Day 581 - Dec 31, 2009

Happy New Year! I trust everyone had a great (and safe) night!

Today we spent quite a few hours at the VA hospital trying to figure out what is causing the pain. Kevin had to get an IV and have a contrast CT scan and it showed he has a small amount of fluid buildup, but we don't think it's causing the pain. I did ask and the fluid is on top of the plate, which is a good thing (I think).

We also had Infectious Disease take a look at the spot on his head and the doctor has no idea what it is. In the last few days it has formed a crust on top of it, so I am considering seeing a dermatologist. I need to talk to Mary about whether that's the route to take or see a burn doctor or what.

In the interim, I have made appts with a new neurosurgeon, but it's not until Feb 10 and I have also made an appt with a neuropsychologist on Jan 29 to help with the depression and also hopefully with cognitive rehab. I look forward to seeing what these two new docs can do for us.

And after all of this, Kevin and I went for a bike ride tonight. It was a beautiful day here today and I am determined to get him exercising to help him tone up and lose some weight. And let's face it - it won't hurt me either, lol.

And now I need to get my macaroni salad made. I want to cook out tomorrow night and mac salad tastes so much better the next day...

Day 580 - Dec 30, 2009

Kevin allowed Parshall to take him to therapy today - YAY! He had two therapies back to back so they were gone about 2 hours or so. Amazing!!! Parshall said it went really well and he was in a good mood when he got home so this may be a new pattern. Not every day, mind you, but it's a start.

And in even bigger news (can you imagine?!) - Kevin has been starting to say sentences. Today he started saying "shut the door" and "open the door". These are major things because it is VERY difficult for him to string words together. Now if we could just get him to understand the difference between open and shut it would make my job easier a couple of times a night. I don't know why, but he just can't comprehend the differences between the words open and shut and the words hot and cold.

So anyway, it wouldn't surprise me if he can talk somewhat well by this time next year. I sure hope so! This is the part that is most frustrating and devastating. Just not being able to be heard when you need to say something has to be so rough. And not being able to understand when someone is trying to tell you something is just as bad!

So that's about it for today. We did run to Lowes again because the handyman is going to install lights in the spare bedrooms as there are none and I also picked up some of the cat doors just so I can move the kitty litter to the garage. I have opted not to put one in Kevin's door because he has been leaving it open a crack and I prefer that than it being shut all the time.

Before I sign off - Long-Time RN - Kevin just decided to keep the cat named Princess. I don't think he has the cognitive ability to think up a new name. He really calls it Meow anyway, lol.

And I THINK he understands the reasoning behind the dieting, but he just doesn't care. He wants food and that's all there is to it, lol!

Day 579 - Dec 29, 2009

Kevin and I are kinda fighting tonight. His eating habits are totally out of control. He weighs almost 180 pounds and I am putting him on a diet. He's not liking it though - not at all - but if I start slow I am hoping it won't be too bad. So after eating two burgers, 2 bowls of ice cream, 4 pop tarts and some peanut butter toast, he isn't allowed to have any more. He is so mad he just stomped to his room and slammed the door. I really hate to do this, but he is putting too much weight on way too fast. It's going to affect everything from his good leg not being able to carry his weight to his sugar level.

Looks like life is gonna be rough for a little bit.

Truthfully, we didn't really do much today. We only have therapy Mon and Wed this week, so I had planned to go to a movie and leave Kevin with his aide. Unfortunately, when I got to the theater the line was a mile long and there was nowhere to park so I just took a drive to an area I had never been before and then came back home. I just plain forgot the kids are all home from school this week so I will wait until next week. There are so many movies that I want to see right now, but my main goal is Avatar in 3D and I am determined to see it.

And that's pretty much it, so I guess I'll go and read some of my book. Before I do though - Tracey in PGH - no, I wasn't aware that a photo of Breezy and Kevin was in the Post-Gazette on Sunday. If it's the picture I think it is, it is my absolute favorite. Mike and Rebecca (reporter, photographer, from the PPG - such wonderful people!) just sent me some of the photos they had taken for the paper and there was an 8x10 of that photo in the pile. I just sat and cried when I opened the envelope and saw it. It's really such a bittersweet photo, huh? It really shows how much the two of them love each other, yet it also plainly shows how severe Kevin's injuries are. Mostly I don't see what he looks like anymore, but sometimes a photo shows it and it always comes as a shock to me. It's kinda like when (once in a while) I catch a glimpse of Kevin out of the corner of my eye and I gasp! I think "Oh my God! Look what happened to my son!" It's all I can do in those moments to hide what I am seeing/feeling. I usually run upstairs and just cry when I see the truth so boldly. Thank goodness I don't see it often, eh? I'd be a blubbering mess. And let's be honest - no matter how lucky Kevin is to be alive, he still had a horrific thing happen to him that has left scars, both physically and mentally, that will never go away.

