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.
Tuesday, April 7, 2009
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
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
Subscribe to:
Posts (Atom)
