Sunday, June 27, 2010

Day 758 - Jun 26, 2010

We had a super fantastic day today! One of Kevin's Army buddies from Afghanistan came in for the weekend to visit all of the "Herd" members at BAMC.

Anyway, Justin came over and he and Kevin just hit it off so well. They actually went for a drive together for quite a while - I was sooooo excited!!! - and then they came home and the five of us had dinner together (Breezy and Chris were here too).

After dinner (which, btw, Kevin sat through and ate plenty of!!) we all played a healthy game of Uno and then Justin had to go hook up with some of the other guys.

It was just so wonderful! Kevin did so well for HOURS and it really just made me so dang happy!

Truthfully, Kevin has been doing better now that we upped the methadone. He rarely takes any oxy and we only take Tylenol a few times a day now too. It could in part be the skin expander making his skin taut, but really...who knows and who cares. Whatever is doing it - I am liking it that Kevin isn't hurting as much and is starting to be able to do more.

So anyway, here is a photo of Kev and Justin:



I am really just so excited! I feel like things just might be getting better for Kevin (and in turn, me). We need it to. We have both just been snapping at each other and feeling sorry for ourselves and just all out feeling like crap. It's not the nature of our personalities so we really need to see a change.

Let's just hope I feel this way tomorrow because I am getting really tired of feeling down in the dumps...

Saturday, June 26, 2010

Day 757 - Jun 25, 2010

I am going to skip writing tonight. Just not feeling like it. Sorry!

Friday, June 25, 2010

Day 756 - Jun 24, 2010

We didn't really do much today, but we did have some company this evening. Brianna was babysitting (good practice) for her friend so her and Chris came over with the baby. We shot some video and here it is:



This baby never made a peep. Not one noise the whole time they were here. I sure hope Breezy's baby does the same, lol.

So I am just going to answer a few questions/comments tonight:

Karen - I read Glenda's post about the iPad and it excites me even more. I am so glad it was useful for her and made such a difference in her being able to do things we all take for granted - like ordering a coffee at Starbucks! I can only hope this works for us and Kevin is given one.

Tina Dwyer - thanks for letting me know about the iBallz (just in case Kevin does get an iPad). Those would be a must as far as I'm concerned.

Lorraine - the time that you read that I post to the blog is actually the time I begin the post. So yes - last night it was 4:32am when I started to write.

Becky and Long Time RN - I believe they don't want to put a port in Kevin due to the risk of infection. I know it was discussed at one point, but it's been nixed for now.

To everyone that asked lately about Breezy and the baby - they are doing fine. Luckily she is not suffering much from morning sickness, but she is incredibly tired all the time. She goes for another sonogram in a couple of weeks - can't wait to see that. Kevin will probably be in the hospital so we will be relegated to just looking at a photo. Bummer!

Hallie - it looks like we are going to have to get some type of mattress topper. The new mattress was delivered today and it was worse than what he currently has. Apparently they aren't carrying the one he had originally anymore. Arrgh!

Ok - off to watch some senseless tv.

Thursday, June 24, 2010

Day 755 - Jun 23, 2010

Today was another great day. We had a young lady come as Kevin's aide today and they hit it off as well as he did with Johnny. Johnny can only come on Mondays as he is in college so Leigha (sp) will come the other two days a week.

Anyway, I am ecstatic to say she came in the door with skater punk clothes on as well. She is from a military family too and she lived predominantly in Germany so they also had that in common.

We also had a guy come today to discuss technological aids to assist Kevin in being more independent. He is going to request (from the VA) that Kevin get a remote that will control all of the lights and fans in his domain. Man, that will save me about 200 (not an exaggeration) trips a night into his room to adjust his fan and turn on/off the lights. We also discussed an iPad and that excites me more than anything. One of the nurses had one when we were in the hospital the last time and as soon as I saw it I knew it would actually be perfect for Kevin. He has a laptop now, but it's too bulky for him to move around by himself with one arm/hand. The iPad is super lightweight and it's not bulky at all. He also can't spell or type so browsing the internet doesn't work for him unless I am sitting there with him. He can also lift it to his face so that he can see things clearly as he does have an issue with that on his laptop. He enjoys playing games and the guy watched Kevin zooming around his phone to get to the different apps so he was just as excited about it for Kevin as I was. I so hope that happens. Kevin would truly be so ecstatic! Some of those apps would really help him learn and he could also work on his hand/eye coordination. The guy also mentioned that speech pathologists have apps for it to help with speaking so that Kevin could use it when he needed to say something that he couldn't voice. Wouldn't that just be so awesome for him?

