Sunday, 25 March 2007

I'm feeling a little overwhelmed
today.  We've had 2 odd days with Isaac.  I told Doug when things are
going like this, I start watching for some new insight from the Lord. 
You know, when you are "done" – physically, emotionally exhausted,
spiritually looking for God to move or act or speak – when you have no
way of offering anything to the situation -  God often shows up in a
very real way.  I don't know – maybe we're just paying better
attention at those moments.
 

Isaac had something happen Friday night, after we put him to
bed.  We didn't hear anything.  Doug just went in to check on him, like
we so often do at night.  He was laying there – eyes wide open, tracking
from side to side, sweating, snoring and as limp as a dish rag.

Now you have to understand.  Isaac has CP and
very high tone.  He is very stiff most of the time.  He can bend and
relax occasionally.  However, even in his sleep, he is never limp.  His
hips especially along with his knees never relax, never lay flat.  He
sleeps with them bent up or we put a pillow under his knees.

But Friday night, I changed his diaper and his
legs were laying completely FLAT.  When I picked up his legs to change
his diaper and then let go, they just flopped.  It made my stomach lurch
and I thought I might throw up – it was THAT weird.

So, we surmised he'd had a seizure that we
didn't hear.  That freaks us out and we're definitely looking into a
video baby monitor so it doesn't happen again.

He finally closed his eyes and slept.  Then
Sat. morning he was weepy, then had extended staring seizures all
morning.  He fell asleep around noon and slept until about 5 PM.  The
staring seizures continued, so we administered the big meds.  They did
not stop the staring.  He fell asleep around 10 PM and woke up this
morning at 6:30 and was STILL staring.

So we took him to the ER.  As soon as we got
him in a room and there were 3 nurses standing around his bed – he WOKE
up!  Started his normal flicking his hands, kicking, vocalizing, etc. 
It was amazing and EXTREMELY irritating!!!!!  I couldn't believe how mad
it made me that he was acting normal!  Isn't that awful??? 

(Doug says, though, that we're reaping what he
sowed as a child – when his mom took him to the doctor, she would tell
the dr. about the ear ache, sore throat, etc., and Doug would say, "no,
that doesn't hurt.  I'm not sick."  He said he was so afraid to get a
shot, and thought if he said he was fine, the doctor wouldn't poke him
with the needle!!!!)

Anyway,
they contacted our neurologist, who upped one of Isaac's seizure meds. 
The ER dr. gave us a script for eye drops (Isaac had stared open-eyed
for nearly 24 hours, except when asleep, and his eyes looked awful,
blood shot and dry.) Then they sent us home.

I'm so tired.  Two nights of barely sleeping,
then early to the ER.  We're trying to get everything ready for our trip
to Miami next week.  Doug and I are both weepy and a little grumpy –
just feeling very stressed.

I
am amazed at God's goodness to us.  I was thinking today of those old
country western songs.  The verses are sometimes long and sad and
enumerate all the awful things that are going on.  But then the chorus
eventually has an upswing in tempo, some decision is made and the singer
decides that life will continue. 

My life is like that.  Sometimes the verses of my life are
sweet and happy, and other times they might be sad.  But my life cannot
be one verse after another.  I must have a refrain, a chorus that brings
a culmination to my story song. 

I get to choose my chorus.  It can "gloom, despair and agony"
or "he stopped loving her today" or "the next time he cheats, it won't
be on me" or "you picked a fine time to leave me" or all about "friends
in low places".

BUT as for
me and my house, we have to choose another chorus.  Our refrain is
filled with "how great is our God" and "holy, holy, holy".  "God is so
good", "when we all get to heaven", "what a day that will be", "the
blood's still there" or "Hallelujah!  Praise ye the Lord!" – my chorus
has to praise my Father and testify of His goodness to me.

Does your "refrain" praise Him?  What is the
"chorus", the soundtrack so to speak, of your life?

Alesha

Saturday, 24 March 2007

Good morning,

It was a bad night for Isaac –
we're not sure if what we witnessed was seizure or not, but it was so
odd for him that we put him in the bed with us to keep at eye one him. 
We've only done that 2 other times that I can remember.

