Tuesday, July 9, 2013

ONE YEAR LATER!!

A year ago today...
Killian came home from the hospital!!
He met his doggy cubby for the first time
He rode in a car for the first time
Experienced what it was like to really be outside
He slept in his own crib
He met his incredible nurses LeeAnn and Caroline
After spending 7 months in the NICU and never getting to be in the comfort of our own home, He got to come home with his Mommy and family!

So, what has happened since then?
Killian has had a few surgeries but they were back in October.
We have been to the ER at the least 8 times.
Been admitted at least 5 times
He has gone from being on more than 9 medications multiple times a day at discharge- to now, he is on only THREE medications!!!
he has gone down on oxygen requirements a little bit, he is at 1.5 liters now.
He has had multiple studies done like a sleep study (yet to get results), a heart cath, a broncoscopy, hearing and speech evaluations.
He goes to feeding therapy and physical therapy and hopefully soon speech therapy
Has got the "okay" from multiple doctors to not come back for a year unless we experience any problems including Neurology, Cardiology, Hematology, and Ophthalmologists.
HE CRAWLS!! and cruises along things he can hold on to.
Killian babbles and says a few words like Na-Na and Ya-Ya sometimes we get a Ma-Ma or Da-Da.

This is HUGE because at one point doctors told us that he may never come home and if he did that he would have severe neurological issues, for the neurologists to give us the year okay is AMAZING!
We are hoping the sleep study results will come back and say that we can continue to wean his oxygen now.
Killian has started eating by mouth,and what seems like to us A WHOLE LOT!! About 3 tablespoons around 3 times a day which means maybe the feeding tube can be gone soon.

Killian loves music, loves watching bubble guppies, yo gabba gabba, and mickey mouse clubhouse! He loves to swim in his little pool we got him. He experienced fireworks this Independence Day and likes them! He has gone to church with his family multiple times and LOVES clapping with the music! He has heard a live Irish band at an Irish restaurant and loved clapping with them too! He does a little bit of baby sign language. He may not speak much but he comprehends almost everything we say to him, he is SO smart!!

here are lots of pictures and some videoes

Some fun at Physical Therapy after Killian figured out how to crawl!

First time outside!

First walk!

First time at church (music was loud and startling)

 

Plenty of doctors visits

First official hair cut :)

Laughin and playin with Momma (sorry if you cant hear the sound)

One of my first times pulling up to something

Helping spread CDH awareness

Meeting other babies (this is mommy's best friends little girl)

Slept in many different awkward ways


Playing music

Sitting with Pap-Paw or "ya-ya" and my first cousin Myles!!

Church on Easter with Paw-paw and Ker-Bear

Spreading some more CDH awareness with my 'Team Killian' shirt.

Vanderbilt Children's Hospital's mascot Champ! (it was a long day of appointments he was tired) 
Chillin' outside in my walker

Just being cute!

"#1 MVP"

Shaving Cream at Physical Therapy
 
And these next photos are from a local photographer that held a contest in January for 2013 New Years Baby and all of his fans on Facebook helped him win. :)
Melanie did such a FANTASTIC job!! Thankyou SO much!!









 
 
 
I want to apologize from the bottom of my heart that we have not been able to do an update since January. Layna has an amazing job an has been working hard lately and doesn't exactly have a whole lot of free time on her hands. And I (momma Lindsey) have been working, taking care of Killian's appointments and have just recently started college to pursue some kind of medical career!
also I apologize that this post isn't as great as Layna's posts always were, and I'm being rushed because I have a class in an hour and trying to spend some time with my sweet boy on this amazing day! We are so grateful for all the prayers and thoughts and donations in the past and those that continue, I promise to start posting more often.
God has blessed us abundantly, every Sunday I just bawl my eyes out of gratitude of the healing power God has given to my little boy, and continues to!
I have left a lot of information out so if you have any questions please please feel free to comment!!
xoxox Momma Lindsey and family.

6 comments:

  1. There is no need to apologize. I loved this post!! Thank you so much for the update. Prayers for continued progress from Neody!!

    ReplyDelete
  2. Hi!! I wish that I had time to read this. {Expect another comment later!!} But, I have been freakin' busy lately. Yesterday, my one-year old niece--who I lovingly call Little Munchkin!!--came over for the day. We had so much fun!! Then today, my nearly ten-year old cousin came over. He was here from 9:30AM to 5:00PM!! And tomorrow? We are going hiking!! Phew!! ;)
    --Raelyn

    ReplyDelete
  3. Momma Lindsey and family....
    Did I mention just yesterday that we would be going hiking? Well.... What I should have written was "Lord willing" we are going hiking!! Because plans changed!! Hee, hee, hee.... ;-D
    "He has gone from being on more than 9 medications multiple times a day at discharge-to now, he is on only THREE medications!!!". Mmmm.... Although I pray that one day Killian will not need ANY medications, I'm glad that he is down to only three!! ;-D
    "He has gone down on oxygen requirements a little bit, he is at 1.5 liters now.". Well, that is good. I am praying that someday Killian will breathe on his own!! ;)
    "Has got the 'okay' from multiple doctors to not come back for a year unless we experience any problems including Neurology, Cardiology, Hematology, and Ophthalmologists.". Thanks be to God!! ;-D
    "HE CRAWLS!! And cruises along things he can hold on to. Killian babbles and says a few words like Na-Na and Ya-Ya. Sometimes we get a Ma-Ma or Da-Da. Killian has started eating by mouth, and what seems like to us A WHOLE LOT!! About 3 tablespoons around 3 times a day which means maybe the feeding tube can be gone soon.". Good job, Killian!! Keep on reaching those milestones!! ;-D
    Killian sounds just like a "normal" boy, heedless of his continuous physical challenges!! Not surprising!! ;)
    Killian looks like a Little Dude while wearing those shades!! Very cool!! ;-D
    I love, love, love those professional photographs!! Well done!! ;)
    Sorry. Long comment!! ;-}
    --Raelyn

    ReplyDelete
  4. It has been one month since you last posted on this Blog!! I am missing Killian, my Kindred Spirit CDH Buddy!! I do hope that everybody is enjoying themselves a happy, healthy, hospital-free August!! ;)
    --Raelyn

    ReplyDelete
  5. Hi!! I created another Blog today--just for diverse Writing Projects!!--check it out at this address, if you would like!! ;)
    http://writing--projects.blogspot.com/ .
    --Raelyn

    ReplyDelete
  6. A little bird flew into my room today and told me this. "Killian has been eating good amounts of mushy food!!! Please pray this continues so we can get his feeding tube out.". Thanks be to God!! ;-D
    --Raelyn

    ReplyDelete