Yet another recap..

So I did it again... Yep another recap because I haven't done well at updating. Oh well better than nothing I guess :)

So in September Chris went to Maryland for a hazmat training and Maddie and I went down south to Florida. Chris was going to be gone for two weeks, but thanks to the government shutdown, he was sent home 3 days early. Thankfully they allowed them to cram in the rest of their class so they could get the certification. Maddie and I had such a good visit with family and friends. It did feel very weird, being in the place where Chris and I use to live, without him. But we we're still able to have a fabulous time! Once again, I was nervous about flying with Madilyn. When we went to Boston I had other family members who I could pass her to if she got cranky. But this time it was solely on me. On both flights we sat next to people who ended up talking and playing with us the entire time. She didn't have any problems at all. She is such a trooper and a way better flyer than her mother ;)

We recently had a checkup appointment with Madilyns neurologist just to check in to see how everything was going. Once we finally got back to the room, a new doctor had come in to get our background before our neuro came in. I was filling her in on everything when she stated she saw that the heart tubers had been found back in April. I quickly interrupted her to tell her that those had disappeared. She routinely asked what medicine she had been on to shrink the tubers.....I very proudly told her she hadn't been on anything. She seemed shocked and kind of stumbled on her words for a little bit. I can't even explain how happy I was to see yet another doctor shocked by her progress. We were told from the beginning that these tubers could slowly shrink over time, or they could also stay the same size, or even worse, get larger and cause her to have open heart surgery. The fact that within 2 months they were completly gone just gives me chills. God is so good and is working such big miracles in Madilyn's life. The rest of the appointment went very well and I left with a smile on my face and a pep in my step.

We had Maddie's birthday party a few weeks ago and oh my was it a blast. We had around 40 of our friends and family join us to celebrate. I know the first birthday is a big thing for parents, but for me it was even more than just a number... When she was first diagnosed we heard all the bad. We had no clue what her life would be like by her 1st birthday. All we saw was a happy 1 year old that was kicking this horrible disease in the booty!!! It was a glorious day for our family.

Last week we had Maddie's therapist come and do a evaluation on her development. She did all of the tests/activities and went over her findings. She looked at us and said "you have a medical miracle." Of course I started crying. I know she is our miracle, but to hear a medical person say it just means so much. Maddie rated anywhere from 12-15 months on the testing. So she is actually right on track, if not a little ahead in some areas. Technically with that kind of an evaluation she shouldn't qualify, but because of her diagnosis, she automatically qualifies. We made the decision to see the therapist once a month just to make sure she is still doing ok with her milestones.

We also got word that we will start building our house soon. We can't wait to get our family into a bigger home that is more suitable. This has been an on going process for 2 years. So to see it finally coming around has us soooo excited. We will hopefully start the building process around the first of the year. 

I am in awe of this girl and even more in awe of what God is doing in our lives. I have said this a lot, but  it truly is a honor to be Madilyn's mother. And I know that can come off cliche. But I am so thankful that God has allowed us to be her parents. God has shown me so much by being her mom. Things that I don't know I would have seen had we never laid eyes on her. This may sounds crazy, but if she didn't have TSC, we would have missed out on these blessings and we wouldn't have seen these miracles. God is so amazing. And I will never be able to thank him for the blessings that I have received through Madilyn. 

One more thing... You know how exciting this time of year is?? You know, all the holidays, party's, family get togethers...well a lot of families will be spending this time in the hospital with a sick child. Maybe even being separated from the rest of their children. Please pray for these families and maybe even think of something you could do to make this time a little easier on them. Our family has some things we will be doing and we encourage you to do the same. 

Thanks for following Madilyns journey and please keep the prayers going up! We love you all!!

Chris, Heather and Madilyn

Summer 2013 Recap

Get ready for a long blog with lots of pictures... It has been such a great summer for our little family! I'm going to do as quick of a recap as I can... Her we go!

In May we took a trip to Boston for my brother's senior trip. We have had this trip planned since last summer. So naturally in April when Madilyn's health condition happened, we were afraid that we would have to skip out on the trip. We spoke to Maddie's Neurologist about the trip and flying and he gave us the go ahead. He told us that we need to treat her like a normal little girl and live life. The trip couldn't have come at a better time. We were in need of a getaway to say the least. This was her first flying experience and I was one nervous momma... I didn't want to be that mom who let her baby scream the entire flight. I remember before I was married and had Maddie I would be so annoyed at those parents. Needless to say I was not looking forward to the flight. To our surprise Maddie did wonderful! No crying at all! We had such a great time when we got there. We got to see all of our friends and even got to meet the new baby in the group, little Richie! We also hit up Fenway and spent plenty of time relaxing at our beach house. The beach house was incredible. We went to sleep with the ocean waves rolling every night. It really was the perfect trip!

