You are Invited to my Birthday Bowling Party!

Mom's friends at work, Chester County Hospital Maternity Unit, is sponsoring Bowling for Gianna at The Bowling Palace in Downingtown, PA on Sunday January 11, 2009 from 3:30 to 5:30pm.

I turn 1 on Saturday January 10, and want to celebrate with all the people who have been soo special to me and my family this past year! So this is a great way to party, like its my Birthday!

The Chester County Hospital Maternity Unit are holding this event to benefit my care. Each ticket is only $13 dollars and this includes shoes and 2hrs of bowling! The whole family can come to this event! You can create a team, or just come by yourself! There are a limit amount of tickets, and I want all of you to come. So please purchase your tickets from any member from the Maternity Unit Council (including my mom).

Gianna's First Christmas

Christmas Eve we went to Grandmom Anne's house. All my cousins from my mom's side were soo excited to see me, as I entered the house my cousins announced "Its a Gianna Parade!" Everyone helped bring all the things I need to hang out for Christmas Eve. My brothers and cousins sang a Christmas Carol before they opened their gifts. They sang beautiful songs like Noel, Santa's Choir, Jingle Bells, and lots of songs ( I have lots of cousins). My Aunts and Mom held me all night until it was time to leave. We had to get ready for Santa. My brothers wished for a Wii this Christmas.
Santa came Christmas Day! We opened presents (the Wii came), and had breakfast. Mom gave me a bath, and wasn't really happy with the way I looked. So she called the pediatrician, and then we went to the local ER. We spent the afternoon in the hospital on Christmas Day. I was checked out and sent home around 5pm. We stopped by Mom's floor where she works to say Merry Christmas. And back home we went to settle in for the night.
It was a short visit to the ER, but things are ok now and will see the doctors in a few days to get checked on. Merry Christmas

Thank You!

Thank you to everyone who supported Blue Tulip Day on Friday, December 12. I am soo fortunate to have friends like you, and for your friends too! Word got out, and the stores filled up fast. I know many of you waited in line and many of you bought some really beautiful things. I know, because I was there too! Blue Tulip was my first Christmas shopping experience, and I was grateful to get out of the house to experience the event. I was there with mom and my brother, Brendan. I loved hearing all the people's voices and well wishes. You are all soo kind, and I Thank You for being soo thoughtful to me and my family. God Bless & Merry Christmas!

Blue Tulip Day for Gianna

DATE CHANGED:
Please join me and my friends in "Blue Tulip Day for Gianna" on Friday December 12, 2008 10am-5pm.
When you shop at Blue Tulip in either Ardmore, PA (Suburban Square) or Paoli, PA locations, 15% of your purchase will go towards funds for Gianna. With your help we can use these funds towards things like a special car seat as I grow older. Please mention my name to the cashier when you make your purchase. They have so many beautiful and fun things at Blue Tulip... I am so honored to be included in the shopping experience!
Thank you!
Love,
Gianna

I am fragile, handled with care

I came home last Friday from CHOP after a week of beginning the Ketogenic diet. This past Tuesday afternoon, my mommy & my homecare nurse thought I was too lethargic, and my stats were not normal over a long period of time. So mommy & the nurse, Willie, took me down to CHOP's Emergency Department (ED). Daddy was out on the road working, and so Grandmom came up to take care of my brothers while my mom could take care of me at the hospital. I was admitted and now I am back in my second home, The Seashore house at CHOP. The Integrated Care Team will look after me. I have a UTI, and they are doing other tests. I am in CHOP now, and its back to the routine where Daddy & Mommy travel back and forth from home (in Chester Co)& work to stay with me. Hoping I will be home again soon. I know my brother's miss me when I am not home, and I miss them.

Home Care: I receive homecare from a great team of nurses from Bayada. They really have saved my life on numerous occasions, and also keep a close eye on me at all times. They are soo loving and nurturing. They are the second best thing from Mommy & Daddy's care.
The Insurance company wants to take away my nursing care, they cut it back and feel that my mommy and daddy can do it all. My mommy and daddy are the best parents in the world and they are really great at taking care of me, but they can NOT do it all on their own. I am a very fragile child and all my doctors and nurses know this. I need to be watched almost every second because of my breathing problems, numerous seizures, and tube feedings with medications. Not ANYONE can take care of me, and my mommy & daddy need to take care of my 3 brothers too. So please pray that my Insurance company take Daddy and Mommy's (expedited) appeal to keep nursing homecare for me. This will make me happy and keep me as healthy as I can be.

Ketogenic Diet

We are back in CHOP this week because I started my Ketogenic Diet
Mom and Dad are taking classes each day this week at the hospital. Mom and/or Dad stay with me overnight here too. I should be going home on Friday. I am hoping this diet will help me have less seizures each day.

