Tuesday, February 23, 2010

Celebrate Life

Jamie and I went to the Paul Cardall "Celebrate Life" concert in Salt Lake City for V-day this year. Paul is a local musician with a congenital heart defect. After a year+ on the waiting list, he had a heart transplant in September last year ( His surgeon is the same one that performed both of Tyler's surgeries.). This was his first public performance since the transplant. He is an excellent pianist and Jamie and I had a great time.

We doubled with some friends in our ward who recently found out that their baby is going to have HLHS, like Tyler. It's amazing how many people CHD's affect, but it's even more amazing that medicine has progressed so far that these conditions are treatable. Now if my brother Mike, who is a biomedical engineer, would just invent a cure for Tyler's condition :)

Only negative from the evening - We went to Texas Roadhouse for dinner beforehand and then topped the evening off with cheesecake from Cheesecake Factory afterward. It was great in the moment, but I ate way too much and had horrible indigestion throughout the night and the next day. I guess it's another sign I'm starting to get old.

Monday, February 8, 2010

CHD Awareness Week!

This week is congenital heart defect awareness week. I still can not believe that my family has been affected by this terrible disease. Every day I have hope for my sweet little Tyler who was born with a severe heart defect. Just to give you a better idea of how many kids are affected by heart defects here are some statistics:

*Every fifteen minutes a baby is born with a CHD.

*Congenital heart defects are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).

*Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.

*This year almost 40,000 babies will be born with a congenital heart defect.

*In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.

*From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!

*There is not yet a preventative cure for any type of congenital heart defect.

*Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

Hopefully by helping to bring awareness we might be able to find cures and give new hope to all of the sweet babies who have to fight and struggle so hard to live.

Here are a few pics of our heart baby over the last 11 months of his precious life!! We love you!

Tyler - March 6 ,2009, just a couple of hours after he was born.

March 9, 2009 - First open heart surgery, the Norwood Procedure

Recovering from the Norwood in the ICU

Our little blueberry - post Norwood. Feeling good!!

July 29, 2009 Tyler had his Glenn Procedure. Poor little guy - trying to recover.

Happy to be back home with no surgeries for a while.

Our sweet little Tyler at 10 months - happy as can be!!

Wednesday, February 3, 2010

Just a little update

Everything has been going so good here in the moffitt household! By good, I mean that we have been staying away from the germs! All of the kids have been pretty healthy so far this winter season. Steven had some asthma trouble and a weird infection in his neck, but other than that we have all been well. I keep my fingers crossed every day that we don't bring anything horrible in this house so that we can keep our little Tyler as healthy as possible. I think a few prayers and some blessings have helped as well! The kids still love school and are doing great! kaylin loves going to the library for "story time", they also do singing and some activities and give homework. I do this once a week and try to keep Tyler away from the kids. I think it has been going well so far. Tyler has been doing so much better since our last post. He is eating better, but still hasn't gained any weight, over all he is doing so good!! I am so grateful every day, grateful for all that I have and thankful for all that we have been blessed with!!