Many Blessings ahead for 2010

I hope you all had a great Holiday season and you are ready to bring in the new decade of 2010. Its going to be a good year, and lots to celebrate, including my 2nd Birthday in a few weeks!!

Thank you for all your prayers and good thoughts in 2009. I spent Christmas and New Years in my home. The care I receive at home has become such a blessing to me and my family.

Wishing you Love, Faith, Happiness, and many Blessings for 2010!


This is me with my Aunt Kate on Christmas Eve:

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!

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!

I entered the ICU on March 31...

Tues March 31: I was heading back to CHOP to see Dr Goldfarb, and my stats were dropping. I then went to the ED. I went back to the PICU soon after. My home away from home.
Thursday April 2: They moved me to the Progressive Care Unit.
Saturday April 4: I didn't feel well, and it was a struggle to keep my stats up.
Monday April 6: I was seizing more than I usually would. It was by far one of the worst days in a long time. I couldn't get it right. It was a struggle to breathe, the seizures kept coming on. I am not used to this being this bad. Mom and the nurse tried everything to keep me comfortable and to get my breathing right, but the seizures pressed on and it took a toll on me. It wasn't til about 7pm, Mom got me to sleep. Things calmed downed. I was able to sleep.
I am looking forward to having good days.

Saturday April 25: Bet on miles for Gianna's smiles at the Kite n Key

Please join the Mashett and Clark families along with The Kite n Key for a benefit for Gianna Mashett. Gianna is my one year old beautiful niece, who has Aicardi Syndrome: The number of identified cases of children (only females have Aicardi) with Aicardi syndrome has been estimated at 800 worldwide. http://www.aicardisyndrome.org/site/
Gianna is a very fragile child and will need very specialized equipment as she grows. This benefit will help fund these special needs and provide a little fun for her friends who care so much about her!

This 2009 race season Gianna's Aunt Sue Anne will be racing The Broad Street -10miles, NJ Devilman half lite Ironman -50 miles, The San Diego Marathon -26miles, Eagleman Half Ironman -70miles, Ironman Kentucky-140miles, and XTERRA races-30miles in honor of Gianna Mashett. Every mile is hope for Gianna's smile.
You will have the chance to place bets on Sue Anne's finishing race times and win some cash. The winner will have guessed the closest finishing time (without going over) and will be awarded half of the cash pot. The other half goes to Gianna. Winners will be awarded the money after each race.
You must be present at the Kite n Key to place your bets. Empty slots after midnight are available to those who cannot attend the benefit.
each mile is worth a dollar, and each slot is worth the total mileage of the race. See above for each race. SA's race histories/times and background will be available at the benefit, to give you ideas of where you should place your bet! Gianna wants you to know that her Aunt Sue Anne is not consistent, and that will make it more interesting!
Other fun prizes and raffles will go on that night too!
$5 per person at the door and Gianna's friends are offered
$3 Lager and $4 stella on tap
$3 Domestic Bottles and Well Drinks
Wine specials too.

All monies raised go to Gianna Mashett directly. Administrative fees, and all races and expenses occurred are paid by racer (Sue Anne).

Cant wait to see you there!

Host: Sue Anne Clark
Type: Causes - Fundraiser
Network: Global
Start Time: Saturday, April 25, 2009 at 7:00pm
End Time: Sunday, April 26, 2009 at 12:00am
Location: The Kite n Key
Street: 1836 Callowhill St
City/Town: Philadelphia, PA
Phone: 2155681818

