Day 731 - May 30, 2010

I received quite an honor today. The layout I posted the other day was named "Layout of the Week" over at Swirlydoos and Lisa, the person that posted about the honor had this to say:

Quote:

A little over 2 years ago, Leslie Kammerdiener decided to start a blog...For reasons unknown to her at the time, but this is what she said...

Sunday, February 24, 2008
"Hellloooo!!! Is there anybody out there?
Hello and welcome to my blog! I am not really sure what kind of direction this thing is going to take, but I am looking forward to figuring it out.

To summarize my life, I am a single woman with two grown children. My daughter, Brianna (Breezy), is 23 and she works in an underground mines in a government position. My son also works for the government but in a totally different way - he is in the Army. Kevin is 19 and is currently stationed in Bamburg, Germany.

I, myself, work for Armstrong Cable in a small department that handles the back-side of billing operations. I enjoy my job for the most part, but there are days....

I am an avid reader and I enjoy scrapbooking as well. Traveling is one of my favorite things to do and I love to cook and bake.

This about sums me up so I am going to head off for now. My son is supposed to call me on Skype in a few minutes and I want to get all set up. Gotta get that webcam operating, lol!"

********************************************************

Sounds like a pretty normal life to me!!! An all American normal family living an all American normal life!!!...But today, Leslie's life is anything but normal. And I know she would not mind me sharing her story...

You see, Leslie's life turned upside down in May of 2008 when she got shocking news about her son Kevin. Kevin was in a NATO convoy driving through the city of Jalalabad in Afghanistan on May 31. A suicide bomber filled a vehicle with explosives and drove it into her son's Humvee. Leslie did not know that there were 4 people in the Humvee. Both her son and his battle buddy survived the blast - the other two did not. Kevin was pulled from the wreckage and rushed to a hospital in Jalalabad. He has since been flown back to Germany and is now on this way to San Antonio, TX to a military burn unit. His injuries were extensive, they didn't know if he would make it.

That was the beginning of Leslie, Brianna, and Kevin's life...It has been forever changed. Leslie's story is one of war, courage, honor and love....Oh, the love...In honor of Kevin, and all those who serve our country to keep us safe...We salute you...We pray for you, and we too will defend your honor...

Happy Memorial Day...

End Quote

I just don't know what to say. Obviously it's an honor to be named LOTW, but you see...tomorrow is the second anniversary of this horrific event. Tomorrow, May 31, two years ago, both James and Andrew perished. Kevin and Daniel survived only to have to fight life long battles to recover and to sustain some quality of life.

And all of our lives changed. My family's, Andrew's family's, James' family's and Dan's family's. Not to mention all of our friends and their families and all of everyone who any of these boys' lives have ever touched.

Changed.

When I read that post and it quoted what I wrote way back in the day I had to say to myself 'Did I write that? Was my life ever that normal?'. As time goes by, it gets harder and harder to remember what normal is. It gets harder and harder to remember those days. I suppose it's best though as it makes the loss much easier to deal with.

But still...on a day like today, I'm glad that Lisa reminded me of my previous life. It gave me pause to think of what Kevin was like before - always joking, speeding all over the place on that skateboard and in high gear at all times. It made me think of Breezy and how quick she was to smile bright and how she was always out with someone, doing gosh knows what. And it made me remember myself being out with Moe and Jen and the girls. I gave thought to all the friends I had at work and how I felt good that my kids had grown up and were moving on.

Truthfully, I would say that the three of us were doing pretty damn well.

Now though? Now life is so drastically different for all of us. I suppose I could focus on the negs - no freedom, no friends, no income, no spontaneity, no feeling that everything is ok in your world, always having to be on alert, never knowing what state you're in, living in hospitals and hotel rooms and temporary apartments, having to fight for everything, blah blah blah.

But you know me ;-) I still can't help but feel lucky too. I can't imagine what the Shields and Finleys felt. I can't imagine opening the door to uniformed men/women and being told that my son had died. Yes, our lives do mostly stink, but to never hug my baby again, to never get to sing 'Happy Birthday', to never see his smile and to never hear the words "I love you" come from his lips?

No. We are the lucky ones. And my heart completely goes out to the Finley and the Shields families.

Rest In Peace Andrew and James...

Day 730 - May 29, 2010

We busted out of the house today. I had a bit of cabin fever so I asked Kevin if we could go back to the Japanese Tea Garden for some more photos. He was all for it so we called Breezy and Chris and we all jumped in our cars and hooked up there.

Kevin wouldn't stick around for too many photos - he was just too busy wandering around - but I managed to get quite a few of Breezy and Chris and just a couple of Kevin.

Here they are:














We had to give it up after a while because (as you can see) Kevin was sweating pretty heavily. We all were truthfully, as it was 98 degrees here today.

