"SENATE RESOLUTION 204--DESIGNATING MARCH 31, 2010, AS ``NATIONAL CONGENITAL DIAPHRAGMATIC HERNIA AWARENESS DAY'' -- (Senate - June 24, 2009)"
This resolution was submitted by Senator Vitter from Louisiana yesterday and was referred to the Committee on the Judiciary. I knew it was in the works, but to actually read it in the Congressional Record was exciting. Kudos to those working on this (who shall remain nameless here, unless they reveal themselves)! You can read the full resolution in the Congressional Record here. Let's hope it passes! You can keep an eye on S.RES.204 here, and I'll post a link somewhere in the sidebar on the blog.
I'm disappointed that my excitement about this resolution was overshadowed by my anger after reading a thoughtless post on a website called Irregular Times, which carries the tagline "News unfit for print".
During an online search for this resolution in the Congressional Record, I came across an article titled, "No Time for Equality, Congress Has a Hernia" on irregulartimes.com. Of course it caught my attention, so I read on. Being a democrat with left-of-center ideals myself, I had no qualms until I reached the last paragraph, in which the author randomly picked a seemingly frivolous thing to belittle - CDH.
My blood is still boiling.
Every day I look at Sofie and realize how lucky we are to have her here with us. But if I were to be very honest, some of those days, I want to put CDH behind us. I want her to get on with her normal life and not be the poster child for CDH. I feel like we've served our time, and we are entitled to move on.
And just when I think maybe I should be less active in the fight against CDH and maybe not so involved with CDH Awareness, so Sofie can just be a normal kid, something about this monstrous defect drags us back in. She has another recurrence, or I read of another parent losing their innocent child. These things make me realize it's my obligatory responsibility, not my choice, to advocate for families affected by CDH. I didn't pick CDH; it picked me.
As I said earlier, my blood is still boiling. But I'm not angry at the author of the article. I can't help it that people don't adequately research what they write about. It just makes them look stupid. I'm angry because of all the relatively unimportant things the author may have considered to pit against the cause in this article, CDH stood out as egregiously unimportant. That makes me angry.
For parents that have watched their child fight CDH, who realize that victory isn't usually an easy road, and for parents that have watched their child lose the fight, who have held their dying baby in their arms, I'm angry. How can so many people NOT know of something so horrific as CDH?
So to this author, I'm thankful for the burst of hot air that reignited my passion to fight against CDH and for the families affected by it.
We've had a busy week, so I haven't had time to update since I got back from my trip. I had a blast in Vegas, but definitely needed a big day of NOTHING on Monday to recover. Yesterday afternoon, Sofie and I went to the pool and had lots of fun. Today we're going to have our own water fun in the backyard. It is sooooo hot here!
Sofie had a good time with Daddy and Grandma Cheryl while I was gone. She got to go see Baby Jay (KU Mascot) on Saturday, and from what I hear she may be featured on the alumni website. Sunday, Sofie and Daddy spent the day together celebrating Father's Day. We will have our celebration next Sunday, since I was gone on the actual day this year, so pics to follow this time next week. I do want to wish Kenny a very happy Father's Day. He's the very best daddy in the world! The card I gave him this year fit him perfectly. Here's what it said...
Here's a video of Sofie feeding her baby. The second clip is when Kenny saw her do it for the first time. I really wish I would have been filming him instead, because his reaction was priceless. Next time we go to Deanna Rose Farmstead she will LOVE feeding the baby goats a real bottle!
If you're still looking for blue envelopes and/or paper, here are a few options:
- Carter's mom, Kellie, got her blue envelopes from Staples. They are large, invitation size.
- I ordered mine online from Action Envelope. I got the #10 Regular Envelopes (4 1/8 x 9 1/2) — in Bright Blue (Item #4260-18) $9.95 for 50. I also got the matching 8 1/2 x 11 Paper — in Bright Blue (Item #81211-P-13) $5.95 for 50. I bought 100 envelopes and 250 sheets of paper, and shipping for that was a little steep ($9.95), but I ordered a lot.
- Paperandmore.com has these envelopes: A-9 Aqua Lagoon Metallic 5 3/4 x 8 3/4 (50 Envelopes)Product Code: 2524-06-050Qty: 1 @ $20.99 and this paper: Solid Aqua Text 60# (100 Sheets)Product Code: 3606-100Qty: 1 @ $6.99.
- Envelopemall.com has these envelopes: Astrobright Colors 4-1/8 x 9-1/2", (No 10 Sq. Flap) Envelope 100 Pack AB 49 $8.95 and this paper: Astrobright Color Sheets 8-1/2 x 11", (60 lb. Text) 100 Pack AB11 for $9.95.
- I haven't had time to check out Target or Walmart, because I'm an online shoppin' kinda girl, but if someone has found blue envelopes at either place or anywhere else for that matter, please comment and let everyone know where they can pick some up.
