and walked around for quite a while.

I got sunburned with all of this although it was a weekend that was worth while. I will have to add some flower photos and some photos of the kids on the playground later. The weekend was so calm and relaxing I wish every Memorial Day was as calm as this one was.

Erik, Johnny and the Zoo

Last week Erik was asked to shaperone the Kindergarteners on a field trip to the zoo. This isn't the first time we have done this sort of thing. Although the first time for Johnny. With Kimmie and all her seizure trouble we drive up and met the bus at the zoo and when she gets tired or too hot then we put her in the car and leave. We got up and got ready for the day. I was going to work and Kimmie was headed to school while the boys ventured to the zoo. Erik wasn't too happy that I signed him up but he was going along with it for Johnny. Up until I told him he was going to ride the bus to the zoo. I have to laugh at the response I got. I love my husband but I thought I was dealing with one of the kids on a bad day. The short of the long story is Erik survived the zoo trip. Johnny had a great time.

Washington DC

I'm sorry I haven't written much this month. I don't know where this month went. I swear it was just the first of the month the other day. I have been invited to Washington DC. I am going this weekend representing Utah for the National Epilepsy Foundation walk. I am attending with my VP Margo. We are also speaking to our Senators and Representatives and speaking in front of the heads of the state foundations about the bill we passed last year. I am really honored that they have asked me to come and do this. Margo and I are planning all of our fun things we want to try and see between meetings. I have never been there before. Clarissa took me shopping on Saturday to help me get ready and to plan something to wear. I was really afraid of looking like a frumpy housewife when I walked in to meet some of these people. Not that isn't what I am I just don't want them to know it the second they see me. So wish me luck. I have six days in DC. My husband and kids are staying at home. I am hopeful that things will go really smooth while I am gone. Erik has taken half of the time I am gone off of work to be home with the kids. Although he is having a rough week working this many days in a row to get ready for me to leave. I don't know what I will do with myself to not be with them for that many days. Although I couldn't turn down this opportunity. I am really grateful to be doing this!

Chicago II

I will be posting a lot in the next couple weeks about Chicago. It was an amazing trip and so incredible. I learned so much and am really grateful for all the prayers, work, donations, love and everything else that helped us get there. I have more hope for Kimmie in the last week than I have had for years.

Some interesting things I learned...

Denial buys the fime needed for a person to find the internal strength and external supports needed in order to accept that loss has occurred.

Pain is the solution not the problem.

One doctor told us he doesn't like the term "brain damage" especially in children. He likes to think that after seizing for so long that the children's brains start to re-decorate. Kids can regenerate and do things that adults can't do. We just have to figure out where they placed everything. So Kimmie may put the forks in with the bathroom towels. All the info is there we just have to re-train or find where they put it.

This photo was taken by my friend Karen at the Nature Museum dinner the last night we were there.

Chicago

I can't belive how much this trip has changed me. It was worth everything we had to do to get here.

Kimmie is doing okay. She is really frustrating today. Lara came in town last night! Mainly to help me and she took Kimmie to the Shedd Aquarium this morning. She got there and was only there 2 minutes before she told Lara she was too tired and needed to go back. She complained enough that Lara took her back. It cost $75 round trip with tickets and cab fare for her to see two minutes and take a nap.

I have learned so very much. The doctor that we ended up seeing was Dr. Catherine Chiron. She was amazing! She has given me advice on how to improve her eating habits! She also complimented me on the amount of things we have tried to help get her seizure free. She is about 60-70% sure with changing one med that we have with one med that we bring in from Canada may change the balance of things and make her "SEIZURE FREE!" I can't believe those words came out of her mouth. For a doctor to tell us there is any posibility that she could be seizure free would be huge. Apparently she is the world's expert in seizure medication combinations. She is just an answer to my prayers.

There is so much more information although I am suppose to be in class already so I am going to cut this short.

Thank you everyone for helping make this possible.

Pioneer Trek

Erik went on Pioneer Trek. We really missed him. Although he had a wonderful time. I am really grateful that he got to go. He has heat stroke and is majorly sunburned. Yes, for the first time in his life he is REALLY SUNBURNED. When he woke up yesterday his lips were so bad, that they puffed out three times the size of normal. He cooked 3 meals a day for 300 people! He said that he is done dutch oven cooking for a while. Although I don't know if I believe that.

Welcome Home Erik!!!

Yard Sale

Words can not express my gratitude for everyone and their help with our yard sale. This morning I felt very overwhelmed with the rain and all the donations. By the end of the day I am so thankful and overwhelmed with the time, money and donations that everyone has given to us. The nice weather finally came out and things turned out well. I have only a few things left.

One of the most amazing things happened. I had a man who asked for info about why we are doing this. I didn't think much of this, he asked how much we needed and all the info. I thought it was weird and but gave him basic info. He borrowed my neighbors computer and paid for the hotel room for Kimmie and I. Words can not express my gratitude for this amazing donation. His wife talked him into giving me his name and phone number just in case of any problems. But he wanted to do this completely anonymous. He said that he use to have seizures as a child. I asked how to thank him and he said to pray and thank the Lord that he stopped and was in a position to be able to help.

I can't believe that this amazing man and his wife came and did that for us. I am also amazed that so many of my friends and family came and help, donated and were there for us. THANK YOU!
I love you!!! I could never repay you for your love and help!

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

Trip Update

I had an amazing trip to North Carolina.


I learned sooooo much and am really excited to share some of the things I learned at the conference. We were running all day and evenings while I was there. I came home and crashed for two days. I was soooo exhausted. The place we stayed was absolutely amazing. The conference was sooo good. I had to walk out at one point and take a breath of fresh air the information was just pooring from the room. Maybe it is because I haven't attended one of these kinds of meetings before that I felt so lucky to be there that I just was overwelmed by all of the info. It may have been the chance to meet such amazing people. I really don't know how to explain the intensity of the room. We had 75 leaders of mainly non-profit organizations from different diseases and disorder groups in one room. I felt a little intimidated by all the amazing people that were there. I know I have done a lot of work with the association but I didn't have to create organizations from nothing. We had a failed organization that we reworked but we had a base. Some of these amazing people had nothing but a good idea to help people with different diseases and so they did. I am so in awe.

My family missed me. I was roaming on my cell phone so I wasn't able to talk with them much. Erik did well while I was gone but I heard from everyone how much he missed me. It was really nice to know that I was missed.