Other than that, we didn't do much of anything so I am going to sign off.

Day 729 - May 28, 2010

Thanks everyone for all the baby well wishes! Breezy and Chris came over for dinner tonight and we all just hung out for a while.

I scrapped quite a bit today. Joseph was here so I took that time to get out the photos and paper. It's been months since I really scrapped and it felt good to get back to it.

Kevin had a good day. Now that I have put him back on that one pill, we have cut his pain meds in half again. Phew! He also slept very well last night, which was great for both of us.

Truthfully, I'm kinda tired tonight so I am just going to leave you with a layout I did today. This is one of my absolute favorite photos and it was taken by Rebecca Droke from the Pittsburgh Post Gazette at Kev's Purple Heart Ceremony. I don't typically put layouts on this blog, but I wanted to share it with Rebecca and Mike (photographer and journalist) so here it is:

Day 728 - May 27, 2010

I have some rather exciting news to share with everyone. Y'all might want to sit down though...

It appears that...

I am going to be a grandmother!!!

(severe heart palpitations)

Yes. My darling daughter and her boyfriend, Chris, are expecting a tiny little baby on January 16, 2011.

I took a respite care day today and went to see the OB/GYN with Brianna as Chris is still active duty and couldn't be with her. I was impressed with the doctor and both her knowledge and her demeanor. And here is a pic of the ultrasound:


The baby is only about the size of a peanut, literally, but we were able to see the heartbeat, which was wicked cool.

So I admit to being shocked. And a little sad. I know that Breezy is old enough (she is nearly 26) and can handle it all, but I feel sad that I can't be there for her like I would like to be. Normally a first grandchild would be spoiled by the grandma, but my situation isn't going to allow that. It's not like I am going to have money to buy things for the little one and I sure don't have the lifestyle that is conducive to babysitting. Kevin is still way too needy to allow me time to keep the baby at all and he sure wouldn't be able to handle any crying. That part right there makes me so sad.

But, of course, I am happy for her too. Breezy is excited (now that the shock has worn off) and she and Chris are picking names and making plans. Chris will be discharging from active duty in about 3 weeks, but will be reserves for the next 3 years.

Kevin took the news really well. When we first told him he just looked really hard at Breezy for about 30 seconds and then he burst out laughing. He thought she was joking. I had to step in and explain that it wasn't a joke and he again looked deep into her eyes for almost another minute and then said 'ok', he smiled and then he just shrugged. Hopefully the plate is back in his head with no problems before the baby is born and maybe he will get back to loving babies and children. He's going to make a good uncle if we can get back to that place.

So now Miss Brianna just needs to start feeling her own symptoms. Even before I knew she was pregnant I was peeing all the stinkin' time, I have been way more emotional lately and certain female parts of mine are just killing me! I swear - if I feel her labor pains I am going to just kick her butt all over the country!

Day 727 - May 26, 2010

We had a pretty decent day. I went out and about while Joseph was here, mostly just driving around.

The medication situation was taken care of so all is well on that front.

And Breezy came over for dinner tonight so we cooked cheeseburgers and hot dogs and just had a simple meal.

I called about getting that new mattress because it hasn't happened yet and tonight I noticed that Kevin is actually getting some skin breakdown on his back. In all this time, we have never had that. I sure hope they hurry with this exchange. I am just not liking this.

I also talked to the doctor today and we decided to take the one pain medication we were reducing back up to what Kevin was taking a couple of weeks ago. He's back to not sleeping at all and I have been having to give him more and more pain pills. For a while there he was sleeping pretty decently and looking over the pain pill log I can see that I have had to increase his dosage about 2-4 times more a day lately. I can't say for sure if this is the problem, but I guess we'll see soon.

And that's about it for today, so I guess I'll head to bed.

Day 726 - May 25, 2010

Yay! We made it to see Shrek today! Kev did pretty well throughout the whole movie, but by the time it was over he was in quite a bit of pain. Unfortunately it didn't end all night long - no matter how much medication he took. Sometimes I wonder if it's worth getting him out of the house, but I hate the thought of him being completely home-bound.

And I got a refill of Kevin's meds in the mail today and the wrong ones were sent. It looks like I get to head over to the VA clinic tomorrow and try to get the correct ones. I hope it's not a problem. We are just about out so I MUST go tomorrow - there isn't enough to make it through the next day. Luckily Joseph will be here so I won't have to drag Kevin out.

And that's pretty much it for today. Not a whole lot going on in life right now...

Day 725 - May 24, 2010

I went to a caregivers survey tonight and Kevin stayed with Joseph and another guy that is in training. I guess the guys had a blast. Kevin was in a great mood when I got home and he boldy told the other guy to 'get out' because he wasn't a Steelers fan. It was pretty funny.

