Thursday, October 23, 2008

I am fragile, handled with care

I came home last Friday from CHOP after a week of beginning the Ketogenic diet. This past Tuesday afternoon, my mommy & my homecare nurse thought I was too lethargic, and my stats were not normal over a long period of time. So mommy & the nurse, Willie, took me down to CHOP's Emergency Department (ED). Daddy was out on the road working, and so Grandmom came up to take care of my brothers while my mom could take care of me at the hospital. I was admitted and now I am back in my second home, The Seashore house at CHOP. The Integrated Care Team will look after me. I have a UTI, and they are doing other tests. I am in CHOP now, and its back to the routine where Daddy & Mommy travel back and forth from home (in Chester Co)& work to stay with me. Hoping I will be home again soon. I know my brother's miss me when I am not home, and I miss them.

Home Care: I receive homecare from a great team of nurses from Bayada. They really have saved my life on numerous occasions, and also keep a close eye on me at all times. They are soo loving and nurturing. They are the second best thing from Mommy & Daddy's care.
The Insurance company wants to take away my nursing care, they cut it back and feel that my mommy and daddy can do it all. My mommy and daddy are the best parents in the world and they are really great at taking care of me, but they can NOT do it all on their own. I am a very fragile child and all my doctors and nurses know this. I need to be watched almost every second because of my breathing problems, numerous seizures, and tube feedings with medications. Not ANYONE can take care of me, and my mommy & daddy need to take care of my 3 brothers too. So please pray that my Insurance company take Daddy and Mommy's (expedited) appeal to keep nursing homecare for me. This will make me happy and keep me as healthy as I can be.

Thursday, October 16, 2008

Ketogenic Diet

We are back in CHOP this week because I started my Ketogenic Diet
Mom and Dad are taking classes each day this week at the hospital. Mom and/or Dad stay with me overnight here too. I should be going home on Friday. I am hoping this diet will help me have less seizures each day.