Thankful Tuesday.

I truly believe in having gratitude everyday. It's what gets me through my days...especially the hard ones. Leah has an eye infection and she hasn't stop seizing for two days now. I start to get panicked on the second day, hoping she will pull out of it soon. Maybe these new medications are causing more seizures. Dr. Swoboda said that could happen. Who knows? It could be her eye infection too. I try not to over analyze or I would go crazy!

Last night she was seizing over and over. Her extra doses of seizure medication's were not stopping them. She had a moment of just shaking to death. I couldn't get her to stop. She shakes with seizures but this time was really bad. Chad was out of town and I got really scared. I wrapped her up tight and just rocked her. I said a little prayer and began to list off in my head all the things I am thankful for. I immediately stopped crying and all the anxiety started going away. Leah soon began to slow down with her shaking.

Lately, when I am struggling I start to think about everything I am thankful for. When I do this my fears and doubts literally melt away. It truly works!

Every Tuesday I want to write about gratitude!

A new path of answers.

On Friday morning Chad and I took Leah to see Dr. Swoboda. We were informed that Leah's spinal tap showed that she has a dopamine deficiency. The doctor doesn't know the root cause so they took more blood and sent it off to a Children's Seattle hospital. In the meantime she is treating Leah with dopamine metabolites. Because Leah has had severe reactions to medications in the past Dr. Swoboda wanted Leah to stay up at the clinic for the day and make sure she does well while she started her on a couple medications. Leah didn't have any adverse affect on the new medications so we went home. She is on a very low dose right now. Dr. Swaboda wants to keep in close contact and slowly up the medications. She said it will take a couple months to fully work. We have already seen some changes in Leah. She is very active with her eyes. She is moving her arms, hands, fingers, legs and toes (she has never really moved her toes). These are very small moments but she is moving. Also, when we hold her she tries to move her core, which totally freaks us out. When she does this we think she is going into a seizure but she doesn't she is just moving. It's been so fun to watch her interact with us. We are still trying to stay grounded and not get our hopes up too much! It feels so good to be on a new path. This doctor amazes me. She is working so hard to find out what's wrong with Leah. I am trying really hard to never live in the past but it bothers me that none of our doctors sent us to Dr. Swoboda. Leah's condition is exactly what she specializes in. I just have to leave it in the past and be happy that she is now our doctor.

By the way...what Leah has is extremely rare!!! Obviously right?!!

It's time to write to your Congressman.

The bill for CBD oil is going to be voted on this week. Please if you can take 5 minutes to write your Congressman. Here is the link http://hope4childrenwithepilepsy.com/how-to-help/ . Then click on: Make an impact Legislatively. It will tell you exactly what to do. It is very important that you follow the instructions. Please have your spouses, family and friends do the same. I can't express enough how much this means to us. It's our last hope! I've been thinking a lot about this and I really could be feeling a lot of emotions about it. There's times that I start to feel stressful, anxious and nervous. I really have no room in my life to have those feelings. I can't let fear control me. The thought that my daughters life could be in the hands of a bunch of politician's literally could eat me alive.  But I chose to only have one emotion...peace! Peace that everything will work out. Peace that God is in control and no matter what happens...everything will be okay!


Leah has been sick for over a week. She has a bad cough. She picked it up from her brother Tyler, who has had walking pneumonia for two weeks now. As soon as she started coughing I immediately took her to the doctor. Dr. Hornyik called her in an antibiotic and also a pulse oximetry to have at home. She also got suctioned out at the doctors office. Her pulse ox hasn't stayed above 88 so she is always on oxygen right now! Between being hooked up to the pulse ox machine, oxygen and her feeding tube it's hard to hold her. I also feel like we have a small hospital in our home. But she seems to be doing a little better.  Lauryn and I got it...it's a nasty sickness!!!

As I sat holding Leah while she was sick this week I really enjoyed having her snuggle up to me and peacefully fall asleep in my arms. This is very rare because Leah for some reason never naps and never falls asleep in the day. She cried a lot this week...sad because she clearly was not feeling good but I really loved hearing her voice. When she cried I picked her up and rocked her and sang to her. She would stop crying and fall asleep. It was so wonderful to have this moment with her this week. She loves when I sing to her. I have a horrible voice but every child loves the sound of their mothers voice. I love singing to her. I love to see her eyes light up when I am singing. It's the special way that we connect. It's God's little mercy!

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!