Fall Back

The boys went to back to school, and I soon went back to CHOP.

There has been a change in my status. I am not able to "sprint" as often as I was able to do so. Sprint means that I could take a break from the BiPAP machine. The break would allow me to use the nasal cannula tubes for oxygen. The BiPAP machine...air delivered through a mask is set at a measured pressure for inhaling and another for exhaling. BiPAP allows me to get more air in and out of the lungs because I sometimes lack the natural muscular effort needing to do so.

So now I am at CHOP, and I am reliant on the BiPAP machine at all times. They tried to sprint me again, but I cant respond like I did in the past.

So in addition to many people praying for me, I have many doctors working to help me so that I can breathe on my own again. Including my big brothers. Stephen has taken on the role of Dr Licht, my neurologist as he was trying to fix my brain...and Brendan was trying to tap into my lungs to help me breathe like Dr Goldfarb, my pulmonologist.

They know I still need more "fixin' ". So my brothers are going to come back to visit me almost everyday to help fix me. My family is praying for me everyday to help heal me.

My summer vacation

Over the summer, my family and I went to the beach.

Mom and Dad set it up with the homecare nurses that I could come with them to the beach house they rented.

We all had a good time, the boys hit the beach almost everyday. They went to the boardwalk with their cousins, and went on the rides. I hung back at the house with the nurses and Grandmom Anne and Grandmom Kay.

The smell of the bay, the sounds of the waves, and the taste of salt in the air was very relaxing for my parents until the one day my stats dropped and I had to go to the beach hospital. I stayed overnight and mom picked me up the next day. The following day we ended our beach vacation, packed up my machines and headed for home.

Great Aunt Joan

Pictured above is my Aunt Joan holding me on Easter Sunday 2008.

On September 20, 2009 Great Aunt Joan joined my Great Aunt Nancy in Heaven.

We are so thankful to have Aunt Joan's wishes of gifts to Gianna and her hopes of Gianna having a better quality future and or thoughts and prayers for our little one.

Gianna is in the PICU at CHOP, and has been for over a week. We appreciate all your gifts, and we really appreciate your prayers for Gianna. Please pray for Gianna's return home to her brothers.

My GREAT Aunt Nancy

Today my mom and dad attended the funeral of my Great Aunt Nancy. Great Aunt Nancy is my mother's godmother, and her late husband, Joe, was my mom's godfather and grandmom's big brother.

I met my Great Aunt Nancy at my christening last year for the first time, she held me for a long time at my party at my house. She had short reddish hair, big beautiful eyes, and a distinguished voice. She wore a sharp outfit that looked very modern, chic, and classic. Her jewelry was fun, modern, and beautiful. I really loved the way she held me in her arms that day. I was held by a lot of my mom's friends, my aunts, my grandmoms, my cousins, and my godmother on my special day. I noticed something different about the way Great Aunt Nancy held me, like she was born to hold a child in her arms. She was very experienced at this maternal deliverance. Mom told me she has 9 children, and 15 grandchildren! She also has held all of her nieces, nephews, and friends' babies when they were my age.. AND she also has held her nieces', nephews', and friends' babies!! that's a lot of baby holding.

Great Aunt Nancy was Great at holding babies! And what is so Great about the way she held me? It was her way of telling me that she Loves me, and I felt her Love for me. I Love my Great Aunt Nancy for holding me and sharing her love with me. I am grateful to have had my Great Aunt Nancy praying for me, and being a Great Godmother to my mom. I will continue to fight through my ilness like she did through her illness. Aunt Nancy, you are truly Great. We will miss your Greatness here on earth, but will keep it in my heart.

Love,
Gianna

Firecracker!

On 4th of July I was rushed to CHOP to be admitted to the PICU. Familiar places, familiar faces on the 4th! When I catch a summer bug, I cant breathe very well. I not only rely on the oxygen, but I rely on a BiPap machine. I have one at home, but sometimes I need more sophiscated equipment to help me breathe while I fight these colds, viruses, and other setbacks. CHOP's PICU is really good at helping me through the tough times.

I came home today on an ambulance ride. Thanks for your prayers and thoughts.

A special prayer goes to the Coffey family at this time. Mary, a special little girl who also has a family of strong faith.

Home Goods

Drive time with Brendan

Mom and Henry time

Irish eyes are smiling!

Teaching Stephen how to read, starting with "Hug me"

Chill time in my special chair/ stroller/ personalized vehicle

Crib time with the Binky! I cant eat food, but at least I've got the bink!

Playtime with my brothers.. I love when they play with me!

Mommy and Me, OT style... she tells me its playtime!

My brothers and I hanging out at home.

Stephen showering me with kisses! I try to kiss back!

Summa Time!

I have been home since May 21st, just in time for summer!

I got to go to Stephen's pre-school graduation, see my brothers finish school, and my big Brother Henry won his baseball championship game! He even hit a triple in one of the play off games!

Its good to see my homecare nurses again! Yesterday and today I had a milestone with my homecare therapist, Dot. She asked me to reach for my bunny, and I did! I finally can get my body to reach and touch on a command. I did it with the encouragement of my therapist, nurses, and family! My parents are soo proud of me!