The poor kid...

Day 578 - Dec 28, 2009

Things returned to normal today. Kevin had speech and physical therapy and he did really well for both. He even did a full hour of physical therapy which I wasn't sure he would be able to do with this ankle. Truthfully, he has been walking the way he was and he hasn't complained at all of any pain in his ankle for a long time now, but I have still been kinda babying it.

And we have an appt on Thursday because Kevin has been having a lot of pain behind his left eye. I don't know if a piece of the filler that they used to fill in his head might have shifted or if it's just something simple or what. He has this dark spot on his head that started out at about the size of an eraser back when we were still in TX and is now up to the size of a quarter. It's very soft there and it's obvious that there is something wonky going on. I just hope it's something minor. I don't know if either one of us have the energy yet to deal with anything major.

But to get to some happier thoughts, Kevin was so excited to get Christmas cards from everyone this year. I know he enjoyed it last year too, but he is so much more aware this year that I was able to take some photos of him opening and reading the ones that the two classes sent him this year. I hope they somehow see how excited he was to read them - and he looked at every single one! He also got quite a few from others and they are all proudly displayed throughout the kitchen/living room. I can't stress enough how much he loved receiving these. Thanks everyone!





And now I am going to go scrap for a little while. Kevin's still raring to go so it will be a while before I get to bed...

Day 577 - Dec 27, 2009

We had a pretty good day today. I took Breezy back to the airport this morning and Kevin was waiting for me when I got home with my nephew and Tyler to go for a bike ride. My sister and mom had stayed with him while I ran Breeze downtown and they were all chomping at the bit to ride.

I did limit Kevin, but it was hard. He just loves to ride his bike and so far he isn't complaining of his ankle. We'll see for sure tomorrow if it hurts though. The last time he had no pain until the next day.

So anyway, here are some pics of the riding:

This one cracks me up. The boys and my sister took off and Kevin turned around and saw that Kim didn't have a helmet on. He made her stop, walk back to the house and get a helmet. She wasn't even allowed to ride the bike back. I laughed so hard.


This one is Kim and Kevin racing to the house:


And here is Kevin winning. Look at the joy on his face!



After this, Kevin and I watched an old movie - "Smokey and the Bandit" and we even both took a nap afterward. Then we just had leftovers for dinner and retreated to our separate spaces.

All in all a pretty nice day!

Day 576 - Dec 26, 2009

Phew! Aren't you glad it's all over with?

Obviously, the last few days have been really hectic. For everyone, I assume. We had all our Christmases and Kevin really scored big this year. An organization located in Western PA called me and offered to buy Kevin something that just wasn't in my budget for him for Christmas (they thought we lived in PA and were kinda stunned to learn we were in FL). I asked for a TV because he only had a small one in his bedroom and wow - how excited he was to get a large flat screen! And what a difference it makes in him being able to read the guide. He has been so excited and now I find we are all laying in his bed to watch movies because the living room furniture we have isn't the most comfortable and his bed is the softest I have ever felt. So really - the gift ended up being for both of us, lol.

Today was really a day of rest and relaxation. Kevin and I did nothing, Breezy did a little bit of running. I scrapped for a while tonight and left the kids to do whatever - it was so nice not to have to run up and the down the stairs a hundred times, lol.

I think I am going to try to get to some of the comments tonight as I am really behind.

Ann Lalli - I am so glad you all are in OH for the holidays. When will you be back down in FL? You MUST all come for dinner! We miss you guys!

Jessica - how is your grandpa doing? I hope he is feeling ok. I also am very sorry to hear about your cat. My thoughts are with you!

Jan - I know, we say soda. How strange is that, huh? I have moved so often that I pick up whatever accent from wherever I am at the moment. I still say pop quite often, but Kevin found it too difficult to say and soda came out rather easily so...

