I started this blogsite for so many reasons. I am horrible at keeping a journal, and I have had so much support I knew that this would motivate me to write about our struggles. I know one day John is going to struggle with all of this he is going through. I hope that he can read this and know that we have done, and will continue to do everything possible to help him. John maybe the one going through all of this, but he is not alone. This has effected the whole family, as well as our friends.
I do need to take a moment to write about my other child. Sometimes I wish I could see the world as a 4 year old. When this all started Sienna decided she was going to be a doctor. She worked on John "patient boy". She would carry her Doctor kit with her to every appointment she went to. I am not sure if she still has the desire to be a doctor after everything we have been through, but I did get my appointment the other day and was told to "stay still and be patient". Sienna and John are about as opposite as can be. She is a bit bossy, and helps me with keeping John away from things that he should not have. She so nicely takes things aways, and tells him "no brother, that is not a toy!" He pulls her hair, and she patiently tells him "don't pull my hair, that is not nice"! It brings me and Johnny a lot of laughs through out all of this. I don't know what I would do without her. As a 4 year old she is so helpful. The other night after putting them to sleep John got sick and started wreching bad. I hear Sienna from downstairs to come help brother because he is sick. There are so many times that I am helping her with something when I have to stop everything and run to John, and she is always understanding. When he is sick she sits with us to comfort him. She waits for me to hook John up to the feeding tube before she can get lunch or a bedtime story. She is truly an amazing little girl, and I know that all of this will just make her a better person in life. Little John is so lucky to have her in his life.