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.