Part Monkey

I told you he liked to climb . . . the tray used to keep him off of Clayton's chair, but now that doesn't even seem to stop him.  I'm constantly pulling him off of Clayton as he doesn't seem to mind the swats on his behind and/or the "timeouts." 

He's quite proud of himself too . . . but Clayton is less than thrilled with this invasion of his space!  (And I don't blame him!)

We've Been Busy

If you're wondering why I've neglected the blog, it's because we have been BUSY!  Once we decided that it was activity Clayton needed, it was activity Clayton got!  He's been going to therapy at the clinic and got rave reviews on his performance during aquatic therapy, and he's been spending time with his friends in one of our local pools.  We've also made several trips to the store at his request, even though by the end of the week we really didn't need anything but the actual outing.  (I even braved Hobby Lobby with the two of them--don't think I'll be trying that again anytime soon!)  This weekend, we made it to the lake for the first time this summer and Clayton was excited to get to ride the tube with Momma and Granny.  Momma and Granny not so excited, but we sacrificed! 

This week is no different.  Vacation Bible School is in full swing and we've got lots of therapy and appointments keeping us busy and on the run.  It's amazing how quickly Clayton improved once he really started getting out.  While we were waiting for him to show signs of improving endurance, he was sitting around waiting for us to give him a chance to!  He is sitting up taller in his chair and his conversational abilities are back in full swing.  (Especially now that he has new things to talk about!)  It's great to see him back to his old self--now we just pray for that right hand to regain its function and he'll be good as new!!!

It's Hot . . .

. . . really, really HOT!

But Jackson isn't going to let a little heat get in the way of playing outside--at least as long as he has plenty of relief nearby!

Glimpses of Normal

We had lots of activities to keep us busy this weekend!  And we were rewarded by getting to see Clayton's sweet smile!!!  This picture was taken as he watched one of his Gaither videos.  I think the main reason he was excited was because he had roped the whole extended family into watching--he loves to share the music with everyone!  He was singing and clapping away--it was wonderful to see.  We also made it out to my brother's yesterday afternoon for a day of swimming.  Clayton had a a great time and really had fun riding the four wheeler while we were there.  The really great part about all of this was he didn't seem completely exhausted after the weekend.  I'm hoping that means his endurance is increasing faster than we thought!

Rocky Road

Wow.  This last day and a half have been some kind of rough.  Physically rough, but mainly emotionally draining.  I went to church last night and the entire group there cried out to God on Clayton's behalf.  I came home and Clayton had his worst night since he was last released from the hospital.  (Have I mentioned that God's timing is never my timing?).  Clayton started yesterday afternoon just crying for no reason at absolutely random times.  And by last night, he wasn't taking breaks.  Just wanted to cry and hit stuff and get mad.  I told him to just let it all out!  If you're mad, then just be mad and cry all you want!!

By bedtime, his legs were literally spazzing out . . . He was so tired and exhausted, but each time his eyes closed, his whole body would shake with a spasm.  I don't know which is worse, watching him suffer from a headache or watching his legs pop around with no control.  Well, maybe I do know--last night was worse because we didn't have a remedy for the situation.  I'll stop the story here to say that we have been extremely blessed in this regard up to this point.  Although his legs are extremely high toned and spastic, his spasms have never been so overboard that we've had to keep him doped up to counteract them.  So last night was new territory for us and it wasn't fun.  He finally fell asleep laying crossways on our bed last night about 2:00.  Brian and I just left him right there, scared to death to disturb him! 

He woke up this morning with no spasms, but his voice was gone (this happened in the hospital after the headaches).  He has been struggling to speak all day and again been extremely emotional about the smallest things.  There's no doubt that he is depressed.  I spoke to one of his main nurses for a long time today and we agreed that we've got to be more aggressive on getting him back to his "normal" activities.  He's got to get out of this house or I think he's going to go crazy!!  We're just going to start with short stints and slowly build up.  There's a fine line between pushing just enough to get him going and pushing him overboard energy wise. 

