Dear Friends,Above are a few pictures from Lila's first Thanksgiving!! No, it's not just you, Daniel DOES have bruises on his face in these pics!! He did a cage fight a week before Thanksgiving and still had the marks on him but I was determined to get a family picture! Anyway Thanksgiving was pretty good but we were all worried about Miss. Lila. Early that morning, around 3:00 a.m., I woke to Lila screaming. When I picked her up out of her bed I noticed that she was rigid and her right side was convulsing. I quickly laid her on our bed next to Daniel and woke him. We laid Lila on her side and tried to get her to respond. Her left side started convulsing too and she was blinking her eyes rapidly. She was obviously having a seizure. I called my mom and grabbed the camcorder and recorded it. The seizure had been going on for about 10 min, so we decided to take her to the hospital. As soon as we got her in the car the seizure finally stopped. She was responding to us and breathing fine so we decided not to take her to our crazy little hospital. I fed her a bottle, cathed her, and she fell asleep. I watched her the rest of the night and finally went to bed myself at six. Now we had been battling a double ear infection for a month and she had a UTI a two weeks before Thanksgiving. Her urine had been cloudy but the follow up urine sample from our local hospital had come back negative.
Lila started throwing up later on Thursday night. Daniel and I were scared that it was her shunt since she was vomiting and had a seizure. She was also running a little temp. On Monday( the doctor had been closed since Thanksgiving) Daniel and I decided to take Lila to Kosair Children's Hospital in Louisville to get her shunt checked out. When we got there the Neurosurgeon was waiting for us ( I had called ahead and told them we were coming). They quickly took Lila back for a CT scan and did an X-ray to check her shunt. Within 20 min the doctor came back to the ER where we were and told us her shunt looked great!!! We were so relieved!!!! They did a urine sample and it came back that she had a RAGING UTI. So long story short we were admitted from Monday to Friday. We had the same issue with Lila being resistant but the doctors were great and figured out a med that she could take. They also did an EEG. It came back normal but the Neurologist told us that Lila probably has an underlying seizure disorder and when she gets sick her seizure threshold is lowered which makes her more vulnerable to having seizures. The doctor switched her Pheno to Keppra and she also checked Lila's blood levels to see how much pheno she had in her blood. The doctor decided to put her on a higher dose of meds. They told us they have a Neurologist that comes to Evansville, IN once a month and accepts Illinois Medicaid!!! Yay!! So they will follow up with her there! We are so excited! In the future we will have to watch her closely when she gets sick. And no baths by herself when she gets older, we will also have to watch her closely when swimming.
Overall the hospital stay was not to bad and we got some great answers!!! Finally!!! We LOVE Kosair! I'm def not taking her back to Cardinal Glennon. Lila is feeling better and has learned how to kiss : ) she puckers her little lips and leans her face up to kiss her uncle and aunts : ). That's all for now! Blog more later!
Love,
Alyssa, Daniel, and Lila
