Sunday, May 30, 2010

Quick Update

Hello all.  I'm home for just a few minutes and since I can't update my blog from the hospital, decided it was a priority while I was here.  Clayton seemed to be doing better yesterday afternoon, was waking up complaining and bossing us around, which is always a good sign.  He still seemed to be needing lots of sleep but it wasn't a concern since he has just had brain surgery . . .

Around five this morning, he woke up telling me he wanted to go home, and to get his chair.  I figured that was a sign he was on the mend.  He was still lethargic, but in his awake moments talked to me.  He was released from the PICU into a regular room mid-morning, but shortly after noon Brian and I realized that something just wasn't right.  He wanted to sit up, but as soon as he sat up, he would get a weird look and we knew he needed to lay back down.  He also couldn't keep his eyes open and quickly even lost almost all ability to even whisper anything to us.  The nurses were immediately concerned as well and contacted the doctor on call.  He ordered a CT and after waiting FOREVER on hospital protocol, we finally made it downstairs for the scan.  He perked up enough to fight against the scan, but afterwards fell back into his lethargic state. 

Long story longer, his CT scan did not show another shunt malfunction, but showed that his ventricles had drained too much.  They were hardly even visible on the scan.  The doctor said that there is no immediate danger from this, but it is extremely painful, which explained his state.  He's basically suffering from a migraine times a hundred!  This condition can go one of two ways:  either it resolves on its own or they have to do surgery again in order to regulate the valve better in the shunt.  PLEASE PRAY HIS VENTRICLES RETURN TO A NORMAL SIZE ON THEIR OWN!

Another specific prayer request involves his right hand.  Something hasn't been quite right about it since Friday.  He had an I.V. taped to it, so we were willing to blame it on that.  The I.V. came out tonight and his hand looked normal.  But then Clayton tried to scratch his nose and couldn't even get his hand to cooperate.  It was scary watching him try to coordinate his hand.  It was shaking all over the place.  His right hand is literally his only functional extremity.  PLEASE PRAY THESE SYMPTOMS ARE ONLY TEMPORARY AND THAT FULL USE OF HIS RIGHT HAND RETURNS!!! 

We appreciate everyone praying for Clayton.  Prayers and miracles have gotten him this far and we fully expect the Lord to keep blessing him with healing. 

The hospital computer systems keep me blocked from my blog, so I'll do my best to update when I can. 

Friday, May 28, 2010

Can't Even Think of a Good Title

My birthday started early this year . . .

Clayton woke us up with a scream at around 2 am. He was acting like he needed to throw up, but we quickly realized something else was wrong because his pupils were fixed and dialated. Long story short, he was transferred by ambulance to the hospital, where he remained unresponsive. While tests showed no change in his CT Scans from normal checkups, he was taken to surgery around 6 am for exploration around his shunt to see if it was malfunctioning. While the actual shunt was still working, the catheter at the top of the shunt did seem to be clogged and a new tip was placed at the top of the shunt. He came out of surgery intubated and sedated.

It took all afternoon for him to rouse enough for them to fill comfortable with extubating him (removing breathing tube), and he is still very sick. His right hand (his only "good" extremity) seemed to be contracting and stayed fisted most of the day. It is worrisome that neurologically something still isn't right. He still acts nauseated and has a slight fever. Blood cultures from this morning show positive for infection, but are being repeated to confirm results are true and not from the test accidentally being contaminated.

He has asked for Daddy and Momma this evening (or I should said YELLED for Daddy and Momma!), so we are encouraged that he is coming around. Please pray Clayton continues to get better and all neurological damage, if any, is healed. And please pray for Brian and me. We are beyond emotionally drained from watching our child fight these battles. There is no way to describe the fear and dread that comes when he ends up back in the hospital. It seems the longer he is free from the hospital, the harder it is to watch him have to go back.

I know there are many prayer warriors out there storming Heaven on Clayton's behalf---thank you everyone for loving our little boy and for being willing to literally MOVE Heaven and earth in prayer!

Flashback Friday

In honor of my birthday today, I thought it only appropriate to flashback to 1970-something!