Sadly, that's about it for today. We did nothing throughout the day. It's my goal to go to the movies though tomorrow to see Shrek 4. We are both really looking forward to it - I can only hope we actually make it to the theater.

Day 724 - May 23, 2010

I really don't have anything much to say tonight. We went to Sam's Club today, just for somewhere to go, and that's about it. I made a huge pan of lasagna for dinner after that and Breezy and Chris came over again. We didn't play any games today because Kevin bought the movie "Out Cold" and he was really into watching it tonight.

And that's really about it. Hopefully I have more to say tomorrow night, lol.

Day 723 - May 22, 2010

We had a pretty good day today. We didn't do much, but Breezy and Chris came over for dinner and we all played a long game of UNO. It was just one of those kinda relaxing days.

Due to an uneventful day, I am just going to answer some more questions.

Sue - my parents are doing well. My sister told me that Dad is having more pain in his hip area, but I guess that's to be expected. He goes back to see the Oncologist in early June so hopefully they get the chemo rolling soon. It's been six months since his last treatment ended and they need to get it going (in my eyes anyway).

Karen, you had mentioned a while back about how the body will cause pain just to get the painkillers. So true. One thing about Kevin though is that he despises taking the oxy. He always turns it away asking for Tylenol, but he can only have so much of the tylenol in a day and at times I have no choice but to give him the oxys. We did take him down to Vicodin (sp) last week, but they didn't touch the pain. I know that he needs to be detoxed, but I am waiting until after all the surgeries are done as there's no sense taking the drugs away only to give them back with each surgery.

Miss Em - you mentioned about Kevin sleeping low in the bed being the same as him being in the 'fox hole'. That is something I would never have thought of. And I'm standing here cracking the whip to get you into your craft room! LOL.

Janna - I am so sorry that you had to go through that with Zach and with his twin. I am curious if he will need future surgeries as he grows older? Or does the skin grow with him? Also, please don't feel you have to answer - I know these are personal questions and I don't want to overstep a boundary.

Paul Pomeroy - LOVE the Light Through the Veins! I googled it and caught it on YouTube. You can honestly just feel it running through your body! Thanks for that!

Here's a link if anyone wants to hear it!

Justin G - I showed Kevin the picture and he knew exactly who you were. It took him a bit - I could literally see him thinking - but it did click eventually. He was pretty excited to 'see' you! I hope we get to see you soon!

Ok, it's off to bed for me...

Day 722 - May 21, 2010

I am going to skip again tonight. I haven't scrapped in months and I want to get my scraproom organized. I brought a whole bunch of my stuff back with me a couple weeks ago since we will be here so long this time.

Day 721 - May 20, 2010

Today we just stayed home. I cooked a big dinner and Breezy came over and ate with us. Kevin even managed to stay at the table the whole time too!

Our afternoon/evening was spent with a VA Fiduciary field rep that came to our house to go over Kevin's budget. She was a very nice woman and we had a long discussion about competency. I feel good about the bulk of it, but when she asked if he watched any news to stay informed on current events I had to say "no". Truthfully, he never watched the news before either. Gotta think about this one.

I drew the line at the photo though. She was told to take a picture of Kevin and I don't know why the financial people would need a photo of him so I did not allow it. I didn't allow it in FL either. He's not some kind of freak show and I can see absolutely no reason why they would need one. Doctors? Sure. Pencil pushers? No way.

Maybe I'm way off base here, but I just can't see it...

And Kevin came over and crawled in my bed at 5am this morning. He has not been comfortable in his bed since he got the new mattress. I called the VA yesterday to see if we could get the old one back and I can only hope they do it quickly. He really has barely slept in the last week. This new mattress is very hard and he always has indentations on his back from it. Keep your fingers crossed that it's quick, please.

And Kevin just called me in his room to listen to his Zune. He has been listening to a little bit of classical music lately and he wanted me to sit and listen with him. Sometimes he will listen to it in the car too - so much better than that horrid screamo stuff, lol.

And now I want to try to finish a movie I started watching early this afternoon. Breezy and I did watch Grey's though tonight - did anyone see it? Geesh. My hurt heart.

Day 720 - May 19, 2010

I am going to skip writing tonight. I didn't sleep one wink last night - I just tossed and turned all night, finally giving up at about 8am or so. Tonight, I am just so exhausted.

I do want to quickly post a lovely poem that Patricia wrote to help us remember our home state of Pennsylvania (Thanks, Patricia!):

Leslie ~

For you and Kevin and Breezy...to remember the days of Pennsylvania...I wrote this, sitting at my window...thought something nice to read would bring a smile...

Sunday writes itself upon our memory.

The sky changes blue as it is a background for foliage. Dark green sets it blazing brilliant blue...near the horizon a wisp of blue gray....around clouds the soft blue of faded jeans....

