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.

 

 

 

April 15th 2013

April 15th 2013- Chris and I were huddled together around Maddies hospital crib watching her have a long seizure.  We had pushed the button to let the nurses know. Before we knew it the room was filled with 10-15 medical staff looking at our family. The doctor gave us the news that the MRI of her brain had come back with multiple tumors. Her diagnosis of Tuberous Sclerosis was slapped on her chart. We felt as though life had been sucked right out of us. Our baby girl had tumors on her brain and heart, and was having one of the worst types of seizures. The world was crashing down around us. After Chris and I looked up from holding each other, a peace came over me. All the prayers for Maddie had filled that cold, dark hospital room. We fixed our eyes on our faith and told each other we WOULD get through this. This would not define our family or change our love for each other or our precious daughter. Later on that day we heard the awful news of the Boston Marathon bombing, Chris called his family and friends to make sure everyone was safe. We had a friend who was in a restaurant right where the bomb went off, but thankfully he was ok. After some time went by the doctor decided to start her on her first big dose of seizure medicine (phenobarb) and we were told she would be somewhat zonked out the rest of the day. After some quiet time in her hospital room our parents urged us to step out of the hospital and get a bite to eat. I really didn't want to leave but the past 3 days had left us exhausted, hungry and needing a small breather. We finally gave in and went to a restaurant just a few blocks away from the hospital. It was at that point, while we were waiting on our food, that I remembered it was our 5 year anniversary. We talked about it briefly over dinner and while watching the news about the bombing. Too much bad was surrounding us. We didnt have enough energy in us to think of celebrating. The next few days she was monitored and finally sent home. The ride home was a very quiet one. I was scared, could I take care of her, did I have enough strength to watch her have these seizures? I questioned myself the entire ride home. About 15 mintues away from home Chris turned on the radio to take away from the deafening silence. It was then that we heard Jason Mraz song come on. The lyrics brought tears to our eyes....we just looked at each other and instantly grabbed each other hands, while the song played. (see the video below)

 

 

We were broken, scared, sad and lost. But one thing that you could not call us was hopeless. Our Hope and Faith in God had not been taken away by her diagnosis. We both spent many hours on our knees praying for answers, praying for wisdom, praying for strength and for MIRACLES. And he heard our cries. He has shown us His hand at work in Madilyn's life. He has given us strength when we didn't think we had any left. He did not turn his back on us when we were defeated. He lifted us up and sent family and friends to help carry us through this past year.

Things happen in life that dont make sense. Thanks happen that leave you broken and leave you scrambling to put the pieces back together. But remember that you aren't alone. God so badly wants to take those bad things and turn them into good. He wants to show us miracles. He wants us to feel His eternal love. We just have to give him the opportunity to do so.

I am so beyond thankful for this past year. I have seen God work in our lives like never before. I will continue to let God lead our family and I will pray that though whatever comes our way, that our actions and words will Glorify Him.

And though she be little, she is fierce

Yesterday we headed to Tulsa for Madilyn's preop visit, for her upcoming sedated MRI. Although we knew it would be a pretty easy visit, I still had a few stomach drops on our way there. It's almost impossible not to think of last years trip up to the children's hospital. Of course Maddie had not a worry in the world. She sat in her chariot, (car seat) and pointed forward we go!

I know we all experience lessons that are taught by our children. But I can't believe all that I've learned from Maddie within only 17 months. She has taught us about strength, hope, happiness and how to have the courage of a baby, which until recently, I wouldn't have thought that courage would be more than a grown adult. 

Although I know she probably doesn't remember a whole lot of last year, I do know that she knows what a doctors office is, and what usually happens when we go to 1 of the 6 doctors she sees. She knows that it's time for her to be poked around on and machines hooked up to her. And yet when walking into that big, Goliath like children's hospital, she held onto her daddy's hand and marched forward. I walked behind them while I was trying to get all our paperwork together, and her bag full of goodies, and being some what worried that I forgot something or that we were going to be late. My head was filled with the worry and anxiety of the day. Once I felt I had everything I looked up to them ahead of me. And there she was, ready to take on whatever the day brought. She had faith and courage like David. It didn't matter how big the hospital was, or how big this disease is she was marching forward, not thinking of the past. Only thinking of today.  

