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.