Fundraiser Time!

It's Finally here! Tomorrow is the big day, and Im at home pretty much freaking out. So many things to do and try to prepare for, then of course snow... I can't do anything about the weather, but we have been working extremely hard getting this event together. Round of applause to my friend and other mother of an infantile spasm baby Lucretia Stallings. She spent TONS of time getting this event ready.  I have spent my day going through all the many donations I have received and kid words from family and friends. How blessed am I? I received a gift basket from In-n-out burger... kind of want to keep it, but they put a personal letter to me telling me how they are excited for this event and that they are happy they could help in anyway to make someones life easier. This was a personalized letter! To me, using Zoey's name, and signed. Makes me remember that this is the season. People are good. That makes me excited for tomorrow. Hopefully we will see everyone there! We have so many fun activities and it really is geared for family. Santa will be there and my sister in law has kindly helped and will be taking pictures of kids and santa too. I really do hope that if you can come you will. It will be the best kind of service, food, entertainment, shopping and Santa! Just by showing up and getting a ticket, you have done service. This is my last post and I want to make it count. There is no easier way to give a donation then right here on my blog. Right hand corner there is a button to donate, click and go!  Hope to see everyone there!

Thoughts

I have been doing a lot of thinking this past week of my little Zoey. It's been 6 months since her diagnosis and I have been reflecting on how my feelings and emotions have changed since then. When I first found out about infantile spasms I was crushed. All the dreams I had for my girl were gone. I read story after story of parents with children with infantile spasms and how their kids are so dependent upon the parents for the rest of their lives. Getting dressed, eating, changing diapers on your adult child. 50 to 1 the stories were heartbreaking not uplifiting. I stopped reading stories. Only recently has my mindset changed.

I can't tell you what has exactly changed, but my heart is changing. I look at my beautiful child and I see her absolute love for me. She will stop and stare at me, then pull out this beautiful toothy grin. A grin just for me. Because I'm her mom. And because I'm her mom I will do anything to make her happy and enjoy her life. If making sure she has a clean bum at 30 years old, then so be it. Zoey didn't ask for this, and while I take care of her, she is the one living this life. As her parent I am going to give her the best and happiest I can. Just like I want to do so for my Joseph. I have a connection with her that let's me enjoy her smiles and laughs. For now I will cling to that and be happy. I know my fears and worries will always be there back in my mind, but those will be pushed back and I will be happy! For those struggling with same emotions, just hang on. It does get better. There is always hope. Feelings change, emotions change, and happiness comes.

For those who want to meet my special girl and he protective brother, come to our fundraiser this Saturday at 3 to enjoy shopping, food, and entertainment! Deseret peak indoor arena in tooele, ut!
Santa will be there too!

Thankful

I never did get into the everyday post something your thankful for. I wish I was dedicated enough to do it, but I can't seem to keep up. Saying that I have much to be thankful for this thanksgiving. My number one thankful thought is that my baby is still seizure free. I can only pray she keeps that going, but instead of worrying about it I am trying to enjoy having my happy baby. She is such a different baby! Its been almost 6 months of hell and I had forgotten just how cute she is. After all she has been through I can't blame her for being grumpy, but she isn't anymore. She wakes up happy, watches her brother and cousins and stays happy all day. She tries to chat, she smiles, laughs and is finally enjoying life. It is so nice to see her happy and smily again! Her favorite person is her big brother Joseph. Those two started out rough, but they love each other so much now. She lights up when he comes in the room and he wants her to sit with him, sleep with him, and always be involved with her. I'm grateful that my kids love each other, she will need a big protective brother down the line Im sure.  Zoey is learning and is such a clever little thing. She sits up on her own all the time now, and HATES when she is not. She is a big cuddled and wants to be involved with whatever is going on. She has just started trying to get her little legs up under her, but also seems to want to be walking so we will see which one comes first! One of my favorite things about Zoey is her hair. CHAOS! Bless her she looks like one of those old troll dolls with their hair sticking straight up! Its not thick enough to put in a bow, but long enough it just sticks up! Its so funny, and her big blue eyes melt you! Im hoping to bring her and big brother Joseph to the fundraiser so everyone can meet this special girl, but please no touchy! She still has low immunes, but should be getting them all back soon!