We are going to see my folks
for the day today.  It's a little drive and Isaac is really not up to
it, but we need to go before we head to Miami.  My daddy has been not
feeling well for a little while and we need to see him.  My brother and
sister-in-love just moved into a new house and I want to see it!  AND
Grammy NEEDS to see the boy before he goes into the hospital on the 3rd.
of April.  You all understand that, I know!

We'll try to update again
tomorrow after church.  I've been SO enjoying everyone's "spring"
blogs!  Seems like everyone has "spring fever".  It sure does produce
wonderful pictures and blogs!

Alesha

Thursday, 22 March 2007

Isaac's not been doing really great –
lots of small seizures the last 2 days.  Then yesterday he began
vomiting again in the afternoon.  Although, praise the Lord, he kept
his supper down last night.  He's been with the physical therapist this
morning for 45 minutes and it still sound asleep! 
She getting lots of good stretching done with him though.

We don't know what causes the vomiting.  The
dr's are stumped as well.  They don't think it has anything to do with
the seizures, though.

Well,
he and Daddy have a quiet day today, so that will be good.  I'll update
more later.

Alesha

Some Thoughts on Lighting…

This
morning as I was getting ready for work, I was trying to fix my hair. 

(For those of you who don't know me, I have very thin
hair.)
 

I just couldn't seem to get the right side to do
what it was supposed to do.  It was sticking out in every wrong
direction and I was getting frustrated. 

Then I
realized that behind me on my bedside table was a lamp that was turned
on.
 

Usually this light is not on while I'm doing my
hair.  I walked over and turned it off, then went back to finish my
hair. 

Amazingly, there was nothing wrong with the right side of my
hair.  It looked just fine.

That little thing got me to thinking…

The Christian community is
notorious for embracing a little too easily all the new and exciting
rays of "light" that come along – personality catagories, famous
prayers, alliterative bracelets, spiritual diets, 40-day-programs
and books of the month – just to name a few. 

Do these things really bring peace
to my life?  Or do I find myself "hyper-focused" on one little tiny part
of my Christian walk?  Do these flickers of "light" actually cause me
to stumble? Even more troublesome, do they enable me to judge and
condemn others who have yet to see the "light"?

Am I spending so much time, money,
effort or thought on that little bit of "light" that I am overlooking
the big picture?

Don't
forget, II Corinthians tells us that the Evil One himself
is transformed into an "Angel of Light".

Be sure that the "light" you are
focused on today is that of Christ Himself, and clarify that through the
Word of God. 

We may
have to turn off that other "light" we've been spending so much time
in, so that we can clearly see what the Lord would have for us today. 

Maybe that aspect of our life that
we've been so zoomed in on is just fine as far as the Lord is
concerned.  He may want us to take our eyes off that and look around
us. 

Satan
would much rather me be focused on my own little light than for me to
see those in darkness around me. 

Alesha

Tuesday, 20 March 2007

Praise the Lord – we
were able to go to church together on Sunday.  It was so nice.  Isaac
started "singing" as soon as we got inside. 

He has been having quite a bit
of seizure activity, but not grand mals.  It's more of the smaller
seizures that take him out for only a few seconds at a time – over and
over.  He has many of them in a cluster. 

When he's experiencing these, he
doesn't sit very well.  He topples over suddenly.  He also has a hard
time drinking from his sippy cup.  His toungue wants to "hump" and the
liquid rolls out.  We just have to keep at it though and eventually he
can get the sipping part down again.

Isaac's also been staying up and
partying all night again!  Last night he stayed up until 6 this morning! 
Then he slept until noon!  What a life! 
Seriously, we suspect its seizure activity that keeps waking him up just
as he tries to drift off.

Doug has been reading the info from the hospital
about what to expect when we go.  I'm getting a little anxious about
it.  Not a good state of mind, I know.  I'm going to the Lord with it. 
He's working on me.  

I also made a really stupid mistake at work the end
of last week.  I wasn't slacking or doing something I wasn't supposed to
do.  I just forgot to do something that was really important.  I just
HATE when I do that!  I want to run home and never go back!  Then I get
mad, and after that self-pity tries to settle in.  Grrrrr…  

So, the Lord has been merciful
and given His Word and words of encouragement to me all along and I do
feel better today.  Still irritated with myself, but not dwelling on it
too much in my mind and singing praises to keep my focus on Him.

