Sunday, March 7, 2010

Help us spread awareness!

It's been busy around here as usual!  I have so much to blog about and no time to do it!  I think I remember when I went back to work this past fall, I wondered how I would manage to keep up with blogging!  But I had said that it was a priority, so our family will always have this journal of our lives to look back on.  So I'll keep trying...but there are times when I just can't find the time!  For me, blogging might be considered procrastinating...because there is always something else I should be doing!  Ha!

Our ENT appointment in Iowa City was interesting, to say the least.  Let's just say at least we got to see some wonderful friends and do lots of shopping, otherwise the trip would have been a complete waste!  Ha!  The doctor said his ears were clear!  The left had a little bit of fluid, but not much and the right was completely clear.  This was unexpected news, and we weren't sure how to take it.  We were somewhat looking forward to him having this taken care of, so he could get healthy again.  However, we don't want to put him through something that is unnecessary either.  We scheduled the surgery for March 26th, but he is going to be looked at by our local ENT before we proceed.  If everything looks good, then we won't have it done.  So the waiting game begins again!  Just live day by day...that has become our motto around here!
 
This is Andrew and his heart buddy, Logan.  Logan was in Iowa City that day too for an appointment, and no, we didn't plan it that way, it just worked out!   And we loved seeing the Jacks family!

We ate out at Burger King together (since all our boys will eat are chicken nuggets!  Ha!) and they had a blast being together.  We wish we lived closer so we could do this more often!
Andrew was doing his usual entertaining!
 
This picture just makes me laugh.  They are in front of Victoria's Secret (we might have planned that!  Ha!) Can you tell Andrew is thrilled with the idea, and Logan?  Not so much.

Andrew having fun at the mall.  I normally don't let him play on these mass indoor playgrounds.  But how can you resist when he was such a good boy for his appointment, and he sees all this fun right in front of him?  I didn't have the heart to say no this time.  Besides, I figure, it is Iowa City, and probably half the kids on it are there for the same reasons we are, so their parents are probably germ freaks, too, right?  Yeah, I kept telling myself that.  I think I went through almost a bottle of hand sanitizer when we were done!
Shhhhhh!  Don't tell Cy we are traitors!

So, we didn't feel like we got a lot of information at is appointment.  And to top it off, when we got home he started running a low grade temp and coughing quite a bit.  Again.  (Disclaimer:  It couldn't have been caused from letting him play on the indoor playground, right??  It happened too soon after we got home!)  I took him to the pediatrician on Friday after school (he made it through the week).  It was a good thing we went.  She heard him wheeze, which indicated a reactive airway issue.  We realized this has been a chronic problem since the fall when he started day care.  She didn't use the word "asthma" to diagnose him, but she is treating him with the same medications.  He is now on 2 different inhalation steroids and singulair tablets once a day.  It ends up being 5 breathing treatments per day, plus his chewable tablet and his asprin.  I sort of feel like we are pumping him full of drugs.
Luckily he is doing pretty well with the breathing treatments.  He is getting used to them, so he sits pretty still.  I was concerned about this becoming a long term issue, but she reassured me that we could back down once he started to improve and we could just use it on an "as needed" basis.  She felt that when he does catch a bug of some kind, which for most kids would just be a slight cold or something minor, for him it causes this reactive airway and lung issue and he just gets it a little worse than most kids.  Great.  She also mentioned we want his lungs in "tip top" shape for his heart surgery, which we know is looming over our heads.
This was so cool- we checked out the Build-a-Bear in Iowa City, mainly because Andrew saw the store and begged to go in!  He made this elephant at the Rainforest Build-a-Bear at the Mall of America last summer.  We were looking at all of the accessories for the animals, and would you believe they have hearing aids??  I tell you, that store has everything!  I couldn't leave there without them!  Andrew was so excited when we got home.  He remembered right away, and asked "Elephant hearing aids?"  
 
Then he pulled his own out and put the elephant's on!  Silly boy!

Now I have a favor to ask of you all.  Even if you aren't a heart family.  Remember back when we requested letters from you about how CHD's have affected you?  Whether it be your own family, or someone you love (like Andrew!) :)  Letters came piling in, and Stef (Logan's mommy) and I got together to compile them last summer and send them off!
  
