Leah keeps running low grade fevers, so we took her to the doctor to get checked and it turns out that everything's ok. She has a huge terrible canker on her tongue, she is biting her tongue during seizures now. It's so heart breaking. Sometimes her mouth is full of blood after a seizure. We sure hope she gets a break soon!

Good news!!! We got an appointment to see Dr. Humpherys, we are so excited! Our appointment is April 21st. Thanks to a wonderful person who worked very hard to get us in! Thanks Jessica, you are amazing!!!! Dr. Humperys is a Naturopath, he has helped so many children!

Leah has had some wonderful moments and some not so wonderful moments the past few days...we choose to ALWAYS concentrate on the wonderful moments.

Gordan B. Hinckley said:
It isn’t as bad as you sometimes think it is. It all works out. Don’t worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. He will not forsake us. … If we will put our trust in Him, if we will pray to Him, if we will live worthy of His blessings, He will hear our prayers.

Leah finally got in her two bottom teeth . Wow... it was a long week! She fevered every day and averaged 7-10 seizures a day. She was so tired and didn't eat good. It took me and Chad an hour to feed her at each feeding.

Today was a good day, her fever stopped. She ate so much better and she let out a good cry at the end of the night!

The nutritionist said it could take up to two months to get Leah's seizures under control with the diet. Leah is on a 2.5 - 1 ratio of the diet, we will slowly work up to a 4 - 1 ratio. Because she is so young they didn't want to put her on the full ratio yet. We think when she is around one they will put her on a 4 - 1 ratio or close to it. Patience is the key!

I saw this today:


FAITH makes things possible...not easy!

One tooth broke through...another on it's way! It's been a long week.....

While Leah was in the hospital last week they took more blood to do a panel of DNA testing, they are looking for more genetic and metabolic diseases or disorders. Those test results should come back in the next 2 weeks.

Lots of febrile seizures = Very sleepy baby

A daddy's love!

Chad is an unbelievable daddy! He loves Leah so much.  He is a silver back gorilla when it comes to protecting his baby! He never leaves her side when she is in the hospital. At home in the night he gets up and checks on her constantly. The baby monitor sits right by his ear at night so he can hear every sound she makes. He hates leaving her in the morning to go to work and it breaks his heart to leave her when he has to travel.

He is the most selfless person I know. He gives and gives and gives to us! He is ALWAYS positive and happy! He NEVER gives up. We are all so lucky to have him in our life. We love you Chaddy!!!!

Well...we think Leah is having lots of seizures because she is teething. She has been running a fever. Poor little girl!!!!

Yesterday Leah ended up having six seizures and four today. It's been a hard couple days for all of us!

Therapy day!

Thursday is therapy day for Leah.  Becca comes and works with Leah and teaches me what I can do to help develop Leah's motor skills. We love Thursdays at our house! Becca is so positive and I love learning new things to help Leah. She did well today. She showed Becca lots of emotions, which she never did in the past.

Leah's seizures come only when she is falling asleep and waking up. When her left brain and right brain cross over something is back firing, which causes seizures. They don't know why this is happening, which is very frustrating. Not having answers is very hard! There is a good chance she will grow out of her seizures. Who knows if or when...but we pray she will.

This blog is great therapy for me, I want to write something everyday. Even if it's just a one liner, a quote for the day (to help me) or of coarse information on Leah.  I don't consider myself a great writer but I do this for me, my family and friends. One day I want to make it into a book for us to have to remember this time in our life.

Quote for the day:

Attitude is a little thing that makes a big difference.  ~Winston Churchill

Today we went to the hospital to get some labs done to make sure Leah's body is still handling the diet well. Saturday was Leah's best day, she had large ketones that day (we check her ketones 3 times a day through a urine sample not the best job but we do it). After Saturday she has only had moderate ketones, yesterday and today have been okay days for Leah. We hope her body will start producing large ketones again soon.

Last Saturday was awesome, we saw our old Leah. It's hard on me when she has bad days after a great day. I just want those good days to keep going. But...we focus on the good days and keep going. The negative can eat you up all day long if you let it. Every morning my goal is to think positive and always be grateful.

We mix up Leah's formula every night for the next day. It's quite the process, we have to weigh on a scale about 4 ingredients and mix it up. We test Lauryn and Trent's math skills and have them help us. Her formula costs around $350 dollars a month, thankfully our insurance covers it 100%. Another wonderful blessing in our life.

Leah cried today!!!

Here is the video of Leah crying today. We all cried! It was the most beautiful sound...what a blessing! FYI Leah hasn't cried in over two months!!

Leah's home!!!

We are so excited to have Leah home. She is doing really well, we have noticed a few things about her. She let out a little cry last night, her eye contact is great and is eating well. We are so grateful she doesn't have a feeding tube. She is a fighter, I have never seen a baby fight for their life as she has. She is amazing!!! We look forward to great days ahead of us.

We think we found a new neurologist today, he is very genuine and positive. I just want to say never never settle for the first doctor. There are so many doctors out there, some really good ones and some really really bad ones. ALWAYS get second and third opinions. If you search you will find the one for you. I believe as mothers and fathers we know what's best for our children they don't. I want a doctor that believes in mother intuition and listens to what we want for our children. One more thing, make sure you are in control when dealing with doctors. Don't let them control you because they sure love that power. Sorry...I had to get that out!

