Ok, so this was supposed to post yesterday but I got too wrapped up in watching the UNC Tarheels beat the Duke Blue Devils last night to remember to post this - Go HEELS! Anyway, yesterday, 2/11/09 was the day Ethan turned 18 months old! Combined with the fact that this is CHD Awareness Week and Valentine's is on Saturday, we decided to run with the heart theme and make a heart shaped valentine's cake to celebrate Ethan's milestone!
And speaking of milestones, let me share what Ethan's been up to lately:
-He weighs 24 lb. 14 oz. (as of last Thursday's cardiology checkup, so he's probably already hit the 25 lb. mark!)
-Ethan is getting to be really good at walking and running and climbing - especially furniture!
-He still doesn't say much that we can understand besides "Mama", "Dada", "Mimi", "anana" (banana) and his newest word is "ba" for ball!
-He knows most of his body parts and points them out each time we ask where they're located.
-By far, his favorite food is bananas - he usually eats a whole one each morning for breakfast, in addition to a bowl of Cheerios (and they say heart kids often don't like to eat and have trouble gaining weight...?!?) A funny story about bananas - Ethan and I were at the grocery store this week (I usually try to go on the weekends when Dan's home to watch him since Ethan can't stand Food Lion's grocery carts) and when Ethan saw me put the bananas in the cart, he picked them up and hugged them!
-Ethan loves to clean (mainly dust/wipe up stuff but also likes to mop!) and is also fascinated with keeping doors closed!
Well that's about all for today. Thanks for checking in with us. Hope you all have a great Valentine's weekend and please continue to help us spread the word about Congenital Heart Defects!
Thursday, February 12, 2009
Monday, February 9, 2009
Congenital Heart Defect (CHD) Week!
Yesterday began Congenital Heart Defect (CHD) Awareness week. "Congenital" very basically means that you are "born with it." And "Heart Defect", well, that's self explanatory. :) Another CHD affected family posted this information on their blog and asked that others would pass it along. I never knew much about CHDs until Ethan was diagnosed. I knew they existed, but didn't know any specifics. I've also included a little bit about Ethan's specific defect, Hypoplastic Left Heart Syndrome. Thanks for taking the time to read this and to help spread the word as well!
*CHDs are the #1 birth defect and the #1 cause of infant death related to birth defects. 1 in every 100 babies born will have a CHD (1 in every 800-1000 babies born has Downs Syndrome).
*1 in 10 of those born with a CHD will have a fatal defect.
*In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.
*The cost of inpatient surgery alone for CHDs exceeds 2.2 billion dollars per year.
*There are approximately 35 know Congenital Heart Defects.
*Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.
*There is no known cure for CHDs. However, the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was. At the same time, the rate of incidence of CHDs has remained unchanged.
*With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.
*Many of those living with a CHD go on to lead normal to near normal lives. Those with complex CHDs will also go on to lead longer and more active lives than before. Most will have some physical limitations, but almost all learn to move pass them.
*About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children (Julianne included).
*Hypoplastic left heart syndrome occurs in 4 to 16 out of every 10,000 live births, and accounts for about 8 percent of congenital heart disease in babies. Under-development of the heart structures occurs during the first eight weeks of pregnancy. There is often no clear reason for the development of congenital heart defects. In some cases, there might be a genetic link or an environmental exposure that makes the defects occur more often in some families. In other cases, there is simply no known cause.
*CHDs are the #1 birth defect and the #1 cause of infant death related to birth defects. 1 in every 100 babies born will have a CHD (1 in every 800-1000 babies born has Downs Syndrome).
*1 in 10 of those born with a CHD will have a fatal defect.
*In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.
*The cost of inpatient surgery alone for CHDs exceeds 2.2 billion dollars per year.
*There are approximately 35 know Congenital Heart Defects.
*Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.
*There is no known cure for CHDs. However, the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was. At the same time, the rate of incidence of CHDs has remained unchanged.
*With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.
*Many of those living with a CHD go on to lead normal to near normal lives. Those with complex CHDs will also go on to lead longer and more active lives than before. Most will have some physical limitations, but almost all learn to move pass them.
*About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children (Julianne included).
*Hypoplastic left heart syndrome occurs in 4 to 16 out of every 10,000 live births, and accounts for about 8 percent of congenital heart disease in babies. Under-development of the heart structures occurs during the first eight weeks of pregnancy. There is often no clear reason for the development of congenital heart defects. In some cases, there might be a genetic link or an environmental exposure that makes the defects occur more often in some families. In other cases, there is simply no known cause.
Wednesday, February 4, 2009
Pictures!
Ok, so here are some long overdue pictures from our 3" of snow a couple weeks ago, along with a few others just for fun! And just to preface the last one, Ethan really does enjoy cleaning and actually was fussing that I was doing all the "fun stuff" today without him!
Learning to walk through snow!
This white stuff's pretty cool!
Checkin' out the kitchen
All bundled up
Helpin' Mama mop the kitchen
Checking out the snow first thing in the morning!
Trying to get unbundled before going outside.
Outside with Mommy and Cousins M & R!
Learning to walk through snow!
This white stuff's pretty cool!
Checkin' out the kitchen
All bundled upHelpin' Mama mop the kitchenWe're still waiting to hear from UNC about scheduling his sedated echo. It's been nearly a week so we should hear something pretty soon. Otherwise, we're doing well. Ethan's cutting some more molars and has been pretty fussy/clingy for the past 5 days. He didn't have much of an appetite over the weekend and ran a very slight fever (99.2) on Saturday so we never made it to the birthday party. :-( We did manage to make it to our MOPS (Mothers of Preschoolers) groupwide playdate yesterday at Raleigh School of Gymnastics behind our church. Ethan and all the other kids seemed to have a blast! And from what I heard from other moms on Facebook yesterday afternoon, it wore all the kids out and they all took really good, long naps (like that's anything new for Ethan, he naps 3-4 hours in the afternoon anyway)! Were it not for the dinner plans with my parents last night, no telling how long Ethan would've stayed down for his nap - poor guy had to wake up after only 3.5 hours! LOL
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