THIS I KNOW | a mommy blog about our son with special needs: 2/27/11

Sunday, February 27, 2011

Here we go again...

Just a quick update for my blog followers not on facebook..

Mason had his well baby check up Wednesday and his ears were infected so they started an antibiotic. They went ahead and gave him his shots.

By the next day he was wheezing so we went back to the doc. He was tested and positive for RSV. So we were a direct admit to Cardinal Glennon for observation (God was really good to allow this direct admit since the ER was filled with over 50 people, most babies with RSV as well and we would've had to wait all night to be seen).

That next day he started getting diarrhea, bad. Turns out he got Rotavirus too (one of the worst kinds of stomach virus), from the liquid vaccine, and so did I, from getting the vaccine fluid off his chin (he took it by mouth and dribbled). He is way worse off than me though :(

He is doing ok but hurting a lot from cramps so they are keeping him on ibuprofin/tylenol. His breathing from the RSV is alright...he is down to 1/16 liter of oxgen from half a liter, where he started. They have been unable to go any lower yet because he starts working too hard.

Sweet boy finding time for a smile even when he feels so bad...

Prayer requests for today would be that he tolerates his Pedialyte and probiotics today and shows improvement tummy wise so we can add back formula slowly and get him some food in there (he is extremely weak). He is also bradying really low, down into the 50s sometimes (heart rate dropping). If he isn't able to get food soon he will need an IV so pray he can make a rapid improvement once we start the Culturelle. They expect us to be here at least a few more days to get him some strength back up. He had a really rough night last night, and feels puny today; he is losing weight and his button is leaking from it.


Micah has RSV too (it's where Mason must've gotten it). This stuff is hard on him too (emotionally most of all).

Thank you for your prayers, hopefully the next post will bring better news!

One nice thing about the oxygen...it holds the paci in hands-free ;)

"Pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much..." James 5:16

About Mason....

Mason was born with MCA (multiple congenital anomalies); the cause and/or underlying diagnosis has not been found. Some of his issues include:

*Unique chromosome deletion of 14 genes (significance undetermined)
*Malrotation of the intestines (repaired)
*Heart ASD/VSD/PFO (mostly resolved)
*Dandy-Walker Variant (brain malformation)

*Microcephaly
*Hypotonia
*History of seizures
*Tethered spinal cord (all better, God did it!!)
*Severe reflux/GERD requiring fundoplication
*Incoordination/weakness/difficulty feeding requiring g-button
*deafblind (dual sensory impairment)
*Severe visual impairment due to bilateral colobomas of the retinas/irises/optic nerves; corneal cloud (Peter's Anomaly) in left eye
*moderate hearing loss (aided in both ears)
*Dilation of renal pelvis/hydronephrosis of kidneys (resolved)
*Recurrent ear infections

*Recurrent ileus
*Immune deficiency (very low IgG, IgM; IgA undetectable)

MOMMY'S FAVORITE FAITH-BUILDING SONGS

FINGERPRINTS OF GOD
Steven Curtis Chapman

...I can see the fingerprints of God
When I look at you
I can see the fingerprints of God
And I know it's true
You're a masterpiece that all creation
Quietly applauds
And you're covered with
The fingerprints of God

Never has there been and never again
Will there be another you
Fashioned by God's hand and perfectly planned
To be just who you are
And what He's been creating
Since the first beat of your heart
Is a living, breathing
Priceless work of art

And I can see the fingerprints of God
When I look at you
I can see the fingerprints of God
And I know it's true
You're a masterpiece that all creation
Quietly applauds
And you're covered with
The fingerprints of God

Just look at you
You're a wonder in the making
And God's not through
In fact, He's just getting started!

SOMETIMES HE COMES IN THE CLOUDS
by Steven Curtis Chapman

These are the places I was so sure I'd find him;
I looked in the pages and I looked down on my knees.
I lifted my eyes in expectation
To see the sun still refusing to shine, But

CHORUS:
Sometimes He comes in the clouds
Sometimes His face can not be found
Sometimes the sky is dark and gray
But some things can only be known
And sometimes our faith can only grow
When we can't see
So sometimes he comes in the clouds

Sometimes I see me, a sailor out on the ocean
So brave and so sure, as long as the skies are clear
But when the clouds start to gather
I watch my faith turn to fear,

But sometimes He comes in the clouds
Sometimes His face can not be found
Sometimes the sky is dark and gray
But some things can only be known
And sometimes our faith can only grow
When we can't see
So sometimes he comes in the clouds

Sometimes he comes in the rain
And we question the pain
And wonder why God can seem so far away
But time will show us, he was right there with us, and
sometimes He comes in the clouds...

WHY
by 4HIM

They say that into every life
Some rain must fall
For the pain is no respector
Of the mighty or the small
But sometimes
It just seems so unfair
To see the one who’s had
More than his share
Oh it makes you wonder why
And Lord
I wouldn’t second guess
Your mighty plan
For I know You have a purpose
That’s beyond the scope of man
If You look inside my heart
You will find
That I have always been
The trusting kind
Oh but still I wonder...
Why
Do the rainy days have to come
When the storm clouds hide the sun
I wanna know why
Why
When the reasons aren’t clear to me
When it all is a mystery
I want to know why
And though down here
I may not understand
I won’t let go
Of the Unseen hand
For It holds the reasons why

The Lord has never been afraid
Of honest prayers
And He won’t allow the burden
To be more than you can bear
When He knows that your trust
Is in Him
He doesn’t mind the questions
Now and then
Even if you wonder

HIS STRENGTH IS PERFECT
by SCC

I can do all things
Through Christ who gives me strength,
But sometimes I wonder what He can do through me;
No great success to show, No glory on my own,
Yet in my weakness He is there to let me know . . .

His strength is perfect when our strength is gone;
He’ll carry us when we can’t carry on.
Raised in His power, the weak become strong;
His strength is perfect, His strength is perfect.

We can only know
The power that He holds
When we truly see how deep our weakness goes;
His strength in us begins
Where ours comes to an end.
He hears our humble cry and proves again . . .

WHEN THE RAIN COMES
by Third Day

When the rain comes it seems that everyone has
gone away
When the night falls you wonder if you shouldn't
find someplace
To run and hide
Escape the pain
But hiding's such a lonely thing to do
I can't stop the rain
From falling down on you again
I can't stop the rain
But I will hold you 'til it goes away
When the rain comes
you blame it on the things that
you have done
When the storm fades
you know that rain must fall
on everyone
Rest awhile
it'll be alright
No one loves you like I do
When the rain comes
I will hold you

Sunday, February 27, 2011

Here we go again...

Mason's Mix