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.
6 comments:
I just recently started following your blog. My heart goes out to you, Clayton, and the rest of your family. I know how hard it is to watch your child suffer, especially when you feel so helpless to make things better.
The outings sound like a good step in the right direction. I'm sending positive thoughts and prayers to you all.
Tara
Mom to Jonah (spastic triplegia CP), Alexandra and Eliot
Big hugs Ashley. This has to be so hard. Don't forget that Clayton needs to see Mom do some of her usual stuff as well. That will help him feel more "normal". You can't provide energy for him that you don't have to give, so recharge your batteries as well. Know that you are still in my prayers for strength, healing and to find some joy in life right now.
Ashley I am so sorry to hear this! I will continue to pray for Clayton and for you and Brian. It is so hard to see our children hurting. It rips your heart out! I cannot imagine his frustration at not being able to do the things he has done before. Praying the slow return to "normal" will do wonders for him.
Would a muscle relaxer help with the sleeping? Charlie gets little tremors in his legs, but so far they don't keep him up. I actually had a muscle spasm in my jaw recently and i found muscle relaxers to be helpful for sleeping.
Prayers for you guys--I do hope that things improve.
Ashley, I've followed you blog for years now, just needed to let you know that your family is in my thoughts and prayers and in the prayers of many. Clayton has been blessed with such wonderful parents as you and Brian. Jeremiah 29:11 For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.
God Bless!
I hear the struggle and heartbreak in your words, Ashley. I think the outings will do you as much good as they will Clayton. Continued prayer to your family and for healing for Clayton.
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