(This is going to be long. Like really long. Why don't you go potty and get yourself something to drink before continuing? I'll wait...)
I heard the happy call of "Mommy! I wake up this mornin'!" and smiled to myself. Alison makes this statement upon waking, no matter if from a nap or her Big Sleep at night. I got up from my computer where I had been working and met her at the foot of the stairs for the big hugs and snuggles. When she reached the second stair from me, I noticed it...the puffiness on the side of her face. She was having a bit of trouble moving one side of her mouth but that did not stop my girl from telling me what she would like for a drink and snack. I immediately checked her over for a possible spider bite, thinking this was an allergic reaction of some kind. After finding no evidence of that, I began thinking the worst. What just happened? How can her face be this puffy and have no discernable cause? I could tell her face was returning to normal but I was still scared. I called my husband who had just left he house a half hour before to run some errands. By the end of our call, she was perfectly fine, chattering away and playing happily. We chalked it up to "one of those weird things" that happens to kids occasionally. Maybe she slept on it wrong? Who knows? Let's just keep an eye on her.
Five days later, on a Monday morning, she was sitting on the floor in the living room watching Dora. I was laying on the couch behind her, trying to catch a few zzz's to make up for what I didn't get the night before. I felt her patting me on the chest, trying to get my attention. I tried to roll over, telling her, "Ali, just let Mommy sleep for a few minutes, okay?" She ignored my plea and kept up with the patting. Opening my eyes in annoyance, I noticed that her hand holding the side of her face was shaking. I figured it was yet another goofy face that she just made up and had to show me. I pulled her hand down from the side of her face and discovered that it wasn't her hand that had been shaking...it was her cheek from the eyelid down. It was spasming at a pretty good clip, and she was drooling out of the side of her mouth. Freaked out, I yelled for my husband to GET IN HERE QUICK! In the three seconds it took him to bound from his desk to my side, the spasming stopped. She still didn't have control of her mouth and the drool was pouring out. Her eyes were clear, big, and scared. She looked at us as if to say, "What's going on here, guys? You wanna take care of this?" We hugged her and asked her if she was okay and what her face felt like. She said that her face was "kinda blinking" and could she have some more juice? We called the pediatrician immediately and were told we could see him at 2:15pm. We watched her carefully for the rest of the day, biding our time until the appointment and knowing that somehow, this was going to a Big Deal.
The kids' pediatrician, Dr. Sam, is pretty awesome. He is a parent first, then a doctor, which gives me immense confidence in him. After examining Goofball (as he calls Alison) and having her do some neurological exercises such as standing on one foot, spinning and jumping, and touching her nose, he calmly told us that he wanted to order a CT scan right away. When we questioned him about his suspicions, he frankly said he didn't know what was going on. It could be this, or it could be that, or worst case scenario, "It could be a growth."
I've never been punched in the stomach in my life, but imagine that what I felt in that moment was very close to the sensation. It seemed as if all the air had been sucked from the room. My eyes welled with tears I fought back because I knew that if I let them fall, it was all over. My girl did not need my tears, she needed me to pay attention, stay clear-headed, and handle what was going on. Roger, my poor poor husband, appeared as if he'd been run over by a truck. His skin went pasty white and his eyes went from blue surrounded by white to blue surrounded by red. He tried several times to get out a complete question to the doc and finally gave up by saying, "I'm sorry, I'm not doing too well right now. I may pass out." He eventually had to lay down on the exam table to get his bearings and let the fainting sensation pass.
This was all so surreal, so freaky, had such a What The Heck?! quality to it, that it almost felt like it was happening to someone else. My daughter, who had been happily playing in the exam room and chattering away, picked the moment right after Sam uttered the word "Growth" to decide to jump from the exam table stool to the ground, falling forward and catching herself by using her scalp against the doctor's desk. Much blood, much tears, possiblity of stitches, and here we all sit. Dumbfounded, comforting a bleeding preschooler, and I start laughing. That's my defense mechanism, my release valve lest I explode. Alison started laughing with me while Roger sat still and quiet. We looked at each other and said, "what are the chances of one of our kids actually injuring themselves in the doctor's office?"