Maddie had so much fun with her nana out on the beach

This was our home for the week.. it looked like something straight out of a book

Little Richie and Maddie playing

Plymouth Rock

Weenie roast on the beach with papa and nana

Having fun with uncle j

Fenway!! Maddie was asleep in the stroller

 

 

 

When we got back from our vacation we had the pleasure of being photographed by Laurelu of Heart Photography- Staci Cole. You can visit her by clicking here. We had so much fun with her and the photo's turned out better than I could have ever imagined. These photo's mean so much to me because as most of you know with TSC you have no clue what each day, minute or second can hold. Staci captured her so well and we will always have these photo's to bring us back to this wonderful time in her life.

 

 

In July we had Madilyn's 3 month follow up for an EEG and Echo cardiogram. I had been so nervous and anxious for this appointment. Madilyn hasn't had a seizure since April 26th so I was hopeful that things would be good, but couldn't get the what-if's out of my head. Luckily I had my side-kick, Candice and her two year old, Mack to go with us. Chris was on an OT shift so they graciously joined me. After a long day of appointments the news was : Maddie's tumors on her heart were GONE! We were so thrilled by this news! And then to make it even better her EEG had greatly improved! She was still having some abnormal activity but NOTHING like it was in April. Her neuro was so pleased with her progress and couldn't believe how well she was developing. Mack and Maddie played during most of the day and Candice made the day so positive. It was a great day all in all!!

Maddie did so well with her EEG! Thank goodness :)

Mack and Maddie having fun in one of the many waiting rooms we waited in!

 

 

We also go to join Brent, Candice and Mack at the lake for a long weekend. We had such a good time being out in the sun and enjoyed the time away. Once again Mack and Maddie had a blast!

 

Candice and I grew up together as kids. It is so amazing getting to watch our children do the same! They are just like family to us!

Out on the boat!

 

The end of July brought my dreaded shoulder surgery... YUCK! Thankfully everything went well during surgery. I was in a lot of pain the few days after but have been feeling much better. We moved in with my parents to have the extra help. And boy has it been helpful. I will be in a sling for 4 more weeks. I'm pretty much useless when it comes to taking care of Maddie. It's really been tough having to sit back and watch others do my job. I'm just thankful that those who have helped have been so amazing. Maddie just loves being the center of attention!

Finally getting to hold me sweet baby!

 

 

 

Are you all still here?? I'm sure I've lost a couple of you by now ;) On to the finale.... We made our trip down to the Fort Worth are this past Monday. We were going to be visiting with a TS doctor and geneticist. The day started pretty bad. We had one problem and then another and another and so on.... We finally got on the road at 3 in the afternoon and arrived at our hotel around 8:30. Maddie did very well on the trip. I was more of a problem then she was ;) My shoulder was killing by the end of the drive. We woke up bright and early on Tuesday and headed to her appointment. The Cook Children's Medical Center was amazing! Everything was so high tech and all of the employees were so helpful! We first saw a geneticist who talked about our family history and explained to us what she will be looking for in all of our testings. They will first start with Maddie and then move onto Chris and I. I am very anxious to get this done so Chris and I know if either one of us have TSC as well. After that we saw her Neurologist. He was incredible! He explained sooooo much to us! First of all Maddie at this point only has tubers on her brain. She does not have any SEGA tumors. They are the ones that grow and can cause some major problems. They will continue to monitor her with yearly MRI's. They said if this does ever happen there are different options. There is surgery to remove the tumor and also a medicine to shrink them. The medicine is also used on renal cancer patients. So it would act like chemo. You don't lose your hair but it does kill down you immune system. And also it's a medicine that has to be taken for the rest of your life. If you stop them the tumors would grow back. But thankfully we don't have to worry about that for now. He was so pleased to see that she was doing so well with her meds and that we were weaning her off of one of them. He completely agreed with her treatments and told us that the Neurologist that we see in Tulsa is the best around. That gave us such confidence in her medical care! He also mentioned how impressed he was with her developmental skills. She is right on track with her skills and he said we are very lucky to have such a smart girl! We of course new that ;) We left feeling like we had gained so much knowledge about TSC and felt very encouraged by how well she is doing.

