Wednesday, August 20, 2008

Day 81 - Aug 20, 2008

Today was a pretty good day for the most part. Kevin was put into the chair and we went outside for quite a while today. It was getting ready to storm so it was much cooler out and the breeze was really blowing. Maritza and Jose sat out there with us and it was just a nice half hour or so.

We then went in and sat in front of the windows again and we decided to call my parents. Well...that was rough. Everybody happened to be at their place having a family dinner and it made it all the more horrible that we can't be there - and won't be for a very long time. But the worst part was when Kevin heard their voices (and especially my nephews Michael and Scott). He got a very upset look on his face and started swatting the phone away. Me and Breezy both just broke down and started crying. We had to walk away and hang up the phone and get back under control. I just wish I knew what Kevin was thinking. Did he not know what the phone was? Did he recognize their voices and miss them? Did he realize he can't talk and was upset? What? What the hell is he thinking? God, I hate this part! The not knowing is just going to kill me, I swear.

(Many, many tears where shed between these two paragraphs as it is just so incredibly hard not knowing. And I really miss my family and my friends.)

That was pretty much the only bad part of the day though. For the good parts, Kevin was much more alert today and for a longer period of time. He really seems to need the stimulation of sitting in the chair and going for a ride around the 4th floor. We also used the dry erase board quite a bit and I believe we got some answers out of him today. I put YES in the upper left corner and NO in the lower right. I asked him three questions and had him point to YES or No for the answer. He pointed to YES each time. Now it could have been a fluke, but we will see for sure tomorrow.

One of the questions I did ask was if he knew I was his mother. I sure hope he meant the yes. I also asked if he knew Breezy was his sister and then if he remembered hearing Gram and Pap on the phone. All three were yes answers. I tried another question, but he was done. No more using the board.

I want to thank everyone too, for their suggestions. There are so many things y'all mentioned that I hadn't thought of yet. Some I did - like trying to contact Tampa to find out things I should be doing as opposed to things I shouldn't. I don't want to start a bad habit just by not being aware of proper procedure, kwim? And I did go buy some toddler games (blue and red ball with shapes) and Kev was really mad when I showed them to him. I am thinking this means he was offended that I bought baby games, but again - I have no idea what it really means and I am just guessing. I did tell him that I would throw them away as soon as he showed me he could do them, but he was having no part of it. None!

As for the game of Memory, my friend Kristen and her son Travis (Hi Travis!!) sent me a game a while ago to play with Kevin. I will take it over tomorrow. Thanks so much, Ida, for jogging my memory (no pun intended, lol).

Holee, I will have to get back to you for sure on what parts of the brain were removed and damaged. I do know they told me the speech part and motor skills were removed, but not sure about much else. I will say that he appears to 'mouth' words, but no sound comes out. Now from what I read on the web, the part of the brain that handles speech is actually the part that gives the ability to form words. I am not sure about this, but if he is mouthing the words - then he is already forming them. I could be so wrong about all of this though.

Brenda, I will check into those puzzles. Good idea. I will also see if we are allowed to film his rehab. The hospital we are in now does not allow any photos to be taken (but I just asked last week if they would reconsider this). I see their point, sorta. I don't feel just anybody should be able to walk in and take a picture, but if a parent is there every single day - they should be able to take a picture of their son hugging their daughter. Absentee parents - No. But if someone has their child's best interest at heart, no matter what the cost - it's apparent that they would show dignity and respect with their photo opportunities.

I also like the idea of the magnetic letters and Wendy mentioned the ping pong paddles. Cool ideas.

Ok, I have written way too much, lol. I want to quickly ask everyone to keep Joel (Maritza and Jose's son) in their thoughts tomorrow. He is getting his shunt put in. His situation is so similar to Kevin's...

15 comments:

LISA said...

Leslie,

I am so sad that you are sad. We all share each day with you and feel the good, the bad and the ugly...but you live it...constantly. We cry with you.

I think we try and put ourselves in your place and think what we would do if we were in your situation.

Is Kevin able to shake his head to tell you yes or no...even if ever so slightly ?? That might be a thing to try and it might also help his neck muscles and his balance. I can't even imagine what contraptions he is hooked to so maybe that wouldn't work at all.

