Today was kinda a rough day again. Kevin and I are both very frustrated because he wants to say something and I just can't figure out what it is. It sounds funny to say this, but all day long he just says "Hi". I know it's the only word he knows and believe me, he has it down pat. But he gets mad trying to tell me something and just screams "HI, HI, HI, HI, HI". Tonight, we both just sat and cried together because I just don't know what he wants to say. It is just so damn hard to know how desperate he is to say something and nothing I guess is it.
And I don't want to make it sound like we can't communicate at all - we can for the most part. Tonight I lay my head down on his side rail and almost drifted off to sleep. Kevin must have been watching me because he made noises until I looked up at him and he then made the hand motion for me to go. I asked if he wanted me to go home and he shook his head yes. I told him I was waiting for him to go to sleep and he turned his tv off and shooed me again. I understood what he meant. And I love him all the more for knowing I was tired and sending me home to bed.
So we really can communicate - just not always. I guess patience will see us through, hopefully anyway.
Speaking of patience, we put him on the tilt table again and he was determined to fully stand up. Unfortunately, he was in a lot of pain when we got close to him standing up and we didn't want to strain the ankle that just healed from its break. Boy, was he mad though that we wouldn't take it the whole way. The physical therapist said "Patience, Kev" and I said "Yeah, that's the problem. This family has never been patient. We are the 'let's get it done now' sort". Kevin just smirked, basically telling the therapist that that remark is so true.
And today...Breezy and I took a break for a few hours. I am sorry to say that I must have been more frustrated than I realized and I was taking it out on her. And she is feeling bereft with the entire situation and having absolutely no one here to talk to or hang out with. So we had one of our quarterly fights and decided to blow off some steam. We actually went to the Hard Rock and played the slots for about 2 hours or so. I lost about $20 and she won about $100. She is taking her winnings (plus a little bit more) and going to the Steelers game in Jacksonville on Oct 5th. You should see her walk around the hospital on game days. She is all decked out in Steelers garb from her earrings down to her socks, lol.
And to end my post tonight, I would like to ask everyone to keep Joel in their thoughts for a while. He is very sick again. I believe his shunt isn't working correctly and they are thinking he has another blood infection. They had to re-intubate him today and they might be removing the shunt soon. This means they won't be coming to Tampa this week as planned. I am so saddened by this. Please just keep them in your thoughts. They need to get here because this place is just awesome and I just bet Joel will do just as well as Kevin!
First 2 from the Nov kit!
12 years ago
12 comments:
Leslie, I think that you have all the patients in the world honey to have gotten this far. Your the best. Tell Kevin I said hi and I hope the Breezy has a great time at the Steelers game she sure does deserve it.Fights are good it means you care. Love ya, Pam
I bet your daughter brightens a few lives when she goes to the hospital all Steelered up. :) They have fans all over and even if they aren't your team it's always fun to see people who are really into it.
Hang on-I know we don't know each other, but I read this blog daily and I can see the progress! I can't imagine how hard this is for all of you in the day to day-but the fact that Kevin is communicating with you-that's big time! Mothers and daughters always argue-it's what keeps us close. :)
Sophie
Leslie,
Could you make up a large board of alphabet letters and give Kevin a pointer stick for him to maybe slowly spell out what he wants to say. I know he is not suppose to be able to do this at this stage of a brain injury but he shouldn't be able to do much of what he already does. Just a thought.
I'm not sure if anybody has suggested this yet but if you could make a picture book with different pictures with words next to the picture so all Kevin would have to do is point to the appropriate picture (i.e. telephone, a glass to suggest that he may want something to drink, etc.). I know that this may sound stupid but I have seen it sone on rehab units with stroke patients and it seems to work with them since some can't communicate verbally. It's just a thought. You guys are in my thoughts and prayers daily.
The " Let get it done" way, is what has gotten you all this far.. so it has it's good points huh?
I have to smile thinking of some of the things Kevin does.. really sweet that he motions for you to go home.
As for Breezy.. so so right moms and daughters ( and sons.. in my case).. have to fight now and then. Breezy is still so young. I can imagine dealing with what you guys have had to , at the age I am now.. let alone at her age. You are both under unimaginable stress in an totally forein situation for the both of you. You guys are doing great!
Well girls, you had your blow out! Thats good, no one can go through this without a few good blow outs! That goes for Kev too.
From what you have been saying, Kevin does not respond well to "kiddie" items, so I don't think he will respond to plastic letters. He does like to joke so maybe a box with items that might relate to what he wants or needs would be the thing, items with humor. Like an empty beer bottle for (drink) might get a rise from him..or a Steelers towel for (happy) a piece of cardboard with a big arrow for (go/leave) I'm sure Breezy could come up with some good ones..I'm thinking real things might not get sailed across the room :-) I can see Breezy explaining to Kev the Steelers towel for happy..jumping around shaking the towel..he'd get it, I know he would.
Kev is still a grown up..I know they might have told you he'd be like a toddler, but I think he's proven that he isn't.
Awe, Leslie. It seems that frustration and love go hand in hand. I think Kevin's desire to communicate with you is so awesome considering that some thought this would never happen. Keep positive and continue to let Kevin love you back by 'knowing' your limitations too! There is much more in him than anyone but you and Breezy ever thought.
Hugs,
Liv
Ms Leslie,
Hello well what I have read so far is outstanding news, and it makes me happy to read and I do hope this is progress from the time I was there. I am to return to the states soon and will notify you and Briana and come visit on a frequent basis. I will continue to read the blog and my prayers Still Go out to you and your boy. god Bless
SSG Wil
let me know if breezy needs a place to stay for the game... i'm in jax :) she would be more than welcome anytime! so would all of you!
i'm not sure if you have had a chance to look up PECS or not,(you could you photos you take) but i understand and know your frustration when communication is non-exsistant, it's so painful. but i really feel like it will open up, he has come so far already!! my thoughts are with you!
My heart goes out to you all! To say you're in a frustrating situation is an understatement. But to read that Kevin understands when you're tired and wants you to go home...wow! To him it doesn't seem like much, I know, but to us it's incredible how far he's come. He's really getting there and I just have a feeling that he's going to be able to say a lot more words soon!
Are you and Breezy seeing anyone for counseling? You're both under so much stress, maybe it would help to talk it out with a professional. I hope she makes some friends soon, it's awful to be lonely in a strange place. She's so special to stay with you and Kevin, and leave her normal life behind.
I will definitely be praying for Joel and his family, too.
can i please have that pic of kevin that you recently posted up? when i sae it i about cried i showed my mom and she about cried but it was amazing how great he actually looked even thought looks are NOT the main priority here...
we pray for him everyday i feel for you guys soooo much when i saw breezy at riverfest it made me feel good just to stop in the middle of the parade and just wave to her and the camera. it was for all you guys and i wear my kevin shirt everywhere i go.
ive gotten compliments like "kevin, that looks like our ga wearing that shirt." mbut i tell them to go to hell they have no idea and once they fnd out they feel like the biggest asshole ever ( excuse the language, i just cant stand ignorant people during serious situations)
but i would love to visit, doubt could, it would break my heart to see kev now i would just break down cause he is one of my greatest friends ever.. hes such a great guy he diserves his life more than mos people do... hes a great kid and a wonderful son and he has a great family that will stick by him until the end.....
AND THAT END IS FAR FROM NOWWW!!!!!
he will be laughing together soon...
stay strong guys...
724 516 6015
if you need anything...
hes like family to me....
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