Monday, June 18, 2012

One Step Closer to the Door!

I find myself worrying a lot. Worrying about Lindsey and her situation. Worrying about Killian and his development and health issues. Worrying about the influences they both have and will have in their lives.

But Father’s Day yesterday helped bring me back down to earth. I walked into church full of anxiety and as the music started, I closed my eyes to pray. Immediate comfort came from my Heavenly Father, that HE is also Killian’s and Lindsey’s father. He loves them both so much! Something I always knew, but just needed to be reminded of. And as long as they stay close to him, he will always be there to fill any void, to wipe away every tear and turn every tragedy into triumph! What an awesome Father we have in him!

And Killian is living proof of his love, mercy and grace. Here’s what’s been happening with our guy:
  • Killian is handling his weanings so well
  • He’s currently only getting methadone (around .24) every 12 hours.
  • There are plans to have him completely off of methadone this week!
  • After that, all that’s left is getting him off the clonidine and his primary nurse doesn’t think he’ll have any trouble with that.
  • We don’t know if it’s the B6 vitamins or the fact that his G-tube maybe alleviated his acid reflux, but Lindsey said lately he is the HAPPIEST BABY!!
  • He’s laughing, cooing and even starting to sort of mumble!!
Soooo….some kind of big news….please don’t get overly excited….but lets just say we are getting closer and closer to home :). No set dates yet, but it's close friends.

So here are your prayer and positive thought assignments:
  • Lindsey had her call today with social security to try and get Killian qualified for disability. She said it went well, but now it's just a waiting game. PLEASE pray/send positive thoughts that they get the help they need. 
  • Please keep praying/meditating on those seizures. A couple of weeks back they had to up his Keppra medication and currently he's at the highest dose, but is still showing very slight signs of seizures. We desperately want those to go away for good!
  • I'm asking for prayers for my little sister as she begins to make this transition. Pray for strength, patience and perseverance! 
  • Also, please say some special prayers for Grandma Val and Grandpa Barry as they are Lindsey's support system there in Nashville. They've already given up so much to support Lindsey and Killian and we just hope/pray that everyone finds a good balance once he's home. 
And now for the really good stuff!!!!! Dad and Kerry were in Nashville this past weekend so I have lots of new cuteness ammo! 



Kerr- Bear is making me stick my tongue out at her. 
Mommy always makes me smile!
Getting ready to cruise for chicks. I got to go outside in my stroller. 
Happy Father's Day PawPaw Garry! Three generations of  Lambert. 
I can't get enough cuddle time. 
Every keeps asking, so I'll set the record straight- I'm not wearing fake eyelashes!
Can't wait to be home with my mommy!

Have a great week! And follow his fan page for semi- daily updates  http://www.facebook.com/pages/CDH-Cherub-Killian/301945533181876. Love you guys!!!

xoxoxo
Aunt Layna
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.


2 comments:

  1. He's just adorable! Can't wait till he can finally head home :)

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  2. My daughter and I want to let you know we have been praying for Killian since he was born. You see my daughter who will be 15 next month was born with a severe left side CDH. They only gave her a 1% chance to survive. She spent 6 1/2 months in the hospital in the NICU and was also on ECMO. We started praying for Killian when Dawn posted that he was born, and he was not doing well. My daughter is elated that her prayers were answered and that you got to bring your beautiful son home! God Bless You and your family, Courtney and Wanda Young

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