Please Help!!!

I need the help of anyone that is willing and able. I am going to run the It's My Heart - Noah's Legacy 5K on February 21, 2009. This 5K is to raise money to help It's My Heart fund it's support and advocacy programs for Texas Children's Hospital cardiology patients as well as all of those children that have congenital and aquired heart defects. I have posted the invitation letter below. Please sponser me in my efforts to give back to the program that has given so much not just to me, but to the entire CHD community... I don't usually ask for help like this...I hate sending my kids out on fundraisers for school, etc...but this is a program that is doing something to make the whole world a better place for a group of kids that have no choice in how their bodies are treating them.


Dear friends,

According to the March of Dimes, about 40,000 infants (1 out of every 125) are born with Congenital Heart Defects (CHD) each year in the United States. The defect may be so slight that the baby appears healthy for many years after birth, or so severe that its life is in immediate danger. Studies prove that CHD's are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from CHD in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the US due to CHD. Charges for care exceed 2.2 billion dollars, for inpatient surgery alone.Most people know someone who has been affected by Congenital Heart Defects or Acquired Heart Defects. On February 21, 2009 I will be helping It's My Heart raise awareness about the devastating affects of CHD at the National IMH CHD Awareness 5KRun & 3KWalk - Noah's Legacy. Funds raised through the IMH Run & Walk will support national awareness and help to provide comfort bags and programs to families while they are hospitalized throughout the USA. My personal goal is to raise $200.00 . Your support and donation of $100, $50, $25, $10 will help take a stand against the #1 birth defect and killer of children. Not only will you help me achieve my goal, you will also help It's My Heart make important advances in research, support and awareness of CHD. The IMH CHD Awareness Run & Walk is quickly approaching, so please make your pledge today. Thank you in advance for your support of my journey with CHD. Together we will make a difference!

For more information on It's My Heart visit www.itsmyheart.org.

From the heart,

Amanda Pennington

Yes! I am happy to support your efforts in the CHD Awareness Run & Walk! You can count on me/us for: _____$100 _____$50 ______$25 ______$10 _____$Other

Please make check payable to It's My Heart and return this form, along with your check to: It's My Heart19728 Saums Rd.PMB# 137Houston, TX 77084

Please include "Team Ethan James" in the memo of the check.You can also use Paypal, a quick and easy way to donate. Please include in the message my name and CHD Run & Walk. Just go to www.itsmyheart.org and click on "Donate".

ALL DONATIONS ARE TAX DEDUCTIBLE



If you would like to use this form, highlight it with your mouse and then choose print selection from your print menu...

Merry Christmas!!!

I can't believe that we have survived with even the small shreds of sanity we have left this year, but here we are with a healthy-as-he's-gonna-get baby. We have learned many lessons this year in faith, love, friendship, and letting-go. Some of these lessons have hit us square between the eyes. Some have ripped through our hearts. While others have been a soft awakening of things that we once knew but forgot at birth. I am grateful for the past year and all that it has offered. I am so happy to have my family together and all of my kiddos doing well. True friends are once again important to me. I wouldn't trade the lessons learned and the empathy/compassion gained this year for all the heart healthy babies in the world. I never asked why this happened to Ethan. I just know that it did and it is making us all stronger. I wish that he didn't have to go through everything that he has gone through and will go through, but I can look back at this point and say that while the heartache for him is still raw, the lessons learned from our struggles this year are starting to outweigh the pain. I've always heard that Heavenly Father doesn't put more on us than we can bear. I can now say that this is a false statement. He puts on us what He needs to, and makes us strong enough for the journey. Two years ago I could not have sat in a hospital room and watch my baby get worse everyday until they could work him into a surgery that he might not survive. Now, through the strength that Heavenly Father blessed me with (because it wasn't there before I asked Him for it) I can say that I did that, and would do it again in a heartbeat if I had to. I don't want to, but I can...

I hope that everyone can hug their own kiddos a little tighter this Christmas from hearing Ethan's story. If he can help just one kid get a hug, or an echocardiogram then his story would have done it's job. And all of this will have a purpose.

For anyone who has wanted to do something for my family...please spread the knowledge around that Congenital Heart Defects are (forgive the pun) heartbreaking. They are an underfunded branch of heart research and the most common birth defect in the world. More kids die of CHD than all kinds of childhood cancers annually...awareness leads to action. And these little heart babies need quick and decisive action now...