So other than that, we did nothing today so I am going to sign off and continue scrapping. I hope Kevin goes to sleep soon...

Wednesday, June 23, 2010

Day 754 - Jun 22, 2010

Today we were supposed to have fluid put into Kevin's expander, but when we got to the hospital Kevin had a slight temperature. We discussed it and decided to just wait a week as some of the stitched area looked like it could have used the extra time to heal anyway.

Kevin and I had planned to go see Toy Story 3 today after visiting the docs, but I didn't think we should go with him having a fever. We had the nurse take his temp again at the end of our session and sure enough it was normal. He had no other signs of being sick and the PA thought it might just have been the heat as it was close to 100 degrees here. Being overly cautious though, I still thought we should go home, but Kevin was adamant that we were seeing the movie.

He wore me down, so we did see it. And we both enjoyed it immensely.

That pretty much sums up our day so I am going to go and read some. Kevin is still wide awake and raring to go. I wish I had his energy...

Oh - and thanks to the anonymous person that pointed out I jumped from day 750 to day 780. It must have been a typo and I always go by the previous post to know which day it is so it would have just kept going.

Tuesday, June 22, 2010

Day 753 - Jun 21,2010

FINALLY!!! Today a young skater punk arrived at our door to spend the day with Kevin!

And let me tell you - I never heard a peep out of either one of them for 5 whole hours! They got along famously, played the same games, watched the same movies and Johnny even met the band Atreyu back when they were nobody. Kevin was ecstatic and it made my heart just sing!

I was able to get my scraproom cleaned (it's been the catch-all room up til now) and I made a nice dinner for all 5 of us (Breezy and Chris came over too).

And that pretty much sums up our day. I have a bit of a headache again so my thoughts are a bit scattered tonight. I think I'm just going to sign off early...

Monday, June 21, 2010

Day 752 - Jun 20, 2010

Poor Kevin. Today was just one of those days when everything was completely off-kilter. No matter what he did - it was messed up. Shows he taped were screwed up or just not there, he spilled his strawberry milk twice (one time the cup went flying and completely covered the whole dining room - ack!!), the store was out of choc chip cookie dough pop tarts, his sheets keep coming undone on his bed (meaning he has to get up out of bed to fix them), he's whacked himself in the head a couple of times today and truly...I could go on and on. Personally, I was getting ready to duct tape him to his bed, lol. I was outright afraid of what was gonna happen next.

But hey - at least I won ALL 9 games of cards! YES - ALL of them!! Poor guy - he couldn't even win one hand. I did think about letting him win, but he busted me doing that once in the beginning so I won't try it again.

And that's really about it today. We ventured out to Walmart specifically for the pop tarts as Kevin takes a few bites to keep from getting sick when taking his pills. I thought about taking him to see Toy Story 3 today, but we really stay away from things like that on the weekends. Usually, we don't even leave the house on Sats and Suns due to the crowds everywhere.

So anyway, I hope all the fathers out there had a great Father's Day! And the same to the moms that have had to be the father too!

Sunday, June 20, 2010

Day 751 - Jun 19, 2010

Ahh. The wonders of technology. Today, Kevin and I attended a wedding in Florida while sitting at our dining room table in Texas. Yep. The family took a laptop, hooked it up to the internet, placed us to the right of the minister and we Skyped the whole thing. The reception too. We got to see Chrissy be given away by her 2 dads and her grandfather (my dad) and we got to see them exchange rings and we also got to see them share their first kiss as husband and wife. It really was such a lovely ceremony. After the wedding we got to see everyone eat and the first dance, the bouquet toss and the cutting of the cake. All in all, I was Skyping for 4 hours. Kevin made it through the ceremony and that's about it.

So the quality wasn't the best, and it sure wasn't the same as us being there, but it definitely beat the alternative and that was to miss it entirely. I am so glad I thought of this yesterday. We got Skype set up and everything last night, but we weren't sure if there would be internet available. Sure enough - there was. YAY!!!