Everyone is cutting grass and planting flowers and since it has rained so much, the air is filled with pungent soil, grass clippings, compost, blossoms....the woman across from me began early this morning with her plantings and now her yard is a coloring book unfolded...

Sounds of conversation follow the breeze indoors, drifts around each room, and settles like dust on counters and bedspreads...

When we were children it was a day for baseball, street kick ball, walks to the parks, sitting on stoops and backyard porches with friends, our feet up on banisters...Popsicle melted down limbs and we never minded the sticky sweetness...just laughed...remember the days when we laughed because we loved the feel of it?

Windows are open for the house to air....sweeping remnants of winter and cold away...

I just cleaned the kitchen. Clorox, Murphy's Oil Soap, dish liquid...now it smells like my home on Adams street. How our mother's habits stay with us. Maybe that is why they taught us as they did. So when we clean, and the smell of years ago is recreated, we have a moment with them.

The day's sun is drifting in time beyond the tree line and shadows spread like so many palms and fingers...

Gentle.

A simple word that releases its sigh against the coming of the week...

Enjoy.

With love.

Day 719 - May 18, 2010

I ducked out for a little bit today while Joseph was here. I didn't have anything to do, so I went to the mall and just sat in the food court and talked to Moe on the phone. It's really a sad thing when there is nothing to do and no one to do it with.

But I got out, right? That's a good thing.

Other than that, we didn't do much of anything today. A couple games of cards and that's about it.

So I guess I'll answer some questions:

Janna - thanks for letting me know about the expanders. It helped that Grey's Anatomy had it on last week too, lol. Seriously though - I'm glad you mentioned how unattractive they are - I told Kevin it will just look like it did back in the beginning. He didn't seem to care, but that may change when his head actually starts growing.

And I'm so sorry - you probably told me at one time, but why did your son, Zach, have them?

(I should interject that I have retained very little from the beginning of this endeavor. If any of you told me things of your loved ones - more than likely I won't remember. Sorry.)

GrannieEv - you asked me whom the money belongs to - the VA field rep told me that the VA benefits are given to me to take care of Kevin. (although it's not my money and not one penny can be spent for my needs.) I suppose technically it is Kevin's money - he is just not allowed to touch it personally. He does get an allowance from the benefits, but even his allowance is audited as to how it's spent.

At this point, because Kevin has been declared incompetent, we have to ask for permission to buy anything major. Even to rent this apartment I had to have written permission. And they are strict about it too. Back in January I was having the fence put in and I went $4 over the limit without calling for permission first. I was at Lowe's, didn't know it would be that much, it was Jan 1 - a holiday, the installer was coming in the morning, so I just wrote the check. When I called a few days later to let them know I got screamed at and told if I did it again I would be stripped of my fiduciary duties.

Now I do understand that they need to protect the veterans from unscrupulous parents/spouses/siblings etc, but it just makes it so difficult for those of us that don't steal their kids' money.

What makes it even harder is that Kevin is far different than when we got him declared incompetent. Now he knows when he wants something and it's hard to tell him 'sorry - need permission first'. And let me tell you - he was really mad a while ago when we were picking up dinner and I only ordered for him. He asked why I didn't get anything and I told him I couldn't afford it and he pointed to himself as if to say he would buy it and I said 'no buddy, you can't buy my food'. He was furious. I have almost always paid for our meals before, but now that he's discharged from the Army he needs to start carrying himself financially. It's just hard for me - I am the type of parent that always takes care of the bill when we go out for dinner - it's just what moms do.

And I should say that I never used to tell him this stuff, I always kept the crap from him, but he is able to understand now and he should know what's going on. So he is more informed now about all matters. I am determined to get him as close to normal as I possibly can and this is a big step in that direction.

Cathy M - you asked about the pros and cons of declaring Kevin competent - we had the hearing back when Kevin was just emerging from his coma. It was necessary at that point for me to be able to make medical decisions concerning his treatments. He also would have never been able to protect himself financially or deal with any of the decisions that needed to be made on many subjects while he was hospitalized. This enabled me to fight all the battles that were necessary and make all of the decisions to protect him from anyone that he needed protection from. I was able to then take care of his bills and do his taxes, purchase the van for him and go round and round with the Army over his pay being incorrect every single month.

Now though? Now he makes most decisions himself. I discuss everything with him and treat him just like I would Breezy if I felt she wasn't making the right decision. There's guidance and there's control. I am striving for guidance.

I do think that Kevin could probably be declared competent right now, but I want to wait until the plate is put back in. He will have to go through 4 hours of psych testing for the courts and he won't be able to handle it right now. He would be in too much pain and I don't want him to go through that. A little longer won't hurt anyway.

Ok, I have rambled enough tonight so I am going to answer the rest of the questions tomorrow night.

Day 718 - May 17, 2010

Kevin did fantastic today. We had to wait so long to see the plastic surgeon and he really did well with the wait. Remember when he wouldn't?

