Take a Walk with Me: Still hard to believe

Friday, October 23, 2009

Still hard to believe

Lillian has been doing FANTASTIC. Her night time breathing is a little shaky, ecspecially since the stoma is so so tiny now. It truly is unbelievable what a difference it has made to have it out. First off, her feedings have been great. Hardly any vomiting. I've been able to increase the rate and volume that she is getting. She is absolutely full of energy. She is doing things she has never done before. One day, she just walked around looking up. She is babbling nonstop and started saying ma-ma the day after we got home. She giggles ALL the time. Something I don't think we noticed because it wasn't enough air to make noise. It is hysterical. She has found that she can make a high pitched scream and laughs so hard at herself. I could go on and on.

We are getting ready for transition out of First Steps into the school system..our meeting is Monday.

We are still being very cautious about taking her out. We are kinda putting her in a bubble since she is still very high risk right now. The times we have been out, it is difficult to comprehend that we only need a diaper bag. I have so much more to tell, but it will have to wait as Lillian is busy getting into something.

Thank you thank you thank you all for your support and prayer. God is good.

8 comments:

AliciaOctober 23, 2009 at 12:25 PM
I LOVE it!!! I am so glad to hear that she is doing things she has never done before. It just means this was the right thing to happen at the right time!

Have a great weekend!!
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Finding NormalOctober 23, 2009 at 4:23 PM
I still can't believe it! It has to be simply amazing to see how much this is changing her! Is she on oxygen or anything at night? I hope this will be a healthier winter for you!
Hope your transition goes well. Ours has been...challenging. The preschool and the eval and the case conference and the goals were all easy, and Addison officially started on Wednesday. The transportation is still not worked out. :/
Great to "hear" from you!
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StephanieOctober 23, 2009 at 4:51 PM
OMG, This is the post I've been waiting for. I'm so excited for Lillian and for you all to just be able to enjoy this beautiful transition. All the newness must be something for Lillian. Looking up!!!! Oh my goodness, now it's your turn to make me cry. God Bless!!!! ENJOY!!!!
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The VW'sOctober 23, 2009 at 5:51 PM
YAY! I LOVE GREAT NEWS! I'm so happy for you!!! HUGS!
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Sherry COctober 23, 2009 at 6:23 PM
Oh wow I love it too!!! ma ma that almost the best part and the giggles sounds totally wonderful to me. So glad to hear.
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ColleenOctober 23, 2009 at 6:56 PM
I'm so happy for you guys!! It sounds like she was definitely ready to get that trach out. I'm so glad she's doing so well. She certainly has come a long way!! Hugs!
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MandyOctober 25, 2009 at 8:38 PM
So great to hear this!!
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John Deere MomOctober 28, 2009 at 8:12 AM
Good luck with the preschool transition! Glad to hear she's doing so well with no trach!
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"...I am fearfully and wonderfully made" Psalms 139

Lillian Faith Halcomb was born to us as our fifth daughter. We anxiously awaited her birth and due to complications with Mommy, Lillian came into the world a little over 3 weeks early. It was immediately obvious that she was in distress. She was unable to breathe or keep her oxygen levels up. She was quickly transported to our Children's hospital in Indianapolis. She was on a vent by the next afternoon and we were told she was suffering from Pierre Robin Syndrome and Pulmonary Hypertension (high blood pressure in the lungs) Genetic tests were ordered and something new developed hourly. Her heart and kidneys had defects as well. By December 5th, we were taken to a room and told our daughter would need a trach tube to breath, she would need major heart surgery and she also had a rare chromosome defect. She has a deleted portion of chromosome and a trisomy that are intertwined. We were told that 70% of children with her deletion died by age 1 or 2. They did not know how her life would play out since she had a complex case. She also has a cleft palate, overlapping toes and some facial features that are common with the genetic diagnosis. She also suffers from a brachial plexus palsy in her left arm due to some of the complications of her birth. Her story continues here. We covet your prayers for her well being and our family. We are so blessed to be Lillian's parents and know God has a perfect plan in all of this..."Your eyes have seen my unformed substance;And in Your book were all written The days that were ordained for me When as yet there was not one of them." Psalms 139:1

