Sunday, December 26, 2010

Giving is pretty awesome!

Oh how I wish I can give the Giving is Awesome session to each family that was nominated, because I think every family that was nominated is just as deserving, but I could only pick one to be fair from the 9 families that were shared with me...

First of all, the folks that nominated these families.... Wowza to you.. To go out of your way to write me and give somebody else wonderful memories of their own.. You are just as awesome... Thank you, Thank you , Thank you! you are a true gift of awesomness!

Congratulations to Shannon and Anthony and their beautiful 6 children. Your sister Rachel had said some pretty amazing things about you, and also shared some of your story with me...,

Hi Gina,
I'm writing to nominate my sister Shannon and her beautiful family. They have been through so much in the last few years and I truly feel that they deserve and would treasure your amazing gift of photography.

Shannon and Anthony have 6 children between the two of them. Their youngest son Anthony was born on July 18, 2005 and had problems from the start. He was born with his intestines outside of his body. The medical terminology for this is Short Bowel Syndrome (Short bowel syndrome (SBS, also short gut syndrome or simply short gut) is a malabsorption disorder caused by the surgical removal of the small intestine, or rarely due to the complete dysfunction of a large segment of bowel. Most cases are acquired, although some children are born with a congenital short bowel. It usually does not develop unless a person has lost more than two thirds of his or her small intestineu.
He was in and out of surgeries immediately and had to take nutrients (TPN - Total Parenteral Nutrition) intravenously and sometimes with these nutrients, there is too much glucose which can cause liver failure. This happened to Anthony. He then received a liver transplant at 11 months old.
At age 2, baby Anthony had an Ostomy takedown and a Uteroplasty, to repair the kidney line to the bladder. During this 9 hour surgery, patients have to be grounded with a grounding device because they use a cauterizing gun to burn through the abdomen. It requires a pad, placed underneath baby Anthony's rear, and then plugged into an outlet so the electrical current goes to through the pad and to the outlet. The next morning, Shannon went to pick Anthony up and his back was stuck to the blanket and they found the 3rd degree burns in the exact shape of the grounding pad. The pad wasn't grounded correctly. It took almost a month for these 3rd degree burns to heal, with Anthony in excruciating pain at times and unable to lay on his back or sit-up.
Most recently, Anthony caught a virus because his immune system is depressed. This led to a disease called Auto Immune Hemolytic Anemia. This means that his immune system is attacking his own blood. They tried to treat this with a series of steroids but baby Anthony didn't respond. They doubled the steroid treatment but still no response from his overworked little body. So 2 weeks ago, they inserted a pick line near his armpit. Last week they began the new medication, Rituximab (also used to treat non-Hodgkin's lymphoma). This will take his immune system down completely along with numerous side effects, like muscle and bone aches, extreme hunger, and nausea. Anthony is 5 now and in school but because of the new medication, and his immune system basically non-existent as the medicine begins to work, will have to be home schooled now. This broke his little heart as one of the most positive things in his short life, school, was now being taken away. The medicine is given 4 times this month. After this is over, they will re-test and see where Anthony stands.
Shannon and Anthony's other children ~ Alicia, Johnny, twins Mark and Andrew, and Carisma ~ have been through a lot as well with all of this. It takes its toll on them when mom and dad are gone so much and their brother is in pain and sick so often. They are an amazing family and their faith in God has been what has helped them the most through this difficult journey. They know that God doesn't give them more than they can handle and if you talk to them, you wouldn't know how much their struggle affects them in their daily life as they are always looking at the positive side of things.

Thank you for hearing our story. It feels good to write about it and know that someone is listening and wanting to hear our story. Thanks for what you are doing Gina - it's an amazing gift!



Thank you so much Rachel, I think you are pretty awesome! ;)


Kelly said...

Oh wow, this is so amazing. Thank you so much Gina for everything - you are fantastic to give such a special, timeless gift to a family so deserving! Thank you Gina!

Kelly said...

Wow Gina, thank you so much! You are so amazing for doing this for such a deserving family ~ can't wait to see your beautiful work =)

Anonymous said...

What a great family! When I was 2 my mother lost the majority of her small intestines (she only has 18 inches left) so growing up she received TPN every night.