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