Its time to start...

Ok.....I am almost on summer break and can't wait to start blogging. I am new and have no clue how to blog but I am going to give it a try. I have gotten my inspiration from Evan's moma and hope I can keep up. Let's see how I do!!! This adventure with Willow and TSC will not stop tomorrow or next year. We are in it for life so I need this blog for my sanity!

9 months .........

Well it has been a roller coster the past 9 months. Willow was born Sept. 8th at Bayfront Medical Center. She was immediatly taken to All Childrens. At birth they told us to expect the worse. She would need a new heart or major surgery right after birth. They pastor from our church came along because it was suggested she was bapitised at birth. The c-section was long and horrifing....not because I was scared of the knife.....I was scared for my small weak baby.  Setting in the CVICU I watched them put tubes up her nose,iv's in her head.....but no respirator. What was this I thought, they said her heart was going to collaspe at birth and now she can even breath with just a little oxygen help. The tumor that was almost covering her tiny heart was not doing anything! Within 10 days she was sent home on monitors. They said there was two ways this was going to go.....either Willow had a tumor that would have to be removed soon or she had something called tuberous sclerosis. Well the tumor is shrinking and TSC is what she has. This was scary for me because as a Special education teacher I have a student in my class with this disease and I know I hate it! Willow is a strong baby though. This April she suffered from seizure like episodes (no one really knows) and spent a little more time in the PICU. Since then she has been seizure free but has failed to gain weight in 3 months. She seems to be a little stuck looking like a 3 month old. She also seems to be suffering from severe allergies. I want to know everything and nothing about this disease. It is crazy. But through this all, through the pokes,the therapies, and the numerous trips over that dreaded bridge to the children's hospital my little miracle continues to smile! She never cries and has became a social butterfly. She looks at me with a grin at my worst hour and it all seems OK. I am so blessed to have her!