Miss Em - I have thought about PTSD quite often throughout the last few months. It's so hard to distinguish the difference between that and TBI as so many of the PTSD symptoms are also TBI symptoms. Did I read that the only difference is that TBI can cause nauseousness and PTSD doesn't? There's something - just one symptom - that sets one apart from the other. Wait - Mary (our wonderful FRC) - was it you that told me about this? I know we have discussed this...

Wife of a Wounded Soldier - I completely hear everything you are saying about how similar our circumstances are. If I am not mistaken - I believe you emailed me a while back and you are the reason I am seriously considering hyperbaric treatments. I am curious if you feel they still have worked? I keep going back and forth on this. (and to Leslie A. - thanks for the info on this treatment too)

I think I am going to end here and spend some time with Breezy. She has to go back to TX tomorrow so I want to help her get packed.

Day 575 - Dec 25, 2009

I hope everyone had a great Christmas! We did.

I am going to skip again tonight. Sorry for doing it two nights in a row, but it's almost 4am and I think Kevin is finally sleeping long enough that I want to try to get a bit of sleep myself.

I am going to leave you with two pictures of us swimming. I admit it was kinda chilly here today (60ish), but we were all determined to swim on Christmas day as it's something you definitely can't do in Pennsy.

So anyway, the first is Kevin:



This one is Kevin, Breezy, Michael (my nephew), Tyler (the boy across the street), myself and my mom:


And that's about it today. I will share more tomorrow!

Day 574 - Dec 24, 2009

Totally not going to write anything tonight. The kids and I are going to make some popcorn and watch a movie.

Kevin, Breezy and I want to wish you all a very, Merry Christmas!

Day 573 - Dec 23, 2009

Today was such a long day. We actually had our big family Christmas today because my niece has to work both Christmas Eve and Day.

So Kevin and I ran to the airport to pick Breezy up and when we got back we all had pizza and then we opened gifts. After that we decorated Christmas cookies, but by then Kevin was exhausted and he passed on the decorating.

It was really a nice day and it's so nice having my baby home - even if it is only for 4 days!

So I am just going to leave you with a bunch of photos:

This first one is Kevin just being his normal goofball self. He loves this wig and I always tell him if it were blonde he would just look like Garth from Wayne's World. True, huh?


This one is Kevin with Anne (my brother in law's mom):


This one is my dad, Breezy, Michael and Chrissy:


Kevin, my dad and my mom:


And here is Kevin with a "Kevin's Bar" shotglass.


Kevin with his "Boondock Saints" t-shirt.


Breezy - just being silly.


Chrissy, my mom and Breezy:


My nephew Michael was hiding under a mound of wrapping paper and I snuck under with my camera and snapped a shot:


The next 2 are of us decorating cookies. You can tell it's a pretty serious event in our family, lol. (actually - anything pertaining to food is a pretty serious event)


And to all the members of The Herd - check out my dad's sweatshirt! Kevin got a big grin when he saw that on my dad today:


And this is Breezy and I:


And last - Kevin reaping all the benefits of completed cookies!


Sorry for posting so many, but we have family back in PA that we want to share these with.

Day 572 - Dec 22, 2009

First, I gotta tell you that Kevin truly did that scrapbook layout all by himself. He is just like his mama and REALLY anal about exact placements. As I was attaching the photos with glue dots, I didn't do it right and it took forever to get them exactly where he wanted them. It was kinda hilarious.

So I also have to tell you that Kevin said a whole slew of new words in the last few days. I was on the phone the other night (Hi Linda!) and he called me downstairs to say 'star'. He was watching Family Guy and the woman was putting the star on the tree. He just said it - without any teaching involved.

Today he came out with Pap (my dad), I love you, Pap (very hard for him to get words together that are a new combination), eat, cookie, Josh (my niece Chrissy's boyfriend), Dawn (my other sister), Kammerdiener (ok - so that doesn't sound exact, but it's way close enough, lol), lights and hold on. He is trying to repeat things often now and he is even singing as best he can whenever the radio is on and he knows the song. You should hear him sing 'Happy Birthday' - he does it so well! If I could ever find the cord to my video camera, I will take some videos. It's been so long, but I haven't seen it since we moved from the Fisher House.

