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.

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.

School Days...

Hanging with the boys!

You've Come A Long Way, Baby!...

Mom tells me this all the time... and has told me that slogan was used as an ad for a cigarette commercial back in the 80's. Ironically... here I am working hard to breathe and there are people out there with normal lungs and airway passages just trying to hurt them with cigarettes? I don't understand that?!
My mom and dad are soo proud of me these days, because I have come a long way! I made it to the Jersey Shore and went on my first family vacation over a month ago. I even got to the beach for some pictures! Smell the salty air, hear the seagulls go "eek", watch my brothers carry their boogie boards to the beach, my parents have cocktail hour, and even got sand between my piggy toes!
It was hard work, but my parents made it happen for me! I was always with one of them at all times. They brought all the machines and medicines so I could go on a true family vacation with them. We all gathered in Avalon, NJ at the beach for a family portrait. Avalon is where my mom & dad met!!! It was fun, but we had to go back home so that my brothers could go back to school! Its exciting to hear everyone in the morning get ready and hear the bus come down the street. I see Mrs Doherty come and take my brother to school and drop him off. Mrs Cantando comes over too. Its been fun being home and listening to all the sounds of home! I have many nurses who come to take care of me through out the day and night like Willy, Erin, and Ken.
Thank you for all your prayers, I truly feel your HOPE for me. It is because of your prayers and all these great people who care for me.. that I have come a long way... and a long way I want to go! Hugs & Kisses!

Pink is a good color for me.

Its been almost one week, and then it happened again. I couldn't breathe, my stats dropped, and mom revived me. She said I turned blue. I heard her talking to me, but it was hard to breathe, even with the oxygen tube. I tried my hardest to breathe, and with the help of mom and dad... I felt a little better breathing and then it wasn't soo hard. I turned pink again. Pink is good. Good for me.
My parents had to make the call to 911 and now I am in the hospital again. I am trying my best to be good for them, and sometimes its soo hard to breathe (with oxygen). They just Love me soo much. I Love them soo much.
I hope to go home tomorrow to be with them, and hope to go to the real "seashore" house with my family this week, because I heard the air is easier to breathe at the shore. Hope is what I have.

Home in time to Party!

On Saturday when I came home it was my big brother's 2nd Birthday! I got to celebrate it with the family!! I am all set up at home in my crib, and lots of people can hold me. I am still attached to many wires and tubes, but there's nothing like being in the same room and hearing my family sing Happy Birthday (Cha Cha Cha) in the dining room! The next birthday party is Stephen's in December, and then after his, it will be my 1st Birthday Party! I want to have mine at home too!