Tag Archives: Oklahoma

Our happily ever after felt as if it was being taken away from us.

Second Annual “Blogging for TSC Awareness Month” Day 13

by guest blogger Heather Lens   (Stilwell, Oklahoma)

Madilyn Rae Lens, was born on October 19th, 2012. She was born a perfectly healthy little girl. She was a dream come true! We had no reason to believe 1234820_4656475948570_2025514539_nthat she would be anything but healthy as she hit milestones in her first 5 months of life.

All of those thoughts changed when at 5 1/2 months old she started doing a weird twitch with her arms. I was feeding her and she kept throwing her arms in the air. My mommy instincts went off immediately. Deep down inside I knew something was wrong. Nothing she was doing looked like a seizure to me, but for some reason my mind kept going back to wondering if it was a seizure. After a day of seeing light twitches I took her to her pediatricians office. Unfortunately, her pediatrician wasn’t there so we had to see another provider there. He told me he didn’t think it was anything other than motor reflexes but he would refer us to a neurologist to calm my fears. I left his office that day full of mixed emotions. I was happy that the doctor said it was probably nothing but still had a gut feeling that he was missing something. I had been around my siblings when they were infants and I didn’t ever remember seeing anything like this. I cried the entire way home at the thought of waiting 2-3 weeks for the referral. How could I wait that long for answers? I called my husband and told him something wasn’t right. He immediately left the fire station and came home. That night I consulted the lovely library of Google. Everything I looked at said the term Infantile Spasms. I was sick after reading information about this catastrophic type of seizures. I knew that this is what she had. I cried and told my husband about it and he agreed we would take her to a children’s hospital first thing in the morning. I didn’t sleep a wink that night. My mind was going in all directions. The  next morning, while I was getting her ready to leave for the hospital, she had one of the most intense episodes. Her eyes started rolling up and she would cry like she was in pain. We loaded up and headed for the hospital which was two hours away. The car was silent the entire way. I was able to catch a few of her twitching episodes on the way to the hospital . We got to the ER and we were immediately admitted after the ER doctor saw a video of the seizure. Still at this point no one was calling it a seizure they were calling them muscle spasms, which gave me a false hope that maybe it was nothing.

558704_10100447182455011_1003519270_nAfter being admitted she was put through a million tests, blood, urine, MRI, EEG, EKG and probably more that I 10307367_10200927489788174_5094866193832748621_ndon’t recall now. After her first EEG it was confirmed that our perfectly healthy little girl was having Infantile Spasms and if we didn’t get them under control immediately it could lead to mental retardation. Those words hit me like a ton of bricks. We were devastated and couldn’t seem to figure out how she could have such an awful type seizure when she had been healthy up until now. After they explained her diagnosis of IS they said they also needed to rule out a rare genetic disorder that can sometimes coexist with IS. They were going to check to see if any of her organs were “marked” with a disease called tuberous sclerosis. I remember being 100% confident that they were wasting their time looking for this rare disease. They already told us she had IS, it couldn’t get worse than that. I recall my mom and husband trying to find information regarding TSC online and I got a little angry at them. I didn’t know why they were wasting their time looking at it because she simply could not have a rare genetic disease along with these seizures. I have no doubt that I was going through denial at that point.

The next day we got the heart wrenching news that she in fact had tumors on her brain and heart. She showed enough signs that she did have TSC. My heart broke into a million pieces that day. At one point I do remember feeling as though life was over. I was terrified of our daughters future. All of the things I had envisioned for my daughter was suddenly ripped out of my hands. We were told that she would be delayed, she may need brain surgery, she may never be able to live an independent life. She may never walk, talk, feed herself. It was all doom and gloom. Our happily ever after felt as if it was being taken away from us.

We left the hospital a few days later and were as well equipped as possible for her new type of care. After two days of taking Sabril her IS disappeared! And 1382781_4821538395028_1044385447_nabout a month of being on Sabril we started to see her personality shine through. Although we still had the fear of this disease. she was showing us signs of hope! We waited and watched her like a hawk, anticipating the next seizure.

Fast forward a year. We haven’t seen a seizure since April 26th 2013. We also have been beyond blessed that all those frightening things we were preparing for have not shown themselves. Madilyn is currently on track with her development and is a month away from starting the weaning process.

The past year has been such a whirlwind. Our emotions have been scattered all over the place. Thankfully we have outstanding family members and community that have helped us move forward with life, and have taken on our cause as well. We have seen an overwhelming amount of support for Madilyn and our family. Without the support and our faith we would be lost. I am so beyond thankful for this past year. She has shown me what it means to have courage and strength. She doesn’t stop fighting for one second, which means I wont stop fighting for her either. She is my little fighter, and my constant reminder of true love.

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Check out Heather’s blog Life with My Princess and her contribution to this blog for 2013’s TSC Awareness Month.

Diagnosed With TSC Less than a Month Ago

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 Heather's familyhonestly 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