And in the middle of the reception I got a phone call from someone I haven't spoken to since 2nd grade - over 30 years! Unbelievably, my best friend from back in those days found me via the internet and contacted me today. Jocelyn - it was just so wonderful catching up with you!

It's just amazing the things you can do nowadays, huh?

Friday, June 18, 2010

Day 750 - Jun 18, 2010

Kevin had yet another great day. He did sleep (his kind of sleep - not the normal kind) until almost 3pm, but since he woke up and stayed up, he has been in a great mood.

Sadly, he wouldn't allow the new aide to do anything for him, but we have a young man coming on Monday so we will see how well that works out.

Anyway, we had a nice dinner (which he sat through entirely!) and then we played a very competitive game of Skipbo. I am loving the fact that he has become quite a vindictive player. Beware Moe - he is more cutthroat than even I am, lol.

After dinner, we Skyped with everyone in Florida. I don't think I mentioned that my niece, Chrissy, is getting married tomorrow. It's heartbreaking to both Kevin and I that we aren't able to be there. Everyone is staying at the house and it's just so sad that we are missing such a large event in our family.

But, I must say that my parents look wonderful! I think they are lovin' having everyone around. Kevin got very upset when the kids were all going out for the night and he realized that he wasn't able to do it, but he rebounded after we hung up.

So directly after Skyping Kevin actually stayed in the living room and we watched "The Wizard of Oz" together. He has been out of his bed/room for hours now.

And - and get this - he did not take one dose of oxy today!!! He took Tylenol only 3 times too!

The doc mentioned yesterday that the expander may fool the brain into believing the plate is in. I thought about that the other day because with the skin taut like that it becomes hard. I didn't ask though so I'm glad the doc mentioned it. Wouldn't that be great if he was able to be up more and to not have so much pain?!

Day 749 - Jun 17, 2010

We had a really good day today. We had to go to the hospital for a video conference with our plastic surgeon (he is actually from Maryland and comes one week a month to work on the burn patients) and then Kevin had his stitches removed. He did really well with that and then Kev wanted to go visit everyone on the burn ward. We did visit for a while and then we headed toward home.

I did learn some things today. First, Kevin will begin to have between 30 and 40 CCs of saline solution put into his expander starting next week. We will continue to do this until roughly the last week of August when we will have the plate put back in (once again - barring any infections). Kevin needs to have a CT scan done of his head pretty soon so that the plate can be ordered too. It takes about 4 weeks to have one made.

I have also decided to detox Kevin beginning Jul 7 - a day after his birthday. I am already starting the process, but Kevin will be admitted to the hospital on that day for roughly 10 days as we pull him off of the methadone. At this point, we are adding methadone, hoping to eliminate the oxycontin. Apparently there aren't as many side effects from decreasing the meth as there are from oxy. I am scared to death to do this, but I am trusting the docs on this one.

We also have a dentist appt on the 29th of this month and our team at BAMC wants Kevin to have ALL of his dental work done before this plate is put in. This will be interesting as we are having the work done at a VA clinic and we all know how slow they are. Personally, I can't see it happening and I only hope that I am proven wrong.

The thought process on this is dental work also runs the risk of infection and we want all possible infections treated before the plate is reinserted. If Kevin's new plate were to get infected, I believe he would have to wait a full year to have a third put in. That would be horrible!

And this pretty much wraps up our day. Here's hoping tomorrow is another good one!

Thursday, June 17, 2010

Day 748 - Jun 16, 2010

I am really sorry that I didn't check my post last night. I always do, but Kevin was impatient to get the game started to I just hit the button and walked away without looking. I went to bed after we played a few hands so I didn't see it until later today. I really am sorry for those of you that worried unnecessarily.

So anyway, the case manager is working on different avenues to get a new mattress. She called today and feels our frustration and I am trying to feel confident that it may happen soon.

She did get the reverse osmosis rolling. I talked to the water filtration guy a few times today and it appears the water softener will be here next week sometime. I don't know if I mentioned that San Antonio water is not good for burn patients to shower in. I never knew about this, but I would hazard a guess that Florida water is no better.

