Thursday, April 2, 2009

Day 306 - Apr 2, 2009

Thanks everyone for the tips on how to dry out my phone. I do currently have it in a bag of rice and hopefully we will see some signs of life within a day or two. In the interim, I went to Wal-mart and purchased one of those $20 jobs to get me through. It's charging for the night because I need to call Moe. I haven't talked to her in days!

Other than that, Kevin wasn't in a wonderful mood much of today. He is more than a little bit frustrated lately and I think I can see why. I have noticed in the last week or so that he is thinking about things more clearly and yet he can't voice what he wants to say. It used to be that all we thought about was pills and heart rate and input vs output and so forth and so on. Now he is remembering things and he is starting to feel emotions about all things in the past and the present. From what I could gather before, he was always happy or if not, he was upset about how he looked or sometimes even by his deficits. Now it could be any number of things going through his head and it's just not possible for me to know what he is thinking. It used to be so easy, darnit! Oh well, I want him to get better and better, it's just hard when you don't always know what he wants.

And to touch on a couple more questions:

Lorraine, Rick and Howard the Duck - BAMC stands for Brooke Army Medical Center in San Antonio, TX. That is where we will be going for some of Kevin's repair work.

Cathy Morse - you asked how Kevin tells me things and mostly it's just our own way of communication. His PT once said there is some strange bond between us for me to always know what he wanted - sometimes even before he did. But to answer your question - sometimes he makes a hand gesture and once I figure out what he means by it, we use that gesture for that thought from there on out. For example, you asked how the 'tells' me he wants to go back to the hospital. Well, he points to the door of the apartment. That means he wants to go somewhere so I start naming places, ie the hospital, Wal-mart, Target, etc.

Some of the other ways are:

Subway - he hums the Subway: eat fresh theme song.

Shower time - he rubs his chest as if he is cleaning it with his sponge.

Wants his phone charged - he lays the phone on his chest and runs his finger from the phone to the floor as if following the cord.

Wants his iPod - his finger goes from ear to ear and then down below his chin to his belly. Again - following the cord.

He holds up 4 fingers when he wants to watch Die Hard 4. Y'all have no idea how many hours it took for him to make me understand that he wanted to purchase that video. Honestly, I could not for the life of me figure it out. I knew he wanted a movie so I loaded him in the car and off to the video store we went. He found Die Hard 1 and touched the number on the box and then held up 4 fingers. I just wanted to cry with relief. (and you had to know that they didn't have DH 4, so I went to 3 different stores to find the darn thing!)

For Spiderman (Thanks, Connie!!) - he makes this strange spider like motion with his hand and then he holds up 1, 2 or 3 fingers so I know which one to pop in.

When he wants his pills (he reminds me when it's time, lol), he makes a small circle with his thumb and index finger to replicate the appearance of a pill.

He also points to exactly where on his belly I am to give him his shot every day. I can't stray either - no matter what, lol.

As you can see, we have our own way of understanding each other, but it's getting harder and harder because he is thinking more in-depth now. It's not as simple anymore.

I am also trying to make him talk more. Diane and Mary Jo made me realize that I was not forcing him to talk because I did already know what he wanted. So now I need to just get him to at least try to say the word. I am thankful to them for seeing something that I just didn't.

And now I need to get cupcakes made for Joel. His birthday was this past week and he wanted white cupcakes with sprinkles, lol. He is just doing so well too!!


Alison said...

Kevin's 'signals' are actually really interesting to read about. I'm glad you guys have some way to communicate - but man, that has GOT to be frustrating for him to be unable to say what he wants to say. Like having the word you want at the tip of your tongue but you just can't say it...

Hopefully 'forcing' him to talk will help spur some more words out of him, but I'm sure he'll be talking more and more as he continues to heal up. :)

Anonymous said...

Thanks for the explanation of how Kevin and you communicate. That was fascinating and I appreciate you taking the time to explain it.

I wonder if you have some flash cards ready with medicine/pill (or whatever) on them and some other words not related. Then, suppose he does the pill symbol (circle with his thumb and finger) to tell you he wants his meds. and you then show him the medicine flash card along with the other unrelated cards you prepared. You tell him him he needs to pick the word. I was thinking that if he selects the right one then you can at some point work on him saying that one word.

Kevin obviously knows what he wants and "just" (easy for me to say) needs to tell you verbally.

I think there might be some pretty exciting improvements coming up as he gets stronger, gets a little out of his comfort zone (you and him with sign language), gets his confidence up, and says a word. If he can't right now, then perhaps you can work on standard signing - even just everyday words - anything so that he can express himself.


Cathy M

i. said...

Has anyone suggested the two of you learn American Sign Language to help with communication? He's already showing an aptitude for it. I know the goal is for him to recover his speech, but this may help with some of his frustration in the interim.

Kris said...

Hi guys!

Stopping by to let you know that you're in my thoughts and prayers each and every day.

I was going to say "man that has GOT to be frustrating..." when I look to my left and see that Alison already said it! :-) I just can't imagine how frustrating it is on both sides. But I do know one thing - there's no doubt that you'll both adapt as the progress continues - that's where my money is. So glad that you're going back to TX, another leg of the journey back to restoration for Kev! We'll all be out here praying for you and cheering you on every step of the way and you can count on that.

God bless you all.

Kris, a Soldiers' Angel from RI

Jessica said...

That's pretty cool how you and Kevin have worked out your communication signals. I wish I had some suggestions for you on how to help him talk so he didn't have to be so frustrated. It will come with time, of course. I'll be praying that Kevin's words will come more and more easily so he can express himself.

You're in my thoughts and prayers!

Anonymous said...

Leslie, I smiled when I read your account of how you and Kevin "communicate". It's the same way with my mother. I just know her so well that somehow I can just "sense" what she wants most of the time. Otherwise, it's the same kind of charades you guys do, except that she doesn't seem able to read as much as Kevin, and can't speak at all, or write. Kind of makes you wonder what we could do if we actually used the 90% of our brain that we haven't learned to use yet, doesn't it? Which actually should give you a little more hope for a lot of further recovery for Kevin. Did you ever find that book "My Stroke of Insight"? The neuroanatomist that wrote it had a BIG brain hemorrhage, and ended up like my mom, and a lot like Kevin...brain trauma wise. It took 8 years, but she's had about a 98% recovery. Read it, please!!! Never, never lose hope for a near full recovery for this superhero of yours. He's young and obviously very strong and smart. Barbara

Barbara Burke said...

I also want you to know that I honestly do know how much you really want to beat your head agaist the wall sometimes when you just can't seem to make that communication connection. It's okay. Sometimes it just happens. And really, I've found that an hour later, neither of you will remember it at all. Just try to move on to the next topic when you hit those communication walls. I call them "Talk Farts", which always makes Mom laugh, and lessens the tension. Barbara

Anonymous said...

Can you post the words Kevin can say? Maybe if his friends knew all the words they would call him. Maybe they just don't want Kevin to feel awkward or bad if they say something he can't answer.

Can his counselor help you with his feelings and thoughts.
Also what does he think is best for Kevin about being told about partial loss of his brain? From what you said he seems to have Kevin's best interest in mind.

Is Kevin gaining weight on his Grandpa's home cooking? ;)