The reason I ask is since you already bought the red and blue ball with shapes, you could try a different tactic. I know he didn't care for it but...

You could tell him you bought it for someone...you really did..HIM...and you would like him to "help you". You could attempt to place a star in a circle hole and ask him if it fits there. Obviously it will not fit, but then you could place the star by the star opening and ask him if it fits there. If he shakes his head "yes" that the star shape fits in the star opening...he at least understands what you are showing him and his brain is working. If he could shake his head to show you YES or to show you NO...that would be progress. Maybe his eyes could also talk to you..open big could mean yes and closed could mean no. There are probably many ways to communicate that we wouldn't even think of.

I think if he could get excited about it and NOT think it is a baby game but tell him it is all part of helping him get well...that might even help. Communication is so good..

Maybe tell him that we just want to make sure his injuries are healing and this will help us to find out how quickly. Sometimes just sharing the truth..makes him realize that you are on his side and always there to help him and not be his enemy or are trying to hurt him. I know he would NEVER think that of you or Brianna, but as you have said..who knows what in the world he is thinking, especially when he gets angry. It seems like "frustrated" is what he is feeling.

Please know I only say these things as I try to place myself in Kevin's head when he doesn't seem to understand. To also try and help.
: )

If we could each take a day..to relieve you two and try and stimulate Kevin's brain..you know very well we would. I guess even negative reaction from Kevin is still a reaction, which is good.

No more rambling...just raking my own brain to try and get you all out of Texas quicker. Each day in your blog, I see progress.

Oh when you come home, I think we should ALL have a welcome home turkey dinner with all of the trimmings at the Fire Hall or somewhere that we all can fit. The turkey dinner that you so yearned for. It would be a feast fit for a Queen and her Prince and Princess.

I don't think there would be a place big enough to fit all of your huge support system.

God Bless you, Leslie. Praying for Joel, his parents and for Alan and always for Kevin, you and Brianna.

Have faith that God is right by your side helping you get through this. I'm sure at times you don't feel it..but HE is with you always.

Oh and I'm so glad you called Tampa. Hope you got some good answers to your questions.

The quilts made by Holee look so beautiful. What a wonderful person she must be.

Goodnight and happy thoughts for sweet dreams. : )

Holee said...

Oh gee, please, I'm not so wonderful. Something stronger then niceness led me to Kevin's story in the local paper. Having had 4 sons and the loss of one gives me a special place in my heart for boys & mom's.

Then there is the fact that I have a terminal disease that controls my ability to think clear sometimes. The anger and frustration of knowing inside who you were and not being able to be that makes you lash out at everything. I can only imagine how Kevin is feeling when he gets a flash of who he was. It makes you so mad and you can't even show that, so I think maybe that's why Kevin pushes things and people away. You just want to scream inside and punch out at anything just to know you can.

Kevin has given me a place to put what I have lost in my life, hope. What is wonderful is that we are led to places where we can help ourself by helping someone else. How we get there or why is the magic of life.

Anonymous said...

magnetic letters are great , check toy r us. they have letters that you stick in like a little puzzel and it sings the letter, and gives you words that it starts with and also sings the abcs. it's by leap frog. It also has some for colors and shapes and animals, i have small children and it made them learn so much quicker.

Anonymous said...

leslie,

there are also kid computers that speaks a word when you push certain keys; like HOUSE would be a picture of house. maybe kevin would think this a more "adult" approach to communication. i think of you often and wish i do more to help - but is will do what i can - keep praying.

Anonymous said...

If he doesn't want the babyish looking today, using black and white (dry erase or magna doodle) might be better for him.

Planning the speech sounds and thinking about what to say are made in different parts of the brain. The back (generally speaking) is what controls the muscle movements to lift your tongue, round your lips, etc. The left side is what controls what you hear and respond to: Someone says "How are you?". The left side of your brain tells you: That's a question, you have to say something about how you feel. If you respond "Purple", the left side says "girl, she didn't ask about colors. Try again". So you realize you have to say "Fine. Thanks for asking.". Then the front part says, "Okay, to say 'fine' what do we need to do? We have to slightly bring the botton lip so that it touches the top teeth, then blow out a little to make the 'f'." And so on. So the back controls the actual movement, the left the thinking, the front the planning. It all works together.

