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.

Infantile Spasms- Epilepsy Awareness

I wanted to write a post about the type of Epilepsy Maddie was diagnosed with. I know you're thinking this sounds like a very boring post, and you still may feel that way at the end. But I urge you to stick with me, you could be a big help to someone by learning some info about Infantile Spasms.

First, let me say that I absolutely hate that they are called spasms, because that does not relate to how bad these seizures are for children. Spasms sound harmless and IS (Infantile Spasms) are everything but, harmless. They get the spasms name because they appear to be a body spasm. Maddie's IS represented itself by her arms flying above her head and her eyes floating up with each spasm. These spasms happen in clusters, that last anywhere from 2-3 minutes. So they can have close to a hundred seizures in this one cluster. While Maddie was in the hospital she had a cluster that lasted 9 minutes, I can't count how many seizures she had it that one set.

When she first started the movements it looked like a motor reflex. It wasn't her violently shaking, it was very suttle. I noticed that they would happen when she was tired, or waking up from a nap. As the days went on, the spasms were more profound and she would cry and grunt while having them. At this point we were already in the hospital.

The worst part of IS is the awful affects it can have on their brain. Infantile spasm are defined as a, catastrophic type of Epilepsy. Not just a little "spasm" of the brain. IS usually starts to show it's ugly face around 4-8 months. Madilyn was 5 1/2 months old. 

They confirmed her diagnosis of IS by doing an EEG, which measures the brain frequencies. Her EEG showed a pattern that told them she did have IS. When were told the news we had no clue what this was. They gave us information on it and we did our own research as well. Not until a day later did we also get her TSC diagnosis.

These are some of the facts we were given when she was diagnosed. 

Our daughter would more than likely be challenged with normal milestones. Only 1/4 of children with IS will have a "reasonably favorable outcome". The other 3/4 are expected to have severe delays. We heard the word mental retardation numerous times during her hospital stay. (I hate that word and now have witnessed how hurtful it can be.) The estimated mortality rate by age 3 was 6%-33%. 

Those are just a few of the things we heard. 

The reason I am even going over all this is because many times IS can go undiagnosed, because it's very rare. We had a pediatrician not diagnose Maddie because he didn't even think about IS. He sent me home with Maddie saying he would refer her to a neurologist but he didn't think it was anything. Thankfully, I trusted my gut and we took her to a children's hospital. The quicker these seizures are under control, the better. Maddie had her seizures under control within 10 days of the first spasm. This is not always the case, there are some who never get full control of the seizures. We were very fortunate to have a Neuroloigst who diagnosed her quickly and helped us pick out a treatment plan. Because she also has TSC, our best option was Sabril. Unfortunately, this medicine also has a side effect of possible peripheral vision loss. Our options were small and we had to be quick. Every spasms she had was taking away something from her. 

Awareness is needed for Infantile spasms. If a doctor can't even see the possibility of these very damaging seizures, how should a parent know?! I hope you will take the time to make yourself aware of this very rare and damaging type of seizure. You could be the key to someone's baby getting diagnosed quickly. 

For those of you who stuck around, thank you. I know it's not an exciting topic, but it's one that means a lot to our family. Don't forget to wear your purple tomorrow to show your support for those fighting with all types of Epilepsy.

Gearing up for TS Awareness Month

This year we are very happy to be a part of our 2nd TS awareness month. Maddie received her diagnosis in April, so we were thrown into May with not a whole lot of knowledge, except for the fact that we wanted a CURE! We were so blown away by all of those who wore blue on the 15th! I remember that day so clearly. I thought a few people may post their blue picture, but we had close to a hundred families proudly wearing blue for Maddie. My emotions were still very raw, and the support we got was overwhelming. I cried tears of joy that day as I realized that we would not be fighting this disease alone. With it being such a rare disease we did feel alone and her future was clouded with the ugly facts of TSC. Those of you who participated in wearing blue will never know how much that meant to our family. It gave us a boost, when we were very down. I better move away from last year or I may never stop crying....:)

So what this post is actually about is to let you all know what are goals are for this years TS Awareness month. we are hoping to reach double the amount of people we did last year. We want to spread Awareness to those who have never heard of Tuberous Sclerosis Complex. Another goal is to be able to send $3,000 to the TS Alliance! We have tripled our goal from what we raised last year. This is a very big goal but I believe we can reach it. You may ask, how are you going to raise that much money? 

Well I'd be happy to answer that :)

-We will be selling Team Maddie shirts for $10. We had a very generous local t-shirt shop donate the screen print and they have given us a good deal on shirts. Shirt orders can be taken now. I will post a more about this on my Facebook.The shirts should be in by the last week of April. All proceeds of the shirts will go towards our goal.

-Team Maddie bracelets have been ordered and will arrive the first week of April. They will be $2 and all proceeds will go to our goal.

-We are asking local businesses and families for donations such as; gift certificates, merchandise, services, and cash, to put together several gift baskets. We will be selling raffle tickets during the Strawberry Festival and all money from the raffle will go towards our goal.