My husband did recover himself enough that while laying on the exam table, he told the doc, "Hey, you took care of Ali's head wound and made sure I didn't collapse. Maybe my wife can break her leg before we leave here so you can treat all three of us in one shot." Not bad for a guy close to losing it, huh?
Our doctor spoke with the pediatric neurologist that was on call that week and they decided to order an MRI/MRA scan for Alison. This would require her being sedated because, as a general rule, four year olds don't do so great in MRI chambers. It was scheduled for Thursday of that week, which left us three days to worry, pray, and wait...
The praying we did during that time... I cannot tell you. The crying out to God for our daughter's life, health, well-being, anything and everything. The trying not to fall apart for Zachary's sake. The trying to reconcile the idea there may be something seriously wrong with our girl who at the time was acting no different than she normally does, running, playing, bossing her brother and making plans for world domination. We prayed for her not to freak out when they gave her the IV for sedation, because as we had witnessed a year and a half ago, our Ali is not a fan of the IV. We prayed for wisdom for the medical personnel, that they would be able to tell us just what was going on and give us a plan.
The MRI/MRA went well, better than we expected. Alison wasn't all that thrilled to discover the reason we roused her out of her nice warm bed early that day was to go to the hospital, but she did amazingly well. Even when the IV was inserted, she cuddled close to me and only whimpered a little. Our brave, brave girl.
The only really bad part about the MRI (besides her having to have it at all!) was the after-effects. They told us that some kids can get a little difficult while the sedation is wearing off, and not to worry, they will be themselves again soon. Um. Not quite. If by "difficult", they meant "possessed," and by "soon", they meant SIX HOURS LATER, then yeah, I guess they were right on the money. Somewhere around Hour Two, I quit referring to her as Alison and started calling her "our nasty little drunk".
We were told at first that she had a "blood vessel anomaly" that could be causing her problems. It could be this, or it could be that. She might have this, or maybe this other thing over here. Having been in the medical field for over twenty years, you'd think I'd be more able to handle the medicalese they have to give you in order to cover their own butts. They have to tell you best and worst case scenarios and everything in between, in case it's something they're not 100% sure of. (In other words, you could have a hangnail, or maybe you need your arm amputated. It's a toss up.) Our doc recommended we contact the pediatric neurologist's office directly to make an appointment. The sooner, the better.
I called the neuro's office and spoke with his receptionist, who is so friendly and wonderful. They would be happy to get us in, bright and early on December 7. What? What? You have got to be kidding me. We have to wait until December? I was thinking all of this, but didn't say it. I have been in her shoes before, and let me tell you, it does not pay to be snotty to the receptionist. She is the gatekeeper to the doctor. Tick her off, and you will never get in. I politely told her that we would be happy to come in whenever they had an opening, and could she put us on a cancellation list? I then asked what I was supposed to do if Alison exhibited any of these symptoms between now and the appointment. Call us, we want to know, she told me. She also said that the neuro might want Alison to have an EEG before coming in so he could have the results read by her appointment.
The neurologist we had the appointment for is only one of two pediatric neuros in the Boise area, and has been for about twenty years. He serves all of Southern Idaho and Eastern Oregon, so to say that his schedule is always jam-packed is an understatement. I knew we were fortunate to get the appointment we did, so I tried to be thankful. This was on Friday morning.
Friday afternoon, I got a call from the neuro's receptionist. She said, "Hey, darlin, what are you doing on Monday morning?" I said, "I am doing whatever you tell me to do on Monday morning." She scheduled Alison for an EEG, with a followup appointment with Dr B on Tuesday! He had a cancellation, and wanted to get Alison in right away. Thank you, God. Thank you.
The EEG went well, although I about lost it seeing all the electrodes they had to hook to my baby's head. We sat in a big comfy chair in a darkened room and watched us some Dora while the machine beeped away. Completely painless, but yet a pain.