Prayers for Abby

I learned a few minutes ago that one of Ethan's "friends" from the CVICU is back in the CVICU today. She had surgery in October and has had several since then. She hasn't been home ffom the hospital in all that time and had just been moved down to floors a few days ago. Her parents are strong but this setback has got to have them discouraged. Please keep Josh, Mindy, and Abigail Williams in your prayers as they truly need every single one they can get. They are a special family with a beautiful little Fancy Abby...

Cutest Baby in the World!!!

So...I have finally figured out how to get the pictures right side up and I've added a few more that I think are adorable. You can almost hear him laugh and "talk" when you see them...

"I'm totally nekkid...and I like it! ;0)"
"You guys are funny!"

"Why are you shaking your keys at me? Okay...I'll laugh"

Sweet boy...this is how he looks all the time...just a sweet little baby...

All ready for a bath!!!

Another Good Appointment

Monday was Ethan's one month follow-up appointment. His chest x-ray was clear! Lasix is doing its job too well, so we only have to take that med once a day now instead of twice. Dr. Altman said that next appointment we will most likely take him off of Lasix completely and then that will leave us room to adjust his enalapril if needed. He will be on amoxicillin until he is five because of his aspleenia...and baby aspirin for life...

The best news of all is that we don't have a cardiology appointment until March 2nd!!! We have never gone more than four weeks without a scheduled appointment and so we are so excited that Ethan is doing well enough to go that long without his cardiologist getting nervous.

We also hit a milestone of sorts this week. Ethan is now six weeks post-op. This means that we can have tummy time again! We can also pick him up by scooping him under his arms instead of one hand under his back and another under his bottom. He loved playing on his tummy yesterday and is so strong! His head popped right up and he is reaching for toys so much better. He really is our little miracle man!

On Wednesday he had his four month shots. I know...they are late, but we had to wait until six weeks post-op for immunizations...he weighs 13 lbs 12 oz!!! He is on a normal growth curve...something that we were told not to expect. He is 75 percentile in his length, 25th in his weight, and 50th for his head circumference...the blessings just keep coming.

A Very Good Thanksgiving

Okay...so I know that Thanksgiving hasn't even gotten here yet but we are having company and my life's too hectic to chance missing posting that day. I ran across a story/poem today that exactly fits to how I've felt since February. Every Thanksgiving I try to find one thing to focus on being Thankful for. This year...I'm thankful for Holland.

WELCOME TO HOLLAND

byEmily Perl Kingsley.

c1987 by Emily Perl Kingsley.

All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland.'Holland?!?' you say. 'What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say 'Yes, that's where I was supposed to go. That's what I had planned.And the pain of that will never, ever, ever, ever go away...

because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sweet Elise

Elise had a project for school that included decorating a paper turkey any way that you want. A couple days after that assignment was given, the teacher came back and said that she wanted a story about the turkey. Elise had already decided to decorate her turkey like a heart surgeon. Here is her story...pictures soon I promise!

Dr. Fraser-gobbler was wandering around the operating room when a baby turkey was brought through the door. His name was EJ. EJ had congenital heart defects. This means that EJ's heart did not form correctly and that he needed surgery to fix it. Before EJ was born, his mom had a lot of tests to see if EJ's heart could be fixed. Dr. Fraser-gobbler was the best pediatric turkey heart surgeon at Texas Turkey Hospital. He said that EJ's heart would be hard to fix but that he would try. EJ's surgery lasted 9 hours. EJ was put on a special machine called the heart/lung bypass so that Dr. Fraser-gobbler could fix EJ's heart. During EJ's surgery, Dr. Fraser-gobbler got a nurse to call teh waiting room to tell his family how the surgery was going. EJ's family was very nervous but was happy that EJ's heart would soon be fixed. After EJ's surgery, he stayed in a special part of the hospital called the CVICU. The nurses took good care of EJ. His family stayed with him as much as they possibly could. After only 4 1/2 days, EJ got to leave the CVICU and go to a regular room on the 15th floor. After only three days in this room, EJ could leave the hospital. He had to stay in Gobbletown for another week, but then he could come home. I am very happy that Dr. Fraser-gobbler fixed EJ's heart because he is my little brother.

Okay...without me crying like a baby over this sweet story again. I would like to point out that she asked me for some technical terms, explanations, and timeline questions, but she wrote the meat of the story herself. What an amazing, sweet child she is. I am so pleased that she is using this opportunity to tell people about her brother. I can imagine that it is wonderful therapy for her to get it out. I know this blog has done wonders for my mental health. The prophet was so right when he told us to journal. It is a mental health thing.