sunday

After some much needed sleep last night- seriously the hospital chair is growing on me-
I woke up this morning with a more clear mind. I'm glad I vented and I think there will be many more posts like that in the future so thanks for letting me just let it out. I have to say one thing though, as much as I have my moments where I still wish things were different for Makenzie's sake and she didn't have to go through this, I couldn't and wouldn't change it for one minute if it meant I couldn't have her. She smiles at me under all her tubes, she waves her arms and legs around like she wants to get up and dance, she trys to sing even though nothing comes out and I love that about her. She inspires me.
Its been amazing the support I have receiving from family, friends, strangers who are now becoming my friends and so many others that just hear about us. We are blessed. God is probably overwhelmed with the amount of prayers he is receiving in regards to Makenzie. Thank you all. I cant even begin to know how much it touches my heart. This girl will have many rough roads ahead and I need to keep my head up, stay strong and keep walking for her. I will soon need to pick her up when she feels down and make sure she knows how incredible she is. Thank you all for picking me up now and helping me along.

Today went well. Our baby was a smile maniac. I'm learning more and more about her gtube and I now change her dressings alone. Something so strange but so awesome for me. I'm starting to feel like a nurse myself. Everyone is great but they do things different and in each of their own ways- me: not so much. I am open to new ideas and opinions but if I don't like it, ill tell you and you better do it my way. I think I'm starting to be the ANNOYING Mom and no one will want to be assigned to our room.

Tomorrow we are hoping to get the genetic test back to confirm Makenzie has SMA and give us an idea what type she is. IF for some reason the test comes back negative, they will start doing more testing to find out what neuromuscular disease she does have. They know she has some type but there is a small chance it could not be SMA but something else probably more rare than SMA. I hope to get the test back to officially get a title on whats going on. My heart keeps telling me SMA or something else similar but my mind keeps telling me something will change and they will find nothing. I look at her in this hospital bed and just don't understand. She is a different baby than she was a week ago. She has color in her face, she is gaining weight, she has a belly-her skin doesn't just hang on her body, she is kicking her legs and waving her arms, she has these incredible bright eyes that talk to you. I just cant really convince myself there is anything wrong with her.
I think it will really set in when an official diagnosis is made and at that point, I can take the bull by the horns and run. I can jump onto the band wagon and make our next step.

Until then... Ill still dream tonight that ill wake up from this nightmare and be home with Ryan, Makenzie and Harley...