A proclamation and a termination….

CDH Awareness Day - now official in Oregon

It is actually quite easy to get a Proclamation in Oregon… You go to the website, you fill out the template, you email it in and/snail mail.. and in our case within a week or so – it was official.  Complete with a fancy  letter with a shiny seal.  Now, I think you must have a valid reason and they wouldn’t approve “Jon XXX Awareness Day” but it was a painless process and I am excited about the awareness we will be able to raise from this little piece of paper.  We need all the awareness and attention brought to this life threatening birth defect so that hopefully it will finally get the research funding it deserves.  I want to see them be able to grow diaphragm for these kiddos in the next 5-10 years so they can stop using Gortex for the repairs.  I would love to find out what causes this defect and if it could be prevented.  There are so many areas of research needed.  If you want to help more go here.

A termination. Well, sort of. Finley met with Early Intervention today to review her annual goals and see where she is at. She met or exceeded all goals and just blew the team away with all the things she is doing/saying, etc. We agreed to make her case ‘inactive’ because there are no areas of concern and really, that has been the case for 6+ months now. She is eligible for services through EI until she is 3, so we want to leave the door cracked in case she does experience some sort of delays down the road (unlikely).  My coordinator has never done this before and I just teared up knowing full well how blessed and fortunate we are.

“There is not the slightest doubt in my mind that the God who started this great work in you will keep at it and bring it to a flourishing finish.” Philippians 1:6 MSG

One thought on “A proclamation and a termination….”

  1. Hey Liz…
    Yea, my blog has fallen out of date. I’m going to try and update soon. But to give you an idea… Stormy was born on Valentines day. 🙂 She made a tiny whimper when daddy cut the cord. She had a great resusitation… Did amazing days 1-7, surgery attempt #1 on day 8, but she didn’t do well at all, crumped 3 times. They brought her back to the nicu. Tmw we have another echo, then if it looks good, and if she behaves… We will attempt surgery again maybe on Thursday. Thanks for thinking about us.


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