What a start to the school year!

                             A few awesome updates to share today.


We are officially down to only one Medication!! YAY!! I'm so excited about this. So far things are going well and we have not seen any crazy activity.


Bailey has also started at both preschools and is loving school for the most part!! She goes 4 days a week, and is not sure if school every day is fun, but tolerates it! She is doing well and so far keeping up with her little friends around her. She attends a special needs preschool Monday and Wednesday and Little Learners on Tuesday, Thursday. She also gets to ride the bus and thinks it is awesome. They come right to our home to pick her up! I was so nervous the first few weeks, but this is the highlight to her week!!

Oh and we can't forget Dance class, It has a huge debate this year if we were going to attempt dance again or wait. But Miss Bailey insisted that she was going to go. She is repeating the same class she took last year, and so far fingers crossed its going well. I haven't even ran out of the room crying yet!! PROGRESS, LOTS AND LOTS OF PROGRESS!! I love this, last year we had a hard time with forward progress. Bailey would be learning and catching on to things, and then a bad seizure week, and we would start over. Not anymore!! 9 months seizure free and still going strong.

Now that we are on this new Journey of finding life without epilepsy, and making up for the damage that is has caused, I want to share of few of my new favorite things. The biggest one for me is introducing Bailey to new friends or care givers and say "oh see that silly little girl running over there, yep she is mine", instead of " Hi, this is my Daughter Bailey and she has epilepsy. When you have any kind of disease that takes over your life, its hard to not become that. It's hard to have any identity other than the kid with seizures who can't get down because her mom is a nervous wreck. Yep that was us, and that is how I always introduced ourselves. I no longer have to share it to everyone who comes in contact with us, because so far they are gone!!


The journey keeps going, and so far its going in the best direction I could have imagined. Bailey sure is one of a kind kid, who keeps me laughing all day long. I don't want to get to ahead of myself, but a year is coming up this December. I want to plan a Happy ONE Year of having your life back party! I also want it to be a thank you party for everyone who has helped us get where we are today. I don't have a ton of details yet, but I will get the ball rolling.  It's going to be simple but open to all who wants to come and see Bug and let Jared and I personally thank you for your support!! Stay TUNED!!

Update

Sorry for any confusion with the last post. I am not pregnant. I was pregnant, but lost the baby and had to have surgery to remove my tube. We are content with our family and feel it is complete!!

I'm so sorry, I read it again and it was a little confusing.

We are still here and doing well!!

Wow, I have not posted since March!! Sorry about that. I need to try and stay up on the blog better!! I feel its hard sometimes to sit down and really write everything I am feeling. I'm not very good at it! But the last few months have been crazy!! We wrecked both of our cars, (yes both cars) an emergency surgery, (me) we went on a fabulous cruise with the big kids, my sister got married and I can't forget Bailey turned 4 and Korbin 7!! That has all taken place since the end of May!! The cars happened within three weeks of each other, luckily we are all okay and no one was injured during the accidents. My emergency surgery was an Eptopic Pregnancy and my tube actually ruptured the day before our cruise and I didn't know it. I felt the pain but I'm a little stubborn and did not go to the doctor. I didn't want to ruin the trip! So I was a little sore and miserable but not enough to stop us from having an amazing time!! When we got back everything was fine until June 14th when I guess something ruptured again. This time Jared made me go to the doctor. This is where we were told we were pregnant and yep we were shocked! This was very unplanned!! We are still not planning on any more babies. I think we have our hands full with three!! I'm doing well now and  didn't really let a small little surgery stop me from all of the wedding excitement. Three days after surgery I was up and going to bridal photos, bridal showers and we can't forget the bachlorette party!!
But enough about me, I know this blog is about the cutest little bug I know!! She is still doing fabulous!! We have had the best 8 months! She is still free of her seizures and running around like any normal 3-4 year old! Bailey is so full of energy and spunk, I just love her personality and how easy going she is!

Last Friday we went back to Primary Childrens for her follow up EEG. I can't wait to hear back and hopefully start to  wean her off the medications. I have to say that is my only complaint these days! Those darn medications!!  They make her want to sleep 2-3 hours a day, that is a lot of a four year old! But I have to be patient and not rush the process. (not so easy)

Bailey turned 4 on June 21st!! It was a great day with lots of friends and family!! I loved this birthday! She was happy energetic, aware of what was going on and why everyone was over to our house. It was just perfect!! It really is amazing to see the difference in this kid, when going through this process I just got used to the Bailey I knew. That became my normal. Now to see how much she has accomplished in these last 8 months.

