Rain storm is gone...Leah is better.

Leah is doing better today! She had a rough morning again but is now awake and alert. Seizures finally stopped! Bad weather brings bad seizures. I hate knowing when a storm is headed our way. It really affects Leah. 

Happy she is back to herself! 

We are back!

It's been a long time...too long! 

I realize I need to document Leah's life. 

The good and the bad! 

There's a lot more hard days than easy days. It's the life of a serious seizure disorder. 

Today...

I hate seizures! 

She hasn't woke up today. It's almost 3:00 and she has only been awake to seize then right back to sleep. 

We have been blessed that these loop seizures haven't happened in a long time. It makes for a hard day. It makes me sad. 

Leah's new FB page.

We just started a public Facebook page for Leah. We want to help raise awareness for SCN8A. If you're interested in following you can click on the link below and like her page. Thank you for everyones love and support.

https://www.facebook.com/HopeforLeah?fref=ts

The little things.

It's the little things that mean so much- it's getting eye contact when I hold her...it's the moments I talk to her and she opens her mouth and tries to make little noises...it's when I rock her and sing to her and I see a special look in her eyes.

Playing with service dogs.

Leah with the service dogs at school. She gave big smiles!

Spending some time at Shriner's hospital.

Hanging out at Shriner's hospital today. Leah got fitted for her new brace to help with her scoliosis- we picked one with butterflies smile emoticon They also made adjustments on her wheelchair. I just love this place!

A day in the life of Leah.

This disease Leah has gives her some pretty horrible days. Here is a day in the life of Leah. 

She starts the day off great! She smiles all morning. 

She turns her head to see her brother (which she never did before). Tyler sings to her and she opens her eyes so wide, she moves her arm and gives him smiles. 

Leah has a pretty good day. That afternoon she takes a snooze in her new wheelchair (I think she loves her new chair she always falls asleep in it). 

Then she wakes up in a bad seizure. At that point she is exhausted and falls asleep again only to wake up to yet another seizure. The night ends with an extra dose of phenobarbital which totally knocks her out and she is done for the day. It makes me sad! I miss her when she spends so much time in her crib asleep because of seizures. I don't want to sounds like a downer. We really focus on the good moments. That smile I got and the connection I saw this Ty and Leah is so special and it gets me through the hard times. It's the only way to keep going. We have to have gratitude for all the small things.  I pray doctors can find a treatment. 

Finding the courage to let go!

My life changed when I let go! When I started accepting Leah's life and our life with Leah. I am so thankful I found the courage to fight this fight with a positive outlook.  It's a life I never thought I would get but its a beautiful life to be her mom. 

Lemonade stand for Leah

These awesome kids made a lemonade stand and donated all the money to Leah. They said "Here is money to help Leah's seizures". It made my day. Leah was having a hard day yesterday and this act of kindness just made my day brighter. 

Five days straight with only 3 seizures!

Leah did awesome last weekend. Friday through Tuesday she only had three seizures total. She was so alert and happy. We treasure these amazing days! Here are some pics.

A diagnosis...the day finally came!