And poor Kevin today. His shower stall is just a small one and because he can't get his stitches wet he had to take a bath today. When sitting in his shower, the water just beats down on his head and he can't get his head or face wet. So anyway, I helped him get into the tub, which is one of those garden tubs - really deep - and that went RELATIVELY easy. BUT, getting him back up and out of it - now that was a whole different story. We both struggled and after about 10 minutes of us trying to find a way to do it, I finally just crawled into the tub and basically lifted him out by grabbing him under his arms and around his ribs. Geesh does that boy need to lose some weight.

I so hope that they remove all of his stitches tomorrow when we go to see the doctor. Not sure how many days I can lift him out of that thing.

And the new aide came today. She was a very nice older woman, but I did reiterate that we would prefer a young man. They are going to keep looking for someone in the meantime.

Wednesday, June 16, 2010

Day 747 - Jun 15, 2010

Yay! We made it to the movie! Kev did pretty well, but there were quite a few subtitles and I realized about halfway through the movie that Kevin couldn't read them. Duh! Once I did realize that he wasn't understanding, I started to lean over and read them to him. That really helped. Sometimes I am a little slow, lol.

And tonight Kevin is just frustrated and angry. He is in his room trying to turn over his mattress because his bed is just so uncomfortable. I honestly don't know why it is so flippin' hard to get a different mattress?! I just popped off another email to the case manager and here's hoping that this time - it works. I'm not holding my breath, but I am ready to just scream. Kevin, on the other hand, is screaming. He is in there screaming "HOW LONG? HOW LONG?" and he's just crying in frustration and it is really heartbreaking. This is the kind of crap that just burns me up! Seriously - how much more does the kid have to suffer?

And tomorrow we have a new aide coming. Joseph just didn't work out. It's a shame really, but it is what it is.

Ok, I just challenged Kevin to a game of Skipbo. Anything to get his mind out of his misery.

(OMG! I wrote this last night, hit the post button and walked away. I didn't realize there was an error! Sorry for alarming anyone!)

Tuesday, June 15, 2010

Day 746 - Jun 14, 2010

We came home from the hospital today!! We got home late-afternoon and by the time I got Kevin all situated it was time for dinner. Breezy came over and we had apple streusel (sp) pancakes (although Kevin had choc chip pancakes) which truly did sound better than they tasted.

Anyway, and I shit you not - Kevin already looks like one of the coneheads from SNL and it's only week 1. Every week for 2 months they will put more saline solution into the sac on the top of his head, just under his skin. If you all remember what he looked like in the beginning, imagine all that fluid being built upward on the top of his head. We thought we were going to be able to cover his head with a hat, but it's pretty clear at this point that that's not gonna happen.

This is going to be a really rough 2 months. Kevin chuckled when he first saw it today, but I feel safe in saying that he will probably refuse to go anywhere within the next couple of weeks. I know I wouldn't step foot out of the house looking like that. Call it vain, call it whatever you want, but I wouldn't do it.

I just feel so bad for him.

So, I am planning to take him to see The Karate Kid tomorrow. I figure we better go see the movie real quick or we won't be seeing it. And then there's Toy Story next week - yahoo!

And yes, I know I could be wrong - maybe it won't faze him in the least, but I want to try to get some fun in now just in case.

I also need to decide whether to throw a little birthday party for him and Breezy. Parties are not easy for him and who can say what his mindset will be in a few weeks. Then there's the question of whether or not I have the energy to put together something like that.

Oh well, I guess I'll think about it tomorrow. I'm just too tired to tonight.

Monday, June 14, 2010

Day 745 - Jun 13, 2010

Today was pretty rough. Kevin was just angry all day. I got tired of it a few hours into the afternoon and left. I just can't sit there and be treated like a piece of crap and he needs to learn it.

Unfortunately, he's been angry/miserable for a while now and it's just been getting worse and worse. I am sure it's that he is completely aware now of the changes in his life. It's also hard for us to see an end to the surgeries and therapies and it's hard to believe that we will ever have some form of normalcy.

In all honesty, for the last two years Kevin has lived in this haze of sorts that kept the reality of his life from him and the haziness is now gone. Sure he had moments where clarity reigned, but it always left as fast as it came.

Now he sees it. And there's no escaping it. And now we both just need to figure out how to deal with it.

I can only hope we figure it out rather quickly. There is absolutely no pleasing him and neither one of us can live this way much longer.