 

We also goy to visit with Chris' grandfather and grandmother while we were down! Our vidit was wonderful, just not nearly long enough. We can't wait to see them again!

 



 

I don't understand why God has put us in this situation but I do know that he hasn't left our side through all of this. We have been so blessed with amazing doctors and nurses. He has shown his love through others and there support for us. He has shown me what it means to love... We have learned to enjoy every second of our daughters life. We don't know what tomorrow holds for her, but we do know that we will never be left alone. He is there for us and what a great feeling that is!! We feel so blessed to have our daughter in this life with us. She brings so much joy and love into this world.

 

 

Well I guess I better stop before I get all teary eyed... Plus typing this with one hand has left my left hand almost numb!

 

Thank you all for staying with us on this journey. Please continue to pray for our family. We know that God is hearing and answering all of the prayers being sent up. Also, would you please share our facebook page? We would like to show others out there how God is touching and blessing our lives. We love you all!!

 

 

Chris, Heather and Madilyn

 







Looking back...

Tonight I was looking through my video's on my phone and ran across a video I had taken of Maddie. It was one of her first seizures that she had. I wanted to catch it on video in hopes of expediting the hospital process. I watched it tonight and all I could do was cry. At the time of the video I was still in denial that anything horrible was wrong. But now being on this side of her diagnosis all I can do is feel sadness and hurt. It reminds me that our life has completely changed since that day. Before we thought about dance classes, school, weddings and everyday activities of an infant. Now our life is full of doctors appointments, close monitoring, worry of the future...just to name a few. It's so easy to let myself think everything is OK because on the outside she looks so good and hasn't had a seizure in over a month. But it's nights like these that everything can seem so dark. I am reminded that my sweet, precious daughter has tumors on her brain and heart and will possibly have more on other organs as she grows older. It's a reminder that her life will more than likely be full of blood tests, MRI's, EEG and EKG's. It's a reminder of how someday I will have to explain to her why she has such a different life. It's a reminder that Chris and I have no choice but to be strong advocates for our daughter. But through all the tears and sadness, I am also reminded that Chris and I aren't alone... God is being strong for us when we can't. He is taking care of her like no one else can. And that gives me comfort in the times sadness. I wish this was all a bad dream, but it's not, so I will wipe away the tears and keep loving on my sweet girl like there is no tomorrow.

I somewhat hijacked this blog... I know this was intended for "Maddie updates" so I'll get on to the good stuff.

Maddie has been seizure free for over a month now. She seems to be developing very well. We took a trip to Boston in May and she traveled like a champ. I was so proud of her! She has a lot of doctors appointments coming up in July and then a trip to Dallas in August. So please keep praying for her. I am finally having surgery to fix my right shoulder on July 25th so we will also need a lot of prayers for that. It will be a big transition for Chris and my family since they will be taking care of her until I can heal. I was told that I could be in a sling for up to 6 weeks. I'm hoping and praying for a very quick recovery.

Thank you all for the prayers and words of encouragement. As always it's what keeps us going.


Love always,

Chris, Heather and Madilyn

Tulsa trip

So today we headed to Tulsa to visit with Madilyn's Cardiologist and Neurologist. We left at 10 am this morning and just got home at 7pm. We are exhausted!! On to the more important stuff...

The Cardiologist wasn't too concerned with the rhabdomyoma's (tumors on the heart). She said that they aren't obstructing anything with the heart and she expects them to hopefully disappear  as she grows. We were thrilled to hear this great news! God answered our prayers :) They wanted to send her home with a heart monitor on just to make sure her rhythms look good. All these wires hanging off of her are going to be a nightmare tomorrow. I don't know how they expect a 6 month old not to pull them off... But we will do our best.

After that we headed over to her Neurologist. The doctor was so pleased with her progress. She is on the lowest dose of Sabril and is showing great results. We are now on day 12 of no seizures! We talked with him and he said she has no SEGA tumors as of now. SEGA's are the big tumors that can cause a lot of problems. We are praying that Madilyn won't have to encounter those. We talked to him about visiting a TSC clinic and he thought that it would be a great idea. The closest one to us is in Dallas, Texas. So it looks like we will be making a trip to Dallas soon. I'm excited to see what all we can learn from that visit. Our doctor mentioned that he thought it would be good to go there so that they can have an idea of her specific condition and to meet the Neurosurgeon because eventually she could need brain surgery. I HATED to hear those words. The thought of her having brain surgery makes my stomach turn upside down. We are going to pray that she will defy those odds. We know God is powerful and we are asking you all to keep lifting her up in your prayers.

