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| This was the first time Maddie left the room for a trip to the play room. |
Wow! It has been a long time blogging world :)
I am happy to say the silence has come with a lot of exciting things for our family. As most of you know Madilyn had two brain surgeries back in November. It was by far the hardest thing our family has ever had to go through, but with that being said, it was the best thing we could have ever done. I am so thankful for her wonderful team at Le Bonheur Childrens Hospital! They took excellent care of our sweet girl! I love them like they are family. I am so thankful to say that Madilyn has been seizure free since surgery! It feels like a dream. Waking up in the morning and not immediately being tortured by seizures is such a blessing. We have seen her double in speech and she is learning by leaps and bounds. There really are no words to express our happiness and gratitude. She is still on seizure meds and we are slowly starting to reduce some. So far the weaning process has gone well. We had to push back a drop back in February when she got pneumonia. I was terrified of break through seizures with her high fever but thankful everything went well!
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| Snuggling up with daddy. |
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| Madilyn loved checking out Karen and Creedon's cool socks! |
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| Sara and Beverly are Madilyn's wish granters. She absolutely loves them! |
In December we received the news that Maddie would be getting a wish granted from Make-A-Wish. The news was both exciting and a little sad. When I got the call I started to cry because I knew Maddie deserved this, but seconds after the happiness, my heart felt a crushed. I can promise you never did I expect our baby girl to be approved for something like make-a-wish. When I look into her eyes I don't see a little girl living with a life threatening disease. I see a little girl who has overcome so many obstacles. It is heartbreaking as a parent knowing that this disease is life threatening. But there is NO TIME for feeling sorry for ourselves! After I got out a good cry I made a decision to only let this be a happy time!!! After all she has been through this past year this girl deserves a week of being treated like a princess! Naturally her wish was to go to Disney World to meet all the princesses! I wouldn't have expected anything less from our little princess. We will be going May 3rd-May 9th. I am so thankful we will get this time as a family. We don't know what this disease will bring. We have no clue how long her seizure freedom will last, so instead of sitting around waiting for the world to crash we are living our lives to the fullest! This will be a trip of a lifetime. I can't wait and am so grateful that our Maddie gets this opportunity. I also look forward to partnering with this amazing organization in the future.
Another big event that happened was getting the opportunity to go back to Washington D.C. with the TS Alliance, to march the hill for funding of the TSCRP. Last year was such a learning experience. I had no clue what I was doing, I just knew I had a story to tell. This year I felt much more confident and knew that the past year of struggles would push me further. I got to speak with 12 different offices, and had a warm reception from all of them. I am sooooo happy to say we actually have a few Oklahoma signers this year. This is the first time since the inception of the TSCRP that an Oklahoma Congressman has signed. When I got the first confirmation I cried the entire way to my next appointment. It was such a relief to feel like we were being heard. I hope that this is something we can count on for years to come.
Well I could go into much more detail but the "boss" is pulling at me to go play with paint! I hope you all are doing amazing and thank each one of you for praying for our family. God has blessed us in so many ways. We can never say thank you enough for the prayers, and ask that you continue to keep our family in your thoughts and prayers.
Love always,
Heather