So we did finally see him and it turns out that the neurosurgeon needed to be in on the conversation. They are going to let me know as soon as they figure out when the surgery will be - June or July.

They also aren't sure exactly where they are going to place the expander. They typically put it where the skin is needed, but with nothing to protect the brain they just can't do that. So they are discussing on top of his head. I am good with that. It will still allow him to sleep and he can still cover it with a hat when we go out in public.

They also plan to fix his left eye because it had too much skin put in place during the last release. They are discussing the right eye too as it's starting to pull down a little bit. He also has a lump on his right ear that is going to be removed and they are going to 'cut off' some of the deep scar tissue along his neck on both sides. Oh, and botox too in his right arm (although occupational therapy needs to be in place first).

I am not sure if they plan to do all of that at once or if some of it will wait until the following surgery. I guess we'll find out soon enough.

So all in all we were out and about for roughly 6 hours or so. We came home and Kevin rested for a few hours and then we needed to go get milk so we headed down the road again. Unfortunately, there was a wicked storm passing through and I have to say I have never seen continuous lightning before - spooky - so we just came back home without getting the milk.

And now I am really heading to bed so I will get to the guardianship questions tomorrow.

Day 717 - May 16, 2010

Well...Kevin didn't play along last night. As soon as I finished posting, he decided to get up and wanted to finish the puzzle. So that's what we did.

I am so happy to say that I finished the audit though! It would have been nice if I had had all the transactions from the last two years entered into Quicken - but I didn't have any of that done. That's what has taken so very long - just getting it all in there so that I could run reports.

But alas...it's done! I am so going to try to keep up with entering the data, but it's just not easy to do with this lifestyle.

Personally I am hoping to have him declared competent by the end of the year. He completely understands money and he knows what he wants to buy and what he doesn't. He also knows how much money he gets, how much he has in the bank and what his bills run. He will put things back if he thinks they are too expensive and he will call you on it if you don't give him back the right amount of change. I am proud to say that he always counts what a clerk gives him before he puts it in his wallet too. How many of us do that? LOL!

All along I have made it a point to keep him aware of his money. I have never spent anything without discussing it with him first. In my eyes - this is his money (even though the VA says it's not), so he should make the decisions.

And moving on - today we did nothing. I really am feeling crappy lately (I am assuming it's allergies - headache, coughing, congestion, etc) so I took a shower and put PJ's back on. Kevin was upset because apparently he wanted to go somewhere, but it wasn't happening. I am whooped.

And I wanted to save my energy because tomorrow he has doctor appts. One is the burn plastic surgeon and other is pain management. We should find out when his surgery is in June. I just hope those skin expanders don't hurt too much. Or look too bad. I am also worried about the placement. They are talking about putting them in the back of his head and I don't see how he is going to sleep if that's the case. I guess we'll find out more tomorrow...

Day 716 - May 15, 2010

I am going to skip tonight and go to bed early. I've been struggling with a headache the last week or so and I'm hoping if I get a good night's sleep it might just go away. Hopefully Kevin plays along...

Day 715 - May 14, 2010

We woke up today to a whole bunch of flooding. The whole back area of the apartment complex was under water so we opted to not go anywhere at all today. I knew a lot of the roads were probably closed too and I sure didn't want to get somewhere and maybe not be able to get back home.

It was a pretty good day though. I got my floors scrubbed and Kevin and I worked literally for hours on a puzzle I purchased the other day.

His new mattress was also delivered tonight (and roads were closed - that poor delivery guy) and although it was supposed to be longer, it's the same length. I guess I have to call the VA on Monday and get the proper bed ordered. Poor Kevin is so tall that his feet are against the foot board. It doesn't help that he sleeps low in the bed, but it's where his body is most comfortable. And I can't say much - in the beginning he used to have his feet hanging a foot over the end of the bed. You wouldn't believe how many hundreds of times I would help the nurses pull his body back up the bed to the top of the mattress. He would always scoot back down though.

And now I am heading to bed. It's been raining again for the last couple of hours so we may not be going anywhere again tomorrow. I hope we can - I really need a few groceries. I have been trying to push the fresh veggies and I am all out of them. Kevin is drinking a lot of milk again too - just like the old days - nearly a gallon a day. No wonder he weighs 192.5 now... (which, btw, we did figure out that his last weight gain was due to a new medication. He gained that last 20 pounds really fast and has gained nothing since.)

Day 714 - May 13, 2010

Today was a really good day. We had an appt at a small VA clinic to join up with a primary care doctor. I was very impressed with the way they asked me first if they should speak to me or to Kevin. I asked them to speak to him to try to see how he answered the questions. He did fantastic! He seems to understand the pain scale now and even told the doc that he had 'sharp' pains in his head as opposed to dull, throbbing, etc. He has never been able to describe his pain before so this is wonderfully new. She probably asked about 30 or more questions and the only one he didn't understand was 'does your chest hurt?'

