Meanwhile, Back at the Ranch . . .

. . . Jackson is changing almost daily!  He started walking the week before Clayton's surgery and over the last weeks we've spent at the hospital, has become a pro at getting around on his feet!  It still breaks my heart that we weren't able to celebrate the special milestone of his first birthday, but I'm doing my best to not even think about it right now since Clayton still really isn't well enough to think about parties and such. 

He has words now (even if most are still in his secret language):  Still saying Daddy, added Momma, and "B" for his bottle (he had a relapse to the bottle with all the trauma of the last month), and when I start saying no, he starts repeating the "n" sounds back to me.  And speaking of saying no, he's a bit of a rebellious spirit.  Constantly getting into trouble and almost seeking it out just to give me a grin when I get onto him.  Getting onto him causes drama since Clayton can't stand to see him in trouble.  For instance, he was hitting Clayton on the head today with this ladle thingy and when I swatted him for it, Clayton started sobbing.  I guess he'd rather get hit on the head than watch his brother get in trouble!

He's a climber.  Climbs on EVERYTHING.  He would climb up and down this step a hundred times a day if I'd let him. 

He's gotten clingier than ever because of the last few weeks (who could blame him, right?).  And some might even say he's a whiney, whiney, boo, boo; but when he turns on the charm, he can melt your heart with his adorable belly laugh and beautiful smile.

Side note:  as we were going in from this brief trip outside, he ended up falling right on his noggin on the sidewalk.  His mood totally changed since his whole face was covered in road rash!

Keep on Praying

Clayton is not out of the woods yet (last night was pretty rough), but at least he can enjoy a little more activity each day.  His therapy sessions went well yesterday, but he was wiped out afterwards.  It might be a good while before he is back to his baseline activities and strength, but we'll take any progress over what he's had to endure these last few weeks!

I Have a Praise!

Clayton's headache was only mild last night!  He only needed one dose of ibuprofen and woke up this morning without a headache (or at least it seemed!).  His eyes were still dilated, but nothing like mornings past.  He usually wakes up with a wild look in his eyes and can't seem to focus, with his eyes almost bugging out of his head.  It was such a relief to see a mostly normal look coming from his beautiful eyes this morning!  Thank you, Jesus!

The Weekend

Clayton came home on Thursday for another period of waiting it out.  And in true form, he has had a headache both nights he's been here.  Absolutely crazy how he didn't have one headache in the hospital, but has them like clockwork here.  They come on each night around two or three and it takes him until noon the next day to get over them.  By one or two o'clock in the afternoon his eyes return to normal and he seems ready to try normal activities (although he's just too weak to do much of anything).  These past two evenings have been pretty normal except for trying to keep him laying flat most of the time.  (Laying flat helps temper the overdraining of the shunt).  In the meantime, we're on diaper duty overtime since all this extra fluid were pumping in him seems to fly right through!

Thank you so much to everyone for your prayers and well wishes.  While we are still exhausted, this round of headaches seems to be going better because we've changed our plan of attack.  We were giving him oxycodone for pain, and while it helped initially to get him to sleep, the craziness that followed when he was awake was just too much to take.  We've been using ibuprofen more this go around and we have tylenol with codiene if we need something stronger.  Cutting out the oxy seems to have cut out about half of the stress we were dealing with. 

We're just taking it day by day, praying the headaches disappear and looking forward to our follow up appointment in a couple of weeks.  Hopefully we'll be able to get back to some sort of routine, even if it means Clayton's day starts at noon for a while. 

Holding Pattern

I talked with the doctor yesterday and Brian had a super long talk with her this morning.  And it all comes down to this:  there simply isn't a quick fix for Clayton's issues.  The doc admits that her first instinct is to jump into surgery and fix him.  First problem with that is there are several surgical options and none are the clear cut answer.  Second problem is he is only a couple of days out from being treated for the staph infection on his incision.  If he got any infection in his spinal fluid during surgery, things could go from bad to worse really quick.  So we're basically between a rock and a hard place.  We need to wait longer before surgery, but that unfortunately means Clayton may have these headaches for a few more weeks.  Not exciting news. 

So we wait.

In the meantime, we've stepped up Clayton's fluid intake to almost double his normal amount.  Hydration helps with the production of spinal fluid, which will of course help keep those ventricles a little larger.  Any little bit helps . . . Doctor doesn't want Clayton to go home until he is up and moving around again like he was doing when he was discharged last week.  We are fine with that because we really don't want to push him.  In fact, he is still content to just lay in the bed so we will wait on him to start pushing more activity.  To be honest, we've slept better these last two nights at the hospital than we did on any night this last weekend at home.  If you get more sleep in the hospital than at home, then that's saying something!!

