Day 5 of Guest Blogging for TSC Awareness Month

By guest blogger Heather Lens (Stillwell, Oklahoma)

I’m not sure where to begin except right here…

Our world forever changed on April 13, 2013. It actually kind of started the Wednesday before, right before church. I was feeding Maddie and she kind of had a twitch, but it honestly didn’t look like anything more than that. By Friday I started noticing a small trend. She was twitching when she was getting tired so I went straight to the pediatrician. They were going to refer us to a pediatric neurologist in Tulsa for an EEG to rule out seizures. It was going to take a week to get into them. At the time it seemed like a good thing…If they aren’t getting us in that day it must not be anything too bad. Once again, they weren’t crazy seizure like activities.

By Friday night, Chris and I had noticed these movements were looking worse and her face was making different movements that we did not like. Saturday morning we headed straight to St. Francis Pediatric Trauma Center. It’s the nearest children’s hospital to us. We figured that they would be the best place to go if something was wrong, since it was a children’s center. They quickly got us admitted after seeing a video of one of her episodes, and that’s where everything went a little blurry. The first round of testing began… They drew blood to check her blood levels. They were thinking her potassium, electrolytes or sodium may have been off which could cause seizures. They then did a 20-minute EEG. Maddie did great with the test. She laid there like a champ as they hooked her up to 30 or so electrodes. I think Chris and I were hurting worse at that point. Seeing your beautiful perfect daughter hooked up is an awful feeling. Later on that day the doctor came in and broke the first part of our not so great news. Her EEG was abnormal and they confirmed that she had a diagnosis of infantile spasms which are caused by hypsarrhythmia. It’s where the brain sends of chaotic brain signals. Even though we thought something may be wrong, the news hit us like a ton of bricks. They were going to need to put on a EEG for 24 hours and monitor her by video as well.

The placement of the 24-hour EEG was the worst thing I have ever been through. Maddie was screaming, and Chris and I could only sit there and look at her while she was in such distress. It was the most helpless feeling ever. She ended up being on the EEG for over 30 hours. On the third day of our hospital stay they were going to do an ultrasound on her kidneys and abdomen to look for tumors that could be caused by a disease called tuberous sclerosis. They said that some babies who have IS can also have tuberous sclerosis. They also wanted to do an MRI to take a look at her brain. After finally getting the 24-hour EEG off, they took her back for her MRI, which was under sedation. It was another experience that no one should have to go through. She screamed as they sedated her and was fighting sleep so bad. She finally gave in and they took her limp body back to the room. My husband and I both broke down. Watching our perfect little girl look so lifeless was absolutely heartbreaking. We later got the results back from the ultrasound that there were no tumors on her ultrasound and we were thrilled! We just knew her MRI would come back clean. Unfortunately, we were wrong. The MRI came back with tumors on it. This news was the most devastating news our ears could hear…We looked down at our baby girl with tear-filled eyes. We didn’t understand how this could be happening to her and our family? She has been healthy and had been hitting her milestones. How on earth could this be real? After emotions of hurt, sadness, guilt and many more, we felt the prayers and realized that these conditions just make our precious girl that much more precious. We let it all out and then turned our eyes to the only one who can comfort us, God. We knew that we had been put in a crazy spot for a reason. God had entrusted Chris and I to take care of this precious girl because He KNEW THAT WE COULD DO IT. What an honor to be her parents! We know we have a lot of work ahead of us.There will be a trial of medicines to try and stop these spasms, and unfortunately TSC will be a condition she lives with. That being said, we know some people live a normal life with this disease. We are hoping for that, but will not be discouraged if that isn’t her path. We will change our normal and make it a new normal. I dislike the word normal anyway…Who wants to be normal? Not Miss Maddie!

“Whenever God gives you a gift, he wraps it up in a problem. The bigger the gift you have coming, the bigger problem you will receive. But the wonderful thing is that if you look for the gift, you will always find it.”

Please check out Heather’s blog at www.chrisandheatherplusone.blogspot.com

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