Thursday, October 29, 2009

Can you Pray... for a miracle?

Blessed Marianne Cope is need of one more miraculous event to occur in a prayer to her, so she can become Saint Marianne Cope. I am in need of a miracle of being cured of Aicardi Syndrome and all the physical ailments that accompany it.
Blessed Marianne Cope took care of many girls and women who became very ill and deformed. She help establish homes for girls and hospitals for the sick in Hawaii.
My family is very faithful and our religion is Roman Catholic, we welcome you and all people of faith to join us in saying this prayer to Blessed Marianne Cope:

Lord Jesus, You gave us Your commandment of love of God and of neighbor, and identified Yourself in a special way with the most needy of Your people; hear our prayer. Faithful to Your teaching, Mother Marianne Cope loved and served her neighbor, especially the most desolate outcast, giving herself generously and heroically for the victims of leprosy. She alleviated their physical and spiritual sufferings, thus helping them to accept their afflictions with resignation, as a pledge of God’s love and their eternal happiness. Through her merits and intercession, grant us the favor which we confidently ask of You to cure Gianna Mashett of Aicardi Syndrome and all the ailments that accompany Gianna's illness so that Gianna becomes a healthy girl as she grows so that the People of God, following the inspiration of Mother Marianne Cope's life and apostolate, may practice fraternal charity, according to Your word and example. Amen

Our Father, Hail Mary, Glory Be (with ecclesiastical approval)

Please say this little prayer every day. Some Intercession prayers are said everyday for 9 straight days.

h1n1 epidemic

I caught the flu, I was home for about 3 full days until I went back to CHOP. I am fighting this flu with the help of the best care at CHOP. Cheers to my team, I know they will help me get better again soon, and soon I will be home!

Monday, October 5, 2009

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.