Can you believe it? I still can't believe it. It's been a week since we got the diagnosis and I am still in shock. It took me a week to be able to sit down and write about this because again I am still in shock. Anyway, time to tell you all what my daughters condition is...actually I really want to start from the beginning if that's okay because it's such a neat story . We were very fortunate enough to be picked to have Leah's exome genetic testing done back in June of 2014. Our insurance would not pay for this genetic testing. Aware of angels donated this testing to us. Words cannot describe how grateful I am to my friend Season who started Aware of Angels, it really makes me cry to even talk about it. There are angels on this earth like Season, who have the most beautiful heart to help these special children. Aware of angels helped answer my prayers! Back in June all of us had our blood drawn for this genetic testing. We just received the results last Friday. It is not uncommon for results to take up to a year. In fact, the doctor told us that he purchased some new equipment or software (not quite sure which one) that just came out this Febuary for neurological conditions. They found her diagnosis because of this new modern technology. They found that Leah has a variant in her gene SCN8A. This is a sodium channel that controls our brain electricity. This is extremely rare, so rare that only 60 people in the world have this condition in the gene SCN8A. Leah is the only one with this specific variant in the gene. Unbelievable!!!!! We knew she was such a special little girl. The doctor assured me that nothing is our fault with her receiving this variant in her gene. I am not a carrier, Chad is not a carrier and all of my children are not carriers, it was a fluke mutation. He also explained that he will have his team of genetic doctors do everything that they can to help Leah and that they will try and come up with a treatment for her. I am so grateful for amazing doctors that worked on her case. They donated their time to us because they have such incredible hearts. I have had some very emotional times this past week, sometimes it takes me a little while to collect my thoughts. I have been reflecting back on everything that has gone through my mind for the past three years. This is hard for me to say, but I will have to admit that there has been times that I have been in fetal position sobbing to God to give us an answer as to why my daughter is so sick. I have yelled and screamed in pain because of not having answers (only to my husband and not in front of my children). The pain of being in the dark for so many years was unbearable at times. I told Chad a couple times that "how can I believe in God anymore. I am not asking him to cure my daughter I am only asking for answers. Why can't God give me an answer for my daughter". It took three years. I never gave up but I had to sort of go numb for this past year so I could survive. The tears are flowing right now...I have to say...God never left me! It was his timing, not mine. He gave me special moments of peace that carried me through. His timing is the right timing for us. Maybe I wasn't ready yet...it needed to be the right doctors...the right resources...the right technology. When the doctor told me about Leah's diagnosis I had nothing but peace come over me. God is real! He knows us. He loves us. Please don't ever give up when you are experiencing hard trials. Push forward...every single day! It will be okay! I don't know what Leah's future holds. I do know that I can do it. Through all the pain...I became stronger! I love Leah so much! I am so grateful she chose me to be her mom. She knew I could do this. God knew I could do this. It just took time for me to get there! I am so grateful they both patiently waited for me. 

Rare disease day!

On Friday Febuary 27th we went up to the Utah State Capital to celebrate Rare disease day. It turned out great. There were many speakers who spoke on living with a rare disease and parents who have a child with a rare disease. People of the Legislature spoke and some medical professionals. My sweet friend Season spoke about Aware of Angels. She did such a great job! The Governor declared a Utah Rare Disease day, that was also very neat. Chad and I attended a conference that next day at the U of U for Rare Disease day. It was very good, we learned a lot. We are so grateful to know so many incredible families who are fighting such a hard fight with a child with a rare disease. 

Playing with service dogs!

Leah got to play with service dogs at school. Her teacher said she didn't have any seizures so she was very alert and loved it. The dogs licked her. I am sure she loved it. What a fun experience for her! She had great days at school yesterday and today. No seizures! I am still working on getting her suction machine. Hopefully it happens any day now. The school really wants it so they can suction her there. I always feel bad because she struggles to cough and she just can't handle all her sometimes. 

Jazz game!

Leah got to go on the Utah Jazz basketball court and stand (she was in her wheelchair) with the players during the National Anthem last Monday night. It was awesome! She helped represent children who have rare diseases or who are not diagnosed. She was with the Utah rare organization. We are going to the Utah State Capital tomorrow to help raise awareness for Utah rare and Aware of Angels. Leah will sure steal the hearts of the people of the Legislature :) I will post pictures. 

New shoes!

I found shoes for Leah...its a miracle!!! I have been trying to find shoes for Leah for months...okay maybe a year...seriously! It's been impossible. Her muscle tone makes it difficult, her old broken ankle :( makes it difficult and frankly she freaks out when I try and put shoes on her. It's the only time she moves her legs and feet. She really hates them. These ones in the pic that I found are for fun. But she does need some very sturdy athlete type shoes so she can go in her stander at school. Her PT said her hips are ready for the stander now. Yay! She hasn't been in a stander for a long time because her hips weren't lined up. Now it's time! Her PT said to go on Zulilys and order lots of pairs and then send back the ones that don't work. Humm...I guess I am going to have to do that. 

Cough?!!

