Please help...

I am asking... well begging ;) each of you to go to www.hope4childrenwithepilepsy.com and subscribe to the website (It takes 15 seconds). Please tell your friends and family and ask them to do the same.  The bill for CBD oil will be presented in the next couple weeks and we need all the support we can get in the upcoming legislation!!! Thank you!!!

I am in love with these beautiful eyes!!!

Leah's on oxygen

We got the results from the pulse oxygen sleep monitor and there was some crazy stuff happening while she was sleeping. They, of course saw when she seized because her O2 went down to the mid 80's but would spike back up to the mid 90's. But, there was a period of time in the night that she went down to 74... many times. So they immediately put her on oxygen during the night. We also use the oxygen when she seizes and we can see a huge difference in her recovery. She has also showed a huge improvement since she has been on O2 at night. She is so much more alert. She has moved her head around and her eyes. Her eye contact is awesome! She wants to sit up and hold her head up...it's amazing! Her physical therapist even got her to roll over from her side to her back...many times. We were beyond thrilled. I think she should have been on oxygen a long time ago!!! She has an appointment in March to do a formal sleep study up at PCMC.

The waiting game

We are kind of at a stand still...just anxiously waiting for test results. We have an appointment with Dr. Swaboda on February 14th. We assume that's when we will get the test results. Who knows maybe they will call us with the test results before the appointment.

A bill has been written up for the Utah legislature to vote on legalizing CBD oil and allowing it to be brought in from Colorado. The bill is just AMAZINGLY well written. We are asking that our friends and family to call their Senators and House of Representatives and ask for their support on the bill. We will tell you the right time to go ahead and call. Please use Leah's story! I will post more details soon on how to find out who your Senators & House of reps are and a small guidance on what to say for whose who need it. Thank you so very much!

Leah is about the same. The vomiting came back with a vengeance!!! It totally exhausts me and gives me crazy anxiety! Leah saw her Pediatrician and I caught her up on Leah's appointment with Dr. Swaboda. She looked at Leah's tonsils and said from a 1 to a 4 she is a 3. She said this girl is going to need her tonsils out! WHAT??? Seriously!!! Well that explains all the snoring and all the snoring when she is wide awake! Crazy...so Dr. Hornyik ordered the pulse oxygen test. We did it at home while she was sleeping. We should know the results soon.

Lately I have meant some special needs mom's. These mom's just amaze me and inspire me!

Well 2014 has kicked off really good! I am really working on taking care of myself and I realize when I take care of myself I am a better wife and mother. I see a huge difference in my energy level when I eat clean and workout. I quit diet coke...yes, let me say that again I quit diet coke. And I don't miss it one bit. It's so horrible for our bodies and it just made me more sluggish!

Every second week of January Chad has to go to Texas for meetings and the last two years Leah has been put in the hospital that exact week. Chad has had to fly home early and he misses that whole week of meetings. He usually goes from Sunday-Friday. This year it's only Sunday-Wednesday. He is already on his flight. We made it! Yay!! There were times I really held my breath these past few days but no hospital stay for us this time. I love this quote:

A new doctor.

In November we saw Leah's geneticist Dr. Longo. At that time we asked him if we have exhausted him and all the doctors at PCMC? If so, we need to move on. Leah doesn't have time to waste. We told him that we are ready to seek doctors outside of Utah. He said before you leave the state you need to see Dr. Swaboda. So we did...we saw her last Thursday.

It was a longer visit than planned. We got to the U of U neuro clinic at 10:00 a.m. and meet with a genetic counselor for about an hour and gave her Leah's background. She was blown away by Leah's chart...yes, it's a book! Then Dr. Swaboda came in and talked with us and examined Leah. Dr. Swaboda is a Neurologist and a Geneticist, she specializes in movement disorders. She runs a program up at the U of U that specializes in researching these disorders. She asked if we could spend the day up there and she will spend time observing Leah and run some tests. They also took blood and did a spinal tap to test for motor disorders. She believes that Leah was born with a movement disorder and when Leah got her immunizations it brought out her disorder. She told us that she doesn't want us to get our hopes up but that there are a couple disorders that she could have that can be treated. We will get the results of the spinal tap in three weeks. We don't know how long it will take the get the results of the blood work.

So many times I asked the doctors: why doesn't my baby cry or move? They just shrugged their shoulders at me. I told the doctors so many times that I know Leah has something wrong with her and that her seizures are only a side effect to what's going on in her body. This is the first time that everything makes sense when we went to see a doctor. Everything she said made sense. 

She told us that Leah has torticollis and scoliosis. Poor girl! What else does this girl have to go through...

The doctor is extremely concerned with the amount of vomiting that's happening. She hooked Leah up to a pulse oxygen meter and Leah averaged a 94%. She believes Leah may have had some lung damage from aspiration or that her scoliosis is pressing on one of her lungs. She put Leah in different positions and Leah's pulse ox went down to 91%. She wants us to have a pulse ox meter at home and oxygen. She also wants Leah to have an overnight pulse oximeter study done. This would be done in our home. Then depending on what that shows she will order a formal sleep study. 

Dr. Swaboda highly recommends that Leah gets a Nissen surgery done. Its a procedure where they laparoscopically close off her stomach. She believes that if we don't do this chances are very high that Leah will pass away because of aspiration. She said depending on the results of these tests and if they find a disorder that's treatable then the Nissen would probably not have to be preformed. If they don't find anything then the Nissen would need to be preformed ASAP. 

So much information to take in. We are still trying to take all this in!

We pray that Leah has a condition that's treatable.

Leah gave us small smiles over the weekend. It was priceless!  

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!