Sunshine Day for Gianna

The first grade class at St Patrick's School held a "Sunshine Day for Gianna".
The past couple of months they sold bracelets that said "Faith for Gianna" on it. They are green and white. The class raised money and more importantly, they pray for me everyday.
My family and I were invited to the first grade's Sunshine Day mass and reception on March 25, 2009. I was excited to meet all the kids, so I wore my special dress, sweater, and shoes. I tried to be on my best behavior. It was great to see the children in their school uniforms. They read to me at mass, and gave out pins with big suns on them. My brothers were by my side the whole time. After mass, we went to the school's cafeteria where there were donuts and drinks. Although, I can't eat food like donuts, I enjoyed watching everyone talk and eat yummy snacks. Then all the little girls in the class came around me and watched me sleep. I heard them say nice things about me, and ask questions about me. Mom told me I was a very good girl for them. I was soo happy to meet all these pretty little girls. I am always surrounded by boys.. because I have 3 big brothers... it was really nice to see other little girls. The boys in the class also came over, and we all took a picture together. My dad spoke to the class and asked them to be my friends as I grow older, and even asked them to be my cousins! I love that! I have special bonds with my cousins. One of the girls told my dad that "she looks like a baby doll"! I was so happy to hear that!
Much Love and Thanks to the Teachers and First Grade Class at St Patrick's school in Malvern!
Love,
Gianna

Home in time to celebrate Mom's Birthday!

I was discharged from CHOP yesterday. Mom dressed me in my Irish Princess outfit, a little outfit with green clovers and a green beret with a matching clover on it. I hope she took a picture of me in it!
Its Mom's Birthday today!!! I get to be home and celebrate with her! Willy, my nurse, is here to take care of me too. I missed Willy and all my homecare nurses.
Its good to be back in the swing of things. My Birthday gift to mom is stay healthy and home! Happy Birthday Mom!

Gianna is back in CHOP

I had to go back to CHOP on Saturday afternoon because I had a high fever from an infection. My heartbeat was high and so back I went. We went to the ED and I was admitted back onto the Pulmonary floor. I am feeling better and my fever went down. Mom and my brothers come to see me everyday. My brothers snuggle up to me, and it makes me feel soo much better. My brother Stephen made friends with a little boy who is also staying in the hospital.

Gianna is Home, sweet, Home.

I am home! I am home! Back in my own bed.
Dad and Mom picked me up at the hospital and brought me back home to the house. I forgot what it looked like, but once I heard all the people at my house, I knew I was home. The homecare nurses were there, the respiratory staff were there, my Grandmoms were there, and my brothers were there. A full house of people. I love being home! I am glad and truly relieved that I am home and feeling strong these days. Thanks to all the good people who took care of me at CHOP. I am still on oxygen, and still hooked up to wires and tubes, but I am looking pretty cute these days if I do say so myself!
Tonight as I go to bed, its like one of my favorite books (my brother's too), Goodnight Moon.
A little bunny (me) is getting ready for bed
In the great green room (my room)
There was a telephone (and mom is on it)
And a red balloon (from the Bayada Nurses)
And a picture of-
A cow jumping over the moon (my mobile)
Three little bears sitting on chairs (my brothers, but they are running)
Two little kittens (mom and dad)
And a pair of mittens (its really cold out today)
A little toy house and a young mouse (The armoire holding all my special things & the Nurse taking care of me at night)
And a comb and a brush (bows & ribbons for my hair)
And a bowl full of mush (that would be the tube feeding machine)
And a quiet old lady wispering Hush... (Grandmom)

Goodnight Room
Goodnight Moon
Goodnight Cow jumping over the moon
Goodnight light and the red balloon
Goodnight Bears
Goodnight Chairs
Goodnight Kittens
and Goodnight mittens
Goodnight clocks
Goodnight socks
Goodnight House and Goodnight mouse
Goodnight comb and Goodnight brush
Goodnight nobody
Goodnight mush
Goodnight to the old lady whispering hush
Goodnight stars
Goodnight air
Goodnight noises everywhere

I love being home. God Bless.

Cardinal Rigali's visit with Gianna from Sue Clark on Vimeo.

More pictures from my visit with Cardinal Justin Rigali

I had a special visit from Cardinal Rigali today

I had soo many visitors today, it was great! I wore a beautiful pink dress with a pink bow on the front, my hair was curled, and I was loving the attention from all of my family. I was held by soo many people today. I was tickled pink!

