Awareness.

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Thank you to everyone who ran, walked, posted comments today…

2 years ago, I was told my baby had a 40% chance of survival. (He was wrong about that number).

I was asked multiple times if I wanted to terminate for medical reasons.

Today, I have a healthy toddler with no health issues,  and with slightly undeveloped lungs.

Reflecting on the past 2 years….and taking time to pray for all the survivors and angels we’ve “met” along the way. Thankful for our CDH family, and the amazing support and encouragement in that community. So many parents giving back and trying to make something good out of it all…you are all so inspiring.

Thankful for amazing friends and family, and strangers who walk this journey with us and cover us with love and prayers.

Thankful for a faithful God who has been there every step.

We are aware.

2012 Virtual Walk/Run for CDH Awareness

March 31, 2012. It is an official Awareness Day for CDH in Oregon and many other states across the United States. If you are reading this – you are probably already aware of CDH. So what can we do that’s tangible on this date? How about plan a run/walk in your area and get a bunch of people together and walk or run with intention. Print out a bib here, make one, or Terri at Raising Healthy CDH Children has made some cool ones too and then wear a sign and get out and walk or run any distance in celebration  or in memory of children with CDH.  Maybe let this be the date that you run or walk your furthest distance, or just take those first steps towards a new goal. Be inspired by these babies that fight so hard.

In Celebration Bibs Here: CDH awareness bib_celebration

In Memory of Bibs Here: CDH awareness bib_memory

(A BIG Thank You to the amazing Laurel Thomas who made these and Kim DiStefano who designed our logo and bugs!)

Portland Run/Walk: Meet us at the Dog Park before Oaks Park to run or walk the Springwater Corridor at 9:00AM – it’s any easy out and back for whatever distance you are feeling that morning.

Be sure to take photos and post on Facebook and/or this blog….I want to see you!

 

And don’t forget to register for Ladybug Run on August 12th! http://www.reasontorun.com/races/ladybugreg.html

2012 CDH Awareness Day

This will be the second anniversary of the first time I heard the words “congenital diaphragmatic hernia.” Our personal awareness day, as well as a national awareness day recognized by many states across the United States. I am excited that this will be the first year that this date will be recognized in Oregon as an official proclaimed awareness day.  In reaching out to the media to get them to spread the word about this, a reporter wrote this article… http://www.oregonlive.com/beaverton/index.ssf/2012/03/raleigh_hills_mom_strives_to_r.html. One thing that I didn’t really say that I would like to is that the things I want to do for other parents in the hospital are the things that others did for us while we were in the NICU. The things all of YOU did to support us, to love us, to carry us – are also what has inspired me.  God poured his love into us through our friends and family and even strangers. Now, I feel called to carry that on and show that love to others in the same situation.

CDH Awareness Day.

So we’ve got this official date. Now what? What do you do with that besides post things on Facebook and Twitter.  Since I like to run, I thought – what if everyone who goes out for a run or walk that day, wore a sign/bib in honor or memory of someone with CDH… and my idea for a virtual run/walk for CDH awareness was born.

This week I will be adding the PJEG files of Bibs you can print out into this post  – or feel free to make your own and get out and walk or run on March 31st to promote awareness of CDH. Get a group of friends together – walk as a family – or just wear a sign when you go to the gym.

Also, I would love to see  photos of everyone with the signs. Feel free to post them over on the Ladybug Run Facebook page or here… https://www.facebook.com/pages/Ladybug-Run/317382648305499

I will be posting the details of where Portland folks can meet us if you want to run the waterfront with us as it gets closer.

 

 

 

19 months old

Finley is 19 months old today. 19 months have passed since we were in the NICU and she was fighting for her life. Today, she is a normal, healthy, happy 19 month old. How can that be? How are we so amazingly blessed? I don’t know the answer to that question- but I know I do thank God each day for the blessings of both my daughters. I know I have probably written similar words already – but it bears repeating. Again and again.

I love watching the interactions between Finley and her sister. The unprovoked hugs and kisses. The cuddles on the couch as they watch a few minutes of TV together before Finley gets up to climb or jump off something. I love watching them begin to play together – the latest game is Rowan lays on the ground and has Finley climb on top of her and bounce like a bucking bronco.  Of course there are also the loud screeches and screams as Rowan grabs a toy from Finley’s hands- because as you parents all know, the most attractive toy in the house, is always the toy in someone elses’ hand. Finley has started fighting back and holding on tighter and it will be ‘fun’ to see them learn to work out these battles amongst themselves.  It brings me such joy watching them together and doing all the things I wondered if…. Just so thankful.

Finley is not afraid of much. Yesterday we were at a birthday party and she wanted to get into the bounce house filled with 6 and 7 year olds all jumping wildly. Something that would have had Rowan running in the opposite direction at this age. Finley wanted in. Insisted on going on. So I held my breath as she jumped with these larger kids all around her, hoping that no one landed on her… but she had a grand time and went back in multiple times.  The fearlessness of the second child.

I think she is probably going to give me some grey hairs.

19 months. Only 5 months until she turns 2! That just seems crazy that time has passed so quickly. Supposedly, the greatest reherniation risks are those first 2 years, but it can happen anytime – as I have read of many other CDH’ers reherniating at 3 and 4. But I will not live in fear of this. If there is one thing God has taught me in this journey – it is to trust him. To have hope in him. To bring all things to him in prayer. I was looking back though Finley’s journal last night and once again amazed at how Finley was born with mild-moderate pulmonary hypertension on 8/12 and by 8/23 an echo showed severe PH – which by 8/30 had improved enough for surgery and by 9/13 it was minimal and by her 6 month follow-up it was gone.  It gives me chills when I remember and praise God for how he has worked in Finley’s life. Both in her physically and how he has used her life to affect others.  I hope her story continues to give other families hope. There is no power in fear. There is great power in hope.

Happy 19 month birthday lovebug!!

Romans 15:13 “May the God of hope fill you with all joy and peace as you trust in him so that you may overflow with hope by the power of the Holy Spirit.”

added 5:00pm – I forgot to add.. we are trialing Finley off Prilosec this week – pray that she doesn’t have any reflux issues and will finally be off ALL meds!!