Tuesday, March 24, 2009

You know you're a heart kid ...

... when one of your afternoon activities include playing with medicine syringes at the kitchen sink:

Sunday, March 22, 2009

How sweet it is

In my opinion, life doesn't get much better than when your child returns to the child you knew before double ear infections turned him into an amoxicillin-resisting grumpy-head.

We happily threw away the amoxicillan bottle this morning after his last dose, which probably makes his dentist the happiest of all. Many M&M's were consumed to help the medicine go down ...

Welcome back, Luke. We hope you stay a while!

Thursday, March 19, 2009

"Congenital Heart Futures Act" Introduced to Congress

I will be the first to admit that politics, current legislation and public funding do not take up too much space in my brain these days. But when I see a "Help to Pass Congenital Heart Futures Act!‏" subject line, you can bet I clicked open that email!

For the first time in U.S. history, Congress is addressing the needs (present and future) of congenital heart kids (and adults!). The legislation's purpose is two-fold. First, it will "...increase research surrounding the cause, diagnosis, treatment, prevention, long-term outcomes and barriers to care for all CHD patients." Secondly, it seeks to "promote CHD awareness by creating a comprehensive public education and awareness campaign."

Increased research, awareness and funding for the 1.8 million people like Luke fighing congenital heart disease? Sign me up!

You can help me get this legislation passed. Please email your Senators and Congressman and ask them to become co-sponsors of this legislation. Here's how:

  1. Go to http://www.senate.gov and http://www.house.gov to look up your representatives and their email address.

  2. Draft your email - Here is a template to get you started.

    Dear [Lawmaker name here]

    I am writing as a member/supporter of the The Congenital Heart Information Network to ask for your help in making a brighter future for all those born with heart defects. Yesterday the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570) and help all those born with heart defects live longer, healthier lives.

    Congenital heart disease is this country’s number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.

    [Insert 2-3 sentences saying why you care – some examples:

    From an adult patient: Since being born in 1956 with a complex heart defect, I have undergone 4 open heart surgeries and am currently on disability due to my heart. I have struggled to get the information and care I need to take care of my rare condition, as doctor after doctor answer my questions with, “we just don’t know”. The federal government should use my tax dollars to do the research to get those questions answered, so that both today's adults and tomorrow's children get better care.

    For a parent: My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.

    From a health care provider: As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.

    To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.

    Thank you in advance for your help in securing a future for all those living with congenital heart disease.


    [full mailing address]

  3. Make your letter personal to you. The template has a place to add two or three sentences (more is NOT better in this case!) about why this legislation matters to you personally, and offers some samples to help get you started.

  4. Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.
That's all there is to it! Easy and potentially life-changing for so many children and families. Thank you!

Tuesday, March 10, 2009

Oh. Gotta pray

Luke's most recent catchphrase is "Oh, gotta pray." This usually pops out of his mouth at mealtimes, but not just at the beginning of mealtimes. He requests our prayers for each item on his plate and often what's in his cup. Ketchup, corn, nothing goes un-prayed for. And believe us, he will remind you if you forget!

The last few days, these prayer requests have expanded beyond food items, to our cars, his motorized school bus and the cat. Now, I know Luke is two and cannot theologically reason with the best of them, but the more I think about it, the more I'm wondering if this is exactly what Jesus means when he tells us to "pray without ceasing."

To be honest, my first inclination was to teach Luke that we don't need to pray for every single food item, or that we can pray for people instead of objects. But the more I stop with him to pray for school buses and cats, the more I realize that this is how God wants us to pray! Yes, we will continue to pray for the "big" stuff: Luke's Fontan, his heart health, our families and friends, those suffering from poverty, etc...but why stop there? It's so easy to forget to give Him praise for the beds we sleep in, our refrigerator full of food, the internet that connects heart families.

My prayer today? That Luke's desire to "gotta pray" would not be a passing catchphrase. That his child-like faith would grow with him and God would continue to use him to teach these old dogs new tricks!

And a prayer request for all YOU out there ... Luke has a double ear infection, nasty cough and a case of the grumpies. Would you pray that he fights this bug without any complications? Thank you!

Thursday, March 5, 2009

Running in circles

Luke's friend Marcus came over to play on Tuesday and one of the activities they chose to do was chase each other around our dining room table, stopping only to yell "meow" at the cat sitting innocently on a dining room chair.

Luke, having what I call an elephant's memory, decided he wanted to chase me around the dining room table last night. Around and around we went, taking turns being the chaser and chase-ee. We probably played this game for 15 minutes and except for a few "peek-a-boo" breaks under the table, the movement was non-stop. As I carried Luke up to the bath, my heart beat quickly with both exertion and gratitude.

Cardiovascular endurance is just one of many question marks you live with when you have a child with a congenital heart defect. No one can predict how these single ventricle kids will tolerate exercise. The research is typically vague: "At one end of the spectrum there are children with Fontan circulations who have participated in competitive sports such as swimming and gymnastics .... Other children may have significant limitation in their capacity for exercise. Most children fall somewhere in between the extremes." Our cardiologist has told us that if Luke is limited, it will be when he's a bit older. He should be able to play little league baseball and YMCA basketball, ride a bike and play tag at recess. He may breathe a little harder or tire out a little faster, but we don't have to stop him from running or playing.

Honestly, I would rather do without question marks, but would playing chase with my son be as sweet without them? It may have just been another activity to pass the evening hours. Instead it was a moment where I felt God's Mercy and Goodness poured out on our family. Thank you, Lord, for the question marks in our lives!

Luke and Marcus pondering life's Question Marks in the backseat of my scorchin' hot minivan.