Leah is better. I am not quite sure what all her coughing was on Friday. I thought for sure she was getting sick. She wasn't sick she was just struggling with something in her lungs. She kept coughing up clear think mucus- sorry I know that's gross! Anyway, the cough is gone. I guess she coughed up what she needed to cough up...very interesting! We are taking her to an orthopedic doctor in a couple weeks for her scoliosis, her doctor thinks her right lung is being pressed on. We are taking her up to Shriners hospital. I am kind of excited to go there. I have heard nothing but wonderful things about the doctors there. I will keep you updated. Also, we are close to getting her results from her Xome genetic testing that was done back in June of 2014. 

Hope everyone has a great day! 

Leah has a cough

Leah started coughing today! Which explains her bad day yesterday. She always has bad seizures right before sickness comes. Hopefully it is just a little virus. Her pulse ox is fine so that's good. She has had trouble with her secretions the past few days. I have been very concerned because she tends to choke on her saliva. I called Dr. Hornyik to talk about getting a suctioning machine. She is out of town so I guess we will wait until Monday to chat about it. 

It's never too late...

I saw this quote today. I love it! I have learned it's never too late to make the best of it! 

A special gift!

Leah received a very special gift! Charlee Nelson's family donated Charlee's wheelchair to Leah. We are so honored that they chose Leah to have Charlee's chair. We had such a great visit with them this weekend when they brought her chair to us. As many of you know, Charlee passed away almost a year ago from Batton Disease. Charlee's law is named after Charlee. It allows individuals to bring a hemp oil across borders to treat seizures. We are so very grateful for this law. 

Thank you sweet Charlee! We love you and will always remember you. 💜

Leah got an aide!!!

I want to share some news that I am so happy about! Leah finally got an aide to ride in the van with her on the way to school. I am so happy I am crying right now! I know this may sound very minor to some but I have fought and fought to get an aide to be with her and everyone just kept telling me that Leah isn't bad enough for an aide to be with her. In my opinion that was just an excuse- I think they just didn't want to pay for an aide. I have held my breath hoping she doesn't choke or have a bad seizure- knowing there is no one to help her when putting her in the school van for the last six months. Well, the nurse at the school finally got involved and demanded it. I am now at ease knowing her aide is there to help her. Leah gave her aide a big smile when she saw her this morning!

Blog app???

Okay so I'm a dork! Actually a really big dork :) I have struggled to blog...In case you all haven't noticed ;) anyway, I really don't have a device to my name (except my phone). My children take over all the devices in my home. So I told my daughter Lauryn...I need and want to blog more but I never can get on a device, everyone is always using them. She said "umm mom you just need to get the blogger app". Haha! Why didn't I think of that?! So here I am right now on the blogger app. Are you all ready for me to do some serious blogging now?! Well not serious serious blogging because I am far from serious just more blogging. 

Brooklyn passed away this morning! My heart aches.

Here is Brooklyn's story:
http://awareofangels.org/brooklyn-undiagnosed/

Sweet little Brooklyn

I have to say I am really struggling today. I found out earlier today that a sweet little girl named Brooklyn is very sick and is expected to not make it. Brooklyn has seizures just like Leah. Brooklyn does not communicate or move just like Leah. Brooklyn is undiagnosed just like Leah. Brooklyn and Leah are so much alike. I met Brooklyn's mom Britney about eight months ago and I felt something...a definite bond. Just knowing that there is another mom out there that is experiencing the same thing as me...just knowing that there is someone out there that understands exactly what I'm going through with Leah because she was going through the same thing. Brooklyn is about to pass away. I am feeling very sad. It has struck me harder than I thought. I have to admit I am scared every single day of losing Leah. I hugged and kissed Leah today and just cried. Life so precious!

I am so grateful I met Britney. Brooklyn is truly an angel!!!

Eagle eyes!

 We are so happy to announce that we have purchased the Eagle eyes device for Leah. Chad and I trained on it last week. We are so amazed at how well she has done with it. We can tell she really likes it. Right now she is playing cause and effect games on it. In the future, we will be be able to communicate with her through this device. We feel so connected to her when she is hooked up to it. I will try and post a video of it.