CDH Information

>> Thursday, April 30, 2009

I wanted to let everyone know about a project that I have been working on since Kamryn was diagnosed with CDH. It's actually a work in progress and will continue as I gain more information, but I think it is at a place where I feel comfortable distributing it. When we first learned about Kamryn's situation, I researched everything I could in an effort to understand what we are dealing with and how we would "fix" it. There really is a great deal of information out there on CDH but it is scattered, uses a lot of big words outside of my level of education, and didn't answer a lot of questions we had as parents. As a result, I created a document that attempts to simplify CDH and everything that is involved with the care of this condition. It is up to 18 pages at this point and will likely grow as I learn more after delivery.

The pdf of the document is located on the left hand side of the blog under the heading CDH Information. You can click on the "click here" link and the pdf should pull up. This is our attempt to contribute to the CDH community after everything they have done for us and my hope is that it will be useful for parents who have recently been diagnosed and are looking for answers.

If you get a chance to read it, especially any CDH parents out there, I would welcome any feedback about the document and if I am missing key pieces that others would find helpful.

Our appointment yesterday with Dr. Trylovich went very well and everything looks normal. Both Kamrym and Brooke are measuring right around 30 weeks which is right on target. We were a little surprised when she said Stef is measuring 38 weeks, but it had more to do with how they were positioned at that point. Dr. Trylovich said there is still plenty of room for them to grow and her gut says we will deliver somewhere around 36-37 weeks. That is where we thought we would likely deliver also so no surprise there. Stef is still uncomfortable, but doing really well on bedrest.

Thanks again for all the prayers and support! We really appreciate all of you so much.

Shawn

4 comments:

Filipe April 30, 2009 at 9:28 AM  

Hi I am member of cherubs and wanted to let you know how great your CDH guide is.. You have put so much information in there that will help others get a better understanding of what they are dealing with.
I am sure other parents will appreciate this so much!
Kindest regards,
Joanna

Maxton's Mommy April 30, 2009 at 10:04 AM  

:-) You guys are awesome!!!! I have not read through the whole guide yet, but plan to do so later. The CDH community tends to amaze me.

Tracy Meats April 30, 2009 at 10:44 AM  

So glad the girls are both measuring on target!! Best wishes that the girls stay put until 36-37 weeks.

Hang in there, you both are doing great!! Tracy

theparkerreesefoundation May 1, 2009 at 12:01 AM  

Stephanie and Shawn,

Your family is always in our thoughts and prayers. We are constantly amazed by your faith and your willingness to help others who are traveling the same road.

It has been an honor to know both of you. Our invitation to help y'all with whatever is always open.

Thank you for sharing the girls so openly with those of us who have become addicted!!!

Love always,
Jes

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