School Days...

Hanging with the boys!

You've Come A Long Way, Baby!...

Mom tells me this all the time... and has told me that slogan was used as an ad for a cigarette commercial back in the 80's. Ironically... here I am working hard to breathe and there are people out there with normal lungs and airway passages just trying to hurt them with cigarettes? I don't understand that?!
My mom and dad are soo proud of me these days, because I have come a long way! I made it to the Jersey Shore and went on my first family vacation over a month ago. I even got to the beach for some pictures! Smell the salty air, hear the seagulls go "eek", watch my brothers carry their boogie boards to the beach, my parents have cocktail hour, and even got sand between my piggy toes!
It was hard work, but my parents made it happen for me! I was always with one of them at all times. They brought all the machines and medicines so I could go on a true family vacation with them. We all gathered in Avalon, NJ at the beach for a family portrait. Avalon is where my mom & dad met!!! It was fun, but we had to go back home so that my brothers could go back to school! Its exciting to hear everyone in the morning get ready and hear the bus come down the street. I see Mrs Doherty come and take my brother to school and drop him off. Mrs Cantando comes over too. Its been fun being home and listening to all the sounds of home! I have many nurses who come to take care of me through out the day and night like Willy, Erin, and Ken.
Thank you for all your prayers, I truly feel your HOPE for me. It is because of your prayers and all these great people who care for me.. that I have come a long way... and a long way I want to go! Hugs & Kisses!

Pink is a good color for me.

Its been almost one week, and then it happened again. I couldn't breathe, my stats dropped, and mom revived me. She said I turned blue. I heard her talking to me, but it was hard to breathe, even with the oxygen tube. I tried my hardest to breathe, and with the help of mom and dad... I felt a little better breathing and then it wasn't soo hard. I turned pink again. Pink is good. Good for me.
My parents had to make the call to 911 and now I am in the hospital again. I am trying my best to be good for them, and sometimes its soo hard to breathe (with oxygen). They just Love me soo much. I Love them soo much.
I hope to go home tomorrow to be with them, and hope to go to the real "seashore" house with my family this week, because I heard the air is easier to breathe at the shore. Hope is what I have.

Home in time to Party!

On Saturday when I came home it was my big brother's 2nd Birthday! I got to celebrate it with the family!! I am all set up at home in my crib, and lots of people can hold me. I am still attached to many wires and tubes, but there's nothing like being in the same room and hearing my family sing Happy Birthday (Cha Cha Cha) in the dining room! The next birthday party is Stephen's in December, and then after his, it will be my 1st Birthday Party! I want to have mine at home too!

Home away from Home: The Seashore House at CHOP

It was a rough evening for me yesterday being my first day home from the hospital. I had a great day at home with Mom and Dad. A nurse came to take care of me and mom went to work. As the evening went on, I found it difficult to breathe. The nurse saw me having difficulties and called 911. The EMTs tried to suction a mucus plug out of me, and then they took me down to CHOP ED. It was a good call, said the Docs.
I am back to see my old friends on 4 WEST, and breathing well. I am looking to go home for the weekend, and stay home for longer than last time. Your prayers are working for me... but can you send some Martinis to my parents at home?! ;) Dad likes Sierra Nevadas too.

In Aunt Joy's Arms

Gianna from Joy Macdonald on Vimeo.

I am back home!

I am back home now! Home with my family! I am 7months old and I am happy to be back home with the gang again! I thank all my nurses and docs at CHOP. I will miss Terrell.
I have lots of windows here at home to look at!

Trying to catch a break

I have been at CHOP since June 22, 2008. Its been about 7 weeks. I have been in the Seashore house for the past 3 weeks. My Mom visits me everyday...its the one thing I look forward to everyday.

I have a Rhino Virus (head cold/fever). I have a fever, and more mucous secretions. The fever increases my seizures and so they are non-stop. I am extremely uncomfortable and very irritable. I realy like it when my Mommy holds me in her arms, because thats the only thing that makes me feel comfortable. I thought the nurse at the hospital was going to move me closer to the window, and she forgot to do it. I have a new roomate, and she has the window. I am hoping I get the window soon.

I had a recent visit with my Aunt Sue Anne and her friend Joy who used to work in the NICU at CHOP. She was very cautious with me when holding me and knew how to hold me just right so I take my pacifier. It was a really nice visit. Here are some pictures they took of me.

Please pray that my fever goes down, my brain heals and seizures go away, my mucous secretions thin out, I can breathe on my own without oxygen tubes, my G-tube area's infection heals, and that the pneumonia brewing in my left lobe, disappears. Please pray for a miracle to heal me of all my ailments. And Please ask your little ones to pray for me too, the Lord listens to your children's prayers with special ears. I will fight this out, knowing you are praying for me.

