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.

Sweet Potatoes!!

As I sit down to write this it feels like there is so much to tell you, and yet there hasn't really been anything going on (hence the lag time between posts).

Killian is flipping rocking it this week! Since his G-tube surgery, I hear that he really seems to be feeling a lot better. He had another echo done, which came back still mild to no pulmonary hypertension! And, as you know if you're following the fan page, he apparently loves him some mashed sweet potatoes!

Lindsey said that the first time they put them on his lips, he got really PO'ed (which I can't lie, made me giggle a little). But the second time around, he loved them and now gets tastes of sweet potatoes daily now!

Sweet potato lips! My eyes are crossed because that camera is in my face...again!

Another small victory I have to report, too- they removed his Broviac this week!! You can read a full medical description here, but in short, it was one of the last tubes Killian had. The Broviac line was left in for so long just in case they needed to administer a drug quickly to help him. Well, he's been doing so good lately that they felt he didn't need it anymore!

Our sweet boy has been with us for more than 5 months now. That's 5 months longer than most doctors thought he'd make it. As we continue to inch our way to the door, we'd like to ask for your support, well wishes and prayers in the following matters:

• Please continue to hope and pray for the best as they wean Killian very very slowly off the last bit of drugs he's on. So far, so good, but it can take a turn for the worse at any point.
• Let's all focus together on his mental and physical development. I cannot tell you how encouraged we've been by your inspirational stories of how your little loved ones have overcome the hurdles of underdevelopment. Keep sharing those!
• As always please pray/send positive vibes for the doctors and nurses who care for Killian. We love the ambitious doctors (especially the ones who've help get us this far), but we don't want to push Killian to hard too fast. 
• Lindsey has a phone interview in a week or so to appeal the decision that Killian doesn't qualify for disability. PLEASE pray and send lots of positivity that she and Killian get the help they need and deserve. 
• I'm personally asking for lots of prayers for my little 20 year old sister who is under an incredible amount of pressure and stress. 

Being a young single mother in and of itself would be difficult enough. Pair that with the fact that she is caring for a sick baby...well, it would be enough to make even the strongest person crack. Our family is working hard to help in all the ways we can to prepare the house and to support her, but as I've said before this abnormal situation has become our norm. And as we approach this big change, it's easy to let the pressure get to all of us. 

Thank God we are believers and we know that He has a plan, a path and a purpose! We sure do serve an awesome God! And now for some more cute pictures :)

You know it was my 5 month birthday last Saturday! 

I'm such a happy baby without that silly feeding tube in my nose!

Working on my baby biceps pulling on my vibrating cow Aunt Layna bought me. 

Dad and Kerr-Bear will be there next week! I'm starting to get the itch to go back. It's been about 4 weeks for me. But I'm holding out for when I get the call that he's going home. Can you imagine that day!! I just can't wait!

Have a great week! And follow his fan page for 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.