Jodi said...

Hi Leslie and Brianna!
I am sorry about the hard part of talking with your family. It has got to be tough not know what Kev is thinking, but keep using that board, because it seems he is communicating well with it!
Please stay positive and strong! You are doing an amazing job with him! You are two amazing ladies!
Healing and positive thoughts for Kevin.
Safe thoughts for Alan.
Big hugs for all of you!
Love you all!
Andrew's Aunt Jodi

Jenna said...

Leslie,

I know this sounds weird. I've never met you, but I read your posts daily and pray for you and your family. Anyway, the reason I am writing this is next week I am going to be in San Antonio visiting my husband who is graduating from Tech School with the Air Force Reserves. We live near Butler, PA. Is there anything from "home" you need? We would be more than happy to help out any way possible.

Vicki C said...

Oh.. certainly hope all goes well for them also! I know this is just so darn hard on you all, missiong family just adds to it all.
I am glad Kevin had a good day , other than that though. Thankful for those good things huh?
Love ya Les!

Jeannie said...

Leslie,

You are amazing! Keep going! Trust that little voice inside of you as you mother your son. Kevin will need to relearn alot of things. A long time ago(at the Community Center) you and I talked about our sons growing up and going through school. If I remember correctly your son, like mine, never cared for the whole learning process!! But they got through it, I like to think it's because of us! You have to be there again to push him through a whole lot of learning! Trust your intuition and do what you did before. But now you and your family have a great big cheerleading squad behind you! Much love, hugs, and prayers!

Jeannie

Traci said...

Leslie you amaze me with your strength!! I'm so happy that he is responding to you more and more. If you ever need someone to talk to, you know where to find me.
Things are going great at ScrapMuse and we would love to have you back if anything just to get your mind off of things even if just for a few minutes.
We love you!

Anonymous said...

Leslie,
I don't know if you're allowed to bring in Photos to Kevin, but, have you thought of bringing in pictures of his family and friends and writing their names on the dry erase board and maybe have him point out who is who by pointing to the name on the board? Also, maybe some pictures of Brady and KC, just to jog his memory some. It seems like he does know you and Breezy just from what I was reading and the sound of his grandparents (hopefully). But I wonder if he can remember home or high school or anyone else. I imagine he probably can but with no way of actually being able to verbally talk to you and his limited writing skills for the time maybe this would work. Of course... I don't know if these pictures would be hard on his emotional state of mind. Just a thought. I personally don't have any of those kind of photos with me or I'd send them too you. I have the all back at home with my dad.
Still Praying,
Karl Vaughn

Anonymous said...

Love you, Leslie!

Anonymous said...

Hi Les,

I am so happy Kevin is progressing. It sounds as though he is not only showing astounding leaps in the thought process, but emotions, too. That is wonderful!!

Our hope is that he continues to improve everyday. We always say a prayer for him and each of you every evening.

I am elated to know you may get to use Travis' memory game. He bought that with the best intentions for Kevin. I bought it thinking you may play it (with Breezy) as a diversion, as it does have a special twist to it, sometimes... "special cards".

Take care and keep up the good work!!! Your son is making leaps and bounds because of you and Breezy!!!

Kristen M.

drgnflywv@hotmail.com said...

YEAH for a good day and so sorry it was hard on ya'll talking to the family , just know that they are all there for you all.prayers for Joel and his family for a safe surgery!!!!
say hello to Brianna and prayers go out to Alan . Stay strong you are doing a great job and are still the most amazing MOM, thinking of all those things to help Kevin and being by his side!!!!! Take Care, kim

Jessica said...

I'm still praying for Kevin's continued improvement, mentally and physically. Also for him, emotionally, whatever he's feeling and going through, that God would give him strength, comfort, and peace. God will give you, Leslie, the strength you need to get through this, even in the hardest of times. Joel and his family are in my prayers, too! I'm glad you can support each other.