We're starting tomorrow with a trip to the pool--and if he only lasts 30 minutes, well at least he got those 30 minutes out among the living.  I'm also going to talk to the therapists about moving his therapy back to the clinic.  It's going to be hard on him, but I really believe it will be good for his heart to get back around his usual peeps.  We'll just have to start with short sessions and build up. We've also got some other things we're working on pharmacological wise, but I have to wait to talk to the doctor more about that. 

Clayton's body has taken a major hit.  It is heartbreaking to watch him struggle like this.  And to not even smile anymore!!  He even got mad when Brian and I were trying to love on him last night.  The little boy who is always saying, "Momma, give me a kiss!" didn't want a kiss!!!  Just. so. totally. sad.  There's just no other way to put it. 

Reality

The reality is Clayton is still so weak.  The tiniest activities zap what little energy he has.  His trunk is not strong enough to hold him upright and by the end of the last two days, he hasn't even been able to hold his head up. 

The reality is his right hand still doesn't function like it used to.  His pincer grasp just isn't there right now and it's frustrating for him and definitely frustrating to watch.

The reality is it took him years to gain these skills the first go-around.

The reality is Clayton is getting down.  He barely smiled today.  He's cried over the smallest things and this evening he was crying over nothing specific that we could tell.  I asked him if his head hurt several times and got no response.  I asked if he was just sad and he nodded with his little bottom lip poked out.  My heart strings are about tugged out!!  How do I explain to him that it's just going to take lots of time and practice to get things back to where they were?  There's no way to tell what is going through that little head of his, but I'm sure it's got to be scary and sad not knowing why his body won't do what it used to. 

The Road to Recovery

He rescued me because He DELIGHTED in me.

Psalm 18:19b

We are so thankful to the Lord!  Clayton seems to have turned a corner in the right direction and is now traveling down the road to recovery!  It has been over a week since his last major headache and he is gaining strength literally by the day.  We went to Memphis yesterday for his follow up appointment with the neurosurgeon and to quote her talking to Clayton:  "God healed your boo-boo."  We couldn't agree more!

You can just tell by looking in his eyes that he is feeling like his old self.  He is staying up for longer periods of time and doesn't even have to nap on some days.  He still has some obstacles to overcome, namely strength and fine motor skills in his right hand.  Sitting in his regular wheelchair for the duration of the doctor visit yesterday wore him out.  His trunk has always been his weakest point, so it's no wonder he has no strength in it after laying in bed for a month.  He has use of his right hand, but his movement patterns are definitely not the same.  He tends to fist it up a lot more when he never fisted it in the past.  I hate seeing the regression in what was his only functional extremity, but we'll just keep attacking it with all types of therapy, and pray the movement patterns return.  I also pray this happens quickly as I already see him getting frustrated with his lack of control of his fingers. 

There is no way to describe how thankful we are for the prayers and support we have received during this last month!  We have felt the love from across town, the nation, and the globe!!!  Knowing so many people are praying for my little boy literally brings me tears.  THANK YOU for taking time out of your days to lift him up--your prayers are still being answered and I hope that you see that in his beautiful smile!

A Chance to Relax

For the first time in a month and a half, we were finally able to enjoy some down time.  My brother and his wife had a small pool party for the Fourth of July holiday, and we were more than happy to attend!  Clayton is still quite weak and not up to a lot of heat, so he stayed with Granny and Pop and had just as good a time as the rest of us (he was needing some Granny-bonding BIG TIME!). 

This was Jackson's second time in the pool and for a kid who loves the bathtub, was still quite nervous.  We figured out he just didn't like not being grounded, because once he got to hang out on the steps, he was happy-go-lucky and Mr. Social. 

It felt so good to get out and doing something different for a change.  We've been so wrapped up in getting Clayton well that I was just about to go stir-crazy!  I am so thankful he is on the mend, since that means outings like this will happen more and more often for our family!

Flashback Friday

June 2006

Arkansas Korean War Memorial Dedication Ceremony