Landon's Update 4/10/09

Landon's echo was scheduled for 8am, so we decided to just drive out to Phoenix on Thursday night, stay in a hotel, and then go to his appointment from there... that was a bad idea number one! Bad idea number two was to bring Ashlynne... both kids stayed up until almost 4am! They can not sleep in the same room, they kept eachother up all night. Well after a frustrating night, we woke up at 7am to make it to his appointment by 8am. After his echo, we drove a block down to the CRS clinic to see his doctor. While we were checking in, the Phoenix local news was there with the Easter bunny, they were handing out baskets, it was cute! Landon was terrified of the bunny by the way! Well now for the good stuff, Landon is doing great! Our prayers are definately being answered! His gradient is still at the same spot, so his doctor said since his condition has been at a hault, and he's old enough to be out of that critical point, he may stand a chance at not needing surgery for 5 years! He said it's about a 40% chance, but things can always change, his condition isn't always predictable. So keep on praying because God is definately watching over him!

Just arrived, and they were mad the car stopped!

Landon got in trouble for ripping out the tissue from the dispenser!

Landon in the waiting room!

They were so glad to be on our way home!

My poor little guy!

Landon saw his pediatrician today, he's doing ok, he could be better! Landon wouldn't eat for 2 days, but thankfully he's eating a little more now. He weighs 27 pounds which isn't that big for a 15 month old. He was always in the 95th percentile for his height and weight and now he's in the 75th percentile, so hopefully he doesn't keep decreasing. He has some congestion in his chest, so the doctor gave me a prescription just in case he spikes a fever, he said if his cough gets worse and he does have a fever, then it turned into bronchitis, so I'll have to watch for that. His doctor is also watching him for asthma, he asked if it ran in the family, and it does, so he put it in his chart but said nothing else, so I don't know if he's too concerned yet. But other than that, Landon took his shots like a champ, and tried rolling his eyes at the lady, he's so silly! Oh and to top it all off, he's getting his molar teeth in, he's been miserable. That's probably why he doesn't feel like eating, but anyone who has seen Landon eat, knows that kid doesn't pass up food, so it's a little worrisome!

This is our chance, help spread it!!

Please help Landon and the many other children affected by Congenital Heart Defects! All you have to do is fill in the [ ] with the correct wording below (if relation is unknown please put friend), then highlight the letter, and then copy it. Look up your state's Senator's contact form by going to http://www.senate.gov/ After you located the contact form, paste the letter and send! If you would like to write your Congressman as well, you may do so by visiting http://www.house.gov/ It's so easy and you can be apart of a big impact for many children! Please send this along to all your friends and encourage them to send it along to theirs, and so on! Thank you!!



Dear Senator [Your state Senator],

I am writing as a [relation to Landon] of the congenital heart defect community to ask for your help in making a brighter future for all those born with heart defects. On March 17, 2009 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.

My [Landon's relation to you] was born with a very serious heart condition. He will need routine visits to his cardiologist, as well as multiple surgeries throughout his life. 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 help us help him do well as he gets older. Please help me help my [Landon's relation to you] survive to become a healthy, productive adult.

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.

Sincerely,
[Name]
[Mailing address]
[Email address]

Landon's next Appt.

Landon's next appointment is scheduled for April 10th. After an all day event, I'll be home to update! Just wanted to let you all know! :)

Landon is doing great!

Landon got his stitches taken out today, woo hoo! I also asked about his blue lips, and finally someone explains it to me, instead of just saying oh he's fine. His pediatrician said his blue lips mean his oxygen is getting down into the 80's, which is ok as long as it goes away, which it does. He said that if his tongue is blue then his oxygen is down in the 70's which is not ok, so I've been keeping a look out, and so far so good!

Coffee Table: 1, Landon: 0...

Last night Landon decided to fight the coffee table, and well, the coffee table won! The corner of the table got him good, it went to his skull. He had to get 4 internal stitches and 6 external stitches. He's doing fine now, he's such a boy!

Landon, Landon, Landon...

Why do you wake up every morning with blue lips?

Yep, he's at it again! Well I know his heart condition isn't the main contributor, so I guess I'll call his pediatrician again! I'll call during his nap time so I'm not interrupted, and then I'll update if necessary!

And just because he's so darn cute...

Why?

Why have we never heard of Congenital Heart Defects before being faced with one? Why have we never seen commercials about Congenital Heart Defects? Why have we never seen a grocery store raising awareness and taking donations for Congenital Heart Defects? Why?

Even though Congenital Heart Defects affect 1 in every 100 babies, that's 40,000 a year in the United States alone. Congenital heart defects are the leading cause of all infant deaths in the United States. Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood. In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease. Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research. Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

(Source: Children's Heart Foundation)

Our babies depend on awareness, which will raise funding, which through research, will save so many lives!

CHD Awareness Week

February 7-14th is CHD Awareness week. I decided to make a yard sign to help spread awareness. It's not perfect, but I tried! :)

Landon's Update 1/27/09

Landon had a new echo tech today and I did not like him, he was so rude!

Anyway, Landon is still doing fine, they don't know why his lips were turning blue. They told me to watch for his tongue, if that's blue then I need to call 911. His gradient hasn't changed much since last month, so his next appointment will be in April.