Saturday, June 12, 2010

Day 744 - Jun 12, 2010

Kevin is doing pretty well today. He did sleep quite a bit for some reason, but we did manage to go down to the cafeteria for lunch.

He has a nurse all to himself tonight and the guy planted himself in Kevin's room and was doing things with him. I asked Kev if I could leave early as I had laundry to do and he was having such a good time with Glenn that he didn't care at all. Kev was in the process of showing him all of his videos and they were even skimming parts of "Out Cold" - Kev's favorite movie of the moment. This guy was really great with Kevin when we were in-patient the last time so I was really happy to see him tonight.

I did think we were going home today, but obviously we didn't. I am hoping we get to go home tomorrow, but I'm not sure. He seems well enough to me, but I heard (in passing) that they were keeping him partly so that I could have a break. I don't know if it's true, but I'm not gonna lie and say I don't appreciate it. It's been very rough lately dealing with all of the pain issues and being homebound. Kevin has really been miserable a lot the last couple of months and it just weighs so heavy on my heart to see him like this. I just wish there was a way to make him feel better.

So anyway, I am going to sign off early. Finally - FINALLY - I am going to watch Avatar! I was so adamant that I was going to see it at the theater in 3-D, but Kevin refused to go and there just wasn't time for me to get out and see it without him. Crazy, huh? It was in the theaters for months and months! But no matter - I am already about 20 minutes into it and am so impressed with what I'm seeing so far.

Friday, June 11, 2010

Day 743 - Jun 11, 2010

Kevin is doing fantastic tonight. It took him until about 3pm to really wake up and move around, but once he did he started eating and drinking and he even got up and we went for a couple of walks.

So I have a couple of pictures for you guys. The first is what Kevin's eye looks like right now (excuse the black line in the photo. I am too lazy to fix it):


I can't wait to see what it looks like once the swelling goes down!

And this next one? Oh yeah. We have some pretty funny doctors here at BAMC. Seriously, I am gonna kick some butt when I find out who was behind this, lol. I can only assume that this is the way someone is playfully getting back at Kev - the ultimate jokester. He always makes everyone laugh and I can't tell you how hysterically we all laughed when we saw this:



Yep!!!! When they shaved his head they left a rattail!!! When Kevin was walking it came to our attention and there was a whole bunch of nurses in the hallway and we were all doubled over with laughter! Kevin just kept shaking his head in mock disgust. It was just so flippin funny!

I'm anxious to see if they left something else under that bandage, hehe!

Another Update

Kev just called me on the phone and is agitated that they weren't on time with his meds. All is back to normal, hehe. I don't know if I ever explained but if the nurses are even a minute late - and he has a watch to time this - he is screaming "PILLS" and ringing the bell like a mad person. He really does have extreme OCD.

Well, gotta get to the hospital. They are moving him back to his room in a few minutes.

YAY!!!

Day 742 - Jun 10, 2010

Ok. So although Kevin did very well in surgery, he just won't wake up. I am only allowing myself to believe that it's because he did have a lot of anesthesia as it was a very lengthy surgery with multiple surgical sites.

BUT - in reality - there is a chance it could be because of the expander having to be placed over the shunt tube. There just wasn't anywhere else to put it. I was very happy to hear that the neurosurgeon sat in on the whole entire surgery (4 1/2 hours) and that the tube has actually grooved itself into Kevin's skull, but it still could have put pressure on it that will make it where the CSF can't travel down to his belly. I will know more in the morning as he surely will be awake by then if it's just anesthesia.

I did come home tonight. I wasn't going to - it was very hard to do - but he was so out of it there was no sense me staying and torturing myself. He was a bit combative when he would rouse for 30 seconds or so and both Breezy and I had to leave for a bit when he shoved her away. He didn't realize he was doing it, but it was like deja vu. It was exactly what it was like in the beginning. We both had to step out and just cry for a bit.

But, we are going to end on a good note. Kevin really does look great. His ear is normal shaped now and his eye looks fantastic - and it will look even better once the swelling goes down. I can't see what his neck looks like as it's bandaged and I can guarantee he will be very deformed in the head (one side sunken and the top abnormally large over time), but still...he looks wonderful to me!

So ok, Buddy...it's time to wake up now...

