Monday, March 23, 2009

Update

I'm going to make the update about Keegan short today because there is something important to include at the end. First of all, it's apparent we don't have many cool friends because only a handful of y'all have posted comments to his pics and guestbook! What are ya waiting for? As cousin Brittany & her hubby Clint said, you don't want to miss out on be one of the COOL people!

Keegan's been TPN-free for three nights now. He seems to outwardly be handling the feeds well enough (no vomiting or massive increase in diarrhea), still he has lost weight consistently for the last few days. We're not going to freak out yet, just give him a little bit more time to see how he does. We are busy getting things in order to be discharged TOMORROW!! Yeah!! We secured a short-term, furnished apartment about 1 mile from the hospital that is absolutely beautiful...AND cheaper than a hotel! The few cheaper, hospital-run places we looked into were all shared facility places (i.e. you get your own bedroom but have to share bathrooms, kitches, tv areas, etc). Fine if it were just Gray and me but totally not acceptable for an immunosuppressed, neutropenic kid. The apartment we were able to get is certainly nicer than any apartment and most hotels where I've ever stayed. The only other odd thing with Keegan is that he doesn't seem to be responding to his GCSF again with his ANC dropping way into the severe range in between doses. Again, we'll just wait and see.

Now, for the important part of this update. The Congenital Heart Futures Act was introduced in both houses of Congress last week. If you get email updates from Keegan, you will get this twice. (If you don't yet get email updates from Keegan, email him at keeganharrison@yahoo.com to be put on the update list.) The Act guarantees more research funding for congenital heart defects. The letter below explains more. Please take a few minutes to write your representatives in support of this Act. You can cut and paste the below information into emails to spread the word and to write your Congressmen. Keegan thanks you from the bottom of his spankin'-new-no-rejection heart! ;)

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Thanks to all your letters, emails, and visits, and the efforts of the National Congenital Heart Coalition and at the American College of Cardiology, last week the Congenital Heart Futures Act was introduced in both houses of Congress! In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi. In the House, the bill's lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida. We are thrilled that this groundbreaking piece of legislation has already received bipartisan support.

To learn more about the bill visit: http://durbin.senate.gov/showRelease.cfm?releaseId=309944

However, we still need your help. Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House.

It just takes a minute - here's how you do it:

1) Go to http://www.senate.gov and http://www.house.gov/ to look up your representatives and their email addresses. (In Texas the Senators are Kay Bailey Hutchison and John Cornyn.)

2) Draft your email - (Templates included below)

3) Make your letter personal to you. The template has a place to add two or three sentences about why this legislation matters to you personally, and offers some samples to help get you started.

**NOTE FROM THE HARRISONS: We have included a paragraph about Keegan if you would like to include it in your letter.
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! Please forward this email to friends and family to request their participation.

TEMPLATE:

Dear [Lawmaker name here]

I am writing to ask for your help in making a brighter future for all those born with heart defects. Recently, 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. However 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.

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[Insert 2-3 sentences saying why you care - your own story or here's one about Keegan:]

My friend (grandson, neighbor, great-grandson, nephew, cousin, etc), Keegan, was born with a severe congenital heart defect and underwent 10 hours of corrective surgery the day after he was born. Still, he had to be placed on an extensive form of life support for nearly a week and ultimately needed a heart transplant to survive. He is currently the smallest and youngest heart transplant recipient in Texas. I want to be hopeful for his future, but right now I know there is a severe lack of research, awareness, and resources available to enable him to thrive as he gets older. Please help me help my friend to survive and become a healthy, productive American.

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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.

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

Sincerely,

[name]

[full mailing address]

[email]