Monday, July 19, 2010
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!
Thursday, July 15, 2010
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.
Wednesday, July 14, 2010
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.
Friday, July 09, 2010
He rescued me because He DELIGHTED in me.
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!
Tuesday, July 06, 2010
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!