2013 has been a
Joyful & Triumphant
year for Liam...
And the entire family.
Liam has made so much progress
and has grown so much.
God has been VERY busy
healing our Little Lamb.
We started out the year
with Liam struggling to walk.
He couldn't walk on his own,
let alone stand without assistance.
Still he was happy,
and playful.
The year started out rough.
Liam wanted to crawl everywhere,
but he was hooked to the feeding pump
20 hours per day.
Liam was approved for Physical Therapy.
His PT realized he has low muscle tone in his ankles.
She figured that was the reason he couldn't walk at age 1 1/2.
IFO's were recommended.
And thanks to a generous donation
from a prayer warrior,
Liam was able to get his IFO's.
Still is was a struggle.
We did leg strengthening exersizes daily.
He soon was able to walk holding onto things.
He climbed before he could walk.
Even learned to climb out of the walker
making is unsafe to use.
Which in turn made it very hard
to keep him from pulling out his feeding tube.
Liam wanted to walk so bad
and was so determined
that he even started spider walking.
He'd stand on all fours,
and his head,
and "walk" across the room.
Then one day out of the blue
we were at the doctors office for a routine visit
when Liam stands up
using the wall to do so,
then starts walking down the hallway.
I sat there shocked.
Then I remembered to grab the camera.
I videoed Liam walking all the way to the back.
It was amazing!
This video was taken the day he decided
he wanted to walk.
May 28th 2013
It's so hard to believe
that its only been 6 months.
I remember swooping him up into a big hug
right after I videoed him,
then I cried.
I cried again on the way home.
And as I sat here now watching the video,
I am teary eyed.
Its AMAZING!
The same day he had Bright Start and PT.
They were shocked as I was.
Click to review the blog post:
Liam had several hospital stays
and setbacks throughout the year.
When he finally started eating we were thrilled.
Unfortunately every time he got sick
he would stop eating
and it would take months to get him to start again.
This past year we ditched the GJ tube,
and replaced it with an AMT mini ballonless button.
Hes gone from 20 hour continuos feeds,
to 12 cont night feeds,
and 3 bolus feeds during the day.
We also added Blended diet feeds during the day.
When we started that,
he started eating more,
drinking,
and gaining weight.
He's still super tiny for his age
but growing great.
He's taller and weighs more
than I did at his age.
So this momma isnt worried
about his tiny size as long as he continues to grow.
Liquids were really hard.
For awhile he would only drink
out of a honey bear.
Then it was a baby bottle.
He finally settled on a specific sippy cup.
He's been drinking out of the same kind for about 6 months now.
He's eating now,
but small amount at a time.
He loved dorritos,
french fries,
chicken nuggets,
almost all meats,
pizza,
spagetti,
beef jerky and so on.
We're still dealing with texture issues.
Oral and environmental.
He will let you brush his teeth now,
but not with tooth paste.
He gags and vomits if you do.
We're still having issues with his feet
and he's been reffered to a specialist,
who has yet to call.
Probably because were still waiting on isurance approval.
He can walk without his IFO's now,
but his ankles are so bad they practically touch the ground.
(Theyve gotten worse since this pic)
Verbally,
Liam is improving daily as of this last month.
We were getting worried about him.
His words still arent very clear
but we understand them.
He speaks some sentences
and copies everyone.
And we made progress in spreading CDH Awareness!!
I sent in a letter to our Mayor.
After reading she declared CDH awareness week in March every year!
Unfortunately I couldn't be present to accept the reward.
But Liam's Grandma was.
Its been an amazing year for our amazing little boy.
Hes come so far!
As you can see
it's been a triumphant and joyous year for us.
What will next year bring?