I also wanted to say how thankful I am for my Josey. He is such a clever boy. Sometimes too clever. He loves life and already throws tizzys like mommy USED to! His favorite thing is chocolate.. I thought I was bad, but this kid will sniff it out wherever you try to hide it. He also is an outdoor, bug boy. He is scared of spiders, but also has an obsession with them. I have trained him well with a shoe how to make them disappear, but daddy doesn't like that lesson. He will be 3 years old this December! I cannot believe he is that old, yet in someways he acts older. He is such a character and loves to be silly. He constantly makes me laugh and wants to help me with EVERYTHING.

Then there is my James. We have had a rough couple of years, but he is my constant. He is always there for me, and makes me feel needed. We joke, argue, and laugh together. He is my best friend! this year has been especially difficult with Zoey and no sleeping, but we got through it and still love each other! That is something to be thankful for sure. Almost 7 years of marriage. Only eternity left and that is also something to be thankful for.

Lastly, is family. I will never be able to repay how much my family has done for me. Both mine, and James'. So many talks of hope, nights of getting a turn at sleeping, and letting me cry. Not once has any of them complained when I have asked for help. How lucky I am to have such people by me.

Now for my reminder for all! Yes Tooele is a bit out of the way, but it really isn't that bad of a drive. This fundraiser is for a good cause! Not to mention you will have shopping available, food, entertainment, and prizes! Thats much better then spending an hour in the parking lot at the mall.. Not to mention the fact that Santa will be there! You can't miss this! All the information is at www.isawareness.weebly.com. Don't forget you can donate through my blog page or go into any zions bank and donate to the Zoey Burke Donation. Thank you to all who have helped me out with donations, both money, and items for our raffle/silent auction. Have a very Happy Thanksgiving!

BRING IT!

I am so very excited for Infantile Spasms fundraiser!!!! We have some very awesome silent auction items, as well as some very cool and perfect items for the season gift baskets and gifts for our raffle! Just a couple of things that will be present is 2 tickets from Las Vegas to have a tour over the skies to visit the grand canyon! The tour takes to you to many sights like the hoover dam, plus once you land you will have an additional tour set up for you that includes lunch and sights of the south rim of the grand canyon. We also have a golf lesson with an instructor who has been on the news many times for his amazing abilities and personality. Movie tickets, hotel stays, food, waxing, so many things that are perfect for the holiday season. PLUS a night out with the family!!! Who can go out a feed a family AND pay for a show for only 25$??? While you are out having fun, your also helping children have some hope for the future. Giving family hope and answers instead of frustration and questions.  Just so we are clear with whats going on all day:

3:00 Doors open

3:00-6:00 we will have dunk tanks, bouncy castle, pie eating contests, and raffle prize give aways! There will also be booths up ready for your holiday purchase. Some of the vendors we have are: Chocolate, Norwex cleaning supplies, and Jewelry! For the little ones we also have face painting and gingerbread house making stations.

6:00-6:30 Speaker from Primary Childrens to speaks about Infantile Spasms.

6:30-8:30 Hawaiin Luau Dinner and Show! (includes hula dancers, fire breathers, knife throwers)

Where can you get all this entertainment anywhere else?! Please come and support our cause. I am going to be bothers everyone until you all agree! And just so everyone knows, tooele isn't THAT far away! haha It is 30 minutes from Salt Lake. If you want to buy your tickets now, you are more than welcome to. My fellow Mom in this event has set up a web page to buy tickets. You will be able to buy them at the door too. Her web page is http://isawareness.weebly.com/our-events.html.

As always my page is set up to receive donations!!! Thank you to all those who have donated already and for those helping out with our gift items. This has become a HUGE deal and we are very excited to be part of it. To top it all off we will be able to have a spot on the KSL radio stations to tell even more people about this event! WAHOO!! We are still taking any vendors who want to sell items there, and also any items to give away for raffle or silent auction. Spread the word friends!!!!

Easy days... Mostly!