We did have speech therapy yesterday too, but Kevin was really mad. I guess the therapist spent almost the whole time writing notes. He also talked real slow and Kevin feels he is talking down to him. The one thing I don't do is slow it down. We talk normal and I only emphasize words when he is struggling to learn them. I talked to the therapist after I had Kevin leave the room, and I talked to Kevin on the way home because I know it's how you teach stroke patients, so hopefully they can meet in the middle. I just don't want Kevin to get so mad that he won't go back, kwim?

And lastly, I want to thank everyone for the well wishes for my dad. It's just not good. He has the option of either doing nothing and allowing the cancer to take over, or having surgery knowing that the odds are better that he won't make it through either the surgery itself or the recovery. They don't feel he is healthy enough to handle it.

So it's a decision my father must make and we all need to accept whichever he chooses. I do have to say though that it will be a less rosy world without my dad in it - even if he does drive me nuts sometimes.

Ah well, I don't want to get all maudlin, I'm sure it will all work out...

Day 571 - Dec 21, 2009

I am going to skip writing tonight. To be honest, my dad didn't get good news from the surgeon today and I just don't feel like writing. I will leave you with the pic I promised of Kevin's layout though:

Day 570 - Dec 20, 2009

We didn't leave the house again today and it was so nice. My family came down for dinner (they pretty much always come here because Kevin can 'get away' from everyone by going to his room).

Kevin and I scrapbooked for quite a while tonight. If it's sunny tomorrow, I will take a photo of his layout and post it here. Darn if he didn't pick 3 of my favorite pictures too, lol. I sure wasn't saying anything though because it's always so nice to have him out of his room.

And that's really about it. Somehow I hurt my ankle while at Disney and it has been very swollen since then. At times I can barely walk on it and right now is one of those times. It hurts like the dickens. I hope it feels better tomorrow because we finally go back to therapy. He only has speech though so it won't be too bad.

I can't wait to see what his therapist says about all of his new words. He learned 'soda' last night. If I got them all listed, he is up to 52 words. Hurray!!

And for all you cat lovers out there, I am going to leave you with a photo of Kevin with his cat:

Day 569 - Dec 19, 2009

I still am not feeling quite up to par, but I do feel better than yesterday. Kevin is feeling fine now - thank goodness.

We didn't do much today. We had to go to Lowes and purchase the materials to have a fence put up on one side of the house. They are building a house very close to ours and I just don't want our neighbors to 'be' in our yard. I also don't want them watching Kevin while he is swimming, so we are just going to fence that side in.

My sister met a guy that does handyman work and he gave us an excellent price to install it - less than half of what a fence company wanted to do the same job! He is also going to change those light bulbs that I can't reach and do a few other minor things. One thing is that Kevin has pulled the banister out of the wall going upstairs because he actually 'pulls' himself up the steps instead of walks up them. That is one thing that really needs taken care of.

Other than that, we didn't do much of anything today. I am hoping I feel completely better by tomorrow as the next week will be hectic. Breezy will be coming home on Wednesday and we have lots to do both before and after she gets here. Can't wait to see her though!

Day 568 - Dec 18, 2009

It's 3am and Kevin and I are in the midst of a UNO tournament, lol. Neither one of us has been feeling good today, but he is starting to feel better. I'm really not, but I either keep him entertained or I jump up and down 30 times an hour. I am opting to keep him entertained.

So hopefully the tourney ends soon and he will go to bed. In the interim, I am going to skip writing tonight so I can continue playing.

Day 567 - Dec 17, 2009

Kevin has been in a grumpy mood the bulk of today. He was so angry earlier (and I have no idea why?!) that he went into his room, locked the door and barricaded it with his wheelchair. I had to go around to his french doors to get into his room - luckily I left them unlocked earlier today. I do try to respect his privacy, but only to a point. I tell him he can't abuse my trust, but I don't think he understands what that means.

So anyway, I finally grabbed a few of my scrapbooks and we lay on his bed and just looked through them. A lot of the old photos of him and the rest of us while we were younger made him finally smile and even laugh a few times.

I just wish I knew why he was in such a mood today. Who knows...I guess we've all woken up on the wrong side of the bed and maybe that's just all it was. Tomorrow will tell, I suppose...

Day 566 - Dec 16, 2009

We are back home. We got here this afternoon. We didn't do much today. My family came down and I made a huge pan of lasagna and that's about it.

Before I forgot - Linda from the glass plant - can you email me your phone number? My email is lesliekamm@live.com

And Hallie - I agree that we are heading toward a more normal existence.