-We will have an TSC informational booth at the festival where we will be handing out info about TSC, selling the raffles, and also selling bottled water. We already have one local grocery store who has donated a few cases of water. Once again all money will be put towards our goal.

-Last year we had very generous donations made to our TS fundraiser website. We will have that up and running for those of you who would like to contribute in that way. 

As you can see, we have several ways to raise money for a CURE! We are very eager to be able to bring awareness to this very rare disease to our community.

When Maddie was diagnosed my way of coping was to learn as much as I could, and get involved with raising awareness. I wasn't going to let this disease take over our life. We were going to be in control of how we handled this, we knew in order for that to happen we were going to have to lean on God, the only solid thing we had. There have been many tears shed, but He has always been there to lift us back up. We pray that the funds we are raising will be blessed by Him. We so badly want a cure for our daughter and the others who are fighting this disease. The TSC motto is so fitting for our family...."We will give everything but up!"

Please know that our family is beyond thankful for the love, prayers, and support we have received since Maddie's diagnosis. You all have done more for our family than we could have ever imagined. It's humbling to see how you all have so graciously given to our cause.

Tuberous Sclerosis Complex has nothing on Maddie, our family and friends, or our community. We will bravely fight and win the battle against this disease!!

Maddie proudly wearing her TSC shirt last May.

Maddie being part of the "where in the world is TSC" campaign last year

Maddie giving me much needed kisses during her stay in the hospital when she was diagnosed with IS and TSC. 

Chris rocking Maddie to sleep during her hospital stay.

 

Transformation

I decided to come take a look at my blog tonight and decided it needed some updating. When I first started this blog it was my idea to journal my experiences of being pregnant. I posted pics of the bump, now know as Madilyn, and wrote about the joys of being pregnant. Well not all posts were joyful, but most were.  I honestly didn't know what I would do with the blog after she graced us with her presence. I certainly didn't think It would become a blog to keep family and friends updated on Maddie's journey with TSC. I didn't think it would be a place where I would write about my greatest fears and my biggest hopes. I had no clue that it would become a place where I could look back in previous posts and be able to learn something from that moment.

My life has undergone a huge transformation in the last few years. I went from being a newly married wife, to an expecting mother, to a mother, and now a mother to a child with health problems. And throw in me becoming a stay at home mom as well. My life has certainly gone through a transformation, just like my blog shows. Although at times I do hope that my experiences can bring hope to someone, I have recently decided that this blog has been most helpful to me. If someone can take something positive from my blog then that is just an added bonus.

So with all that being said, I have changed my blog title to-Life with my Princess. It's a little more fitting for this time. Who knows... In a year a two it could be something totally different. :) That's the beauty in life, it's always changing and transforming.

A year past...

Today was Rare Disease Awareness day. A year ago, I would have no clue about this special day. It's crazy when I think about where my life was a year ago...

This time last year, I was battling the idea of spending only 2-3 hours with my daughter each day. I would pick her up after work and would instantly feel guilt. I hated being away from her all day and was even jealous of my husband, who stayed home with her on his off days. It didn't help that she had a lot of ear infections and the dreaded RSV. We were at the doctors office every other week with a new ear infection and yet another dose of antibiotics. I was being torn between giving my best at work, and giving my best to my newly born daughter. I loved my job, and the people I worked with had become very close friends. They were there through my somewhat difficult pregnancy, and picked up the slack when I was out, before and after my maternity leave. It wasn't that I didn't like my job, I just couldn't stand being away from Madilyn. So after many tears and discussions, Chris told me that if we could get a few financial things under control, then I could leave work and stay home with her. That was the best news I had ever heard. We waited until March and then those financial things finally happened and I put in my notice. The day I told my boss and co-worker was a tear filled day. These ladies had been through it all with me. They were more then just coworkers, they were like family. I knew they would be upset, but they both understood. Such a weight was lifted off my shoulders once I was home with Madilyn. I had time with my daughter and was able to be around my husband more often. I was so thankful that God had provided for my family so that I was able to to stay home. I was also so thankful to have such a supportive husband, who was willing to take on the burden of being the sole provider.

 

Little did we know, just a few weeks later, we would be in the hospital watching our daughter have seizures and multiple invasive tests done. We thought all along that we were making these decisions so that I could be a stay at home mom. Little did we know that God was actually preparing us for a life changing event. I can't imagine if I had still been at work when Madilyn was hospitalized. The pressure would have been enormous. God knew that I would need to be able to focus on my daughter and family. And He provided that blessing. He knew all along what he was doing, even as we questioned the decision of me staying home. 

Now I sit on this side, a year past, and I can't believe how naive I was to childhood illnesses. Like I said before, I had no clue of Rare Disease Day. We were busy making decisions on me staying home with my healthy baby, not busy reading up on rare diseases, like Tuberous Sclerosis Complex. Our life has changed, but thankfully, our God has not. He is still guiding us through life and letting us enjoy a huge blessing, that we call, Madilyn. 

Here's to us being a part of our first Rare Disease Arareness day!

We care about rare!!