I turned 6 months!

Party like its my Birthday!

My Dad surprised me with a cake and party on my 6 month birthday! My cake was beautiful! We had pink party hats and decorations! My Dad knows how to celebrate! I was soo tired it was hard to keep my eyes open, but I heard them sing to me, and Dad gave me lots of birthday kisses. I even made a Birthday wish... and it soon came true, I can be held in my Dad's arms again, now!

I am trying to get better and with help of everyone's prayers, and hard work at the hospital. I hope to soon come home for some summer fun.

I moved out of the PICU: its a bitter sweet because I really loved my nurses and my room there, but am glad that I am getting a little better. I moved into the Seashore House at CHOP. A group of physicians will watch over me and try to get the "big picture" and hopefully get me home soon. And now my family can come and hold me. I love to be held in my mommy and daddy's arms! and my brothers can crawl into the crib with me again, and play with me. Your prayers work, and I hope to be home soon. Thank you!

I want to go home.

Its been 2 weeks I have been in the hospital here at CHOP. On 4th of July I was moved to the PICU because I had a seizure that lasted 1 1/2 hours and I did not recover well from it. They put an NP tube in me to help me breathe. I am able to breathe on my own with the NP tube but the draw back is that no one can hold me. My family spent the day with me on the 4th, and the doctors talked to my parents about my condition. My parents asked the medical team to get me better so they can bring me home. Please say some prayers that I heal enough so I can go home to be with my family.

Gi is back at CHOP

I have seemed to pick up a cold. I am congested, and need oxygen to help me breathe.
Saturday night the nurse came to take care of me, saw a lot of white mucous, and I was put on oxygen because my stats would drop into the 60s when they took me off of it.
Mom and Dad took me to the ED at CHOP on Sunday, hoping they could fix the problem and send us all back home. Well mom and dad went back home at 10pm, but they kept me....because I only do well when I am on the oxygen. Its Tuesday, and I am in the Neurology wing at CHOP. Mom comes, everyday, to be with me and holds me through my seizures. She has to get my brothers to camp in the mornings, and then reschedules her work shift before she can be with me.
Today my friend and old roomate, Liam from Long Island, left the hospital. Liam was my roomate a month ago when I came in for having too many intense seizures. Liam has been at CHOP for months, he is 9 months old, and there is nothing else the doctors can do for Liam. Please pray for my friend, Liam, and his family.
Thank you for all your prayers.
Love,
Gianna

Prayer Day for Gianna

My Big brother's class had a "prayer day" for me on Friday. When we arrived at Henry's school I was excited, and all the children in the classroom wanted to hold me. I didn't mean to make such a first impression, but I went into having my seizures. After about 10 mins I came through and started to enjoy the festivities. Lots of children and their parents in the 3rd grades were there lead by the teachers. Pink table cloths, pink roses, and flowers covered all the tables. My brother's teacher lead the celebration. The children sang a song to me. My Dad got up in front of everyone and Thanked them for such a nice celebration. All the kids in the 3rd grade wrote a little prayer for me.

Their parents put it in this beautiful book. They also made me a picture frame with all their finger prints on it.

This is what they wrote:

Dear God, Help Gianna through her life. Thank you for giving her to us. I Love You Gianna, Henry.

Dear God, please welcome Gianna in to the world and St Patrick's family. We hope she feels better and she is so blessed to have a loving family. God Bless Gianna & her family. Love, Shannon G.

Dear God, Please let Gianna enjoy the bright sunshine and beautiful flowers God bless baby Gianna and her family. Love Riley M.

Oh God, Please help Gianna with love and bless her. Love, Jake B.

Dear God, Help Gianna feel better and help her grow up so she can play soccer someday. Love, Grace

Dear God, Please help poor baby Gianna and to get well soon. Help her family and let her go on without this sickness. Sincerely, Justin D.

God Bless baby Gianna my friend and classmate, and the family. Love, Alexandra C.

God Bless Gianna. That you have a good and healthy life. With God love, Matthew C.

God please watch over Gianna and keep her safe. I will keep her in my prayers. Love Ally M.

Dear God, Please help Gianna get better soon and watch over the family. Love, Alex M

O God Please take care of Gianna. Love, Kennedy

Lord, let her walk with you although her steps are small stay beside, hold her hand and never let her fall. Amen. God Bless Gianna, my friend, Henry and the family. Love, Jimmy K.