We are still praying Clayton adjusts to this new pressure and surgery becomes a nonissue.  The doctors can't take the pain away, and Brian and I certainly can't do it either.  Only a miracle from the Lord will make the headaches disappear.  And only once they are gone can Clayton begin to build his strength back up and start living life again. 

Update

Our weekend at home was a complete bust.  Each night Clayton woke up after only a couple hours of sleep, screaming in pain.  We nursed him through until the pain eased, usually around 6 or 7.  He would then spend the entire day recovering.  We finally decided we could take it no more (it was taking me and Brian both to make it through with him), so we're back in Memphis to see if we can finally get something more concrete done.

But of course, Clayton's been all smiles since we pulled into the parking lot.  He's subdued, but not acting like he feels all that bad.  The docs are going to start thinking we're making all of this up!!!

We'll see what the night brings and in the morning, we meet with the attending about what's been going on.

Pray this shunt gets fixed because right now there seems to be no end in sight!!

At Home, Again

Clayton's I.V. gave out early yesterday morning, so he was discharged from LeBonheur, or the "doctor room" as Clayton has decided to call it.  He was sent home on oral antibiotics. 

And for the third time in as many weeks, we came home and by the next morning, Clayton was waking up in severe pain. 

Seriously.

This is getting old.

We were able to catch it earlier in the night (2 AM) so we immediately gave him Oxycodone and just helped him ride it out.  He came around at about noon, and has been slowly recovering ever since. 

The plan from the doctor's point of view is to give him every opportunity to adjust on his own in order to avoid surgery.  The headaches are spacing out, and today's was a bit milder (still really bad though), so we can definitely see where she is coming from.  And we totally understand avoiding surgery, but it doesn't make it any easier to watch Clayton suffer through one of these horrific headaches. 

I talked to the doctor this afternoon and the plan is for me to just log the headaches and the specifics of each one so she can get the whole picture when we go back for his follow-up visit. 

But in the meantime, as Pastor Corey texted today, I pray his "healing comes quickly . . ."  (Is. 58)

Better Get Comfy

Guess we should just comfortable because as long as Clayton's I.V. holds out, the neuros here want him to finish his regimen of antibiotics.  That means this weekend at least before we go home (again, as long as he still has I.V. access).  In the meantime, we're using the time to our advantage, trying to get him up and out more and more each day, testing the waters so to speak.  We're trying to see if his brain has finally adjusted to this new low pressure environment.  If he's going to have another pain episode, I guess this is the place to have it instead of three hours away at home. 

At any rate, we're passing the time watching the preparations for the grand opening of the new hospital next door.  The trucks and people working kept Clayton more than entertained today.  They're even having a parade tomorrow that we're going to try to get to--funny how we're suddenly hyped up about a grand opening celebration of a hospital.  We're definitely desperate for something to pass the time!

Wrong Side of Memphis

**Clayton is doing better, still being treated for an infection which is most probably still localized to his incision.  He has been up a little the last two days, and we plan to keep pushing him on getting up and around.  We're praying his body is finally adjusting to the lower pressure the new shunt is giving him.

**Neuro docs say six more days of IV antibiotics, Infectious Disease docs say maybe not that long (we can go home on some oral meds)--we'll see how it works out.

**I don't know if we'll all be sane by the end of six more days.  Clayton is well enough to know he's missing out on life.  Granny and Pop were here this weekend and while it was good Clayton got to see them and we got to see Jackson, it just magnified the fact that things are anything but normal. 

Clayton's Status

Clayton had a good afternoon yesterday and even got to go downstairs to watch the cars in the front of the hospital.  He was still acting quite weak, but at least we could see a little spark in his eyes.  The doctor came in and visited with us after she studied his old CT scans and shared with us several options. 

Clayton's shunt is overdraining.  His brain is just not used to this low pressure environment.  Sometimes people can adjust to this change given time, and sometimes another surgery is involved.  The problem is there are many different surgical options for fixing the overdraining, and not one is the clear cut answer yet.  So after much talk and thought, the neurosurgeons asked us to wait it out for two more weeks and see if he can make the adjustment.  This morning the residents came in to discharge Clayton with orders to limit his activity and have him lay flat as much as possible.  Didn't sound fun and made me anxious, but we were willing to do it since they were offering solutions if that didn't work.  (Not what we were getting at ACH). 