Philippians 3:13-14

13 Brothers and sisters, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, 14 I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.

Madilyn is teaching me that although the past is very real, I need to stop dwelling on it. I need to not forget the prize that lies ahead. I need to have strength, courage, and faith and know that whatever is ahead of us is the plan that God has for our family. I do believe that we are on this path for a reason and I pray that  we can Glorify His name in all we do. The fear of the past will hold me back from this. So I'm letting go and marching forward to the race He has set before me. It just took a little 17 month old girl to teach me that... 

Facing tough decisions

As April and May quickly approach, my mind goes back to the day our lives changed. Since April 15th, 2013 are minds have been filled with, tumors, seizure meds, developmental therapist, multiple doctors and testings, and many more scary thoughts. Along with those, we have had many happy thoughts as well, Like how well Madilyn has responded to medicine and how thankful we are that her development has stayed on track.

As we come up to a year since her diagnosis, I am so thankful to say, Madilyn has been seizure free for 11 months! And just as we almost hit a year of seizure freedom, we are thrown with the idea of having to wean her off of the medicine that has kept the life threatening seizures away. Every time I think of this new decision we have facing us, my heart plummets to the ground. You know, that empty feeling? That feeling that makes you sick, and then some of your limbs start to tingle?? Well that's what I'm feeling. I try to be very positive and strong when it comes to Madilyn's fight with TSC, because truthfully God has given us a lot to be thankful for. But with that being said, I'm scared right now. I said it... I am scared.

The thought of taking her off anti-seizure medicine scares me to death. This is the medicine that has allowed her to not fight with seizures, it's the medicine that has allowed her to continue developing like she should. You're probably thinking, why in the world we would take her off of it?? Well here's the other scary part. The medicine she is on, can cause peripheral vision loss. It isn't necessarily meant for long term use. Both her TS Neurologist and primary Neurologist agree we need to wean her off of it since the hypsarrhythmia is gone. So in ways this is a big milestone, because she no longer has IS!! Praise God!! But in the same sense we are having to face the fact that she will forever be at high risk for seizures, because of her diagnosis of TSC. 

Currently she is still having abnormal brain activity in her right frontal lobe. This means that the potential for seizures are high. So we are faced with having to make another scary decision. The first option is we wean her off of her current med and put her on another seizure med. The second option is to wean her off of the current med and wait and see what happens. Obviously, I'd rather have her med free, but I'm scared to death to make that decision and then have her start seizing and risk her going backwards. I am terrified to see her have a seizure. The thought brings me to tears. When I sit down and think about it, it seems so unfair to have to make such a hard decision. I don't want to be at this cross point. I don't want to face this next phase of her health. I want someone else to do this....

And then, that's where it clicks. I don't have to make this decision alone. I have someone to lean on. The One who has carried us along this far. The One who stopped her seizures after only 2 weeks. The One who has allowed us to see miracles. I have Him. And then those feelings of sadness, anxiety, and fear, go away. I know that He will guide us in this new decision and allow us to feel at peace. I know that no matter what Madilyn's future is, He will be there. He has brought us so far, that I will not push Him away now. 

So here is where I need your help. We have seen God answer so many prayers in our life, I know he won't stop now. Will you please pray for our family as we face this big decision. Will you pray that when she goes back that any abnormal activity is completly GONE.. Will you pray that we, as a family, will open our eyes and hearts to see His will. 

We have a few trying months ahead, but I know with all of us praying we WILL get through this, just like we did in the beginning. You all have been on this journey with us from the beginning and have been praying for our family from the start. I'm humbly asking that you please continue to do so. Our prayers have been answered, and I know that He has heard our cries. We have seen it first hand in Madilyn.

I'm so thankful I can come to you all with these requests and feel confident that we will be covered in prayer. You all have been such a great support group, by praying, giving us encouraging words, and helping us in our awareness efforts. We feel like our family grew by hundreds when all this happened. Thank you for being such a huge part of our life. We will never be able to thank you all enough. 

Mark 11:24

Therefore, I tell you, whatever you ask in prayer, believe that you have received it, and it will be yours.