Sorry it has been so long for the update! Things will hopefully slow down a little with everyone back to school!! Have a great week!!

Upcoming Fundraisers for Epilepsy Allaince of Utah

Motorcycle Ride

Date: April 6, 2013
Admission: $15 per person -- Includes breakfast and dinner
Pre-Registration: 4:00pm to 7:00pm on Friday 4/5/2013 at Adrenaline Service & Dyno, 475 W. 3600 S. Unit C, Salt Lake City, Utah
Registration: 9:30am on Saturday 4/6/2013 at Addictive Behavior Motor Works, 3638 S. State Street, Salt Lake City, Utah 84115.
Click here for more information
The B.A.S.T.A.R.D.S. B-2 Motorcycle Riding Club will be helping raise money for the Epilepsy Alliance of Utah!

 

 

2013 Charity Casino Night

Date: April 12, 2013
Location: Sheraton Hotel – 150 West 500 South
Admission: $50 per person -- Every $1 donated receives a drawing token
Click here to purchase tickets
This elegant evening includes a sit down dinner, gaming tables, and drawing prizes. The entire evening is fun-filled, all while raising awareness about two important health challenges facing Utahans: epilepsy and brain injury. Dr. Tawnya Constatntino is the Keynote Speaker. Proceeds go to support the services given by the Epilepsy Alliance of Utah and Brain Injury Alliance of Utah.


Jared and I would love to get a table for Bailey! The tables seat either 8 or 10 people!! Who wants to join us?

Epilepsy Alliance of Utah

Today only Utah is having a fundraiser for all NON-PROFITS. Here is a link to help  the Epilepsy Alliance of Utah, if you can. Any donation will help!

When Jared and I were told Bailey had epilepsy, we had no idea what to do or what that even meant. We were lost, confused and terrified. I googled Utah support groups and found this amazing organization. I called Margo (the President) and she stopped everything she was doing to talk to me for over an hour. I can really never thank her enough. She gave us the tools we needed to help Bailey and our family.


http://www.razoo.com/story/Epilepsy-Alliance-Of-Utah

3 months and going strong!!!!!

Happy Three months!! YAY!! I can't believe how well Bailey is doing. If someone would have told me that three months would look like this, I would have thought your crazy!! She is growing, learning and running around just like any busy three year would be. Her hair is coming in and we now spike it almost everyday. (She loves it when I do her hair with gel and hairspray, just like her brother Korbin.) I am so excited for her and our family. Life is so different now, we don't have to live in fear of seizures. With each passing day, there is new hope that this nightmare will forever be over, that our daughter will live a life just like her siblings.  This  journey has been an emotional roller coaster, we have been at every point two or three times. These past three months have not been any exception, but this time we are riding on the highest part and loving every minute of it. I still get nervous to make any long term plans, but slowly that is starting to disappear. Our new adventure is Preschool and trying to decide what is the best for Miss Bailey. It's hard to make a choice for a child like bug, when you don't know where she will be in 6 months. I told myself not to stress, but with each passing day the schools are filling up. I still don't know what to do!! But really that is a small issue and overall we are just enjoying this time with a happy healthy little girl, who acts like she has not been through a traumatic thing in her life. I wish I had her ability to just be happy all the time, without a care in the world. It really is a beautiful thing!!

Help

It has been crazy around here with school, dance, hockey and just getting back into a normal routine. I am happy that we are not dealing with seizures, doctors, blood work and medicine changes. It has been a calm January so far and I am so excited about that. I take a deep breath and think.... wow this is what "Normal" feels like. With all that being said, we do have a few issues I'm still trying to figure out. Does anyone have any experience with impulse issues? Jared and I need help getting Bailey to focus a little more. I don't know if her impulse issues are because of the medications, seizures, surgery or if it is simply just who she is. Bailey is such a goof ball and loves to be the center of attention. I love her personality and I don't want to change it, but I also see that we are running into  problems with dance, homework and trying to get her caught up. Can anyone point us is the right direction? I know she is three and asking a three year old to sit for 30 minutes in a challenge and really almost impossible. I am just looking for enough attention to work with me for maybe 10 minutes at a time.
                                               




Bailey has been up to a lot of fun things since we have been home from the hospital

Dance
She is potty trained!!!
School
And performed in a half time show for the local High School Basket Ball Game!!

She is getting strong everyday and so far we have not seen any issues come up. I am looking forward to hopefully reducing her medications a little when we go back to Cleveland for her 6 month appointment. I think this will help Bailey with her sleeping issues at night and hopefully keep her more awake during the day.