Wednesday, May 26, 2010

Field Trip

We went on a field trip today with a huge group of homeschoolers.  We toured an Egyptian exhibit and a military museum.  Clayton was mainly interested in watching the people and directing his drivers, but this jeep in the military museum did catch his attention.  He just couldn't understand why we couldn't go for a ride in it!  I say (and Clayton would probably agree) that the best part of the trip was that Daddy got to come along with us!

Tuesday, May 25, 2010

Just A Glimpse

I've begged.  I've pleaded.  I've made big promises.  But still no cooperation.  Clayton is just not impressed with my camera anymore.  I wanted to get a shot of him with a full grin on so you could all see that snaggletoothed smile, but it just ain't gonna happen, folks!  So for now, his soft little smile at someone ELSE'S mother is going to have to do.

I'm not jealous.  Did I say I was jealous?

Saturday, May 22, 2010

Friday Out

We spent most of yesterday at a nearby state park and it was wonderful to get outside.  It was almost a bit too hot at times, but in the shade it was perfect!  We had a picnic lunch with some of our homeschooling friends and then went for a short "hike" in the woods.  I even managed to get Clayton up to one of the observation decks (carrying him up stairs is not fun anymore!).  As it turned out, the view from the deck wasn't that spectacular, but he didn't care.  He just wanted to be with everyone else! 

I couldn't help but get a little frustrated with the logistics of it all though.  Sometimes things just hit me a certain way, and yesterday was one of those days.  When we were searching out a picnic spot, there was absolutely no wheelchair friendly paths to any picnic table in the area we were in.  All the other kids bounded down the stairs and Clayton just had to sit and watch and then we had to go into problem-solving mode.  How in the world were we going to get down the side of this hill without hurting ourselves?!  The steps were too many and too steep to just carry the chair like we normally do when we need to adpat (which is also annoying, but still doable at his age).  We finally found a route we could go through the grass and mud, so we plowed through.  It was great fun for Clayton watching us pull and tug the chair and stroller, but the chair did get really dirty.  And then once we got to the picnic area, Clayton put his hands on his wheels, got the dirt on his hands, and sensory issues kicked in.  Major gagging in front of the whole crowd, with all of the kids asking questions and staring.  They are naturally curious, but I just hate it for Clayton because the best thing for him is just for everyone to ignore it.  He recovered pretty quickly, but he didn't want to have anything to do with lunch or food after that though. 

I will say that even though the logistics were getting on my nerves, one thing that is so great is the way this particular group of kids is coming along with Clayton.  They are getting better and better at including him and learning about his little personality quirks.  It's still a work in progress, but they are always willing to try to include him and help with him. 

It was so nice to get outside for most of the day.  Pretty soon, the Arkansas heat will set in, so we have to enjoy these tolerable days outside while we can! 

Tuesday, May 18, 2010

Did You Know?

I've had laryngitis for the past two and a half days.  I have to sing a solo for a baby dedication on Sunday.  To "save" my voice, I've been whispering for two days straight and then tonight I read on all these med websites that whispering can actually put more of a strain on your vocal chords!  Am I the only one who didn't know this?  Because dumb me has probably prolonged being hoarse!!  Guess I'll be talking in my squeaky low voice from now on out!!

Sunday, May 16, 2010

Caravan Blue and White Dinner

As most of you know, I am the director of the Wednesday night children's ministries at our church--otherwise known as Caravan.  We celebrated the Caravan year with our Annual Blue and White Dinner tonight and it was a great night.  We had yummy food served by great children and lots of good fellowship.  And the kids got to show off some of what they had been doing during the past few months.  This was Clayton's first official year in Caravan.  I love seeing him in his little Caravan scarf with all the badges he's earned. 

He started out interested in serving his table . . .
. . . but quickly decided socializing was more fun.

(Notice the glimpse of the new smile?  As you can see he's just totally on camera strike these days and saves his smiles for everyone else.  I'm determined to get a good one of his toothless grin soon though!)

Thursday, May 13, 2010

First Haircut

Jackson had his first haircut this morning!  It went pretty well considering I had to wake him up to get him out of the car.  He was a little on the grumpy side (he's also cutting a tooth, so the grumpiness was more than the usual "why the heck did you wake me up?")  He also wasn't happy about posing for pictures since it meant giving up Momma for a few seconds!  But during the actual haircut, he was a little angel and jibber jabbered away to Chasity while she worked.  She barely cut any hair off, but it looks so much better since it's not hanging over his eyes and ears!
Here's the before:

And the after:
Little Handsome Man!

