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!!

Florida Vacation 2014

Well our family vacation has come to an end and we are back home trying get back into the swing of things. We had such a wonderful time, seeing family and friends. Although, it wasn't nearly long enough. But when are vacations ever long enough?! 

This wasn't just any vacation though. Back in October, Chris' mother was down for Madilyn's birthday and mentioned that she really wanted to bring her mother down to Florida, from Germany, for her 70th birthday. It had been 8 years since Chris had seen his grandmother, and of course Maddie and I had never met her. So we immediately started looking for airfare. I somehow stumbled upon airfare for under $300 for us and we just couldn't pass it up. So we booked it without even knowing if his grandmother was going to make it down to Florida. We secretly hoped that our commitment to the trip would make all of the other plans come together. And guess what.... They did! 

I must admit I was a little nervous about meeting his grandmother. She speaks German and I had no clue what to expect. Would she understand me, would I understand her? Would I be the only person in the house to not know what was being said?! (Chris speaks some German) I was so happy to find out that all those worries were far from reality. She was so friendly and welcoming. She spoke as much English as she could and actually spoke pretty good English considering she has taught herself. She never made me feel like an outsider and made me feel like I was one of her own. Her and Maddie hit it off immediately. They played, laughed, and she even taught Maddie some German words! She cooked for us almost everyday and made the most delicious German meals you could ever imagine. That woman knows her way in a kitchen. She would cook these massively huge meals and the kitchen would be clean before we even say down to eat. I am sure she has some kind of super powers. It must be a grandmother thing...because I have a few on myside of the family that are the same way.

It was so refreshing to see and hear about other cultures. Madilyn is so blessed to be able to come from such a strong set of cultures. She has had to chance to be surrounded by some of our Cherokee heritage, but this is the first time she has been able to see Chris' side. It truly was a trip of a lifetime.

We all stayed with Alex so the house was full! We didn't have to worry about cooking, cleaning, laundry or any of our normal duties. It was amazing and what was even better is that they were happy to take over those duties. Boy was it a rude awakening coming back home!! Talk about being spoiled. 

I also got to visit with my dad and family while down. Although, this visits weren't near long enough. I was able to watch my brother, Noah, play in one of his flag football games. I can't believe he is old enough to be playing in team sports. It seems like he was just born. He was able to put on a fantastic show and even scored his first touchdown! I was a very proud sister. It really stinks that I'm not able to be around more for him. I miss out on so much with him, but I know he is in great hands with Dad, Erin and Mimi. That little boy is surrounded by love!!

I could go on and on about our adventures, but it may get boring to you ;)

I will never forget this trip and the memories we made. I will hold a very a special place in my heart for Chris' Oma. She taught me a lot over the short time we had together and I know Madilyn is missing her already. 

We are so blessed to have such a loving set of family members. They each play a very special role in our lives. We wouldn't be the family we are today without them. I am so thankful Madilyn has so many wonderful people in our families to look up to. Thank God for family!

What if...?

I've been debating on this next blog for awhile. Do I really want to share all the things that are so personal? Will people think I'm crazy for giving such personal details? Well, I finally decide that if I was afraid of sharing personal things, I probably wouldn't have opened up about everything so long ago. And I do feel these blog post to be very therapeutic. It's always eye opening to go back to old post, especially those in April, and read the words of a very heartbroken mother, and see how far we have come since then. So with that being said here we go..

I have baby fever! There, I said it. I see all these sweet babies being born and my heart is happy. Then my heart aches for the cuddling of a newborn baby. People often ask when we will give Madilyn a sister. If it were up to me she would already be a big sister. In fact, just a few weeks before Maddie was diagnosed with Tuberous Sclerosis, Chris and I had decided to start trying in August. Our hope was to be pregnant by the time Maddie turned one. The ironic thing about this whole topic is that before I met Chris, I was strongly against ever having kids. I told myself I wasn't a kid person and would NEVER be able to be a stay at home mom. I mean who in their right mind would ever want that?!....

Yeah, comical. Everything I thought I'd never want, is now something I love and wish I could have more of. I never thought that I'd want to have more children and possibly not be able to. It's not something that I ever thought I would have to battle.

What most people don't understand is that there is a chance that Chris or I could have this disorder. TSC is a disorder that affects people so differently. Some are diagnosed in-utero, some at birth, and others are in their 40's before they ever have any of the TS manifestations. Because we could have it, we have to wait for genetic testing, before we are comfortable having more children. We have also been encouraged to wait by many doctors.

When we found out that Maddie had this genetic disease we went through different emotions. One big one was guilt. Could one of us given this to our daughter? Could we live with the guilt if we did? What if we can't have more children and we leave Maddie an only child. She won't have siblings when we pass away to take care of her. Who will be there for her? You will notice a common saying in this post...What if?

Along with the hurt of wanting to have more children and thought of maybe not getting that wish, I also have a fear of getting the results. What if it's me? What if I start having seizures later on and then Chris has the responsibility of taking care of me, plus the thought of having a daughter with this disorder. It starts to make me panic. And I start trying to fix something that we don't know even know yet.

As a mom, who probably has a little OCD, I can't help but want to TRY and be prepared for everything. I want to have a plan, I want to never be caught with my guard down, I want to fix the problems, even those that haven't happened. I have been struggling with these thoughts a lot here lately. It usually goes in this order...1. Oh cute sweet baby 2. I want to grow our family 3. I want the genetic testing to hurry up 4. I don't want to know the results... It's a viscous cycle of worry. I cycle that I don't have to deal with...

The past few weeks the same verse has made its way to me in several different ways. It's like God has been planting it everywhere to get to me to notice His word. And believe it.

Mathew 6:34

Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is it's own troubles.

This is such a great reminder for me to not worry about tomorrow. Me worrying about genetic testing, and worrying about growing our family, and all of the what if's, is only going to make me go crazy. I know that God has been with us from the beginning of this journey, and I know He will not be leaving us anytime in the future. He does have a plan for my family and I completely trust in that plan. I will let him mold my family into what He wants, and not into what I think is best. I am going to put my worry into the words of prayer. I am giving it to Him.

I am confident in God's plan for my family.

Isaiah 41:13

For I am The Lord, your God, who takes hold of your hand and says to you, Do not fear; I will help you.