Happy birthday, Lizzie!

Lizzie is one year old today! 

A year ago we didn't know what challenges her first year of life would bring, but even if we had known, it wouldn't have changed our joy at meeting her. We love having Lizzie's sweet spirit in our midst.  We are so pleased with her progress and feel very blessed to have so many supporters. 

Happy birthday to our baby girl!

Walking again

We will be walking in the St. Louis area Epilepsy Walk on Saturday, June 16th.  If you are interested in walking with us or in donating to the Epilepsy Foundation, please click the link below for more information.  Thank you for your support!

http://seizetheday.kintera.org/faf/donorReg/donorPledge.asp?ievent=475388&lis=1&kntae475388=8E5289F9E78C4171971C57DBF214C230&supId=354734720

What I was going to say

Someone asked me what I was going to say that I didn't say on Sunday at the Epilepsy Walk, so here's the text of what I planned to say:

Good morning!  I’m so excited to see all of you here today.  You’re probably here because epilepsy has affected your life or the life of someone you know.  I’m here this morning with some of my family and friends to walk in honor of my youngest daughter, Elizabeth. We call her Lizzie. 

On  Saturday, September 10, 2011, our family was at a neighborhood festival being held at our church.  Lizzie was three months old and was strapped into the baby carrier on my chest, asleep.  I was helping at one of the booths, doing face painting, when all of a sudden I felt Lizzie stiffen and jerk.  I looked down and her eyes were rolled back in her head and her little body jerking rhythmically.  It only lasted a few seconds, but it was terrifying.  One of my friends noticed the look on my face and asked what was wrong.  I said, “I think Lizzie just had a seizure.”  I quickly got up from the table and began to walk inside the building.  My friend went to try to find my husband, and then Lizzie had another seizure.  We left our three other daughters with friends at the church and quickly drove to the nearest hospital.  There, in the emergency room, they checked Lizzie out, drew some blood, and started an IV.  She had a CAT scan, and when that was finished, she was loaded into a Children’s Mercy ambulance and taken downtown. 

At Children’s Mercy, Lizzie was admitted.  She continued to have seizures.  This will sound strange, but I was glad when she had two seizures in the presence of the neurologists, because then they could see exactly what we were talking about. Over the course of the next three days, Lizzie had numerous blood draws, two spinal taps, two EEGs, and an MRI.  They wanted to rule out infection or anything else that might be causing the seizures.  I still remember the grave look of concern on the doctor’s face after the first EEG.  He said, “Her EEG was not good” and proceeded to tell us that Lizzie was showing a lot of seizure activity.  He said that the kind of seizure activity she was showing was consistent with severe cognitive and other developmental delays. He said that the brain waves shown on her EEG looked more like those of a premature infant instead of a three and a half month old.  He said it was likely her seizures would not be able to be completely controlled by medication.  The doctor even mentioned some specific epileptic syndromes, some of which may limit a patient’s life expectancy. He repeatedly told us we were facing a long road ahead.    Needless to say, when Lizzie was discharged from the hospital, I was full of worries and concerns.  However, we were blessed to have the support of many, many people in the form of prayers, cards, meals, child care, and financial assistance with medical bills and prescriptions.

Today, although the worry is still there in the back of my mind, it has lessened somewhat because Lizzie is doing very well.  We still don’t know why she has epilepsy.  All her genetic tests have come back normal, and her MRI was normal as well.  It frustrates me a little that they haven’t been able to pinpoint a cause, I guess because I think if they could nail down the cause then they would know what they’re dealing with and have a more specific plan of treatment.  However, Lizzie’s medications are keeping her seizures under control, and she has only shown a few minor delays in her development.  Her therapist from Infant/Toddler Services thinks she’s looking good, and her neurologist is also very pleased with her progress.  For the most part, Lizzie is a lot like other ten-month-old babies.  Although of course I don't know what her future looks like, right now I am just grateful for who she is and all she can do.

This Walk is a great way to bring awareness about epilepsy. The money raised helps the Foundation provide services for people living with epilepsy, provide awareness programs for proper seizure recognition and first aid, provide a voice to make sure health care options for people living with seizures remain strong, and provide much needed research funding toward better treatment options and ultimately a cure.  Thank you for being a part of such an important cause!