After they left, I got up to go to Clayton's bed (since the residents always come at the crack of dawn when I'm still in bed).  Clayton's pillow had something all over it and it didn't take long to discover that his incision was leaking puss (sp?) all over it.  Called the docs back in, they took a culture and immediately ordered antibiotics.  Problem is, Clayton's I.V. quit yesterday and they had only gotten that one after five sticks.  The doctor really wanted I.V. antibiotics, but was willing to do oral to keep Clayton from being stuck again.  But I think that if his culture comes back positive for something, a PICC line is coming in the near future. 

Since then, Clayton has been pretty lethargic and the spark is gone again.  He's running fever and his heart rate is pretty elevated.  It's just been up and down constantly for these last two weeks.  We know he still needs to be here (especially with how he's acted this morning), but I'm really missing my regular life at the moment. 

So as my mom and I used to say in the NICU . . . . . could someone please just

FIX THE BABY?!!!!!!!

Making Something Happen

Well, so much has happened since I last blogged, that I really don't even know where to begin!  Clayton ended up staying at ACH through Monday and improved significantly in the last day and a half he was there.  His pain level seem to be nil and he was very interested in regular activities, and was tired of being in the bed.  And even though we were still having major communicatin issues with the neurosurgeon, we were willing to give him the benefit of the doubt when he kept telling us time would help Clayton regain his normal function level.  We went home Monday afternoon a bit anxious, but happy that Clayton was feeling so much better. 

But then yesterday morning was basically a rerun of last Thursday morning.  He woke up in pain, thrashing and crying and trying to vomit.  We spent the morning in crisis mode trying to decide what to do since we did not feel comfortable taking him back to ACH.  We finally settled on driving him to Memphis to see new neurosurgeons at LeBonheur Children's Hospital.  We were seen in the E.R. and the resident knew immediately that something definitely wasn't right and promised they would get to the bottom of it.  We met the attending doctor this morning, Stephanie Einhaus, and were very pleased with her bedside manner and determination to get Clayton fixed for real.  We've already learned a couple of things from her that we weren't told at ACH which definitely reinforces that it was a good decision to come here.

Clayton stayed in pain most of the day yesterday, but it finally subsided late in the afternoon.  His main complaint now is he wants to sit up and orders are for him to lay in a flat bed to keep his shunt from draining as much. (You know the shunt that is "working properly?"  Well, all docs here were very quick to ascertain that of course it's draining too much for Clayton---which doesn't take a BRAIN SURGEON to figure out!!!)  It was worth the drive over here just to hear our feelings as the parents validated for the first time since his surgery!

Currently we are waiting for his CT from yesterday to be compared to his CT's over the last week at ACH.  After the docs see those, they will have a better idea what they can do for him.  In the meantime, Brian and I have been super impressed with this hospital and their efforts in making the parents an equal part of the caregiving team.  It's amazing how different things can be from one hospital to the next.  (DISCLAIMER:  We love lots of people and departments at ACH, but the neurosurgery department leaves a lot to be desired).  

We are praying for a quick and correct resolution to Clayton's problem and praying we can get back home to live as a family with little Jackson (wonder if he'll even know us after this is all over?!).  We are looking forward to reporting Clayton's full recovery! 

Out of Touch

My phone died last night.  So until I make it to the nearest Verizon store to remedy the issue, if anyone is trying to text or call me, you'll have to use old school measures like email or landlines.  Imagine the inconvinience!

Still Here

at the hospital, that is . . .

There is no way to describe what all has transpired in the last 48 hours, so I won't attempt it.  I just ask that you continue to pray specifically for Clayton to stay pain-free and for Monday morning to bring big changes in his care.  I think doctors are finally beginning to realize that we will not stop fighting until they get it right.  It's just unfortunate that it takes a really squeaky and mean wheel to get some oil . . . 

Banging Head Against Wall

Clayton was taken back to the hospital by ambulance this morning.

He is in severe pain and the neurosurgeons want to "watch him" over the weekend and then make a decision about surgery.  This translates to Brian and I watching him suffer while they go do their own thing.  There is no way to describe our frustration with the neurosurgery team right now. 

Please pray for Clayton's pain to subside and for the right decisions to be made on his behalf. 