Thursday, June 10, 2010

Update

Kevin's surgery is complete. The doctor just came in and said that everything went very well! They did everything - put in the expander, fixed his eye, cut out the ridged scars along his neck and removed the lump on his ear! YAY! Now let's just hope nothing gets infected and if that's the case - we are good to go!!

Day 741 - Jun 9, 2010

We are ensconced in the hospital and Kevin is trying to get some sleep. They had to put him in a double room this time, but no one is in there with him so I commandeered the other bed. I decided to stay tonight as his surgery is in the morning sometime so I actually have a bed instead of a cot - yipee!

Darn. They just came in and said the blood they got was no good so now they have to start sticking him again. It is so difficult to get blood from him because his veins are just so used up. We have to get some though, no matter how many pokes it takes. This is making me wish I would have just tried to do some of it yesterday. Grrr...

I guess I need to wrap this up as the nurse needs some help. Not much else to say anyway.

Wednesday, June 9, 2010

Day 740 - Jun 8, 2010

Yes! We are being admitted to the hospital tomorrow and the charge nurse told us that she would just do all of his pre-op testing when we got there. I guess they are only taking blood - which really is the hardest of it all - but at least we didn't have to go down and do blood work in the lab.

After we had our doctor's appointment and visited the burn ward, we went and sat with Maritza and Jose for a good hour or so. Joel was having surgery today so they were in the waiting room. I sure missed them and so did Kevin. It's been rough being mostly homebound so today was a nice day visiting with friends.

I did have a talk with the pain doc too about Kevin's pain level. Both Kevin and I are very anti-pill, but this constant pain thing has got to go. The doc wants me to check Kevin into the hospital for 10 days (not this trip though) and we will start the detox process. We will know then if it's real pain in the head or if it's addiction. He wants me to think about it so I am going to sit down and run the pros and cons of doing it now vs doing it after the plate is put back in. No matter which way I swing - something has to be done. He can't continue to live like this when it's not really necessary.

So anyway, Michelle Long - you asked when Kevin would be getting the plate put back in and he will have to have the skin expander in for a minimum of two months. On the day it comes out - the plate goes in. This is all barring any infection, which as far as we know he is free of at this point.

IF his head gets infected with the expander, it will be removed and we will have to wait 3-6 months before it can be re-implanted. Let's just hope that doesn't happen!

Tuesday, June 8, 2010

Day 739 - Jun 7, 2010

So I guess Kevin is having his skin expanders put in on Thursday. I knew the surgery was tentatively scheduled for the 10th, but I never heard anything so I called the burn clinic today and found out it is on the schedule. Now we have to hurry and get all his pre-op testing done tomorrow. I don't know anything yet about how long he will be in the hospital, but we will probably get some answers tomorrow as we have an appt at the burn clinic in the early afternoon. I sure hope Kevin can handle all of the pre-op stuff at one time. I would prefer that they admit him a day early (unless this is an out-patient surgery?) to do all the blood work, scans, etc. This would give him a place to rest in between all of the tests, but I'm not sure if they will be willing to do that. I guess there's no harm in asking tomorrow though, right?

Monday, June 7, 2010

Day 738 - Jun 6, 2010

For some reason I can't log in to post from my laptop, but I can from my phone? No idea, but I will catch y'all tomorrow night.

Sunday, June 6, 2010

Day 737 - Jun 5, 2010

Well, we made it to the picnic, but by the time we got there it was pretty much over. Kevin was just in a bit of pain most of the morning and there's just no sense even trying to go anywhere when he is already hurting. So we got a much later start than I had planned on.

Other than that, we did nothing today. We came home and played a few games of Skipbo and that's about it. He was hurting pretty bad most of the rest of the day so he mainly stayed in bed.

So I guess I'll just answer a few questions/comments:

Hallie - my thoughts are with you and your husband. I feel confident you will have the strength to get through it - it always just seems to come from somewhere!

Janna - I gave a lot of thought to what you said about me knowing the real Kevin more than a therapist that spent an hour and a half with him. Truthfully, I have given a lot of thought to that whole episode period.

I think that Kevin does know the bulk of what we are saying/doing. I think he understands the important parts of a conversation and let's the unimportant parts fly by because who really cares, right?

