Thursday, April 19, 2012

Quick Update and Awesome Video!

Happy Congenital Diaphragmatic Hernia Awareness Day! Well, it's never happy when talking about CDH, but we can rejoice that organizations like Cherubs  are out there pushing for research bills to help find a cause and a cure for this terrible condition! If you haven't already, check out their website for more information about how you can help spread the word.

Sorry I've been slacking this week with the blog updates. Life has just been getting in the way. And tonight will be short, too. Hope I don't lose my best aunt in Florida status :)

Here are the highlights of the week:
  • Killian has had a STELLAR week! 
  • As you probably know from his Facebook page, the docs did an echo on Tuesday after weaning his nitric and the results....NO PULMONARY HYPERTENSION!!!! 
  • They told us that going from 5-0 would be extremely difficult, and that his PH could come back so to get this news just put us over the moon! 
  • He's currently at 1 on the nitric and doing great! They'll probably take him to 0 on Saturday. 
  • Then they'll do another echo a couple of days later. We would love you to pray and send positive thoughts that his PH stays gone! 
  • They will be tweaking some of his other meds this week, so also please pray that goes smoothly. 
  • And the big news for today...Killian got his feeding tube put through his nose! This is much more comfortable for him AND we get to see his adorable little face! 
  • Lindsey said that now she gets to see him smile :) 
  • Also, Lindsey is pretty much getting to hold her son everyday! For all of you out there who can pick your children up freely, please don't take that for granted. Squeeze them often and hug them as long as they'll let you! 
Check out these cheeks!! 

And now...the video! (btw- we think you have to view it from a desktop...won't work on a mobile device. Sorry about that!) It gets good about half way through :)

It's so incredible to watch him dance around, follow objects with his eyes, move his legs and reach for things. PLEASE pray that with the proper amount of physical therapy that Killian will have life and have it abundantly!!

Love you all. We continue to be blessed every single day with your sweet comments, likes, shares, prayers and support. I'll say it for the thousandth time, don't know where we'd be in all of this without you!

Hugs from Florida,
Killian's Aunt Layna 

P.S. Like his fan page to get the daily updates:
Killian has been fighting - like a champion! - for his life since he was born. Because Killian's family is so spectacular; their friends decided to create this website in their honor to help in any way possible.

We are overwhelmed by the amount of people who have asked for an avenue to help Killian, Lindsey and the family. Any donation made below will go to help pay for food while staying in the hospital, gas back and forth, travel for family and the general care Killian will be receiving beginning on the glorious day he leaves the hospital!

All donations go directly to Killian's care and the care of his family. Also, ten percent of all money collected will be donated to Cherubs, The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support.


More about CDH from CHD Support:
CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive. The cause is not known. Over a half million babies have been born with CDH since 2000. CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.

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