Tuesday, February 16, 2010

Over and over again!

This is my child right now. I am heart broken. Today alone he has fallen down so many times that he has a fat lip on the top...and the bottom. That huge lump above his eye...he fell and hit the same spot twice. His red cheeks are from falling flat on his face, over and over again. He has bruises and marks all over his body. He continues to have seizure activity. There have been a couple days thrown in where he seems to be improving and then...BAM...some other complication, or the same old thing. He is not having long seizures as of lately, but he is having very sort ones, OVER and OVER again! He will be standing next to me one moment and then flying over backwards the next as if some invisible force yanked him down. Or he will be walking and suddenly fall forward and smack his face into the ground. He seems unable to catch him self, because his body is contracting or flailing as he falls. There is no warning. Some times he can talk fairly well, other times it is an absolute struggle or not at all. He is drooling non-stop and is back in pull ups because he can't control himself. When he starts to cry, it just tears me up inside. He wants to play so bad, but he can't really because he keeps falling all over the place, it's so sad to watch. He doesn't want to sit still though and I can't make him, so he ends up getting hurt over and over again. Somethings got to change, somethings got to give. Today on the phone with his neurologist she started throwing some scary stuff out there that I don't want to acknowledge just yet, stuff about limited options when medicine doesn't work, and how she had to get yet another opinion before talking to me further. She is going to call tomorrow, and I am not going to sleep very well tonight.
Look at him, still trying to smile through it all! Today after he had fallen down and got the shiner for the first time above his eye I sat on the couch with him and started to cry. I was feeling so overwhelmed and frustrated. I really started to get weepy and I looked over at Atty as I cried. He looked up at me and started to laugh. Laugh! He was laughing at me. I said "Why are you laughing, mommy is sad that you are hurt." He got serious and said in his tiny slurred voice "Momma cry?" I said yes and started to cry again and he laughed at me again! So I couldn't help myself and I started to laugh too because his giggle is so contagious. We sat on the couch and laughed together through our tears. His tears from falling down again, mine from watching my child suffer. Our laughter was at each other. I'm still not quite sure why. But that's what I love so much about him, he sees the funny in situations where no one else would.


Brittany said...

ohhh honey! I hope you know you have big-big-big prayers coming from us over at the Johnson household!

Tell atty I think he looks awfuly tough! :) Like a real champ! I love the picture of him smiling, because thats kids for you! They are so resilient! He'll get through this, and so will you. (although that doesn't make it ANY easier!) I pray that God heals Atty! (((hugs)))

Kat said...

Oh no. That poor boy. But what a little champion he is. Brittany is right! A toughie! Tell him that from me too.
And you are a champion too. I can not imagine how hard it is to see your child struggle so. I am so sorry.
But it will get better. You will get through this.
Sending all my good thoughts and prayers to you and Atty and the rest of your family!!!!

Lisa said...

I will continue to pray for your sweet sweet boy. (((hugs)))

mommytoalot said...

He's a trooper...
Bless you both

MGM said...

You're breaking my heart! I'm so sorry! I'm at a loss for words, but please know you guys are in my prayers!