Look at that stack of letters!
Well, as you may have noticed, we didn't hear back from Oprah.  We had no success on the other places we sent them, either.

But there is still hope.
  
The Jacks family was able to be a part of something very special.  They are going to be part of a documentary that will air on PBS, which will provide hope for all of us heart families affected by CHD's.  Visit this update from Stef's blog to learn more.  Here is an excerpt from her blog explaining the exciting part, and how YOU and the letter you already wrote can help make a difference and give us hope once again!

Last week a film crew came to our home and filmed a day of our life and interviewed our family on how CHD has affected us. I was able to sit down with the founder of the Children's Heart Foundation and discuss Letters of Hope for Broken Hearts.   Betsy, CHF Founder, was inspired by what we were trying to do and asked if we would be willing to allow her to take the stories of the other families along with pictures to Washington D.C. in April! 
Her goal is to show Congress just how prevalent CHD is and how it greatly impacts many.

She also would like to feature the faces of CHD through photos in the documentary.

This is where you come in and are able to take part in an opportunity to spread awareness.

If you would like Washington to hear your story and see your child's photo in the documentary, write a story on your journey and how very important awareness for CHD is to you.  This needs to happen within the next two weeks.

You will also need to complete a release form to give CHF permission to share your story and child's photo.  Below is a simple list of what you need to do:

1. Photo(s) of your child
2. Letter sharing your story and most importantly why awareness for CHD awareness is needed. (*Many of you have already written your letters!  So it is as simple as attaching it in an email!)  If you wanted to write one before, and didn't get around to it, you have another chance NOW!)
3. Click on the link below to have the release form automatically pop up.  Type in your information (it is Microsoft Word) and save it to your desktop.  Then when you are ready to e-mail your other info attach it to your e-mail and send it off.
4. Send your e-mail to CHFBetsy@aol.com

Here is the link to the release form.  If you do not have Microsoft Word and are unable to open the release form here is the link to the PDF file http://www.ourlettersofhope.com/CHFTalentRelease.pdf.  You can print this off, fill it out and mail it to the address at the bottom of the form.  Just be sure when you e-mail your story and pics to add to your message that you had to mail your release form to TMK Productions because you could not open it.

***
This is your chance to help make a difference in the lives of children born with CHD's everywhere.  For many of you who already wrote letters, it is as simple as attaching them to an email.  I know many of you told me you wished you had been able to get your letter done last year for Oprah.  Here is another chance for you!  YOU CAN!  It won't be going to Oprah, but this time, we know it will get into the right hands. 

Please act now!

5 comments:

Tracey Snyder said...

Jen~

What a visit! Hopefully you will be able to cancel the surgery and not worry about it (for awhile anyway)! Glad you were able to get some shopping in to make the trip worth it:-)

The Playland area at the mall has gotten better since the fun stuff was changed out a few years ago. It used to be John Deere Land but by the end was nicknamed Disease Land. I think having the Children's hospital being sponsor this time AND having lots of handsantizer everwhere has helped considerably!! Now if they were only able to keep them full...

Always~
Tracey, Jeremy, Riley, Drew and Jordan Snyder
www.ForTheLoveOfMendingHearts.blogspot.com

Partner Portal said...

Very hectic schedule. I wish you all the best and to your family too. You have great kids.

Stefenie said...

LOVE the play land pics. You know there would've been no way I would've let Logan play there. LOL!! I'm a serious germ freak. Hee hee!!

Looks like Andrew had a great time!

Stef, Ryan, Wyatt and Logan
www.whenlifehandsyouabrokenheart.blogspot.com

Olivia said...

Hey, Jen!

Thanks for sharing! LOVE the pics of Andrew and the elephant with his hearing aids. How cool is that?!?!
Sorry you didn't get much info at the appointment. Kind of a bummer! We hope you guys have a great March and we all can enjoy some Spring weather!

Teresa said...

Jen ~ I just added your blog to the Shop In Your PJs for Layla Grace page.

http://shopinyourpjsforlaylagrace.blogspot.com/2010/03/little-ones-to-him-belong.html

We know that Layla Grace is getting so much attention right now and I do not want to not include all of the other little children that are in need of our prayers.

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