I'm just traveling through...

This week has been a trying one and it's only Monday. I have seen so many families grieving the loss of babies, husbands and everything in between. I have seen new sweet babies be diagnosed with TSC and seen some lose their battle to it. My head goes back to those days of being in the hospital with Maddie and those feelings of sadness and pain feel so real, just like they were happening today. My heart was so blind to childhood illness. Now that we have dealt with it with our own daughter, it's all I feel like I ever see. Children battling cancer, children with incurable diseases, and babies who grace our presence for only a few precious hours. I can't help but ask the question....Why? When asking it, I'm not questioning God's plans, I'm just questioning why because my earthly body can't understand why such innocent babies have to hurt. After lots of thinking today I realized I don't want to know why, because I don't think I could handle it. I know our Heavenly Father is working in the lives around us and I can feel his presence so strongly. I don't know why things happen, but I do know one day we won't have to see or feel the pain of death. We won't have to cry over lossed loved ones, or newly diagnosis or miscarriages or all the things that leave us wondering why... We will be in heaven with the ones we love, and for now, that's enough to give me peace.

 I'm writing for me tonight. I don't have any kind of profound findings or answers. I simply needed to right out my thoughts and feelings. I pray that each of you who are hurting tonight can find the peace that I have found.

This world is not my home, I'm just traveling through...

New Year, New Blessings

I hope you all had a very enjoyable holiday season. Our family sure did. We saw tons of family, ate way too much food and had many nights of laughter. I usually dread the end of Christmas because it usually seems to bring a time of let down from all the fun the season can bring. But this year it feels different. I was actually happy to see the holidays pass. The reason...we have a lot going on in the next couple of months. This month alone we have 3 appointments for Madilyn that will let us know how her body is handling the awful TSC disease. I'm nervous and anxious to get her results. We may start the weaning process if she has a clean EEG. I'm praying that that is exactly what we get to do. In the same since it frightens me... She has been on this medicine for almost 9 months. What if we start to wean and the seizures come back?! It's unlikely, but I'd be ok with NEVER seeing my daughter have another seizure. I know that God has brought us this far and I know he will continue to be right by our side. My earthly self can't help but be a worried mom. Speaking of worried mom..we had a scare about a week ago. Madilyn was having some tremors. My heart dropped as I watched her hands tremble. I called her neuro immediately and we made a decision to monitor her and take it slow. She hasn't had anymore since last week thank goodness!

In February we will be traveling to Florida to met Madilyn's great grandmother from Germany. She is flying into Florida for her 70th birthday. Chris hasn't seen his grandmother in years and I have yet to meet her, so needless to say we are very excited. We will also get to see my dad and family :) I can't wait to see my little brother :) Maddie and him just love each other.  

Fast forward to May and we will be apart of our 2nd TSC Awareness month. We have a lot of things planned for this year. I will post more about them come closer to time. We hope to see lots of people in blue shirts! Last year was so amazing!! 

Then the big trip... we are hoping to travel to Washington D.C in July to attend our first National TSC Conference. It is very important to me to go. There will be doctors, scientist, other TSC moms and much more. The knowledge we will gain is immeasurable. Since this disease isn't something that is going to go away, I want to fill my brain with all the information I can.

In order to be able to attend the conference we will be doing a few of fundraisers to assist with the travel expenses. We have also filled out a scholarship that may help with the fees. If you would like to help you can go to www.helpourfundraiser.com login-504704 password-maddie

Well I have a toddler who is ready to play, so I better listen to the boss :) As always, we appreciate the prayers, love and support that you all show our family. We are thankful for each and everyone of you!!

Love you all,

Heather 

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