Cardinal Rigali walked into my hospital room and my Dad introduced him to my audience. And then he came over to me, he said I was "angelic". My dad explained how much of a blessing I am to the family. His Eminence talked soo nicely of me and how he loved my name, "after the great saint" he said. He lead my family into prayer and my Grandmothers were in their glory. Truly in His Glory.
I had such a great day today and I am so blessed to have Parents to have asked the Cardinal to come visit and pray over me today. Today I felt like an Angel.
Thanks Mom for asking Cardinal Rigali to come and bless me. Thanks Dad for sharing our story with Cardinal Rigali. Thank you Cardinal Rigali and Monsignor McIntyre for your prayers and support. It was truly an Honor to meet you today.

Gianna Loves You

I moved from the PICU to the Pulmonary floor. This is a step in the right direction. I hope the next step is home to my own crib. I am waiting for special visitors on Valentine's Day...my family!! My family and friends came and decorated room, it looks like I can host a Valentine's Day dance in my room. I even have some music, hope you like baby Bach! Check it out:

Gi Love's room on Valentine's Day from Sue Clark on Vimeo.

Visit with Gianna

Visit with Gianna from Sue Clark on Vimeo.

Gi Love's Birthday Weekend!

It was my first Birthday. I turned one on January 10, 2009. One of the first gifts I received was a blood transfusion in the hospital. I have been in CHOP's PICU for a week now and am on a ventilator. I came here because I caught a cold, and I can't fight a cold much like you, but I sure try. My parents and my homecare nurse sent me to the Emergency Department because I couldn't keep up the fight on my own, we had to call upon the experts to get me back on track. They intubated me, and I was able to breathe again. I have been here since, trying to get rid of the "rhinovirus" and want to get stronger so I can breathe with just the O2. My levels are not strong enough to come off the ventilator. So I spent my birthday at CHOP.

My family came and stayed with me all day and into the night. We played games, we sang songs, we colored, we laughed, and we gave lots of kisses.

My big brother was drawing all sorts of neat pictures on the window, and he was taking lots of pictures too.

I love when my brothers crawl into the crib and try to snuggle with me, they tell me I am the best girl ever! And then they kiss my face, lots!

My Daddy comes over and talks to me, and everytime I hear his voice say my name, I smile. My eyes light up and then I feel him holding my hand. I AM Daddy's girl, and so proud of it.

My Mom will walk into the room, and I know she is there to take care of me. She will put a pretty dress on me, curl my hair, bring my favorite toy, sing me my name, and kiss me. I miss when she holds me in her arms. I can't be held because of all the equipment, but I try to turn my head toward her when she is near.

My Grandmoms were there too! Grandmom Kay bought me a beautiful purple party hat for my first birthday! Purple is my Grandma Kay's favourite color. Grandmom Anne sings me a guardian angel song all the time, thats how I know its her. My Aunt came too... I love to hear my Mom and Aunt talk over me, I get the latest scoop and I see what its like to have a sister around.

The nurses, social workers, and staff at CHOP decorated my room with all sorts of decorations that said my name, and the #1 on it. They all came in to wish me Happy Birthday! They even gave me a blanket and pooh mobile as presents.

Everyone sang to me, and the "cha cha cha" was the best part of the song...

My Birthday gifts were good for me, I got my pink back.

My Mom's friends and co workers at Chester County Hospital's Maternity Unit held a big bowling party in honor of me and my birthday! I heard it was soo much fun, and all my friends showed up! Thank you ! Thank you! Thank you! for being so kind to my family, and to me. I am so happy it was because of me, you all got together and had a great time bowling, playing games, and catching up. You are so supportive of me and our good cause.

Thats a big deal to leave the Eagles game to come to my party, and I really appreciate it! I heard the Giants fans left the Eagles game early too ;).

The Chester County Hospital Maternity Unit

The St Pat's Boys


The amazing raffle prizes! Wow! How beautiful!

Thank you for making my First Birthday so special.

With Gracious Love & Gratitude for family and friends,

Gianna