Love4Lilly - Service Dog

                                                                                    MEET LILLY PIHIR
     AN AMAZINGLY STRONG AND COURAGEOUS LITTLE GIRL

June 27, 2010 Lilly Pihir had her first Tonic-Clonic (gran mal) seizure. We had just arrived at my parent's house. This was 24 hours after her 6 month vaccines. She went from giggling and clapping to being stiff, shaking violently, & barely breathing in a matter of seconds. It was terrifying. I remember kneeling next to my 6 mo. old daughter, seeing her eyes rolled back in her head, unresponsive and holding her hand, telling her to breathe. I was screaming & begging for God to save my baby.

The paramedics arrived with in minutes and Lilly continued to seize all the way to Cincinnati Children's Hospital. Her seizure lasted roughly 25 minutes that day. The doctors did MRI's, a spinal tap, blood work, you name it. They tested for it. They kept us for a few days to monitor Lilly. She had no more seizures while we were there & they let us go home. They told us that everyone is allowed to have 1 seizure in their life with out being diagnosed & put on medication. 

Less than a week later Lilly had another intense seizure, lasting nearly 20 minutes! After a long stay at Cincinnati Children's Hospital and many tests they diagnosed Lilly with having a, "General Seizure Disorder". They don't know why she started having seizures. She baffled them. We've tried different medications & combo of meds. They either worked at keeping the seizures at bay for a short while or they made Lilly completely groggy to where she couldn't function daily.

These disabilities are a big part of our lives and we've accepted that. We are just hoping you can help us give her a safer & better quality of life for Lilly. We know that all it takes is ONE seizure and it could take our baby girl from us forever. There have been many times during her seizures that she's stopped breathing for minutes at a time. Moments we will never forget. For the time in between these moments, I want to build happy memories with our family and give her the best chance at a happy life. 

We count our blessings each day for the time we've had with her. Now, nearly 3 1/2 years later we are still battling the disorders & disabilities and will do so the rest of her life. To add to her aggressive seizure disorder she suffers from a severe mood swings where she becomes a danger to herself, lack of coordination, she is non verbal, severe constipation, muscle weakness, low muscle tone & she is globally delayed. Across the board she has a 10-12 month olds development. 

Her daily struggles are walking, talking, using fine motor skills, using gross motor skills, seizures, mental & emotional instability (there are often times she's a danger to herself as a by product of her psychiatric disorder. Due to her delays she has no perception of action & consequence. She depends on medications to provide her with a peaceful nights sleep as well as keping her seizures at bay. We've spoke with her neurology team, children's social worker, psychiatry team, & many of her nurses. They are all in agreement that this will be a life long journey for her. We will be there every step of the way. 

All it takes is ONE tonic-clonic (gran mal) seizure and it could take our baby from us forever. We can not let that happen. We will do everything in our power to help her survive the attacks from the, "seizure monster". That's what we call them. I want & need to giver her best quality of life possible. We can't do this alone. We need your prayers desperately.

Her neurologist has confirmed that Lilly will never be seizure free but our goal is to get her down to less than 3 a month. The kind of seizures she has are the Mother of all seizures! Tonic-Clonic seizures can & have caused long term brain damage for Lilly. She is at high risk for SUDEP which is death caused by a seizure. Due to Lilly's seizure disorder she is globally delayed. She has developmentally half her age since the seizures began due to brain damages she incurred. 

Lilly needs your prayers & support.

Thank you from the bottom of our hearts for taking time to support and pray for Lilly. 

Hugs,
Tiffany aka Lilly's Mommy