For example: the story mentioned a woman named Anna who lost a ruby ring and she cried. When asked if her name was Anna he said yes. When asked later if her name was Amelia he said yes. Who cares right? When asked if it was a diamond ring he said yes. Later when asked if it was a ruby ring he said yes.

He knew the story was about a woman who lost her ring and she cried. He did tell us that, but he didn't know the specifics and I think it's partly because it wasn't important to him.

Now if it were Breezy and she lost her red ring he would know the who, what, when, where and why. But he really didn't care about the person in the story because it didn't affect him.

Now obviously he is cognitively impaired. If he weren't - if he were completely better - he would remember the person's name, the kind of ring, etc. And I am aware that he is impaired and it didn't come to me until way later that he does understand the things that do affect him. He does understand the things that affect myself and Breezy. The things that are important to him.

Something else that made me think about his memory is getting gas yesterday. We got gas and although I never look at the price, for some reason I did while I was pumping. Probably about 15 minutes later, when we were on our way home, Kevin said 2-6-7. I had no idea what he was talking about so he made the sounds and the hand motions of someone pumping gas. I still didn't know what that had to do with it, but then it clicked. $2.67 per gallon. He remembered how much the gas was. So if he can remember that 15 minutes later he obviously can recall things that are important to him.

I don't know...maybe I am just grasping at straws, but it just seems to me that if he can answer appropriately a lot of the time, he has to know what's going on around him. Ruby or diamond ring be damned.

Chalkie - thinking of you and Carol often. Will email you soon!

Kathy in IA - I have purchased those books at Walmart for Kevin to work in, but he absolutely refuses. I think it's because they are children's books. The therapist mentioned some adult papers so hopefully we get them before the year 2020. (yes - some VA sarcasm - still no bed, still no one handed soap dispenser, no reverse osmosis, and on and on)

Lorraine - I can't believe that Rick got a tattoo of Howard the Duck on his chest, lol. He is such a character!!

Karen in Vancouver - thanks for your comments. Kevin and I have started to slowly read the blog from the beginning too. It's amazing how many things I was told that I didn't retain (due to probable shock). Honestly, I didn't remember that the doctors cut out part of Kevin's brain - all this time I thought it was just dying off and reabsorbing into his system. It makes sense though. The CT scan shows an exact line where it was cut and I often thought that was weird.

Ok - this has become a book. Off to bed for me...

Saturday, June 5, 2010

Day 736 - Jun 4, 2010

Kevin has been very angry for about the last week or so because he can't go anywhere by himself. He wants to be able to jump in the car and just go somewhere although when asked where he wants to go he just screams "I don't know!!" He does understand that he can't go anywhere by himself - not totally anyway - but I think he's just tired of being in the house and tired of being with the same person day after day.

So today, Joseph and I took him to Dave and Busters. D&B is basically an adult arcade and you should have seen Kevin's face when he was walking closer and closer to the game area and was finally figuring out what we were doing. I wouldn't tell him for the last couple of days where we were going, just that it was a surprise and we were going to a fun place.

And he had a blast. We were there close to three hours. I did have to medicate him twice, but he didn't want to leave no matter how much pain he was in. Finally though, he was in sensory overload and we did go home, but after we were home a bit and he rested - he wanted to go back!

For me, it was so great to see him having fun, but it did make me think again of how sucky his life really is. Putting aside all the medical stuff - he has no friends, he is usually in too much pain to do anything and if he felt well enough he has no way to get out and about without his mommy taking him. Pretty bad for a 21 year guy.

Hopefully, once the plate is put back in his head, he will feel better and can start doing things. Things with the Wounded Warrior Project and other wounded soldiers. Maybe he and Joseph can go do things too; fishing, concerts, who knows...

Tomorrow we are supposed to go to a picnic with other wounded military personnel. I really want him to go and start doing things like this, but he doesn't want to. He's just not a picnic kind of guy so I imagine I will have a fight on my hands in the morning. Keep your fingers crossed.

Friday, June 4, 2010

Day 735 - Jun 3, 2010

Well, the speech pathologist came today and it was a pretty decent session. Kevin made it about 1 1/2 hours before he went back to bed.

He did exceptionally well with all of the visual stuff. He remember patterns easily, when showed a picture he could either say the word or tell you how many letters were in the word, he seemed to read quite a bit and he was able to draw lines from shape to shape, small to large on request.