Once you have your blue envelopes you'll need to write one fact about CDH on the back of each one. Need a quick reference for CDH facts? Well, you've come to the right place!
- Approximately 800 babies will die from CDH this year in the U.S. alone.
- Worldwide, more than 53,000 babies will be born with CDH this year.
- Half of all babies born with CDH will die.
- Have YOU heard of CDH? Neither had I until [date of diagnosis].
- Worldwide, nearly half a million babies have been born with CDH since 2000.
- Over 1600 babies are diagnosed with CDH each year in the U.S. alone.
- Every 10 minutes a baby with CDH is born somewhere in the world.
- The cause of CDH is not known.
Next - addresses...
We're mailing all of our blue envelopes on July 15th to The Ellen DeGeneres Show. Here's her address:
- The Ellen DeGeneres Show
Attn: Fan Mail
PO Box 7788
Burbank, CA 91523 USA
That same day - July 15th - we will also be emailing The Oprah Winfrey Show (because they don't accept actual mail anymore).
- To contact the Oprah Show, copy and paste the letter you have composed (or just a fact about CDH if you prefer not to write a letter) here: https://www.oprah.com/ord/plugform.jsp?plugId=216
- Please be sure to include the link to the Letters for CDH project blog. http://www.lettersforcdh.blogspot.com/
- And a link to your chosen CDH blog or website.
So now that we have our letters and envelopes, our CDH facts, and the addresses to send the letters to Ellen and the emails to Oprah, what do we write? The easiest thing to do is just send your blue envelopes empty. Just seal it up, write your CDH fact on the back, and send it off. When you email Oprah, just email her a CDH fact using the link above. They'll know what it's for and that's the point. If you would like to write your own letter to include, please do so!!
If you'd like to write a letter, but aren't sure what to write, or just don't have the time to sit down and compose a letter, I've prepared a form letter you may use. You can just copy and paste it into an email or copy and paste it into a word processing program and print it off. Just remember to change or delete the personalized parts depending on who you're sending it to. Here it is:
To Oprah and the producers of the Oprah Winfrey Show [or To Ellen and the producers of The Ellen Degeneres Show],
I'm writing to you tell you about an extremely devastating birth defect known as Congenital Diaphragmatic Hernia, or CDH. To be born with CDH means your diaphragm didn't form correctly, or sometimes even at all, before birth. The diaphragm is the big muscle that separates your heart and lungs from your abdominal organs (stomach, intestines, liver, etc.).
Normally the diaphragm forms in healthy babies between 7-10 weeks gestation. When the diaphragm doesn't form, those abdominal organs are free to move into the chest of the developing baby, pressing on the heart and lungs and greatly inhibiting their growth and function. The effect of this is often fatal. Only 50-60% of babies born with CDH will survive. Yes, you read that right - a 50-60% survival rate, even with the best that medicine can offer!
Before this letter, had you ever heard of CDH before? You're not alone if you answered "no". Most people have never heard of CDH until their baby, or a friend or family member's baby is diagnosed. So you're thinking..."CDH must be rare if most people have never heard of it", right? Here's where you want to answer "no". CDH is NOT rare! Although, surviving it could be considered rare. CDH occurs just as often (1 in 2500 births or 1600 babies each year in the U.S.) as Spina Bifida and Cystic Fibrosis, but the outcome of CDH is frequently much worse. We HAVE to change that!
The median age of survival with Cystic Fibrosis has doubled in the last 25 years. The life expectancy with severe Spina Bifida (96% of all Spina Bifida cases are severe) used to end in childhood. Just in the last 20 years, individuals with Spina Bifida are living fuller, longer and more productives lives than ever thought possible and now have a near normal life expectancy. Why is this? Research, education, and medical advances make this kind of progress possible.
CDH first appeared in medical literature in the early 18th century. The first successful surgical treatment was in 1902. Now, more than 100 years later, even with all of our medical advances, the survival rate remains a dismal 50-60%.
Since current medical advances have failed to make much of an impact on the CDH survival rate, it's clear that more research is needed. It is my sincere hope that The Oprah Winfrey Show [or The Ellen DeGeneres Show] will advocate for families affected by CDH by helping to increase awareness of CDH in the public. CDH awareness leads to education about this horrible defect. Education leads to more research. More research leads to better treatments, even a cure, and ultimately to prevention.
The Oprah Winfrey Show [or The Ellen DeGeneres Show] is a phenomenal platform for bringing attention to CDH and the effects it has not only on the families of those affected, but also on the healthcare community as a whole, and in turn the entire country. CDH babies are million dollar babies, meaning treatment of babies born with CDH costs upwards of one million dollars or more. For those families in our country lucky enough to have insurance, most plans have a lifetime benefit cap of $1 million. After that, parents of a CDH baby must self-pay their baby's medical expenses, or they may apply for public assistance such as Social Security or Medicaid.