A lot going on

We have had a busy few days!  Friday, April 20th, Lizzie had another EEG.  The routine was similar to what we had to do for the EEG she had in October.  We had to keep her up two hours past her bedtime the night before, and then wake her up at 4 AM and keep her awake until the EEG at 7:30 AM.  Lizzie got pretty sleepy as the morning wore on, so I kept her awake on the car ride to the hospital with a wet washcloth, which of course she did NOT like! 

Now that she's older, it was harder for the tech to get all the little buttons glued to her head.  You may or may not know, the buttons can't just go any old place; there are very specific locations they have to put them on the head in order to get the best measurements.  Lizzie was very wiggly and did not appreciate being held down so the buttons could be attached.  At one point Daddy was holding her head still, and I was holding her arms down.  This left me in the path of her feet, which she was angrily kicking for all she was worth.  I was getting kicked in the face and throat repeatedly, so I finally turned my head.  She was then kicking the back of my head, but it wasn't as bad as the face.  You may say, "Oh come on, she's ten months old, how bad could it be?" but I can vouch for the fact that she kicks hard!  I even have a little bruise on my jaw in one place. 

Once they started the EEG, it was pretty uneventful.  They let her go to sleep for a while, then they woke her up and flashed the strobe lights at her to see if they would provoke a seizure or other change in her brain waves.  Then they got out the nasty-smelling adhesive remover to take the glue off her head.  It didn't all come off, so we're still peeling little bits of it out of her hair as we can.

Saturday the 21st we celebrated Kate's 3rd birthday.  Her actual birthday is not until the 29th but since Tom's parents were in town and my parents were available we went ahead and had her party that day.

Sunday the 22nd was the Nichols-Purucker Epilepsy Walk.  Obviously we had never participated before, so I wasn't quite sure what to expect, but it was a good time.  They had asked me to speak ahead of time, so I prepared a short version of Lizzie's story to share.  A lot of people were talking when I (and others) got up to speak, so I got a little distracted and didn't end up saying everything I had intended to say, but I think it went fairly well.  The walk route was just around the mall, so we didn't have to worry about the cool, windy weather outside, which was nice.  The whole atmosphere of the walk was very laid back and casual.  If you came and walked with us, or contributed money to the Epilepsy Foundation in honor of Lizzie, THANK YOU!  We are so grateful for your support!

Today I called the neurology clinic to see if they had the results of Lizzie's EEG.  The doctor I spoke with was one she had seen when she was admitted to the hospital in September, but not Dr. K, who she's been seeing in the neuro clinic.  Dr. K was out of town this week so Dr. L was taking his calls.  To sum up the results of the EEG, Dr. L said that it was about the same as the one she had in October, but much better than the ones she had in September when she was hospitalized.  He said that the EEG was abnormal.  It did not show any "epileptiform changes" (seizure activity), which is good.  However, it still shows "focal slowing".  I asked him to explain what that meant, and he said that it is seen in the context of children who are cognitively delayed or have a structural abnormality of the brain.  He said that in and of itself, it is nonspecific in telling us why she has epilepsy, but put together with other tests, such as MRI, it can tell us more. 

I will probably call the clinic again in a week or two to speak to Lizzie's regular neurologist and see if he has any further information or interpretation of the EEG. I think it's safe to say that I'm slightly disappointed it didn't show any improvement, but also slightly surprised, because she seems to be doing so well.  However, I'm also aware that things could be a lot worse for Lizzie.  If this is "abnormal," I can happily live with it!

I also asked about genetic tests to see if any results had come back.  He said that the SCN1A and ALDH7A1 tests were both normal.  ALDH7A1 is the gene that would be affected if she had pyridoxine-dependent epilepsy; since it is normal, I guess that means she doesn't.

That's about all I know for now; I will try to be better about updating the blog, although sometimes there are periods of time when there's not a lot to report.  Thank you for checking to see how Lizzie is doing!

Neuro appt

We saw Dr. K at the neurology clinic today.  We had a Saturday appointment because he is going to be out of town a lot during April, so they're trying to get people in a little ahead of time.  He checked Lizzie over and expressed how well he thinks she's doing with seizure control and development.  She's looking so good, in fact, that he doesn't need to see her back in the neuro clinic for SIX MONTHS!!!  He does want to do another EEG in a few weeks, but he anticipates that it will look pretty good based on her demeanor and behavior. We are amazed and so excited!  It was a good visit!

Quick dr. visit

I took Lizzie to the pediatrician today to get her ear checked to make sure she didn't have an ear infection.  All is well and she weighs 18 lb 6 oz!  That's a pretty big gain in such a short time!