(photo taken in Nov.)
Here is an update from Mimi for you all...I know you have been anxiously awaiting an update!
"I really want to describe Julian's day to you all. I want you to understand the pain, the anger episodes, the frustration, the few happy moments with brothers or with Mamie. I can't talk for Julian, he doesnt complain that much, his head hasnt been hurting , he does repeat often that his brain is tired. And while he cant use his legs , bend them himself, stretch them, and while he cant turn by himself in the bed, he can feel so much pain in there.
I don't quite understand why since he cant use them ,he can still feel them. He also can't pee without straining or poop, he doesnt have the same sensation as he did when he was healthy. He hates going in his pull up and it makes it for many many unsuccessful trips to the bathroom throughout the day. I want to put him in the bathtub so bad but I know it will be hard and painful. I think once he is in the water it will feel good, so we will see... His left eye is closed most of the day and if it opens, it looks to the side. He never complains or asks why. He reminds me every once in a while that one of his eyes is tired and thats why it stays closed, and also that his legs are too tired. He gets angry when he is tired and ready to sleep and we make noise.or if he wants to hear the tv, I mean he yells at us and says"Can someone just be quiet?" "go away" "go talk somewhere else" and if I dont answer to my name right away he screams my name again. He eats exclusively Stoffer's spaghettis and meatballs, which we HAVE to have in the freezer at all time since sometimes the king wants them at 2 am...
To us, the rest of the family, it feels a little bit like a bootcamp leader moved in! Actually ,a lot...The other kids have to be quiet most of the day...how do you keep 3 boys quiet ? They get yelled at and feel like they have to apologize to him . I especially feel bad for William who wants to love on Julian and is worried about his booboos. But then when he has had his drugs and feels good, he is the most awesome kiddo. Loving, funny, playfull. I love it when he wants just one more kiss but thats it for today... I love when he speaks "french " to Mamie... I love it when he says to me " I just love your smell Mama " and he snuggles his face in my neck.
I love his dimples when he smiles because he says he is a stink bug. I love when William climbs on his bed and he says "Hi Weehiam" and wants a hug... Or when I bump him and apologize and he says "I never mind if you bump me, mama " Anyways, we take it one day or one hour at a time. Mood swings are part of life at our house , as well as laughter, tears, hugs, love and hope..." A friend of Julian's family circulated the following in an email...I thought it was a FANTASTIC idea and wanted to share... PLEASE LAY YOUR HANDS ON JULIAN'S PICTURE AND IF YOU WANT PRINT IT AND SAY THIS PRAYER. FOR JULIAN AND HIS PARENTS AND GRANDPARENTS.
PRAY "BY JESUS STRIPES JULIAN IS HEALED,AND FATHER GOD WE ALSO PRAY FOR JULIAN PARENTS AND GRANDPARENTS FOR PEACE." AND START SEEING MIRACLES HAPPEN.
AND FOR THOSE WHO WANT TO JOIN ME IN A FAST ONCE A WEEK (WEDNESDAY'S) OR WHATEVER DAY YOU WANT PREFERABLY AT THE SAME TIME UNTIL THE END OF THE YEAR, BUT IF YOU CANNOT DO IT, THAT IS OK, GOD KNOWS YOUR HEART.
AND AS SAID, IF YOU GET HUNGRY DURING THE FAST, "PRAY FOR JULIAN, IN JESUS NAME!" GOD BLESS ALL