I was also very impressed with him actually being honest and 'saying' he doesn't understand. It's the norm where he just goes along with what is said rather than show that he doesn't comprehend something.

So anyway, he really did well. He played his Zune for a while when I did have to go over all of his meds and he handled the whole 2 hours or so that we were there very well.

Even better, when we left he still felt well enough to want to eat a late lunch out. (he did need meds though). So we headed to a Red Robin - we had never eaten there before - and he did great for a while, but about the time the food got there he was really starting to hurt. I wasn't surprised as it had been nearly 4 hours that he had been out of bed so we just packed it all up and went home to eat.

All in all he did fantastic! I took a photo of him at Red Robin with his new phone too. I am going to end this post with it:

Day 713 - May 12, 2010

Today I finally broke down and allowed Kevin to purchase a new cell phone. He has wanted one for months and I just kept stalling because...really...how much does he use it, right? (other than to call me - that's constant)

When I got his phone over a year ago, I did only get the freebie one because I wasn't sure if he would even know how to use it. I was wrong on that one and I thought to myself today - why not? Sometimes when he has to figure something out, it's like more neurons finding new pathways, so he got himself one of those backflip phones and he has been running around taking pictures and videos all night. He is just so excited. Typical guy with a new toy, eh? LOL.

And today we actually left the house twice! A first since he has been out of the hospital.

I had to go to the orthodontist early this afternoon and I took Kevin with me. He did super well and everyone was so excited to meet him. I had first seen this ortho back when Kevin was in a coma. They have followed his progress so I was really glad they did get to meet him.

And then tonight he kept asking to go to the phone store so I caved. So far he has figured it all out on his own so I'm glad I took him. And to me - every little thing that makes him act like a normal 21 year old is a good thing!

Day 712 - May 11, 2010

I realized tonight that it had been 4 days since Kevin had gotten out of the house so I loaded him up and we went to Sonic for ice cream after dinner (maybe 3 miles away). I medicated him pretty heavily before we left so we did make it with no problems and we were able to sit there and eat for about 15 minutes before Kevin's head started hurting, meaning we needed to get back home.

After we were home for a while I needed to shave him so I lathered him all up and took my first swipe with the razor and didn't he grab his neck and start screaming! I was so panicked thinking I cut him and I was screaming 'let me see! let me see!' and I was trying to move his hand away from his neck and he flippin' burst out laughing. The little shit. I was scared to death, I tell you! I think he's been watching too much Family Guy. He has such a twisted sense of humor.

And I have been hitting the audit pretty hard because I need to have it filed within the next 11 days. I am running out of time, but it's just not easy because Kevin always requires my attention. I am close to being done though, so maybe tomorrow...

Day 711 - May 10, 2010

Kevin did have a better day today. Cathy M - you asked if I thought Kevin forgot seeing the photos to get through it or if he just pushes bad stuff from his mind. I truly have no idea, no way of knowing. It's my guess that he does a little of both, but there is probably more of the forgetting.

I know that last night he made me take his Zune out of his room so I lay it on the couch next to me (hence pushing the thoughts from his mind). Today he came out and actually sat in the living room for a bit and questioned why his Zune was there. All I had to do was look at him though and he remembered what happened. So I guess he is forgetting for an instant, but he pretty much remembers pretty quickly - with a look or some other trigger to make him think for a bit. (and let's be honest - don't we all forget stuff throughout the day?)

This is when it becomes another aspect of my job though and that's to keep him occupied so he doesn't focus on those crappy thoughts. Today we played Skipbo twice with Joseph and then 2 more times this evening. I also went and took a nap (!!!) this afternoon while Joseph was here and I could hear the two of them laughing just as I was drifting off. What a truly wonderful sound!

And then - Kevin called my nephew, Anthony, today. Kevin pretty much never initiates phone calls. I have no idea what prompted it today, but it sure made me smile. I just walked away and left them talk. Truthfully, I didn't even know who he called, but he told me later when I asked. (he puts his arm around an imaginary person next to him - like he would a good friend - and I know it's either Ronnie or Anthony)

Really, it was a good day for the most part. He still couldn't handle eating dinner at the table, but after playing cards, I never thought he'd be able to. It's alright though - I have gotten quite used to eating alone and I would rather do that than have him be in pain.

Day 710 - May 9, 2010

I hope everyone had a great Mother's Day! Ours was nice. Kevin didn't make it to the table for dinner, but Breezy, Chris, Josh and I ate and it turned out well.

And my kids got me a certificate for a hot stone massage at a spa down the road a bit. I am really looking forward to that!!