Oh dear God Please help beautiful Gianna get well soon. Please bless her family. Love, Allison

Dear God If you can hear me please please please help baby Gianna be strong and healthy and God bless her parents and brothers, and most of all Gianna. Love, Greyson

Dear God, we thank you for the onderful blessing of Gianna as she grows that she will follow your footsteps. Love, Meghan W

Dear God, Please help Gianna and her to feel better and maker her grow close to you. Sincerely, Danny

Dear God, Please help Gianna to feel better soon. love, B

Dear Gianna, Be strong little one. You are loved lots and lots. God Bless you. Love, Jack

God Bless baby Gianna, my friend and classmate, and her family. from Emily

Gianna's Prayer. God Bless Gianna. Sam

Dear God, Please help Gianna to feel better soon. Please send the Holy Spirit to be with her. Zach

Dear God, Please let Gianna live a long and healthy life. Gillian

Dear God, Please help Gianna to get lot of special love from you. Also bless the family everyday. Love, Andrew

Dear Lord, Please continue to keep Gianna safe, healthy, and loved. Love Sarah B.

Dear God Please help baby Gianna and her family. Love, Dedon

Dear God, Please watch over Gianna. keep her safe and close to your heart. Love Kathryn

Dear God, Please watch over the family, especially Gianna. love Chris

Dear God, Please care for Gianna. She is a very special angel. her family is a loving and kind family. love, Maria

Dear God, Please love and help Gianna so she can feel better soon. From Matt C.

I hope Gianna and her family are happy and I will say Our Fathers. Erin

Dear God, Please help Gianna to get better soon. Love, Keegan

Dear God, Please help Gianna with your Holy Spirit. Regina

Dear God please watch over the Gianna and her family and keep her safe. xoxoxoxoxoxoxoxoxo Jimmy S.

Dear God, Please help Gianna to grow up to be healthy and strong. Meghan S.

God Bless Gianna and her family. Please keep them close to your heart. Love Annie

Dear Lord Please help Gianna get better. Patrick

Dear God Please help Gianna get better real soon. Your friend Matt M.

Gianna, O God would you please say a prayer Gianna she really needs our prayers. Love, Kate Z

Dear Gianna, May God Bless you and your family. Love Patrick N.

Dear God, let Gianna be safe and live a good life and make sure she's okay. Love Joseph J.

Dear Gianna, God Bless you, I hope you feel better, I hope your safe. Love, Gigi

Dear God, Please help Gianna feel better. Love Brendan S.

Dear God, Please help baby Gianna protected. I hope she gets better. Amen. from Annina

Dear God, Please watch over Gianna. Love, Garret J.

Dear God, Please bless Gianna and her family. Help her to feel better soon. with Love, Nicole M.

Dear God Please protect this baby and i will pray for this baby. I hope the disease go's away. And I will pray for you. Garrett Y.

Dear Gianna, I hope God keeps you close to his heart. God bless you and your family. with love, Colleen

Dear God take care of baby Gianna, keep her safe and close to you. Amen. Love, Matt B.

Dear Gianna, I really hope you feel better soon. I pray for God to help Gianna to feel better soon. Love, Samantha C

Dear God, Please help Gianna to get all the help she needs. Love, Joey C.

Dear God, Please keep Gianna safe and heep her close to your heart. Love, Mary D.

I hope God is with you and protect you. I hope you are okay. Love, Quinn.

Dear God, Please keep Gianna close to you. Please keep her safe. Please help her get better soon. Brandy

Dear God, Please look over baby Gianna grow out of the Aicardi. God Bless baby Gianna. Amen. Rilley M

Jesus please protect the baby and watch over her. and help her grow out of it. from Rachel H.

Dear God can you protect little Gianna. God can you bless her so her get better. love, Michael G.

Please protect this baby. stay close to her over the night and day. Love Chris M.

Dear God, Please bless Gianna and protect her. Please heal Gianna and keep her in your hands. Sincerely, Walter

Oh God, Please protect my best friend's little sister. Please keep her safe from anything that gets in her way. Love, Damon

Me and my family

My running Aunts

This is my Aunt Kate (dad's sis) and my Aunt Sue Anne (mom's sis), they like to run. And they like to run on muddy trails where you have to hop big logs, cross rivers, dodge boulders, run through the woods, cross pasteurs, up hills, down hills, and to cross a finish line. They are crazy fun!

My 1st Mother's Day with Mom & Grandmom Anne

My brothers and I got my mom an iPod for Mother's day. We know she loves to listen to music and sing along to old songs. It was a nice day. Dad made breakfast, fed all of us, including me, and we also went to church. We then went over to my Aunt's house for dinner. All my Aunts, Uncles, and Cousins on my mother's side were there! I was held by Grandmom Anne, and my Aunts all evening. My brothers and cousins played at the park across the street and in my Aunt's exercise room. She has a bar, and a trampoline there.. here are some pictures of my brothers and cousins! We were rooting for the Flyers too! I need a pink Flyers outfit to go along with my brothers' outfits! I can't wait to get kisses from my Grandma Kay! She was visiting My Godmother, Mary.

Happy Mother's Day to all the Mommies in the World!