Often times, parents of a CDH baby must miss work for very extended periods. The average hospital stay for a baby born with CDH is 3 months, although some stay for a year or more. Missed work results in decreased productivity, loss of wages and/or benefits, or even the loss of their job entirely. The impact this has on the rest of the community and country is paramount.
No one knows what causes CDH to occur. It does not discriminate with regard to gender, race, or socioeconomics. It affects us all! Please join us in our fight to beat CDH by bringing it, and the stories of some of the thousands of families it has affected, into the homes of millions of Americans.
Mommy to Sofia, a CDH survivor
One last thing...we'd also like to encourage you to notify your local news outlets of our project prior to July 15th. Anytime between now and the first week or so of July, contact your local media to let them know what we're doing. The more attention, the better! Here are a couple of national contacts:
THE ASSOCIATED PRESS
450 W. 33rd St.
New York, NY 10001
1 Chase Manhattan Plaza
New York, NY 10005
I will also be posting this same post on the Letters for CDH blog for reference. Hope it helps to make things easier! I will be sending 100 blue envelopes with letters to The Ellen DeGeneres Show on July 15th and many emails to The Oprah Winfrey Show. In all of my blue envelopes, I'm also including this picture collage I made at Snapfish.com. The 4x6 collages are only 9 cents each! Here's the link: http://www2.snapfish.com/collageit/prd=prints
I am also sending DVDs with footage of Sofie to Ellen. If you would like to send DVDs as well, here are the bubble mailers I found. http://www.fastpack.net/Bubble-Mailers---Envelopes-Metallic-Bubble-Mailers/Pack_of_25_CD2_7x5.75_Metallic_Bubble_Mailers
Well, I think that pretty much covers it. Happy mailing (and emailing)!
- Sleeping 9pm - around 7am, then takes a bottle and sometimes goes back to sleep until 8:00 or 8:30.
- PLAYS all morning!!!
- Needs a nap around 11:00am.
- Actually goes down for a nap around 1:00pm - 2:30pm.
- Eats 4-5 bottles/day, between 4-6 oz. per bottle.
- Eats breakfast, lunch, and dinner at the table with Mommy & Daddy.
- Likes: french vanilla cream top yogurt, apples & apricots, plums, peaches, cheerios, puffs, Pirate's Booty, water, small bites of dried fruit - mostly bananas and strawberries, cheese - cheddar and velveeta, graham crackers.
- Loves: whole wheat saltine crackers.
- Hates: wearing a bib.
- Feeds herself with a fork (at 14 1/2 months).
- Licks spoons (for a few months now).
- Able to drink from a sippy cup by herself (just before 15 months).
- Cruising easily, let's go for a few seconds (as long as she doesn't realize it) while she's standing (13 1/2 months).
- Climbs stairs easily on hands and feet (14 1/2 months).
- Babbles and jibber jabbers all day (been doing this for a long time).
- Says "Dada (made sound at 3 1/2 months - used it appropriately at 10 months), Mama (made sound at 9 months - used it appropriately at 10 months), Lola (14 1/2 months), Burp (sounds like Burr - at 14 1/2 months), Boo (15 months), Hi (made sound at 3 months - used appropriately for several months now), Bottle (sounds like Bah - 15 months).
- Getting creative with her play - i.e. "playing" things with her toys...talks to them, moves them around place to place (13 months).
- Feeds her baby, burps her, and then gives her a hug (14 1/2 months).
- Pets Gracie and Lola and then hugs them (14 months).
- Hugs everyone, her toys, pillows, sofas, chairs, etc. She hugs everything (for a few months now).
- Burps everyone and all her stuffed animals and babies (14 months).
- Loves taking baths and going to the pool to splash around.
- Knows where eyes, ears, nose, and mouth are (14 months).
- Puts together large wooden piece puzzles (and crawls around with the pieces sticking out of her mouth - squirrel).
- Plays pat-a-cake and does all the motions by herself while you say it (for a few months now.)
- Has 6 teeth on top and 4 teeth on bottom (2 at 6-7 months, the rest came in between 11-13 months).
- Still LOVES peek-a-boo (since 4 months).
- "Reads" books and points to the pictures and words (14 months).
- Points to babies in books when you ask her to (12-13 months).
...I'm sure there's more that I'm forgetting, but there's always next month!
Here are a couple of recent video clips. The first one is of her cruising a couple of weeks ago or so. Notice how she walks on her tip toes. Not cool. That is an OT thing we're working on, and it has actually gotten quite a bit better since I put her in some sneakers that somewhat restrict her ankle movement. The second part shows her "reading" me a book.