But tonight...tonight Kevin is very sad. He found some photos on his Zune from before he left for Basic Training. Photos where he was whole. Handsome. Normal.

He has mostly been crying for the last half hour or so. It's hard because there really are no words to ease his pain. Let's be honest - he has absolutely no quality of life. He is in constant pain. He is disfigured permanently. He has no friends. And he can no longer think like he used to be able to.

I'd say that pretty much sucks - no matter how much we all know that it's a miracle that he is alive.

So I have to let him cry it out of his system. I just keep going in and checking on him every 3 or 4 minutes or so and I can only hope that tomorrow he wakes up and doesn't focus on the losses. We all know what a slippery slope the road to depression is so I will have to keep my eye out once again.

If everyone can just keep their fingers crossed...

Day 709 - May 8, 2010

We had a better than average day today. Kevin felt good most of the day, enabling me to spend quite some time in the kitchen. I just cooked all day and loved it. Even better, Mary came over for dinner so we even had company and Kev did fantastic with that - only going to his room during dinner (which is normal). To be honest, that pretty much sums up our day.

Anita - you asked when the plate would be reinserted and if it's a sure bet for eliminating the pain and the answers follow. I believe the skin expanders will be inserted in the beginning of June and they need to be in at least 2 months. Assuming there are no infections/complications - the plate should be put back in in roughly Aug/Sept. I should say that there are no guarantees of it taking the pain away, but it definitely removed all of the issues with him being in pain just by getting up the last time. We were at the point where we could go out and about for hours at a time - even going to the Atreyu concert last fall - without any real issues. That's not to say that Kevin lived pain free - he definitely always has had pain, but I am hoping that the day comes where he is pain free. It's probably my fondest wish for him.

Even Kevin is anxiously awaiting the plate being reinserted. He asks every other day or so 'how long?'. He knows that it really is a quality of life changing event and can't wait himself.

On a side note - we are working on taking him off the methadone. We are down to 2 pills a day now instead of the 4 1/2 he was on when we came home from the hospital. It sounds crazy to take him off of pain killers when he is in so much pain, but I'm not sure they are making any kind of difference. It really does appear to be an up/down issue and when we have taken him off the other 2 1/2 pills (slowly done) it has made no difference to the amount of other pain meds he takes. It is such a goal of mine to get him off all this crap.

We also took him off of one of his nausea medications when we got home and oddly enough - he hasn't been nauseous hardly at all and even stranger - he doesn't need the house to be frigid any longer. Yahoo! I was freezing all the time because he wanted it to be 65 degrees. Now it's a nice 72-75, depending on the day.

And now I want to wish all of the mothers out there - Happy Mother's Day!!! Tomorrow I am stuffing a turkey and having a big meal with Kevin, Breezy, Breezy's boyfriend and he also brought another soldier with him for the weekend so it's going to be a nice 'family' dinner. I so hope Kevin can handle it - at least for tomorrow...

Day 708 - May 7, 2010

We had a decent day today. We had to run down to BAMC to pick up some meds and that was a bit rough, but we did manage.

Tracey from Pgh - you asked what is causing the pain now that the plate is out and there really is no way to be sure, but I believe it is fluid movement. Before Kevin's hair grew in, when he would sit up in bed you could see fluid moving around in the sunken area of his head - where the plate should be. Someone told me once that they read of another person in this situation and this person claimed that the pressure in his head was the most intense pain he ever felt when he would move around.

I remember that we were very limited before the plate was put in the first time too. He was always in pain and the least little bump in the road or any fast movement would cause extreme pain. It's not to say that he wasn't in pain after the plate was put in, but it was nowhere near as debilitating as it is now.

Now, we can barely get out of the house. Some days, Kevin can't even get out of bed. Matter of fact, he now only takes a shower every other day because it hurts him so much to get up. Like I said the other day too, he usually can't even sit through dinner.

We did play 3 games of Skipbo tonight though. Short ones, but we still made it the whole way through.

And I don't think I mentioned that the President signed the bill! Thank you to whomever posted it in the comments area and thanks also to Anna who sent me a link to the video. I am posting it below in case anyone wants to watch it:

Video of President Signing Bill

I had the pleasure of meeting Ted and Sara Wade when I went to DC back in the fall. They are wonderful people and I'm so glad they were able to be there. I sure appreciate everyone that worked on this!

And now I am off to bed!

Day 707 - May 6, 2010

Kevin has had a couple of rough days. Yesterday we went out for a bit and Kevin was hurting so badly that I had to pull over numerous times and just sit there while he controlled the pain - or at least tried to. It's hard because we never know when it's going to hit. Sometimes we can be out and about for an hour or two and sometimes we can't even make it five minutes down the road.

Today I managed to get Kevin out of his room to eat dinner with Breezy and I. That was about it though. We tried to play Skipbo, but Kevin only made it about 7 minutes or so and then he had to get back to bed.