Lovely way to spend Jackson's first birthday.  :(

An Answer to Prayer

Clayton is home. 

He's not 100%, but at least he is well enough to be here instead of the hospital.

We are exhausted and I will update with more details later.  Continue to pray for his right hand and speech to be restored completely. 

Thank you everyone for the love you have shown over these past days. 

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. 

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!

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!

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?

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! 

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!!

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!)

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!

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! 

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!

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?!

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!!

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!

It's Baseball Season

It's baseball season, and now that the kids in our family are getting older, everyone is starting to get into the competition.  Clayton's game last weekend was rained out and we're keeping our fingers crossed that it doesn't happen again this weekend.  But in the meantime, we've been making the rounds to other ballparks to cheer everyone else on!

I just had to share this picture I got of my brother and my nephew though--Josh is coaching the team, so he gets to stand in the field and help the boys out.  And when I saw them standing side by side, I had flashbacks of the many summers my family's world revolved around Josh's ball schedule.  That whole world is foreign to Brian, but I think it's one of the best parts of summer!

Clayton's Room

I finally took pictures of Clayton's finished room this week.  I know a couple of people out there were wanting to see the finished product, so sorry it's taken this long!  I might have mentioned this before, but when we started planning his move into this room, he was adamant that it be painted green.  It took me forever to find a comforter I liked with green in it (seemed everything was too young or too old for him).  Finally found this one at Target (it was the last one they had), so I jumped on it.  I really like the way it turned out.

I kept three of his stuffed animals out because they were significant, at least to me anyway.  The bear with the glasses is the one he made at Build-a-Bear and I'm hoping the other two are recognized by the people who gave them to him.  :)

We left plenty of room for his wheelchair to get in front of the window and he absolutely loves the view.  And even if he is still in bed, he can wave to Daddy as he leaves for work.  (He is obsessed with waving at everyone as they leave!)

I had a bulletin board in my room growing up, and I decided it could be just as cool for a boy's room--it's a great place to put his stuff from school and church.  He got the tool set for Christmas and he doesn't "play" with them, only uses them if he is "helping" Daddy with a project.  But they do get played with plenty.  Jackson makes sure they are scattered from here to yonder by the end of each day.  :)

I got this artwork at Target as well--it was  perfect for Clayton since he loves, loves, loves vehicles--trucks especially!

Clayton loves his new space.  Loves it so much we often wonder if he'll ever want to join us in the living room again!  I'm so used to him being with me all the time, it's taking some adjusting.  But it's definitely time for him to have his own time in his own room!

Mighty Warriors

This weekend we had a Prayer Summit at our church.  Pastor Corey Jones of Crossroads Tabernacle was our leader in this endeavor.  I thought all day yesterday about what I would write about the weekend.  There really is no way to describe the movement of the Holy Spirit! 

He gave me lots to think about and I do believe our church will never be the same as a result of his insights.  I think the biggest revelation for me was the reminder that we are all MIGHTY WARRIORS in the sight of God (Judges 6).  When we pray, we use the most powerful sword imaginable against the enemy--and when we pray, the enemy is sent shaking in his boots!!!  Satan doesn't mind Bible study classes, regular church services, Sunday School parties, outreach programs, etc.  He infiltrates those types of meetings ALL. THE. TIME.  (How many of you know what I'm talking about here?!)  But a corporate prayer meeting?  When we are crying out to the Lord, calling down His Glory into our midst . . . Satan is powerless against it! 

"After they prayed, the place where they were meeting was shaken.  And they were all filled with the Holy Spirit and spoke the Word of God boldly." ~Acts 4:31

Never again will I get nervous in a prayer meeting when everyone is praying aloud.  And never again will I get nervous when people are lifting their hands in prayer.  It's taken me many years at a {semi}-charismatic church to get to this point, but I am finally in that place of not caring what others think.  If falling on my knees and crying out to the Lord will bring healing to Clayton (not the only prayer in my life, but it's at the top of the list), then let me humble myself before Him and let His will be done!

Help a Brother Out

Jackson is constantly pushing Clayton's chair these days. (Yes, he is quite strong enough to move it while Clayton is in it!)  At home, it gets a little dangerous since Clayton tends to go in circles on his own and Jackson can't get out of the way fast enough, but when we were at the park the other day, they seemed to actually be working together at moving the chair forward!  It's definitely interesting and comforting watching this part of their relationship unfold.

The only problem seems to be when Jackson puts the brakes on and can't figure out how to get them moving again!

