A month late- but here it is!

March 31st to some people is CDH Awareness day. To me, it’s a great way to spread awareness to people about this awful defect and to wear one specific color for it. I am all for spreading awareness everyday but the thought of one specific day and one specific color to spread CDH Awareness is helpful to me.

If someone asks or I have the opportunity to share with someone what CDH is then I do- but on March 31st I wear turquoise and ask others to spread awareness about CDH. Most of my co-workers wore turquoise and I sent an email asking them to tell at least one person what CDH was. A lot of them sent out my blog, and others wrote an email and sent it to a huge amount of people- to you who helped- thanks!

I also have to say I LOVE that turquoise has been set for the color- it’s a stand out color- no one really owns any turquoise- so you have to go buy something special and then someone will notice and comment on your color choice- it stands out! I love that!

I just recently purchased a turquoise bracelet- and apparently, according to Kohls- turquoise stands for strength! I couldn’t resist! My child and yours- has def proved that they are strong- and parents you did as well!! I also bought a pair of earrings- angel wings that are turquoise- I was soo pumped when I found those!!

Don’t get me wrong, I do try to share my story with everyone- hence the blog, newspaper article my co-workers did for me, and I wear my CDH Awareness turquoise bracelet everyday. But March 31st I really get to go all out and I like that. But I do my best to support all CDH parents and organizations!

I will never forget the day when one of K’s doctors told us that if K “caught a cold, it could be fatal.” Of course K was only one month old and still very sick (on the mend). However, when a doctor says that, to me anyway, it will stick with me! I’m very uneasy about the germs and illnesses that K can catch… but then there is this part of me that knows germs are necessary for her to build immunities.

So just recently K turned the “magical” 1 year old! Apparently at this point, their lungs have had time to grow and become stronger… so K obviously was just waiting for this “magical” birthday- and the very next day, she had a cold! STINKER! ha…

I was a nervous wreck! K’s cold was awful! She had the most awful sounding cough, that sometimes turned into a coughing attack, and her nose was soooo stuffed! And of course, she doesn’t let me use the aspirator on her- so she had to stay stuffed! It was awful! You could tell she felt awful- she was very cranky! However, K always slept through the night and had one or two bad days of eating. We had her checked twice- one was an appt she already had for her RSV shot, and the second was bc of her eating. Both times K’s lungs sound great.

K kicked this colds BUTT!! She had it for about a week and a half- maybe less- and never wheezed, never seemed out of breath- but of course I watched like a hawk to make sure she was ok.

I dreaded this day for a LONG time- and I knew it was going to happen, just never wanted it to. However, like Patty told me, watching K go through this cold and seeing how well she did with it… has made me realize just how strong she truly is! I am glad we were so protective for her first year- allowing time for her lungs to grow and become very strong- but now that she has had that first cold, I’m less protective. I know I had to be at some point, but I didn’t know what would be the breaking point for me… I’m a very nervous mother who does not want this kid to go back to the hospital as I’m sure you all are!

But I’m better now- less worried.. I don’t worry about her weight, or eating.. She eats just fine now- I think the only thing I worry about now is her not talking and when she gets constipated- I worry that she has reherniated… Silly I know- but it can happen and I just need reassurance that all is well and it’s been a while since her last x-ray.

I guess the point of this post is to not worry so much about the illnesses our kids will get. They are obviously stronger than we let on. Could I have given this advice before K was sick- no not at all- and I wouldn’t listen to anyone who told me that she would be ok… I guess you have to experience it for yourself. But eventually we all have to be part of the real world- and you don’t want that first time to be pre-k!

How was your first experience with your child’s sickness? Or if it hasn’t happen yet, what are your main concerns? I know I haven’t updated in a while, it’s hard to think of a topic… But please keep leaving your comments, I LOVE them!

RSV- Respiratory Syncytial Virus

Another RSV article

One more RSV article

I believe all of our little CDH babies are recommended to get the RSV shot or also called synagis.  However, not all babies can get the approval for the synagis.  It was very easy for us to get the approval as I have fantastic insurance … you may be thinking- insurance?! What does insurance have to do with the approval of receiving synagis to protect our babies?! Yea I was floored about this too!

Apparently, the insurance company is the main factor is achieving approval for RSV protection.  It’s an expensive shot, but it protects our babies from getting RSV.  So your doctor may say yes, your baby needs this, but it’s up to your insurance company if you get it or not!  RSV could be fatal to our babies and insurance companies may not understand that.  I do know some of you had quite a battle to get the insurance company to approve.

