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Wednesday, May 8, 2013

Abe update

I know, I'm a terrible blogger.  Seems like 140 characters, quickly posting a pic or status seems much easier these days!  I did read through the blog not long ago and was quickly reminded of the incredible graciousness and faithfulness of the Lord.  I like having this journal and wanted to do an update on our precious little man.

I don't even know if I mentioned that he got really sick in December and this resulted in a swallow study.  The study revealed that Abe was aspirating both purees and liquids.  Not good.  He was then allowed nothing by mouth, all nutrition and hydration had to go through the feeding tube.  It was hard but everyone hoped that a repeat swallow study 6 months later would show improvement and he would once again be able to resume oral feedings.

Oral feedings are "normal" and when you have a child with severe special needs you like to have a few "normals" it was difficult to let it go.  Our repeat swallow study was yesterday.  I just knew it would show my boy was a swallowing king! It

He is indeed still aspirating solids and liquids, even his own saliva.  Bam.  It hurt.  I was not prepared for how sad it would make me.

Abe on the other hand is just fine with this!  He made it very clear during the study that he did not want any of it...... he can't communicate with words but he made it known that he is not interested in resuming oral feeds!  He pushed his tongue out, gagged and bit the spoon to prevent it from going in his mouth.  So the problem is me.  The loss of a "normal". The worry of him aspirating his own secretions.

I have some amazing friends and family that sent encouraging texts, let me cry on their shoulders and phone, reminded me of an awesome song (Oceans by Hillsong), brought me wine and cookie dough and a precious hubby that took me to a patio with a margarita.  We sat out there and cried together and quickly reminded one another what a gift this kid is to us, to others.

I'm thankful the Lord is faithful to encourage.  Faithful to reveal truth.  Faithful to remind me that He is God and I am not.  Faithful to provide the right scripture.  Last night He gave me Jeremiah 33:3.  "Call to me and I will answer you, and will tell you great and hidden things that you have not known."

He always answers prayers.  He does not always answer them the way we would like.  I do trust, rest in the knowledge that His ways are good.  That He loves Abe and knows his deepest needs.  So we keep pressing into Him and pressing on..........

My sweet friend Heather gave me this song, such rich truth.  Interesting enough, she sent me her journal entry for yesterday am.  Guess what scripture He gave her??? Yup, Jeremiah 33:3!  Our God is certainly in the details my friends. :)

"Oceans (Where Feet May Fail)"

You call me out upon the waters
The great unknown where feet may fail
And there I find You in the mystery
In oceans deep
My faith will stand

And I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now

So I will call upon Your name
And keep my eyes above the waves
When oceans rise
My soul will rest in Your embrace
For I am Yours and You are mine

Spirit lead me where my trust is without borders
Let me walk upon the waters
Wherever You would call me
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my Savior

I will call upon Your Name
Keep my eyes above the waves
My soul will rest in Your embrace
I am Yours and You are mine

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"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from becoming polluted by the world." James 1:27
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