Tuesday arrived, and Roger and I were so completely nervous. Overwhelmed. Frightened. I wanted the time to pass quickly until our appointment. I wanted time to slow down completely so I wouldn't have to go hear what an expert was going to say about my baby. My husband kept commenting on how together I was, how strong I was, ever since the beginning of this saga. (which by this time, had been eight days). I didn't feel all that strong or together. I felt like an absolute mess. But I just knew that I couldn't let go and fall apart just yet. If this was going to turn out to be Something Major, I would have plenty of time to fall apart later. I had to get through this, get her to the doctor, find out what he had to say. I cope by having information, and just looking to the next step. Just gotta go to this next appointment, then find out the plan. Roger tends to look at the whole big picture all at once, past, present, future. He takes it all in at one time, and that can be a heavy burden. I try to shut off what I can't do anything about and concentrate on what I can. It's probably not the best way to deal with things, but it's what I know.
We met the doctor, who started off by showing our daughter a picture of a beautiful young lady. It was his daughter, Alison, spelled the same way as our girl. He chatted her up and Miss Social Butterfly basked in that. Then he got down to business.
He began telling us how he's a Yale graduate who's been practicing for over twenty years. He travels around the country lecturing to other ped/neuros at conferences and symposiums. He's personally treated x number of children. He trained here, and studied this, and does this other thing. Blahblahmedicalblahblah. For the life of me, I could not figure out where he was going with this, until he said, "Now, the reason I'm telling you my life story is to let you know that I know what I am talking about. I want you to trust me." Really, at this point? He could have said he just got back from a sabbatical where he acted as a rodeo clown and I wouldn't have cared. I just wanted answers.
He told us Alison had a childhood seizure disorder called Benign Rolandic Epilepsy. It usually manifests itself in children between the ages of 5-7, lasts about two years, then they outgrow it. No one knows why kids get it, or why they grow out of it. (Those facial spasms Ali had are actually seizures, even though she had no loss of consciousness or mental acuity. And here I thought seizures were the fall on the floor, thrash around things that we all associate the word with.) (A seizure is actually defined as any loss of muscle/body control not caused by an injury or pharmacological reason). Most kids never have another seizure ever after the first one that gets them diagnosed with BRE. Some kids have more seizures and have to go on medication. There are no indicators other than an EEG that can predict who MIGHT get it, although siblings can have the same EEG pattern, and one will get BRE, the other won't. There are no outlying causes of BRE, such as genetics or environment, computer usage, television viewing, or nutrition. Nothing. It comes or it doesn't. You got it or you don't.
He did say that he doesn't feel Alison needs any medicine at this time, and probably never will. The brain, that tricky tricky organ, is still a mystery to medical science. He of course cannot guarantee anything, but did tell us we should just treat her as normally as ever and let her do all the things she currently does. He said he's personally diagnosed over 500 kids in his career with BRE, and they all grow out of it and are fine. It's commonly called an Elementary Epilepsy, because it comes and goes while the child is grade school age. We are hoping since she was diagnosed with this when she was four, it will all be a memory by the time she goes into first grade.
He ended our appointment by saying, "If she has to have something, this is the thing to have. And if you have to see somebody, I'm the guy you wanna see. Alison will be able to fire me in two years because she won't need me anymore." That was comforting, let me tell you. It took a few days for us to wrap our heads around the possibility that Ali could have more seizures, even graduating into a grand mal one day, but in all? I have to say the overriding emotion I felt was gratitude. Thanksgiving. Joy.
Why, you ask? Because for the past eight days, I thought my girl could have a tumor. When the MRI came back negative for that, I thought it was possibly another type of cancer. Or a mental disorder. Something Big and Scary that would forever change Alison's life. Or end her life completely. Take her away from us permanently. And that, my friends, I just could not accept.
So BRE is not the best diagnosis in the world, but it's not a death sentence. It just means that we keep an eye on her, and anyone who babysits her has to also. But then again, have you met my daughter? You gotta keep a close eye on her anyway. Or she shows up in the bathroom while I'm getting out of the shower to show me she got her own snack all by herseff. Cool Whip and a great big spoon.
Yeah, she definitely needs an eye kept on her.