Wednesday, May 12, 2010

My Brain=Scrambled Egg

I know I've talked about this before, but SERIOUSLY!  I am constantly chasing my tail around here!  I used to have things so together and then Shawn and Clayton were born.  And after Clayton finally got stable, it took about a year after that (he was probably at least four) for us to settle into a groove.  And then came Jackson!  I literally cannot get anything accomplished completely (notice lots of stale blog days lately?).  I am doing most things halfway, just enough to get by and it seems I'm always playing catch up.  Is it just having a toddler that does this?  Please tell me it will get better??!!  I forget everything, misplace things (where is that iPOD?), and basically make myself look like a nut half the time when people remind me what I should be doing, bringing, etc.  I don't like feeling so undone and hope beyond hope that as Jackson gets older I will be able to settle more into a routine of getting things accomplished.  Until then, I'll just be the crazy lady that's lucky if she remembers to put both kids in the car! 

Monday, May 10, 2010

Saving More Stem Cells

If you remember my post about saving Jackson's cord blood, then you'll be interested in knowing all about our latest quest for usable stem cells for Clayton. 
Last Thursday, Clayton had his annual visit to the operating room for dental work.  Dr. K cleans and polishes his teeth, takes x-rays of everything, and in these last two visits, pulls teeth that are loose.  (No one wants to risk Clayton gagging on or aspirating a tooth).  We were late to the game on learning about available stem cells in teeth, (I so wish we could have saved his first two lost teeth) but we made the decision this time to bank Clayton's three pulled teeth (his top two and one lower), in the hopes that some of his own stem cells will be usable for a future infusion. 

We'll know in about three weeks if there were any usable cells in these teeth.  His baby teeth were being formed when he was going through MUCH trauma, so they aren't exactly the healthiest of teeth.  We're praying for SOMETHING to come of this--you just never know . . . it may be the Lord's way of healing Clayton!

Wednesday, May 05, 2010

New Camera

Yes, for the inquiring minds who wanted to know, I did get a new camera! Dearest hubby decided (with little to no conjoling from the salesman) that I needed an upgrade. I'm now the proud owner and operator of a Canon 7D. Quite the jump from my lowly 20D that at only five years old was a dinosaur in the technological sense. I'm also shooting with two more lenses, one being the sainted 50mm/1.4, which has now become my favorite piece of photography equipment! Why in the world did I wait so long to invest in this lens?!

Tuesday, May 04, 2010

Game Day

Clayton and I went to the Arkansas Travelers game on Monday.  It was quite the experience since all Arkansas school districts received free admission and it seemed like every kid in the state was there!  We were lucky enough to find a seat in the shade, and while I {tried} to watch the game, Clayton watched the people.  There was just way too much stimulation going on for him to even look at the field!

Once the kids left to get back to school on time, Clayton was able to see that there actually was a game going on!  He even practiced making "SAFE!" and "OUT!" calls with me.  It was nice to have some alone time with him--a big shout out to my parents for chasing Action Jackson all day long!!

Monday, May 03, 2010

Eleven Months

I can't believe we are one month away from celebrating a year with our little man!

At eleven months, Jackson is . . .

**standing on his own from all kinds of starting positions

**still doing some "regular" crawling but mostly gets everywhere by what we call the "crab crawl"

**jabbering away--he seems to repeat what we say with the same inflections we use

**still waving at everyone, yelling "HEY!"

**still saying Da-Da, and something sounding like Momma comes out occassionally

**into throwing things into the toilet if we forget to close the lid

**still not sleeping completely through the night consistently (I think it's something we've passed on to our kids!)

**becoming a picky eater--doesn't want the usual kid stuff like mac-n-cheese.  I struggle to get him fed something of substance each day and I pray he gets over this dislike of soft foods (we don't need anymore feeding therapy/sensory issues around this house!)

**loving the church nursery and always gets a good report on his behavior.  :)

**loving cars and trucks, and when he can't find one, he just pushes other toys/objects around as if they were one

**getting more and more mobile everyday, busy exploring the wide expanse of world around him!