And I have to say that not for one minute do I ever forget what a miracle it is that we CAN even attempt to do things like go to Disney World. I will always have it in the back of my mind what he was like a year ago or even six months ago. Heck, three months ago I would have never thought to make any plans to go to a resort. Truthfully, he wouldn't have even thought of going himself a few months ago.

But he HAS come so far and we are getting there. I believe the day will come when we can go somewhere like this and have a good time. This was just the first try and I can pretty much guarantee it won't be the last.

And It really is amazing how far he has come. I know you guys don't have a 'clear' picture (mostly because you are only hearing a few parts of our day), but Kevin makes many decisions a day now and he rarely gets overstimulated anymore. It's mostly only extreme events - which is why I thought we might be able to do this Disney thing.

Talking about this just made me realize that I haven't seen the glazed look in Kevin's eyes in a long time. The one that says he is shutting down mentally. Yippee!

But, this is not to say that he doesn't still have confusing moments - he does. And he still struggles with directions and definitely with knowing objects. But when you compare him to a year ago - he is a whole new person. A true miracle!

And we are just going to keep cultivating that miracle. Who knows where it'll go, but I suspect so much more is in the works...

Day 565 - Dec 15, 2009

Well, it didn't work out. I was worried it wouldn't, but Kevin saw the commercial and wanted to come. I thought maybe...just maybe...but no go.

We got here and by the time we got all checked in he was overstimulated. So we rested for a while and then went over to the park. By the time we rode the very noisy bus and then stood in line to get the tickets, that was it. We came back to the room for a long time. At about 8pm, we attempted to go to the Christmas party, but you couldn't even move walking without hitting people so there was just no way with a wheelchair. He was angry because people were stepping on him and kicking him and hitting him so we just got back on the bus and went back to our resort and had dinner there. All total - we spent 15 minutes inside Disney World.

We were supposed to stay another night, but we are just going home tomorrow instead. No sense being here when we aren't going into the park.

So...no pictures.

I have to say that it is very disappointing. We are so close and I had such high hopes that he would do well and we would have a great time. The clerk (when I was returning my ticket because we never used it) told me that the deadest time to come is the last two weeks of November. I am going to keep that in the back of my mind and maybe next year we will try again.

Day 564 - Dec 14, 2009

I am going to skip writing tonight. I am just so tired and still am doing laundry and packing things for our trip tomorrow.

Hopefully Kevin will enjoy the Christmas party and I will have lots of pictures for tomorrow!

Wish us luck!

Day 563 - Dec 13, 2009

We finally made it to exchange Kevin's jeans for a larger size. We went to the outlet mall (where we actually bought them) instead of the normal mall as it's open and less hectic. It was a beautiful day here so it was nice being out and about.

I hope this weather stays nice because we have something exciting on target for this week. We are going to Disney World on Tuesday for Mickey's Christmas Party. Military personnel get a free 5 day pass and they also get a massive deal on rooms, so we are going for 2 nights. Kevin is actually really excited. We keep looking at the website and watching the videos and he just can't wait.

This will be our first time doing something like this and I admit I am scared a little. I don't know how well he will handle it - both the crowds and the stimulation around him - but I guess we'll find out. I also don't know how he will like not being able to ride anything. He has been handling things so much better lately so maybe none of it will matter.

Wish us luck. I just want him to have a good time...

Day 562 - Dec 12, 2009

We didn't really do anything today so I am just going to get to a few more questions...

Alison - yes, we will be in Florida for Christmas. I hope to be here for a while (a few months anyway)

Miss Em - you asked if the cat helps Kevin when he is in one of his moods and mostly the answer is "no". Usually Kevin just shuts and locks his door when he is upset and this means the cat can't be in there.

I will say that the cat does sleep with Kevin nearly every night now and she is usually found in his room. Thank goodness. Kevin really does get the cutest smile when she comes in though.

Hallie - I think it's sad that you worked at the same gov't job for 25 years and got your pin in the inter-office mail. Doesn't the government (and corporate America truly) realize that you get so much more out of people when you recognize their effort and time spent? Honestly - where did all the respect go? And Hallie...I congratulate you on your 25 years!

Sgt Social Worker - I checked into Project Victory for Kevin a while ago. I am leaning toward another place, but haven't fully made up my mind yet. Thanks for the website though!

And that's it for tonight. Going to go scrap for a while.