In The Shallows

In the Shallows In the shallows so long, forgetting what's wrong. The tide rolls in, the tide rolls out. My head above water, the waves calmly go. It's a manageable place, then the waves start to race. I'm farther from shore, in the shallows no more. The waves..they get bigger, they grow and grow. The sun is still out, those on the shore continue about. Nothing is different for those on the sand. They wade in the shallows, they don't seem to know. I see, in the distance, another soul with persistence. Their wave's a bit different, also unseen, unexpected. We'll get back to the shallows, but, when, we don't know. I think I might sink, the waves get bigger with each blink. My breath harder to catch in the ocean I'm given. Hard to forget about all of the sorrow. Time seems to still as I gasp and spill. To the others around me, I'm just out for a swim. I need back in the shallows. I need a tow. I try to hold fast to He, the ONE who holds me. The waves dying down, my breath easy now. In the waves, in the shallows, He IS where I go. November 9, 2021 written by me.

Inpsired Poetry

Do you see happiness
Do you see love
Do you see faith
Do you see compassion
If you are watching...

Do you see the struggles
Do you feel the pain
Do you understand the trials
Do you look deeper
If you are trying...

Do you know the bitterness
Do you know it's roots
Do you see it growing
Do you know how to stop it
If you only knew...

Do you know the difficulty
Do you know how to cope
Do you think it will change
Do you wonder why now
If you only could...

I'm different now
I'm trying to fit in
I'm feeling lost
I'm trying to grasp peace
If only...

10/31/2010

I want it to be me

Every labored breath, every needle in your skin, every prod and poke-I want it to be me
Every tube inside you, all the surgeries, all the pain you suffer- I want it to be me
All the hospitalizations, all the doctors to be seen, all the therapies- I want it to be me
All of the diseases, all of the infections, all of the unpleasantness- I want it to be me
Every single fever, that seizure, just that one, how can I explain it except- I want it to be me
Every puked up feeding, all the food you don't get to eat, every cough and discomfort- I want it to be me
But its you, it's always you the weaker one, the small- why can't it be me
Take it all away, make you well, give you some relief, but I am simply helpless, just the standby, I don't want that to be me.

9/26/2009

In My Womb
Began your life
A token of love
Between husband and wife

In my womb
You formed and grew
What lie ahead
Noone knew

In my womb
Safe, nestled, and warm
Days passed by waiting
For you in my arm

In my womb
No battles to fight
No struggles for you
You were alright

In my womb
Is the very place
I wanted you back
When we met face to face

In my womb
You were no more
The fear settled in
The guilt to my core

In my womb
The silence cried
It seemed as though
A part of me died

In my womb
God made a home
For a blessed angel
On this Earth to roam

In my womb
His work not done
He sent you along
So I'd rely on the Son

In my womb
The journey did start
I'll never regret it
You have my heart

In my womb
Began your life
A token of love
Between husband and wife.

Michelle Halcomb 4/23/09

Laughter without Sound

Your mouth is open, tummy rolls
To you our hearts are bound;
Who'd believe there'd be such joy in
Your laughter without sound.

Your brown eyes how they twinkle,
Your little face so round
Your toothless grin, your chubby cheeks
Your laughter without sound

Your hands awaving, fists all clinched,
Your feet kick all around
Nothing could be sweeter than
Your laughter without sound.

The blessing that you give us
Is giv'n by God, not found
We could not imagine life without
Your laughter without sound.

Written by your Mommy on August 25, 2007

Mommy Loves You

I love your little piggies and those hands that hold mine tight
I love your big, brown eyes and those tiny lips, just right.
I love your curly hair and your button nose with all my might.
All these things about you are so precious to my sight.

Love, Mommy

It Amazes Me

It amazes me
the life that one so small can bare
Hard and frought with challenge
Yet, so very unaware

It amazes me
How you capture all the hearts
of those who are around you
even from the start

It amazes me
that many have no clue
the daily stuggles that you face
just to make it through

It amazes me
that on those who we depend
continually cause problems
it seems there is no end

It amazes me
it makes my head spin
when people who have no idea
say "I know where you've been"

It amazes me
And I'm just beside myself
when you're treated not much better
than a book upon a shelf

It amazes me
that each and every day
you just keep on going with the flow
there is no other way

It amazes me
how you have come so far
beating many of the the odds
how much you raise the bar.

Michelle Halcomb 10/31/08