Finally slowing down

I have tried to write this blog for a week now and things have just been so busy. The work that went into our TSC fundraiser was crazy!! I had no clue how many hours would go into all the planning. I am so thankful family and friends chipped in and picked up all the pieces that I missed. I feel like our team really pulled together and we did it! Our goal of $3,000 was met. The amount of support from family, friends, our community and local businesses was absolutely amazing. It's humbling to see how many people love our Maddie. I can't wait to show her over the years how many of you have supported her/us and have taken on her cause. It's such a blessing to have a great support group. Team Maddie absolutely rocks!!

So now that things are slowing down...a bit... We are focusing on our trip to the TSC world conference! I can't wait to meet these families that I have become so close with over this past year. It's like we have a second set of family with our TSC community.  It's going to be so great to learn more, make new friends, and connect with those I've spoke with online. I'm also extremely excited to be in Washington D.C. over the 4th of July weekend. How cool will that be?!? We plan to make it a family vacation to remember. Chris and I both have traveled there before, but never as a family. It's going to be great trip with tons of memories to make. Thanks to our awesome community for raising money for us to go! We are such a blessed family!

We thank you all for your love, encouragement, and prayers. They are what keeps our family moving along. 

As always, please continue to pray for our Maddie. Her disease is so complex so please pray for complete healing! 

We love you all!!

Normal

Normal. Not a word that I have ever really put much thought in. A couple of years ago the word normal would probably have had a meaning of, average, lacking excitement, maybe even ordinary. Hearing the word normal wouldn't have brought me to tears or caused my heart to skip a beat. 

Last Thursday we took Maddie to her neurologist for a routine EEG. This appointment had weighed heavy on my heart since January when he first talked about weaning her off Sabril. Although her IS was gone she was still having an abnormal EEG reading. He told us back then that it was very common for TSC patients to always have abnormal readings due to the diagnosis. We knew that to be true but still couldn't come to terms with that possibility. So the day before our appointment I had written a blog post about our concerns and fears. I asked all of you to please lift us up in prayer. We were praying hard for a normal EGG in a world where that wasn't always the outcome.

The day started off with the EEG. It was absolutely a nightmare. Maddie was terrified while we had to restrain her from ripping off the leads on her head. We tired everything to calm her down and nothing was working. I was laying bedside her in the bed and Chris was on the other side holding her down. She was screaming momma and dadda with the most helpless look on her face. In that moment I got angry. The peace that I had felt before the appointment had quickly faded away. I was looking into the eyes of my daughter, trying with everything I had not to cry or to look scared. I didn't want her to see those feelings in me. I wanted to be strong for her. What I really wanted to do was pick her up off  of that hospital bed and go running out of the office. I wanted to rescue her from this testing, from this day, from this disease. As a knot formed in my throat I went to a place that I haven't been in awhile. I was shaking I was so mad. I was mad that my sweet, innocent daughter was being put through this. I was mad that this is where life had brought us. I was mad at the nurse because she was going to slow. Could she not see how distraught we all were?! I was so mad at the disease. I kept saying in my head. I HATE TSC!!! 

My thoughts went back to the day when Maddie was in the hospital and they were putting on the 24 hour V-EEG. Maddie was so tired and scared and having seizure after seizure. After about 10 minutes of her screaming my heart just couldn't take it. I bolted out of her room, tripping on every wire around me and crying uncontrollably. I remember falling down to the floor, in the hospital hallway, sobbing, "I can't do this...I can't handle this, I don't want this." 

In that moment, of almost going back to that place of hopelessness, I snapped out of it. I am almost certain that prayers were being said for me in that moment. I knew that regardless of what I was feeling, this was our life. More importantly our life was filled with far more than just this moment. We get to live a very normal life with our daughter. We get to see her walk, talk, make messes and enjoy her spunkiness. This moment was just a small part of our lives. I had to get through it, just like Maddie had to have the test.

Finally the nurse had finished. We finally were able to calm Maddie down as we passed the time with singing, telling stories, and making animals noises. She had gained our trust back and let us love on her until it was time to take the EEG off. Thankfully taking it off is much easier than putting them on. My heart was so relieved when we walked out of the office and off for a quick lunch. The hard part was over, now we just had to wait for the results.