I just can't wait to get that plate put back in so we can resume our lives. It's just so hard watching him be sick and in pain all the time.

And that's really about it. It's hard sometimes to come up with things to say because we don't go anywhere or do anything. This is why the posts have been on the short side - which unfortunately, is exactly how it's going to be again tonight.

Day 706 - May 5, 2010

I think I am just going to skip tonight. I really just don't have the energy to post anything as Kevin has been running me ragged all night. Catch ya tomorrow...

Day 705 - May 4, 2010

We had a much better day today. Kevin got up and around and we went to this new grocery store that we just found. It was huge and had all kinds of things that I have never seen before. We were probably there about an hour and a half and Kevin did pretty well. He (of course) stayed in the electronics department and I was gaga in the pasta aisle. Has anybody ever heard of chocolate pasta? Yep! I couldn't believe it. I bought some to make dessert over the weekend so I'll let you know how it tastes.

He was hurting when we got home so he did lay down for a bit, but then he got back up and actually managed to sit at the table and play a game of Skipbo with Breezy and I. He also ate dinner with us, which was really amazing.

After dinner we all called Moe and sang Happy Birthday and then Kevin just went to his room, Breezy did the dishes and I actually talked to Moe for a long while.

All in all, it was a pretty good day. I always like it when Kevin gets up and does thing with me/us. And he is really hooked on Skipbo right now - which is great. Anything to make him think!

Day 704 - May 3, 2010

Kevin barely got out of bed today. He did take a shower and that's about it.

I am just going to answer a few questions/comments and then try to get to bed. I can hear Kevin sleeping so I want to get some zzzzz's myself.

GrannieEv - I signed up for that survey weeks ago and have already been contacted about possibly taking part in one of the discussion groups. They are dated later this month so we will see if I get to participate. Thanks for letting me know about it!

Anita and everyone else - I know that you all tell me that I need to take care of myself, but it's really just not that easy. I made a goal to get my sense of self back this year and here it is - May 4 (Happy Birthday, MOE!!! - it's the first BD I missed - I'll try make it up to you though!)...Anyway...here it is May 4 and I haven't done one thing (that I can recall anyway). As for my blood pressure and/or seeing a doctor - not going to happen unless this bill goes through and I get medical coverage. We all know that the doctor's bill never stops at just seeing the doctor - there's always blood tests and work ups and yada yada. Totally not in my budget.

Janna - after Sept sounds perfect for a visit. Once Kevin has the plate back in he should be able to handle company a little bit easier. Good luck with the move!

Bryan Ott - 270 days after the President signs it? Holy crap! I am so not political and can't even begin to understand why it would take that long to take action. That's 9 months away!! Does it just take this long to figure out how to make the bill work? Or is that going to just add even more time before we are able to buy groceries and pay our bills? Also, you mentioned "You will get what the CNA's get for the hours the VA determines you provide Kevin with care". Hmmm...a little humor here - I know our CNA got $10 an hour. Since both you/Chris and I work 24 hours a day, 7 days a week, what do you think the odds are that we really get paid $7200 a month? Bwaahaaha! I think I can guarantee that's not happening, lol! (and say 'hi' to Chris and JT)

Cathy M - I don't know about our aide doing any type of 'therapy' work, but I did call our case manager at the VA here in SA today and told her that there really is no way that Kevin is going to be able to 'go' to any therapy. We are really going to have to have therapists come into the home and even then I'm not really sure he can handle it. He has just slid so far backward in this regard...

And now I am heading to bed. He has been sleeping the whole time I have been typing away so maybe it will be a good night...

Day 703 - May 2, 2010

I made it home safe and sound. No speeding tickets either - which is pretty good for this lead foot.

So I got home and had dinner with the kids, we unloaded the car and then Kevin and I played Skipbo for quite some time. Now I told him that I just have to get some sleep and we'll see what happens. Breezy said he didn't call her on the phone one time last night. She was so scared when she woke up and realized it that she ran to his room to check on him. He was just snoring away. It sure would be wonderful if it happened again tonight - I am still just so tired.

And on that note, I am going to bail on you guys again and go to bed.

Day 702 - May 1, 2010

I am pretty much going to skip writing tonight. I drove 13 hours today - made it all the way to Lake Charles, Louisiana and I have about 5 more hours to go tomorrow. I am tired though.

Kevin is doing remarkably well. He only called me a couple of times today and I am really proud of him. He has made such great improvements on the separation thing. I am thinking that maybe Breezy can watch Kevin one weekend every 2-3 months? I have 14 more free hotel nights (thanks to the last time we were in Texas and stayed in that hotel for two months) and I would love to see Louisiana - it's always been a dream vacation to me - and it's really not far from SA.

So anyway, I am going to bed. I am just beat!