Zoey has finished her medicine completely! No more injections for my baby girl, happy has returned to her little face. What a gorgeous  face it is. I cannot tell you the difference her being seizure free AND off meds has made. She giggles again. She chats and blows raspberries. She smiles at anyone passing by and loves to be cuddled and just stare at your face. My little miracle is back!
We are still staying secluded until January to make sure as much as possible that she doesn't get sick, but we did splurge and dressed her up for Halloween and went trunk or treating and then trick or treating. She loved being out! Poor thing hasn't seen outside much and LOVES it!  We dressed her up as Minnie mouse and Joseph was ofcourse batman. What a good little barman he was! He is enjoying having his sister back too. He wants to hold her again and tells me he loves her all the time. He especially likes screaming in her face which for whatever reason she thinks is funny. She just grins whenever she spies josey walking by. Those two will have a special little bond I think!  In almost everything zoey is back to being perfect... Except night. She is a party pooper with the night. She is quite happy to be awake and chat to me, I on the other hand am not. But she does make some cute faces for me even if it is 12 am, 5 am, 7 am.....
On an update... I'm still waiting for donations! I understand its getting to be the busy time of the year, but please even a dollar will add up!  We are trying to make this fundraiser a good, fun family DAY! That's right, a whole day of fun. We will open the doors at Deseret peak indoor arena at 3:00. From 3-6 there will be fun carnival type games for kids to enjoy. Bouncy houses, dunk tanks, and much more! For our adults, we have booths to do some shopping! We have a chocolate booth set up and are looking for more volunteers to help us out.  It can be anything! Jewelry, scentsy, maxi skirts, food, clothes, whatever! If you are interested or know of someone who can help, message me so I can get you set up! We are also looking for items to use in our raffle and/or silent auction! Again it can be anything.. free photography session, blankets, movie tickets, clothes, gift cards, anything! Not to get you too excited but it looks like we have a snow blower or lawn mower brand new being donated and also a grand canyon tour package! But we need more items!  Again if you or know anyone please contact me! 630pm will start the hawaiin luau with food, hula dancing, and fire breathing dancers for our entertainment. To enter the building it will be 5$ a person or 25$ a family. That will pay for the food and entertainment. Please help us out, its for such a good cause. Zions bank is where you can go to donate to zoey Burke or PayPal is up and running, just look up my email. Bradiburke86@gmail.com. thank you everyone for helping the cause and reading my motherly babble!

Oh happy day!

Officially happy! Zoey is being tapperd off her ACTH. Her last day of meds will be the 29th! Today we had her EEG to see if she had anymore hypsarrythmia. The results have come in and she is cleared of her infantile spasms. That is what we have been waiting to hear the last 3 1/2 months! Now she can hopefully be on the road to recovery. We will be continuing the physical therapy and trying to catch her up in her motor skills, but even then she isn't doing too bad. The only worries now would be a relapse, also the Dr. Did say she was having a different type of seizures during her eeg. This means she could have epilepsy later on. We did know that there was a chance of that anyway so for now we will celebrate that this horrible condition is over. Moving on with life, and relaxing just a bit. The last 2 days have been better, she still isn't sleeping at all, but she has been smiling and laughing and reminding us who the real Zoey is. I hate ACTH. The side effects are horrible and I have never been so tired and worn out. However, the fact that I don't have to see her in pain with seizures is very worth it! 
Plans are coming for our infantile spasms awareness fundraiser! We are still looking for a final location, but plans are in motion. The luau is a definite. There will be food, hula dancing, and fire breathing. We also would like to do some type of raffle and silent auction. Anything that can be donated to help with the raffle and/or silent auction would be appreciated! I will be setting up a place to donate funds tomorrow and will post the information on the infantile spasms event page on facebook. It is a public page so if I haven't added you, you should be able to get on without problems. If you can't locate it send me a message with your email and I will invite you. Please help us spread the word. We are excited to do this and want it to be a fun and an informative night. We can't do this without you all helping us too! Tell family and friends to ask work for sponsers or donations. Share on facebook! We hope to advertise in newspapers and radio. We want this to be BIG! Thanks everyone for thoughts and prayers. It's been a long time coming, but has finally paid off! Thanks to everyone!

Just keep swimming

Finally happiness! Zoey has been on ACTH now for almost two weeks and hasn't had a seizure since Tuesday! ( knock on wood) it has been great to not have to see her suffer anymore. Although giving injections hasn't been so fun, she handles them like a trooper. The down side of this new med is cranky, no sleepy, high blood pressure baby. I will still take that over seizures anyday! The plan is to wait a little longer then get another EEG done to make sure we are good. Then hopefully we will be lucky and not have a relapse.
On other news, the awareness week is a go and we will have the luau! So excited! I was able to go to my old work and talk to the Dr.s about infantile spasms and give them information to help diagnose and treat. It went really well and I need to start calling around for more places to go. I was so happy a fellow IS mom was able to come and help me with it and have another perspective!
Also as a proud mama, Zoey got 3 teeth all at once! Painful, but so cute.