Karly lives in Phoenix, Arizona with her husband and their two-year-old daughter Kassidy. She’s also due any day with their second baby girl! Karly is a nurse and for the past two years has been a stay at home mom. Her husband Tayt is a high school special education teacher, football and wrestling coach. When Karly was 18 weeks pregnant, Kassidy was diagnosed with Dandy Walker Malformation, agenesis of the corpus callosum, and cerebellar hypoplasia. The day after she was born she was diagnosed with hypotonia. She was not supposed to live outside the womb and she has defied every odd that was put against her. She also has an undiagnosed growth issue – Kassidy is 2 years old and the size of a 3-4 year old. She weighs 47 lbs and is 38 inches tall. Karly blogs about Kassidy’s journey at An Inchstone at a Time. Today she’s sharing what a regular day looks like for her family.
The day starts very early while I try to still get some sleep. Kassidy’s seizure alarm goes off in the middle of the night. I attempt to roll over and look at the iPad; she was just moving to a different position again. Thank God, I hate starting the day with a seizure. I drift off back to sleep, only to be woken up again by the alarm. She was only moving again. Kassidy’s alarm goes off many times a night. There are generally around 100-200 recordings every morning. Ever since the epilepsy diagnosis, she is the most restless child I have ever seen.
Our usual day starts around 5:30am to 6:00am. She is a very happy baby when she wakes up and to see her beaming smile in the mornings make it worth getting up so early. Kassidy is considered non-verbal. She can babble and make noises but she does not use words. She was saying some words before her first seizure, but since then she hasn’t said any. She is learning sign language though. After getting her out of her crib and positioning her on my ever-growing 9 month pregnant belly, we begin our walk downstairs to the living room to get changed and make breakfast. We have a morning routine that we follow every morning. She loves the morning routine so we stick to it. We change her diaper, give her seizure medications and then she will army crawl to the sliding door to watch the dogs outside playing in the grass. I then go start my coffee, make her soy milk bottle, get her blueberry muffin and a banana in the bowl and put it all on the end table next to my recliner. I let the dogs in and get Kassidy. We sit in the recliner and she drinks her bottle while I get some coffee in me. When she is done with her bottle she gets bites of her muffin and banana in the chair with me. She loves this time in the morning and so do I. When she is done eating she signs for being all done. I put her on the floor to play and army crawl around. She does not walk or crawl at this point. I go look at our calendar and today she will not get her morning nap because we have her Neurology appointment. It took forever to get this appointment and to resume care with her old neurologist since moving back to Arizona.
9:00 am rolls around and it’s time to pack the diaper bag and get in the car to go. I have to make sure I have her emergency seizure medication just in case she is to have one. I go and start the car and then come back in for Kassidy. I pick her up knowing she is 47 lbs and I am 9 months pregnant, but what am I supposed to do, not take care or pick up my baby? I get her in her car seat and start Beauty and Beast on the DVD player. Recently she has started to actually watch the movie in a car. She never watches TV or movies, she is not into them. So I am excited for the milestone to finally come.
We arrive at the children’s hospital where the neurologist office is. It’s now 9:45 and her appointment is at 10:00. I quickly get her huge 3 wheeled jogging stroller out and get her loaded into it. We travel through the parking garage and into the elevator. We get to the office on time and Kassidy is becoming cranky. She does not do well when she misses naps, she gets tired out often because of her hypotonia. I had remembered to pack a warm bottle of soy milk for her. She was happy to see me pull it out and she starts to drink it while I fill out more paperwork. I feel like all I do is fill out paperwork these days. After 5 pages of her history I am done and we get called back to see the doctor.
Dr. Timothy comes into the room and starts to ask about her seizure history. That was pretty much the only new diagnosis since we had moved away before. I tell him the dates of her seizures and how long they lasted and what they look like. He asks about her medications, and responds with what I’ve been fearing. He wants to put her on a second seizure medication because she is maxed out on Trileptal and she has been having break-through seizures each month around the same time. So we go over the meds that she could try. I tell him no Keppra; I know that’s the angry child medication. He then states he doesn’t want to go as far as phenobarbital yet, so we decide on Depakote. She also needs a new prescription for her Trileptal since our last one was from Oregon and he ups her emergency med to 12.5mg of diazepam instead of 10mg. He wants to do more genetic testing to rule out anything that may be hiding and do a microarray test too. These are all things that I have been dreading.
When we leave that appointment I feel defeated and honestly pissed off. I have been doing everything in my power to not have Kassidy on more seizure medications and to avoid genetic testing. My husband and I have known Kassidy’s diagnosis since I was pregnant. We love our daughter and who she is. We accept her and don’t want or feel the need to dig for answers. So to have to put her through all these extra tests just to see what might be there seems so excessive to us.
When we get back into the car I call my husband to tell him the news. He instantly knows I am upset and says that the new medication is best for Kassidy and that hopefully it will stop her from having more seizures. He agrees about the genetic testing being overkill but we will have to talk about it and decide what to do later. As Kassidy and I pull into our driveway, we say goodbye to Daddy and I unload her from the car into the house. At this time it’s 12:30 pm, way past her nap time of 8:30 am and she is hungry. She just keeps signing food to me, so I get her into her high chair and make her a peanut butter and jelly sandwich. They are her favorite these days and I am just happy that she is eating. She didn’t eat any food until she was 1. She wouldn’t open her mouth to anything. When we moved to Oregon I started doing homemade baby food as a last resort. I got veggies from my grandpa’s garden and she ate! She loved it and never looked back. She has grown to be able to chew on bread now and tolerate mostly everything. Meats are hard for her but she is strong girl and determined and she will get it. After she eats she is off to bed. I am hoping that she takes a good nap and that she is tired enough to not be restless the whole time.
Two hours have passed and she finally is waking up, it is 3:00 now. Thank goodness she had a good nap. She should now be able to play for at least an hour or so. Naps are one of the most important things for her. Her muscle fatigue is so bad and she won’t just relax on the couch and take a break. She just keeps going until she is crying on the ground asking to go to bed if I haven’t kept track of the time or her schedule. I give her some apple sauce to hold her over until her dinner time. She eats early and goes to bed early because by the end of the day she is exhausted. Her dinner is between 4:30-5:00 and we start her bedtime routine at 6:00pm. My husband arrives home at 5:30 pm and Kassidy’s eyes light up. She loves her daddy and he takes over playing with her, so that I can have a break. We start her bedtime routine and we begin to go over her new medication of Depakote. I look up the side effects and he gives her the medication with some apple sauce. He then gives her Trileptal and some Motrin since she has been showing signs of muscle pain today. I go make her bottle and she sits in my lap to drink it. I finally can relax. She didn’t have a seizure today, I didn’t have to go into super mom mode, and she is happy to be going to bed. When she is done with her bottle my husband takes her upstairs to her bed. I turn on the seizure alarm on my iPad and begin to start dinner.
Yes, around here we eat late. Kassidy doesn’t usually allow me anytime to make dinner before she goes to bed. While I make dinner, my husband and I discuss Kassidy’s day and her new medication. I also let him know what we have going on the next day for physical therapy and an appointment for me. Today was a slow day, it was nice. We both get to sit and relax, enjoy dinner and then off to bed for us also.