It Was Clayton's Idea

Clayton volunteered to hold Jackson in his "black chair" so I didn't pass up the opportunity to get a new blog header out of the deal!  It's overdue for sure--hope everyone likes!

Counting to Ten

After the fourth or fifth time I took Jackson out of the dishwasher as I was trying to load it, I finally decided to calm my nerves by taking a few pictures.  Worked a whole lot better than fighting a losing battle!  And Jackson really liked it when he figured out it was entertaining Clayton:

Disclaimer:  No child was harmed in the taking of these pictures.  :)

He's a Ballplayer, Not a Benchwarmer!

Look at Clayton!  On the ready for any ground ball!!  That's what any tough third baseman looks like--no matter what league you play in!  Today's game was wonderful.  Seeing all the kids out there smiling (most of them at least!), having a blast just being kids, accepted as they are.  Clayton got a little nervous when the coach was putting on his jersey, but after that he warmed up quite well to his helper, Ms. Pam.  I don't think she pushed him around the bases fast enough, but she was able to talk him into wearing his glove longer than I've ever seen him keep something on his left hand, so I say kudos to her!

We've been practicing hitting off a tee, but they didn't use a tee in the game.  Guess we''ll have to do some more practicing with an actual pitcher!  And here he is ready to run at the crack of the bat: 

Playing second:

And just plain having fun:

I can't wait for next Saturday's game!

In Which They Bond

They spend time every morning and every afternoon being nosey, watching the action of the neighborhood together.  Maybe not the chosen activity of typical sets of brothers, but they seem as content as two peas in a pod during these moments together.   

Baseball: Here He Comes!!

Clayton's practicing for his first ballgame this weekend!  You can tell by that pursed lip that he's concentrating!  I've been looking forward to seeing him participate in baseball.  The soccer league was a bit of challenge with him having little to no use of his legs--it'll be fun to see him race around the bases in his chair!!! 

He can hit the ball on his own, but he's really more interested in taking the tee apart . . . I just hope stagefright doesn't get him those first couple of games since he tends to tense up around strangers.  I'm praying the fun involved will help him loosen up immediately so he can make friends with his coaches and buddies!

I Have to Brag

Clayton was SUCH a big boy today.  Today, for the FIRST TIME EVER, they took blood from him at the hosptial and he DID NOT CRY!!  He is usually hyperventilating and in meltdown mode during any stick, but today he handled it beautifully!!  Of course it helped that the nurse was extremely experienced and took plenty of time to find a vein (nearly impossible after all the damage his veins have endured).  When she finally did stick him, he tried to tune up, but we talked him out of it--instead he sat and made conversation with her and worried about Jackson misbehaving (and yes, he was misbehaving during the whole appointment!).  I am so, so PROUD of him for making it through a procedure without completely losing it!!  Now if we could just overcome x-rays, we'll be home free!!

This Week

We had a wonderful Easter--the weather was great and the time with family was special.  I tried my best to get a group shot of us, but as group shots normally go, not one turned out to be great of everyone--oh well, at least we're all there together!!  Clayton was laughing at me running back and forth from the camera in my heels!

Jackson spent most of the day clinging to me, but he did find time to climb all over my brother.  And Clayton enjoyed hunting for eggs since he only watched at the church egg hunt. 

This next pic pretty much sums up how the rest of the week has been going.  Jackson is all. over. the. place.  I'm pretty much following behind him putting out fires.  Clayton also has doctor's appointments on three days of this week.  Can't really get anything done when your whole day is scheduled around sitting in a waiting room.

 

He thinks nothing of climbing in and over things.  Scary what he'll do in the future!!

Easter: HE'S ALIVE!

There in the ground His body lay,

Light of the world by darkness slain.

Then bursting forth in glorious Day,

Up from the grave He rose again!

And as He stands in victory,

Sin’s curse has lost its grip on me!

For I am His and He is mine,

Bought with the precious blood of Christ!

Ten Months

17 pounds, 2 1/2 ounces (10th percentile)

28 3/4 inches long (75th percentile)

(tall, but tiny!)

I really can't believe that Jackson is ten months old today!  He has opened our eyes in so many refreshing ways, he is truly a blessing and miracle to our family.  His little personality is emerging more and more each day, I love learning all the little details that are special to only him.  Thank you, Lord, for the beautiful gift that is our baby son!

Jackson is . . .