I am so thankful that she is doing so well, but I can't help but get a little down knowing that just because we have these under control doesn't mean she is "fixed." I often think of her future... will she be able to talk, walk, read, write...? Will she be able to get married and have a family of her own? It pains me to think that she may not get to do these things that I so badly want for her. I know that these are more of my own wishes for her and that wherever her life goes she will be happy. Because we will make it happy for her. And who knows... Maybe she will be able to do all of these things.. or some. I don't have the answer to these questions, but I do know one thing... I will love her unconditionally no matter what she does or doesn't do in life. She is my world and the strongest little girl know. We will do everything in our power to give her nothing but an exceptional life.

Along with these fears, is the fear of not know whether or not Chris or I have this disease. It would be so hard to not feel guilt for passing this on to her. We are trying to get things started on get ourselves tested, but I must admit I'm not looking forward to the process. I almost don't want to know.. for selfish reasons of course. I'm trying to give these fears up and let God work his way. But sometimes I just can't get them out of my head. Please pray for us in these areas. We could use some peace and comfort. We pray for it daily and would love for you all to help us as well.

We are very thankful for all of your support and prayers. God answered our prayers today with such good visits with both doctors. We continue to feel his presence and thank him for each wonderful day with our daughter. And a BIG thank you to all of you who are helping us in reaching our goal of $500! Last time I checked we were at $190! We pray for a cure every night and your help in this is greatly appreciated!

If you'd like to donate towards our goal the link is  : http://my.e2rm.com/personalPage.aspx?registrationID=1870981

The money goes straight to the TS Alliance for research.

We love you all and thank you for your prayers!

TSC Awareness Month

The emotions are running high today. All happy thoughts :)

I never in my life imagined that I would get to be a part of such a loving and caring community. I was so happy to see that there was so much support out there for us. To know that we aren't alone in this disease make the days easier. PLEASE join us in spreading the word about TSC. http://www.tsalliance.orgI hope that between all of us we can get the word out. Before Maddie was diagnosed I had NEVER heard of TSC and even when she was diagnosed it was still mind boggling to me. Everyday we learn a little more and are so thankful for the other families sharing their stories.

Update on Miss Maddie:

SHE IS WONDERFUL! She is 5 days seizure free :) We are staying positive and praying that this medicine will continue to work for her. She does have some fussy moments that aren't so fun, but I'll take that any day over seizures. The medicine she is on makes her sleepy, irritable and very shaky. She has to be constantly moving or she gets very aggravated. This added with teething can make for some crazy days. One thing that helps her is being outside. She loves fresh air. I took her to the park 3 separate times yesterday! But I don't mind one bit... I have my girl and that's all that matters.


And of course... PLEASE continue to pray for Maddie. God is taking such good care of her and we praise Him for that! He is such a good God! Please, also remember to pray for other people who are fighting this disease. I have become friends with many mom's through the TSC facebook page and I just can't stand to see other babies suffering from TSC problems so please lift them up as well. We serve a Mighty God and I love seeing him work in our lives each day!

We love you all so much!
Chris, Heather and Madilyn

My Sunshine

I'm not even sure where to begin... Lets start with the good of this week.

We picked up my mother-in-law, Alex on Monday and boy was Maddie happy to see her "Oma". We have been so excited to see her and the trip couldn't have come at a better time. She had actually booked her ticket before all of the medical issues happened. God knew that we would need her around to help us out. We got a phone call on Tuesday that her medication would be in on Wednesday. We were so excited! This medicine is what we are hoping will completely put an end to her infantile spasms and hopefully correct her hypsarrhythmia. We had heard this medicine called a wonder and miracle medicine. So on Wednesday morning we woke up as if it were Christmas. We would jump at every loud truck passing by, just to make sure it wasn't the UPS guy passing our house. We finally got it in the afternoon and gave her the first dose around 4:00pm. We made sure to pray over her before giving the medicine to ask that God would be with her as we tried the first choice of treatment. Thursday came around and she was not happy. She screamed all day. Nothing I did would console her. I bounced, rocked, sang... you name it I did it. I was crying with her at one point. I just wanted her to be happy and that obviously wasn't going to happen. I finally decided to take her to the park for a stroll. I needed some time away and she needed a nap so bad. The park was what we both needed. She fell asleep and I got to rest my mind. I kept wondering how in the world were we going to get through this? I was thinking to myself surely every day wont be like this??? Well Friday came a long and things weren't much different. By 7pm I was mentally and physically exhausted and so was poor Maddie. Chris looked over at me and reassured me that I was dong a great job and things would get better. Thank goodness for that man! He knows how to lift me up when I'm down. I went to bed dreading today.. Chris was going back to work for the first time since everything happened and that meant I was going to be alone. We both prayed that today would be better for her....And what do you know :) Today she was so much better. She still seems a little lethargic but she was so much happier. I also, realized that we were seizure free today. What a BLESSING! I am so thankful for her happiness and I pray that she continues to be my happy little girl.

