Angel Elise

Our family had a bit of a scare this week with Elise. At about 10:00 pm she started having a seizure while in bed. Heidi noticed and called for us to come quickly. We soothed her and kept her airway clean the best we could, thinking that surely it would stop soon. However, it kept going. After about five minutes (which seems like ETERNITY), we gave her an emergency dose of anti-seizure medication and called the paramedics. They arrived very quickly, however, she was still seizing off-and-on. They took her and Eric in the ambulance down to Children's Hospital in Seattle. There they were finally able to stabilize her. She stayed overnight, and was released at about 7:00 the next night. She is making slow progress at home toward recovery. She is still very weak and unable to sit up. You can tell she is uncomfortable and it is making her frustrated.

Seizures are not a new thing for us, although thankfully they are still uncommon. Elise was born with a rare neurological condition called lissencephaly, or "smooth brain." Instead of developing ridges and valleys on the surface of her brain, it is very smooth. This changes the general make-up of the brain and triggers generalized seizures. It also causes severe mental and developmental disabilities.

Elise had her first seizure when she was only three months old. She curled up in a ball and started shaking uncontrollably. She was taking very labored, shallow breaths, and after about a minute her lips started turning blue. Once the shaking stopped, she became as limp as a rag doll and was completely unresponsive. We were terrified. We both knew what a seizure looked like, but nothing can describe the terror in seeing your own child go through it. When afterwards she was so unresponsive, I actually thought that I was watching my daughter die right in front of me, with nothing I could do about it. I distinctly remember praying all the way to the hospital saying, "Please don't take her away from me, I'm not ready to let her go."

At first the doctors were unable to determine why she was having seizures (she had two more at the hospital that day). They did a spinal tap and ran a CAT scan, with no evidence of problems. They put her on phenobarbitol for an undeterminable amount of time, and eventually sent us home. The phenobarbitol made Elise very drowsy. She would not do anything that it seemed like she should be doing. She showed no interest in toys, or tried raising her arms up. She seemed content to just sit in our laps all day.

When she was about eight months old I decided to take matters into my own hands. I felt like it seemed unnessecary to have her take a medication to prevent seizures when they didn't even know if she would ever have them again. And I felt sure that this drowsiness it caused was slowing down her development. Something just didn't seem right. So I started weening her off the phenobarbitol.

After about a month we started noticing that Elise would occassionally make little jerks for no apparent reason. Her doctor (we had moved and changed doctors throughout this time) was concerned about her delayed development and recommended we have some more tests run at Children's Hospital. She had an MRI done there, where they were finally able to see the problem and give us a diagnosis.

All I remember about that appointment was the physician assistant sitting down with us and saying, "Your daughter has lissencephaly," and that "she will probably never reach beyond a three- to five-month developmental level." And last, "she has a two-year life expectancy." That was all I could register.

We went home in a daze, then started poring over the internet for information. The information out there is not good. In fact, it was devastating to read. It was a very bleak time for us. There is no description adequate enough to portray the depth and range of emotions you go through as a parent. I had to mourn over a lot of things....loss of a normal, happy life for her, wondering if she could have meaning and fulfillment in her life, wondering if I would be able to cope with the different challenges it would present. I remember telling Eric the thing I feared the most was that I wouldn't have a personal relationship with her, that I wouldn't be able to see her own little spirit and personality coming through the disability. I wanted to feel like I knew her real spirit, that I could recognize her in the after-life. I really worried about that. Luckily I was very wrong to worry there. I now feel like I know her very well.

Once we had a diagnosis and the appropriate medications were given to her, we were able to tackle the new world we were entering armed and ready. We learned that motor skills, as well as speech and oral skills, are greatly affected by this condition. So Elise started "school." At first a physical therapist came to our house twice a week. Elise used to cry every time she saw her coming, because she knew she would make her work! Eventually she started going to a developmental preschool where she received physical and speech therapy (she still had troubles eating). When she turned three she started going to school four days a week. She still doesn't like her physical therapist, no matter how nice she is to her!

Elise has made huge strides in her development! She eventually learned how to sit on her own and roll around. Gradually she figured out that she could get places a lot faster by scooting around while sitting on her bum. She has actually gotten very fast at this! She is also developing her fine motor skills, grabbing and grasping small items. She has also improved her eating skills. At first she would not chew her food, just squish it against the roof of her mouth and swallow. Now she can chew and swallow a variety of things and loves to feed herself.

But the thing I love the most is that she has a very definite personality. She is very sweet and loving. She loves to laugh. She can sit in front of the mirror and play with herself for hours. She loves music and will bounce to the beat whenever she hears something fun. She is a Daddy's Girl through and through, he is all she wants when he comes through the door. She is also very independent, like she should be. She gets frustrated when we try to do something for her that she feels she should do herself.

To wrap up our story, Elise is now four years old. She has been very lucky in how well her medications have been able to keep her seizures under control. She has had very few, and none nearly as tramatic as the one this week. She has developed far beyond the doctors' expectations of her. I know that none of this is just by chance, it is a special blessing from our Father in Heaven. She is our little miracle!