We were the first appointment after lunch hours. They quickly brought us back to the room and told us the doctor would be in shortly. The doctor walked in the door and looked down at Maddie playing and said, "well guys she looks normal." It caught me off guard that he said it that way, but we quickly responded back with how well she was doing. He then stopped us and said, "No, her EEG is normal!"

My heart skipped a beat and tears fell down my face. It felt as if the world had been lifted off my shoulders. All I wanted to do was squeeze Maddie and Chris in my arms. I couldn't wait to leave the office so I could spread the good news!! God heard our cries and he answered our prayers!! Not just my prayers, but all the other prayers that had been lifted up for us. I felt His love and mercy flowing over us. He had shown us again, that He is all powerful. 

Thank you all for being faithful prayer warriors for our family. Our family has been touched by so many blessings and we can't thank you enough for your support and encouragement.

We love you all and can't wait to witness His continued guidance in our lives.

John 14:13-14 Whatever you ask in my name, this I will do, that the Father may be glorified in the Son. If you ask me anything in my name, I will do it

Prayers and TSC Awareness Day

So as most of you tomorrow is tuberous sclerosis awareness day. We are so excited to see everyone in their blue! Last year it was so touching to see everyone support our daughter and the others who fight TSC daily. Make sure to get your blue on tomorrow and tell someone you know about TSC. If you have any questions about the disease, please feel free to ask me.

So tomorrow it seems fitting that we would be doing TSC related appointments. We have done the MRI, so now it's time for the EEG. We will head to her neuro and have a 20 minute EEG done and then discuss how we are going to wean her from her Sabril. This is something that weighs heavy on my heart and mind. On one hand I am very excited to hopefully have her off all seizures meds! That would be an answered prayer! But on the other hand I'm scared that she may start to have seizures again. I'm also scared of how she is going to react coming off of a medicine she has been on for over a year. I know she needs to come off of it because she doesn't have the hyps. pattern anymore and she has been seizure free for over a year! PRAISE GOD! I just can't bare the thought of seeing her seize again.

We do know that due to her having TSC and the tumors on her brain, that she is high risk for seizures. Sometimes thinking of the stats of TSC just make me angry. I hate waiting around to see what part of the statists she will fall into. It can become maddening to think of the odds. I know that the statists are very real. But I also know that our God can overcome all things. I am constantly praying for healing, protection over her precious organs, and of course praying that God would completely remove the tumors. I do know there is mighty power in prayer. I have seen Him work miracles in Maddie's life.

Our preacher recently asked us a question that I don't think I have ever asked myself. He asked us, what we expect when we pray. I know several times I have prayed for something, but didn't have any expectations. Not that I didn't expect anything from God, but I didn't place any action on what God could do with that prayer. It completely opened my eyes to the limits I have put on Him. His miracles are limitless! And oh how thankful I am for that!

Let's pray with such conviction that we KNOW and EXPECT God to hear us, and to answer our prayers, even if it's not the answer we want.

Tomorrow, will you please pray that God will show us his presence throughout our day. Will you specifically pray for her EEG to be completely normal and that there will be no spikes. Will you also pray for wisdom for us and her neuro. And last but not least, will you please pray for peace. I don't want to be scared tomorrow. I don't want to be anxious. I want to feel peace with this new step. I will certainly being praying for all of these things. But how nice it would be to have you all do this for us as well. I have no doubt that our prayers will be heard.

I am so thankful I can come to you all with our prayer requests. And what a relief to know that you all will be praying for us tomorrow.

We love you all and are so thankful that God has placed you in our lives.

Love always,
Heather

Psalms 4:1

Answer me when I call to you, O my righteous God. Give me relief from my distress; be merciful to me and hear my prayer.

Our TSC Story

A fellow TSC mom posts a new TSC story on her blog everyday, for the month of May. I decided to write in to her and thought I'd share it with you all as well. Go check out all of the other touching stories at www.mixedupmommy.com

I know most of you are aware of Maddie's TSC story. But its really nice to see how far our family has come over the past year.

 

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 that 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 2 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.

 

 

After being admitted she was put through a million tests, blood, urine, MRI, EEG, EKG and probably more that I don'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 2 days of taking Sabril her IS disappeared! And about 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.