Even in the low times I feel God's presence. He keeps reminding me in small ways that I am not alone. And that this is his mighty plan. I keep thinking about Chris and I making the decision for me to quit my job to stay home with Maddie. That was God preparing us for this. I can't imagine the stresses we would have right now if we were both trying to work. We were so happy we had the opportunity for me to stay home with her....little did we know it would mean even more to us now.

I know I have said this over and over but we would not be able to wake up everyday without the love you all are showing us. It makes such a difference in our days and mood. Please, please, please continue to lift our family up in prayers. I have no doubt that your prayers are being heard and we are feeling them every day. Please pray that the medicine will not bother her like it has been. And please pray that it does the job and stops her seizures. Of course Chris and I need prayers badly as well. It's absolutely heartbreaking to not be able to help your child. Strength and patience are a necessity in this journey we are on so please continue to pray.

Before I stop the rambling, I also want to say thank you to those of you who are sharing our blog on your facebook. The more people praying the better. So please feel free to share away and to add us to your church prayer lists. You guys are AWESOME!

As always...We love you all!!

Chris, Heather and Madilyn

A week past

Today marks a week since we brought Maddie home. It has been filled with so many emotions. Some days I feel like I can conquer this disease by myself and other days I feel somewhat hopeless. Thankfully, the down times are quickly gone thanks to all of you.

While we were in the hospital I wasn't sure what to share with people. I didn't want to not tell people because I knew we needed the prayers, but I also didn't want people to think we were asking for attention or sympathy. As most of you are aware, we pretty much plaster Maddie all over facebook. We actually catch a lot of flack for it... But I truly believe now that this was a part of God's plan as well. We have friends and family who have never met Maddie before but through facebook feel like they know her because they ALWAYS see pictures of her. I am so touched at what social network has brought to us. So many people have reached out to our family with prayers, kind words and support.

Maddie has been hanging in there. She is still having her seizures but they do seem more manageable now. However, it's still heartbreaking to see your child go through these things. I don't know how many times I have prayed for them to be taken off of her and put onto me. I continue to tell myself that the plan God has for us is far better than any plans Chris and I could have ever thought of. We are trucking along but still need prayers. We can tell they are working and we appreciate them more than you will ever know.

I will try to update this periodically to let you know how Miss Maddie is doing. Hopefully I'll do better than my past attempts at blogging :)

Love always,

Chris, Heather and Maddie

Madilyn

As most of you know our world somewhat changed on Saturday. It actually kind of started on Wednesday evening before church. I was feeding Maddie and she kind of had a twitch but it honestly 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 looking worse and her face making different movements that we did not like. Saturday morning we headed straight the St. Francis Pediatric Trauma Center. 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 Spasm 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. Finally yesterday 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 were sedating her and was fighting the sleep so bad. She finally gave in and they took her limp body back to the room. We 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 your 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? 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 have a lot of work ahead of us.There will be treatments to try and stop these spasms and unfortunately the TSC will be a condition she lives with. That being said 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!

We are absolutely amazed by all the love, support and prayers that we have received. God has blessed us so much. He placed each one of you in our lives to help us get through this and we thank Him and you for that. We will need a lot of prayers for strength, patience, knowledge and much more. We will make it through this, I know we will. We are planning on getting involved with awareness groups to try and help others with this and we are going to ask our friends and family to get involved with this as well! The official website for the TSC is tsalliance.org. You can check it out and get yourself aware with the disease.

Once again... We can't think you enough for your prayers and please do not forget about us as we still need prayers. We love you all!!

Chris, Heather and Madilyn

"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."