No “Big Brother” for Lola

With November being National Epilepsy Awareness Month, it seems almost eerily fitting that Lola would have her 24 Video EEG (VEEG) this past Wednesday. While seizures will always be branded in my worried mind because of the severity they had on Lola’s delicate infant brain when she was just under four months old, I don’t think of them as much these days. It has been a very long time since Lola had her last seizure cluster (one tiny cluster in October 2011 and other than that not a single one since she finished her emergency Prednisone doses back in May 2011). Ask anyone close to me and they’ll tell you I am still hypersensitive to seizures and will often ask my husband if certain movements Lola does look like seizure activity. But the anti-seizure medication Lola continues to take seems to have helped subside them which is why Lola’s neurologist, Dr. Zimmer suggested Lola have a 24 hour VEEG to determine if Lola was showing any signs of seizure activity while in her natural state (meaning with no sleep medications).

Surprisingly, I wasn’t that nervous leading up to Wednesday as I haven’t noticed any abnormal seizure behavior. Rob and I both discussed the best case scenario (no seizures meaning a wean off the Trileptal) as well as the worst (seizure activity – probably try different meds to manage them). I think my biggest fear was having my sensory sensitive toddler’s head with glued on electrodes covered by a hat attached to a bunch of wires for 24 hours confined to a tiny hospital room. And did I mention we were being watched as well?

On Wednesday morning, we got Lola all checked in and we headed up to her room. We were told the worst part would be holding her down to get the electrodes glued to her head and the tech was absolutely right…it was awful to witness. It wasn’t the gluing of the electrodes but holding Lola down and not being able to explain why we were restraining her just absolutely broke my heart. She kept looking at me with tiny tears in her eyes almost begging for answers as to what was going on. As the tears welled up in my own eyes, I quickly pulled myself together as that’s what mama’s do in situations like this. Our fragile kids look for our assurance that everything will be alright so I wasn’t about to show Lola that I, too, was scared for her. But our girl handled the applying of the electrodes like a champ and even the tech commented on how well Lola did. We were told our most important job was not to let her pull the hat and electrodes off, to make sure she stays in view of the camera and to hit the black button if we saw any suspicious behavior.

Thankfully IU North which houses a branch of Riley Children’s Hospital basically rolled out the red carpet for Lola as their service was top-notch. We were immediately shown Lola’s hospital room which included a crib, an amazing lightbox, TV, DVD player, refrigerator, full bath, pull out futon bed, rocking chair and much more. Right across the hall there was a play room filled with every toy imaginable, books galore, music CD’s, games and a full DVD library with hundreds of titles to choose from. I brought a few toys for Lola to play with, but immediately put those away when I saw all the fun choices she had. Unfortunately, Lola couldn’t leave the room so I got to be the kid and continuously check out the inventory to keep my girl occupied.

Rob was in and out throughout the day as he had much to catch up on at home and there wasn’t much to be done at the hospital other than keep Lola entertained and happy. Lola was given a meal of her choice (my choice for her) and let me say…sister was eating good! She had everything from Salmon in a Plum Chipotle Sauce to homemade mashed potatoes, fresh green beans, an omelette, homemade pancakes, darn good snickerdoodles and much much more. I couldn’t help but steal a bite or two because the amount given was just too much for a toddler *wink wink*. Shockingly, I managed to get her down for a nap a couple of times as I think all of the unwanted excitement was too much for her. I tried to make it as much like her own bed which meant she had to have her blankie as well as George, her giraffe.

I would say overall, she did quite well given the circumstances. Anytime the door would open, she would make a b-line to exit which in turn would cause the neurotechnicians from a neighboring hospital (where Lola was being recorded and watched) to call and tell me to put her back in the camera’s view. A few times I messed with them moving an inch here or a few feet there just to watch them scramble to find her. I know it’s their job, but there is something quite eerie about having a camera follow you around. I learned I would not be trying out for a Big Brother type reality show anytime soon. At one point on Wednesday night, Lola was having a hard time falling asleep so I snagged her up and put her in the futon bed with me only to watch the camera find us and zoom in. I know they were following her every move in an effort to see what caused certain brain activity, but it was kind of creepy too. We were warned to watch what we say and what we do as they have heard and witnessed some crazy things. I made sure not to pick my nose, fart or talk dirty to my husband (even though I would never do any of those things anyway *wink again*).

After a sleepless night for yours truly (I had fears of Lola taking the electrodes off or worse yet getting strangled by all of the cords), I was more than ready to leave on Thursday morning. Lola seemed as if she was beginning to get used to the electrodes although she began to itch her head like crazy which was a clear sign of her wish to have them off. She ate a nice big breakfast just as Rob arrived to pick us up. Taking the electrodes off proved to be much easier than putting them on although she still screamed as they pulled her delicate hair. It was at this time that I finally began to shed some of my own tears. I think the reality of the situation began to sink in. We were in a hospital for our little girl who all in all looks to be quite healthy, but there is still something in that little brain of hers that we can’t figure out. You forget that she has a neurological condition at all because her quirks are just what have become normal to us. The medication, therapies, doctor appointments and undiagnosed delays are what we know. We’re lucky we haven’t spent countless hours in and out the hospital and we’re blessed that we do not have a child with a life threatening illness, but there is still something very heart-wrenching about being in the hospital with your child…for whatever reason it may be.

So while I managed to stay strong for 21 of the 24 hours, I let myself weep a few worried tears as I didn’t know what all of the squiggly lines on the damn EEG machine meant. I sat there and watched them go up and down for 24 hours and no one could even clue me in on what was going on in my kids brain. I tried to sneak a few answers out of nurses and pediatricians, but they weren’t qualified to say what they were seeing, so patience had to kick in yet again. I sit here worrying about the results even now. I like to hope that everything will come back normal and my God have I been praying for it, but I also have to be realistic and not set my self up for disappointment. If Lola was having seizures that were detrimental to her brain while she was in the hospital than we were told “without a doubt there will be intervention”. So the fact that a team of doctors didn’t rush in to begin a med regime is a good sign to me. And if she just so happens to be having seizures, well, then we’ll keep her moving forward just like we always have.

Epilepsy will not define our little girl.

Crazy post-EEG hair!

The Therapy Dog

We should know the results by the beginning of the week so your continuous healing prayers are welcomed and much appreciated. Thank you for all of your support!

The Epilepsy Foundation is having a “What I Know” campaign in order to help raise awareness about epilepsy. To find out more about submitting a video, finding your local Epilepsy Foundation or if you are just curious about epilepsy in general then please vist their website:

http://www.epilepsyfoundation.org/

And for those of you that missed it on Facebook, here was the coolest Halloween spider!

That is the Governor of Indiana as “Sonny”! He sang The Kinks song, “Lola” to her!