I guess that's it for today. 
Hopefully, something more interesting tomorrow.

Alesha

Saturday, 17 March 2007

Good Morning,

I thought
I'd include a few more pics from our trip.  It was such a beautiful day
and everything was new to me and therefore interesting.

100_2897

This was the Ronald McDonald
House.  Can you see that someone has painted only one coat of red paint
on a white wall. 
  This sign was perhaps the most
impressive part of our stay here.  'Nuff said!

100_2899

A little friendly dove
that greeted us at our 2nd. floor window.  He sat there all evening.

100_2910

I was amazed at how far you
could see of this skyline.  Good ol' FLAT Florida!

100_2937

One of the many
gorgeous, palm-tree-lined, neighborhood steets near the hospital.  The
tall spire is the Biltmore Hotel.  It was beautiful.  Unfortunately, I
didn't get a good shot from in front of the hotel.  It was truly
impressive.

100_2942

The gateway to a
Coral Gables neighborhood.  I'm thinking that in years past, this was
the main entrance.  Now it is just one of many.  Pretty though, huh?

100_2950

The construction going
on in downtown Miami was astonishing!

100_2951

100_2957

This was a beautiful shot.  I
wish my camera had captured the color of the water.  It was an amazing
turquoise green.  My hubby says this was the most beautiful scene we
saw.  Unfortunately, there was no place to stop to get a better picture.

100_2958

100_2976

Pretty little side street off
Ocean Drive.  See the quaint ivy-covered building?

100_2981

One last pic to pay homage to
my favorite beverage store!  Starbucks!  Can we say "Cinnamon Dolce
Latte"?  Yummmmmmmm…

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Isaac update:  Yesterday Doug
was able to get him in his stander for almost an hour.  That's really
good for us to do everyday, but some days his lateral hamstrings are
just too tight for us to get him in it.  He had a little seizure
activity last night, but slept really well.  He woke up smiling this
morning, but is also having seizure activity this morning.

We're praying for a good
weekend – I'd LOVE for all of us to get to go to church together
tomorrow.

Alesha

Friday, 16 March 2007

Yesterday Doug took Isaac to the
neurosurgeon to have his shunt checked.  It is draining well. 

His CAT scan showed that his ventricles
are getting smaller, but not as fast as the doctor wants them to.  So
they adjusted his shunt again. 

It's a magnet and can be made to open or close off the opening
that the fluid flows through.  The lowest setting is 0.5.  Isaac has
gone from 2.0 to 1.0. 

Let's
pray that this change does the trick.

He slept ALL NIGHT last night! 

WHOOOOO HOOOOOOO!

Praise the Lord!

Alesha

P.S. for
those of you who have asked about Isaac's diagnosis – He has
hydrocephalus (shunt revision – 12/13/06), epilepsy, GERD, delayed
gastric emptying, asthma, various eye conditions (although he does see
fairly well), developemental delays, and he is basically non-verbal and
non-mobile.  He can say about 10 words or short phrases, occasionally
using them with meaning. 

These diagnoses are
primarily due to a premature and traumatic birth, complicated by
substance abuse by his birth mother.  The wonderful little man that he
is today is due to God's grace and mercy – he was placed in a FABULOUS
foster home at 3 months of age (directly from the hospital), and then
came to live with us at 18 months old.  We adopted him just 3 days after
his 2nd. birthday.

He is our pride and joy and God's
perfect will for our lives.  We have determined that when Isaac has
something new going wrong it's because there are more doctors, nurses,
receptionists and parents who need to see God and witness His hand on
Isaac's life. 

It is amazing the places we have been
and the people we have met because of this little child.  We wouldn't
want to miss a thing God has for our family – so we just hang on and see
where God is taking us next.  Hopefully that doesn't mess with your
theology!!!!  We've learned that God just refuses to stay in
that box some churches and Christians try to put Him in!!!!! 
Imagine that!

Anyway, those are the things that are
going on with him medically.  Some day, I'll share with you the amazing,
funny little person that Isaac IS.  Diagnoses do not the person make!