24 hours on the diet

Leah is doing well. She has been on the diet for 24 hours now, her labs are coming back good. She is taking the formula well. Her body is just starting to go into ketosis, for those of you that don't know what ketosis means it means her body burns fat for energy. She probably won't be fully into ketosis until tonight or tomorrow. Chad and I can start to see something different in Leah we can't pinpoint exactly what it is but we see something and it sure feels good.
Thank you everyone for your kind words, prayers and support. We feel it and it means so much to us!

Leah's story

Leah was born August 8, 2011 at 4:22 p.m weighing 7 lb 14 oz and 20 inches long. Leah was such a sweet newborn baby, she ate and slept well. She has such a sweet spirit and has brought so much joy to our family.

Leah grew well and began to smile. One day life began to change:

Leah at two months:

When we were at Leah’s two month apt her Doctor was examining her and said I think your baby is having small seizures. Before I knew she was rushed up to Primary Children’s Hospital in an ambulance. She had a CT scan, a spinal tap, blood tests, urine tests and a 24 hr EEG. They found nothing we were very relieved.

Leah at three months:

We continued with many doctor appointments and an MRI, still nothing found.

Leah at four months:

Leah had her first tonic clonic seizure. It was in December and I was sweeping my floors. Leah was asleep in her bouncer and all of a sudden I heard a weird cry and Leah’s face was froze and her body was stiff as a board, she was not breathing. I grabbed her and my cell phone and ran out my door screaming for help as I was dialing 911. I started running to my neighbor’s house with Leah in my arms. When I looked down at Leah she was turning blue I began doing mouth to mouth. When I got to my neighbors we layed her on the couch and I continued mouth to mouth. All of a sudden Leah wasn’t blue anymore and turned a very pale white color. At that moment I thought I had lost her. The ambulance came and gave her oxygen and Leah woke up. The paramedic told me that Leah had a seizure.  We went to Primary Children’s hospital again. They told us there’s nothing we can do. They already ran all tests and everything came back normal. They told us to go home.

Two days later Leah had another tonic clonic seizure at the store. It was very scary but I was a little stronger. She then continued having a seizure once a week. She still met all the milestones and started rolling, giggling and really playing with toys.

Leah at almost 5 months:

I took Leah into the doctor for a check up and everything went well. Leah’s doctor suggested waiting until she was 6 months for her immunizations I unfortunately disagreed and wanted her to get her shots. Her doctor said ok. We together decided to omit the whooping cough shot and did only single shots no combo shots. I remember like it was a nightmare the shots going into her legs I had a sick feeling inside.  At that moment I had no idea my life would dramatically change.

The next day December 31^st Leah went completely lethargic and started seizing over and over. We then decided to take her to Primary Children’s hospital. They admitted Leah and began a seizure medication. Chad and I celebrated the New Year at the hospital together.

January 1^st we went home and Leah continued seizing even on medication. The medication made her very sedated and the seizures made her very tired. Leah stopped crying, moving, playing and giving eye contact. We feel like we lost our baby girl. Lot’s of tears were in our home daily. Living in fear daily was a struggle.

A couple weeks later Leah’s pediatrician wanted her to go back up to the hospital and get more tests ran. They ran more blood tests for genetic and metabolic diseases. They did another in depth MRI looking for any diseases and brain damage. Everything came back normal. They did another EEG and found that Leah was having a seizure every 15 minutes in her sleep.  We then increased the dosage of her seizure medication.

Leah 6 months:

Leah is still having seizures (2-6 a day) Some days are better than others. She still hasn’t cried or moved. On days that she hasn’t seized we see a glimpse of our baby girl back. She tries to cry and starts to play with a toy. Those days help us get through the bad days. My days with Leah are very busy... eating can really take a lot of time depending on how many seizures she has had. We do therapy 2-3 times a day, I show her toys, pictures, feel different textures, read to her, massage her, listen to music and of coarse smother her in kisses.

Through a lot of research and prayers we feel strongly to treat Leah's seizures with the ketogenic diet. We have seen 5-7 Neurologists and they never once offered the diet to us as a treatment. We did our own research and brought it to them. They strongly suggested we add more medication instead of the diet. We disagreed and fought to get this treatment approved. It was so exhausting but we finally got it approved.

This experience with Leah has been very hard for us as a family. We have struggles every day, but we know we can get through this and fight for Leah's life back. We have learned that life is so precious.  We realized that we took our other children's health and our health for granted. Well...we will never take our health for granted anymore. We live life to it's fullest everyday, our relationship's with each other have completely changed. We thought we were a close family before now we are closer than ever.

We are so thankful for such brave children who give Leah unconditional love and help her every day. We are so lucky to have wonderful parents, sibling and friends who have helped us get through this difficult time. Your support, love, endless service, meals and encouraging words have meant so much to us. We love each of you so much! We want to thank Leah's pediatrician Dr. Hornyik for taking care of Leah, researching for us and fighting for us. Special thanks to Dr. Dawson for researching the Ketogenic diet for us. One more special thanks to Becca Leah's Occupational Therapist, thanks Becca for taking care of Leah and inspiring me each week.

We began a new life for Leah tomorrow March 6th, she will start the Ketogenic Diet (a treatment for epilepsy). She will be in the hospital for 4-5 days. We started this blog to keep everyone updated on Leah's condition. We will try to post everyday.