I believe it is 6 shots that truly protects our babies from RSV.  They get one shot a month (unless they weigh more than 17lbs- then they get two shots a month).  It should start about October and end in April… the end of the nasty flu season! Now, just recently I have found out that the synagis aren’t total protection! Which I thought they were… but NO! Apparently these synagis help to prevent our babies from getting RSV but there is a chance they can still get it.  And if the baby does get RSV, at least getting the synagis will help prevent from getting too terribly bad.  But it’s still not good for our babies to get RSV.

Before Kayla, I had never heard of RSV.  My sister’s baby, Alaina had it, but I never really knew it was RSV- until I had to learn what it was.

Premature babies need this protection as well!

How many of you struggled to get the RSV protection for your baby?  How many of you still do not have that approval? How has the flu/rsv season been to you so far?!

Praying for a healthy winter for all!!!

This may only be me, but I always lysol and then wash Kayla’s toys (her new ones!) before letting her play with them.  I just think of all the toys I touch to get a feel for at the store and think of how many others have done that before me! YUCKY!! So when her toys get into my apt. they are cleaned!

Quick story- I go grocery shopping first thing in the a.m. so it’s not so crowded and less people who could be sick.  I always take the cleaning wipe and wipe down my WHOLE cart before touching it.  One day I went early in the a.m. it was peaceful!  I did my shopping within an hour and not once was there a person in the same aisle as me!  So I thought I got away with some pretty decent shopping and did a great job being away from sick ppl… WRONG! As soon as I unloaded my grocery’s onto the check out station- I hear the cashier telling her boss that she needed to go home as she was not feeling her best!!!!!!!!!!!! ARG Needless to say, I came home, told Jerry not to help me as I didn’t want him to touch these nastified things … and yes, i’m a nut.. and I lysoled EVERYTHING! I’m crazy!

Anyway- so I was wondering what you were doing for Christmas?!  Are you taking the toy out of the box and washing then wrapping so your baby/kid can play with it right away? Or are you keeping it in the box, letting your baby/kid open the gift and then washing it?  Or are you not a crazy freak like me and don’t see the need to wash it first? haha (I am crazy, it’s ok to say! )

I am just trying so hard to keep my kid healthy.. I don’t know how her lungs are, so I will do anything to keep her from getting sick.  Heck, I even clean myself twice a day! lol!!

Anyway- I just wanted to know how everyone was doing their thing for Christmas.   And what would really get my spirits up is if you shared your favorite Christmas recipe!  I love to bake/cook fun things.  My personal favorite for the Christmas time are Creme De’Menthe Squares (YUM)!!! Click if you want the recipe –  I also LOVE Nuts and Bolts!! (my mom’s!) This seems close to my mom’s recipe- but I’m not sure… but sounds good!

Also- how is everyone doing with flu season?  We ok?  It was rough for us for a while, it seemed like half of the kids in elementary were out sick with either H1N1 or just the regular flu and then some turned into bronchitis, and even pneumonia.  It was rough.. and we still aren’t clear yet.

Happy Holidays!!

Charles Woodson’s Generous Gift to Pediatrics

My husband sent me this article the other day and mentioned it might be good for one of my blogs.  I figured it was most fitting on CDH Family- as it isn’t directed towards CDH- but it’s directed towards helping children and babies.  This is a very generous gift that Charles Woodson has made.  Yes it would be great if it were directed towards CDH but we will just have to wait our turn I guess…

Also- Oprah- I’m guessing she isn’t going to be taking us on her show… considering she is cancelling hers.  My thought is she already has all her shows planned out and has no more room to do a show on CDH.  Pray Ellen is paying attention to us.  I also emailed Dr. Phil and I have been told to try the View… I haven’t yet, but I’m thinking about it.  I really thought Dr. Phil was going to be something with the automated response I got- simply because it wasn’t automatic.  It was a couple days later… But maybe their mailbox was just delayed.  Oh well… All I can do is try.

I always tell my co-workers who ask about Ellen responding – that it will be known one day- when a famous person has a CDH person.  There are a lot of organizations out there that are working really hard to let CDH be known- and They do a lot of hard for that- so kudos to them!!

Anyway- this was just a good thing that Charles Woodson has done for babies and children and I thought in light of the holidays- it’s always nice to know that more money is being put in to research why these diseases/defects are killing our babies/kids!

Maybe we could try to get to one of the NFL players, MLB players- you get my drift- to donate money like Charles did to just CDH..?  There must be a way to talk to one..? hmmm Anyone know someone who knows someone who knows someone famous? lol

Happy December !!

ps- thanks to all who comment on here.. you must know I absolutely love it!