Where he struggled was with verbal therapy. Today showed me that Kevin really doesn't either understand as much as I thought or he just can't retain what he just heard completely.

For example he was read a story with maybe 10 sentences. When asked questions after the reading was done, he couldn't really answer correctly.

And I really don't understand this, but when Kevin was asked what his name was he said "Kevin". But when she asked if his name was Brown he said yes and when she asked if his name was Smith he also said yes. That stumped me completely because he knows his name is Kevin - he will tell you his name is Kevin - so how could he not know his name wasn't Smith or Brown?

I was kinda sad after she left because he really had me fooled - again - and I just want him to be better so badly. I know...I know...there's still time for him to recover, it's just I really did think he understood almost everything I said. He almost always answers appropriately - I really don't understand how he does it.

But anyway (gotta stop blubbering so I am moving on), one cool thing was that she read directions for Kevin to draw a clock and put the hands to 10 mins past 11. He wrote all the numbers correctly and even put the hands in the right place. It was impressive to me that he could do that, but it was even more impressive that she read all of the directions at the same time and he was able to do it all without needing anything repeated. (so he remembered this, but not the story? maybe cause it was only 2 sentences?)

Anyway, if you remember from many months ago while we were in FL, we were working on him following multiple directions given at one time - like sending him into Walmart for bananas and bread, but you may also remember that back then he only ever remembered one item.

I am going to take this as an improvement. After today, I guess I need to focus on the improvements we do have and I need to be realistic in what I am seeing and not what I am wanting to see.

Although personally, I like the world where I see what I want to see so much better...

Thursday, June 3, 2010

Day 734 - Jun 2, 2010

I hate to skip again, but I have been sitting here with my computer on my lap for over an hour now and I just can't think of anything to say. We didn't do anything at all today - Kevin barely got out of bed - and that pretty much leaves me with nothing exciting to talk about.

Tomorrow I should have some information as the speech pathologist is coming. I am excited too because she is bringing some cognitive tests with her and I can't wait to see what she says!

Wednesday, June 2, 2010

Day 733 - Jun 1, 2010

I can hear Kevin in his room practicing his alphabet song. I have been really working with him on more words and him being able to sing his ABC's. He is really doing fantastic - he is up to the letter G and he says everything so clearly so far.

He is also able to say 'turn off the lights' now, but he still struggles getting the sentence out when he needs to say it. Most of the time I have to make the "t" sound as my finger is on the light switch. This will prompt him to say it. He often needs a little nudge in the right direction.

I do think that maybe 5 years or so down the road Kevin will be able to have some amount of conversation, but I think he will always have to think about how to say what he wants to say. I believe that at times the wrong sentence may come out of his mouth as well, but really...who cares, right? If he could just communicate with his friends and those around him that would be so wonderful.

I am excited too in that a speech pathologist is coming to the house on Thursday to do an evaluation on Kevin. She's not sure she will be able to continue to come, but she can at least help me to best know how to train him. So far my teaching has been by trial and error and I look forward to some guidance.

And that really sums up this post. It's been a bit of a rough few days, but it's time to wipe the sweat and drive on, right?

Right!

Tuesday, June 1, 2010

Day 732 - May 31, 2010

I am just going to skip writing tonight. I hope everyone had a great Memorial Day!

Sunday, May 30, 2010

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.

Saturday, May 29, 2010

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:

Friday, May 28, 2010

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!

Thursday, May 27, 2010

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.

Wednesday, May 26, 2010

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...

Tuesday, May 25, 2010

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.

Monday, May 24, 2010

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.

Sunday, May 23, 2010

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...

Friday, May 21, 2010

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.

Wednesday, May 19, 2010

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.

Tuesday, May 18, 2010

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.

Monday, May 17, 2010

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...

Saturday, May 15, 2010

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.)

Friday, May 14, 2010

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:

Thursday, May 13, 2010

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!

Wednesday, May 12, 2010

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...

Tuesday, May 11, 2010

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.

Monday, May 10, 2010

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...

Sunday, May 9, 2010

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...

Saturday, May 8, 2010

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!

Friday, May 7, 2010

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.

Thursday, May 6, 2010

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...

Wednesday, May 5, 2010

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!

Tuesday, May 4, 2010

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...

Sunday, May 2, 2010

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!