**now smiling with eight teeth

**standing for brief moments without any support

**a future climber--his leg hikes up, just can't quite get on top of most things

**waving constantly, yelling "HEY!" to everyone

**saying Da-da, a couple of times with true meaning

**constantly babbling about something, telling me many stories even as we ride in the car

**determined that "NO" means "YES!"

**still loving the taste of dog food (see previous)

**loving the dog, although she runs and hides whenever he gets near

**determined to feed himself--shuns baby food

**finally acclimated to the church nursery (big YAY on that one!)

**finally enjoying the attention of strangers--loves flashing his grin at them

**still attached to his comfort item, the ever-present bottle

**still waking at night, but drifts back off with just a few comforting touches

**still the cutest little stinker around.  :)

Just a Day in the Life . . .

Just a quick play by play of my Thursday, April 1:

**still not used to waking up AND getting up at 6:30 or 7:00, but Jackson's determined to break me in.

**I did get to cheat a bit this morning though--Jackson stayed in the bathroom while Brian took a shower, and I snuggled with Clayton in his bed for old times sake.  :)

**reality hit when Brian delivered Jackson to me with a dirty diaper--still wondering why he didn't attempt to change it.  He ended up having to help me anyway since after I laid Jackson down and had his diaper off, I realized the poop was all the way up his back.  So at 7:30, I was giving Jackson a bath. 

**Jackson was his normal on-the-go self, so I spent the next couple of hours chasing him around, generally putting out fires and avoiding all sorts of crises.  (The main crisis being when Jackson gets run over by Clayton's crazy circle driving!).

**Decided I would get myself a shower . . . Jackson usually just pines after me through the doors like we haven't seen each other in ages, but today he figured out how to open the door.  So I bathed while holding the door closed with my knee.  But when I turned around to shave me legs, it took me a few minutes to realize that he had actually climbed into the shower with me, fully clothed.  When I turned around he was completely soaked, and not bothered by it one bit.  I got him out, and quickly wrapped up the leg shaving before he was back in again!

**While I got dressed, he climbed in the shower again.  Guess it's his new favorite place.

**After I distracted him from the shower, he decided climbing completely underneath the bathroom lavatory was even better (once he had cleared the entire cabinet out that is!).

**I finally got us all loaded up for the therapy run, and before I could get the wheelchair in the van, the phone started ringing.  Left the chair in the garage next to the van without the brakes on . . . (you know what's coming next, right?)  Answered the phone, it's a doctor's office reminding me of our appointment.  As soon as she identifies herself, I see the wheelchair rolling down the driveway, on its way into the road!  I started screaming into the phone, "OUR WHEELCHAIR IS GOING INTO THE ROAD!!!  OUR WHEELCHAIR!"  I dropped the phone and luckily by the time I got out there it had veered off into the grass and stopped.  Clayton couldn't breathe he was laughing so hard, and even though I explained to the lady on the phone, I'm sure she was thinking I was a complete nut!

**After therapy, we went Krogering.  I've only ventured to Target with the wheelchair and Jackson, so Kroger was going to be something new.  With the old chair, it seemed to do well with me putting it directly behind the buggy, and letting Clayton essentially push the buggy with Jackson in it.  Not so with the new wheelchair . . . but it took me until the bread aisle to figure out it wasn't going to work like that!  I limped along making a complete fool of myself while we waited to find the groove that would work--we got some stares that's for sure!  I finally ended up pushing Clayton's chair and pulling the buggy.  Which gave the caboose to Jackson--which he didn't like since I was more than two inches away from him.  So to show his displeasure, he constantly needed another snack, and constantly needed his bottle since he was constantly throwing it down on the ground.  Yeah, he knows he's got me . . .

**We lost my list on aisle two, so we had to back track until I found it on the floor.  Backtracking with our train is not fun!

**Jackson threw about half of his cheez-its in the floor in the Easter aisle.  Loved cleaning up that mess!

**The only consolation was that since Clayton was looking so awesome in his chair, several people were commenting on how cute he was (it's been a long time since strangers have fawned over him like they did today).  I think he just looks more comfortable and so "little boy."  It's just so much better!

**And even though Jackson was a stinker, people were fawning over him too--he is definitely a cutie, and he knows it full well!! 

**Thankfully, Jackson fell asleep on the way home and Clayton and I were able to enjoy some quite time unloading the groceries and other chores before he woke back up with renewed energy.  And thankfully, there were no other major happenings for the rest of the evening--I think we all needed the break!