The BabyLegs addiction was started by Elaine, my best friend's mom, when she gave Sofie her very first pair - 7 o'clock in the pic above, brown with polka dots. I've been off the wagon ever since. This pic includes most of Sofie's BabyLegs, but yes, there are actually more in her closet. Now that the weather is warming up, I'm temporarily hopping on the wagon until chillier times return. ...Although they do make a summer version...
In cooler weather Sofie pretty much wore a shirt, a cutey pants cloth diaper, and a snazzy pair of BabyLegs every day. Sooooo comfy for her! I found that BabyLegs kept her legs warmer better than pants, because her pants kept scooching up above her knees, leaving her legs uncovered. Who knew? Leg warmers = warmer legs.
Sofie's been a big fan of pulling her socks off, ever since she was a few months old. If she keeps socks on for longer than 30 seconds, she's broken a personal record. BUT, with BabyLegs on over her socks, they stay on for at least two whole minutes.
They also make diaper changes super quick and easy. No pants to wrestle on and off, just change the diaper without messing with clothes. Makes changing a sleeping babe's diaper much easier too.
And if you ever need to take your baby into the pediatrician's office just for shots, you can just roll a BabyLeg down and your shot-ready. No need for a pre-shot vocal cord warm up by stripping your baby down naked.
Not to mention they're super cute and come in a zillion colors and patterns, so you can match them to shirts and diapers. Plus, you don't have to feel guilty about buying loads of them because this is the one clothing item they will NOT outgrow. They're one size fits all from birth to whenever...
P.S. If you visit Inspired by Finn and use the code "Babylegs" at checkout, you can get BabyLegs for just over $3 per pair right now!
I forgot to mention her length last week when she had monthly measurements. She's now 29 1/2" tall. This was a 3/4" gain in length from last month. She's very slowly working her way back onto the growth chart. Her weight for height curve is back at the 3rd percentile.
This last week she's been getting 4 bottles of pediasure each day, plus breakfast, lunch, and dinner and an ounce or so of water with meals. She's been kind of riding the line as far as fluid intake, so we're going to change things a little this week and go back to 5 bottles + 3 meals. Instead of all pediasure, we're going to do 3 pediasure bottles and 2 bottles of plain whole milk.
A couple of weeks ago or so, she wasn't taking much of anything in the way of solids besides crackers and other dry crunchy finger foods that she could feed herself. Then she started taking yogurt well again, but nothing else off the spoon. This last week she's been really liking apples and apricots and some peach and pear flavored yogurts. So now she regularly eats a good volume (1/3-1/2 a cup) of yogurt and fruit. I keep trying to sneak veggies in there, but so far she's not too interested. Since she was around 10-11 months old, we've been offering her a huge variety of foods and textures.
It's funny how we started solids with avocado and then rice cereal, oatmeal, peas, green beans, and other veggies. After that we moved to bananas, pears, and other fruits. I did this to keep her from loving sweet things and never wanting anything else. And now we've come full circle with having to reintroduce veggies. Squirt!
She eats all textures right now (and has since about 11 months) from pureed to chunky to pieces of food off of our plates, including things like crackers (which she LOVES) and french fries, cheerios, etc. It's hard to think of a food we haven't offered her several times in the last few months.
She also loves to drink water, but still needs quite a bit of assistance to drink from her cup. She LOVES to drink from a straw. Like if you "pipe" up some water in a straw and then put the end of it in her mouth, she'll suck it out. She's been doing this since 10-11 months. Once or twice she's actually sucked water up through the straw herself. As far as cups, she prefers a regular open cup or her OT tumbler cup with a lip, no traditional sippy cups. I think they are too much like a bottle and in some way still just a little threatening to her.
However, when no one's watching her, she'll "drink" from her baby's pretend bottle. She holds it to her mouth and lays down with it and pretends she's drinking it. But she will NEVER do this with a real bottle, and she'll only do it with her pretend bottle if she thinks no one's watching her. She has an empty sippy cup to play with, and very occasionally will be pretend to drink from it the same way.
She's still working on her fork and spoon skills. She's pretty handy with a fork, and can stick stuff and eat it off the fork, but spoons are much too fun to paint with and throw to end up in her mouth. Once in a while she will lick a spoon though. I'm just glad she's back to taking food from us off the spoon, because she gets so much more volume eating solids that way.
If we really want her to eat a good amount, pureed and off the spoon is the way to go. The finger foods are great in a learning and therapeutic sense, but it takes her so long to eat them she doesn't get adequate nutrition just doing that at meal times. Now we're able to spoon and fork feed first, and then let her "play" with finger foods. It's much more effective, so I'm glad she's letting us do that again.
We got there just in time to watch the Sea Lion show. After that we headed over to The Tropics, which was really cool. There were so many cool animals to see right up close. And The Tropics was air conditioned - even better. The girls had a great time!