Today is officially CDH (Congenital Diaphragmatic Hernia) awareness day. The goal is to educate as many people as possible about this birth defect which is so life threatening yet so unknown. CDH actually occurs more commonly than Spina Bifida and many other birth defects of which are much more commonly known; however almost no one has ever heard of CDH prior to their own child's diagnosis. Because there is so little awareness regarding CDH, there is also little research being done into its causes, but many medical facilites are beginning to notice a significant rise in CDH cases. Please take the time today to educate others about CDH. If you're feeling exceptionally moved by the awareness efforts, you can feel free to contact your state representatives or the governor's office to request that NC proclaim March 31st CDH awareness day. Upon the initial request, NC governor informed one CDH mother that there were too many medical problems to claim one day for awareness of any single "disease". I believe NC is the only state that has been contacted by any member of Breath of Hope that has flatly denied to declare March 31st CDH awareness day.....how embarassing!
Now, the awareness symbol for CDH is a turquoise ribbon. You may be noticing some shirts around town that read..."I wear turquiose for Ned". These shirts were designed and printed by a small group of college and high school students that God has allowed to be placed in my life for my benefit. They think I teach them, but the truth is that I totally learn from them. They emailed me a sample of the shirts they had designed last week and I was so touched and moved. They have made shirts for my entire family, Travis' family, and our Bible study teacher and themselves. There are no words for me to express the deep love I have for that precious group. I have sincerely been praying this past week that my boys will grow to be as strong in their faith and ability to show love to others at such a young age. My world is blessed to be a part of their growing in the Lord....just to watch them strengthens me!
How is little Ned on CDH awareness day....just fine. We still haven't met with the occupational therapist. I'm thinking she will surely come today! She was sick last week so she's been held up trying not to spread germs I'm sure. Ned has continued to gain weight very nicely and is currently weighing aroung 7lbs 11oz. He continues to tolerate feeds pretty well and we'll just have to see how the eating by mouth thing goes. In the meantime, he is spending time hanging out in his bouncy seat and the swing.
Trav and Jack came up on Sunday for my birthday....the big 3-0! It was absolutely the best birthday ever even though I completely dreaded it!! I was little sad and depressed when they drove off a little while ago, but I'll settle back in shortly. For my big thirtieth birthday, we went and saw "Horton Hears a Who" (very cute movie) and ordered in Chinese....very exciting stuff!! I got to snuggle up with my family and just have some normal time with them...it was the best gift I could have received.
Jack visited with Dr. Adamson this morning, but Jack's hernia wasn't detectable during the visit. Dr. Adamson said just leave it for now and if it gets worse or becomes painful, he'll operate. I'm really hoping that it has miraculously healed itself? Maybe we'll never see any evidence of it again...that would be nice.
Love and many blessings to you all!
Betsy, Travis, Jack & Ned