Happy 2014

I am looking forward to 2014! I know there are good things to come...I feel it!

I am a goal setter. I have all my goals ready to be worked on. One goal is that I want to be more accepting of the life God gave Leah. I want to power through the hard days because we only get a good day about once or twice a month. So most of our days are hard. It's been really hard to get use to this life. It's hard to have Leah come back to us one day and then she is gone the next...it hurts in every way possible. I don't understand it. But this life is what's been given to us and I want (and need to for my own health) to accept it and power through everyday. I can honestly say I do a pretty dang good job making it but I want to be even that much better at handling this challenge.

Leah didn't have any seizures on Sunday. It was such an awesome day. We spent the whole day playing with her. She pulled her arms up to touch toys. She would open her hands and grab on to the toy. Whenever I talked she would look to find me... that was the best part! We feel so blessed to have that day with her.

Today was the day two years ago that we "lost" Leah. I will never forget the day. But I get to choose how I want to remember that day. Yes, I could focus on the loss. But I choose not to. I choose to focus on the blessings! We are so blessed to have her in our family.  

Leah is so physically beautiful but her spirit is also amazingly beautiful!!! Even though Leah can't interact with me I feel her spirit everyday. I know Leah! I am so grateful for this blessing God has given me. Even though she has a broken body her spirit is strong, healthy and very much so alive!!!

Happy 2014!!!

"Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength."

-Arnold Patrick Schwarzenegger.

Merry Christmas!

The reason I haven't posted for the last two weeks is because Leah has had a bad couple of weeks. She got a cold. When seizure kids get sick their seizures intensify and the amount of seizures doubles or triples. Basically Leah didn't come out of seizures for two weeks. She got double the meds and even rescue meds and nothing worked to stop them. She was either seizing, sleeping or majorly drugged. Bad seizures = Bad vomiting. We held our breath every morning when we would go get her because almost every morning her head was in a lake of vomit. I don't mean to sound gross but this is our realty every day. Our worst fear is to have her pass away from aspirating on her own vomit.  It's so emotionally and physically exhausting!

Good news...I got the best Christmas present! When I went to get her this morning she was in her crib just completely bright eyed and alert. She had only two seizures yesterday so that makes for a wonderful day today. Her cold is gone and she looks awesome!!!

Leah will be in a photo shoot with the Salt Lake Tribune on Friday. They are doing a big article on all the kids fighting for the oil. I will post the article.

We continue the HOPE for Leah!

I want to wish you all a very Merry Christmas! Thank you for all your love and support for her and our family!

Our little deer...

My mother-in-law recently gave Leah this book. It's darling and the words fit Leah perfect, it even made me tear up a little bit!

Our little Deer

You twinkle, glow and shine so bright.

You embrace each day with such delight.

You're silly and fun. You always amaze.

You're a gift to us in so many ways.

You fill our home with so much love.

You're an angel sent from up above.

We love, love, love you, little deer.

A hard week...

This past week was a really hard week for Leah and when Leah has a bad week we kind of all struggle too. Lots and lots of seizures!!! She got into many loops of seizures (this is when she seizes and falls asleep for an hour only to wake up into another seizure, this happens about 5-8 times in a row) we have tried many rescue medications for these loops and we finally found out that an extra dose of phenobarbital is the only thing that works. When we give her that extra dose I basically say see you tomorrow baby girl. She then sleeps and sleeps and sleeps. I am mentally and physically exhausted when she gets into loops. When she has had a third seizure in a row I really start to get anxiety. Sometimes she pulls through and doesn't start into a loop and of course sometimes it goes into a loop. By the fourth or fifth seizure they have turned into full blown bad tonic clonic seizures where she foams at the mouth and she is completely frozen. What seems like an eternity when she is unconscious and not breathing... is really only about 15-30 seconds! These are the seizures that make me cry! Unfortunately these loops happened almost daily this past week.

I will be honest the week really got to me. By Wednesday my heart was broken for her! I completely broke down in tears. I also read a story that morning about a sweet little girl less than two years old in New Jersey who didn't come out of a seizure and passed away. Her parents were actively trying to get the CBD oil for her and they worked very close with Governor Christy to try and get medical marijuana legalized. They told him please don't let our daughter die, please help us! This little girls life could've been saved.  I cried and cried reading this article. It took me back to when Leah was in ICU a year ago and she wasn't coming out of seizures and was having such bad reactions to medications. I clearly remember looking our doctor and asking him if Leah would come out of this and wake up and he said so sadly "I don't know". Why do we and these other families have to continue the hell when a plant from nature is there for all of these kids. It can save their lives. I am angry right now at the politician's saying what my daughter can and can't have to save her life. I am so mad that we have to continue to wait for these stupid people on the hill to say whether my daughter gets to live or not. CBD oil is her only hope!

Anyway.... My dad got to my house right when the tears started flowing. He told me I needed to go escape for awhile. Man I would've loved to go to a spa but...come on now I am a mother of four kids. I needed to run to the bank, get gas and go grocery shopping. As I was driving home from the store my husband called me and said "bad news" my boss just got laid off and I got the news that I am suppose to stay home from work tomorrow and that I will be getting a phone call tomorrow. What? I said. Are you serious Chad? Where did all this come from? We didn't see this coming. He continued to tell me that this goes for the whole company everyone is staying home and getting a phone call. I immediately started crying again but only for a minute. I then said "It's okay Chad we can do this, we can make it. We have made it through the worst hell of our lives we can make it through a job loss". We then hung up and all that was going through my head was...we can live off top roman but Leah's medical bills and medical supplies will bankrupt us if we don't have insurance.

Well...Thursday came and all morning no phone call. By noon he received many calls from his associates that they were indeed laid off. He was sick to his stomach for their news and nervous for his news. Later in the afternoon his call came...They kept Chad. We were so relieved but so sad for his friends. Chad works for a Dermatology Pharmaceutical company. He is very happy there and best of all they have awesome insurance. We are feeling so blessed!

I need to end this post positive:
The day before Thanksgiving Leah had an awesome day. She moved all day and when we talked to her she tried to talk back to us. We cherish these days. Here's a video: Her voice is really soft so you have to really listen for it.



Here's a cute picture of her that day!