Day 503 - Oct 14, 2009

Today was a better day. Kevin was in a better frame of mind and was even patient while waiting at the doctor's office for him to get out of surgery - and this was after driving around for a half hour trying to find a parking spot. We actually missed our therapy because we couldn't find anywhere to park, which is just not good.

And unfortunately, we still need to leave the drain in his head because he is still putting out the same amount of bloody fluid (about 30 ml a day). We are becoming used to it now and have figured out ways to 'rig' it with a safety pin so that it stays up near his neck and doesn't hang down painfully. We tape it to the back of his neck while he showers and it's really working - like things always do once you figure out how to get around the rough spots.

And now I am just going to touch on some of the comments today as there were some great ideas.

First - to the people that seem to despise the three of us - you don't bother me. See, I know the truth about what our lives are like - you don't. You ASSume you know, but you honestly show your ignorance by posting things that are not true.

This is also true of and I also feel sorry for the person that turned this into a money issue. Someday, I hope you realize that life really isn't about money - it's about loving your family and friends and feeling bad for the horrible changes in life.

As to the person who offered me a tissue - thanks. I'll take that tissue! Some days are harder than others in dealing with the magnitude of our loss and on those days I would love to learn how best 'to deal with it' as you requested. Maybe next time - instead of being nasty - you can offer some good advice that might just help.

Lisa D in Cali - Kevin isn't really willing to negotiate very often. I don't know if he understands the concept or not, but for the most part he is just too set in his ways.

To mamaworecombatboots - I never once thought about this being like autism - especially Aspergers. I will definitely research this as it sounds like Kevin and your daughter have a lot of the same symptoms. Thanks! And best of luck to your daughter too!

Alison - Sometimes Kevin's short term memory works - sometimes it doesn't. Sometimes his long term works - sometimes it doesn't. He also can write only a few words. He doesn't know how to spell anything as he doesn't know his alphabet anymore (but he knows his numbers and can do math quite well). And your idea fell in with Long Time RN's so I am going to move onto hers.

Long Time RN - I like the idea of the timer. I don't know if he would understand though. Right now he has a watch that he looks at constantly (he can tell time) and like I said - one minute he looks at it and understands, but then the next he loses the brain function and he forgets. The timer is something I am going to try though. You just never know. Great idea!

To Janet - I know you called me yesterday, but I haven't had time to even listen to the voicemail yet. I hope Matt is feeling better after his surgery? Did they get the equipment necessary to exercise that arm/hand yet? Love ya!

Miss Em - (how are you recovering from the floods, btw?) - you expanded on Long Time RN's idea with the timers. It is definitely worth a try. You also mentioned having other therapists sit in with Pam until Kevin gets used to them. He has had others in the past and sometimes he is willing to deal with it, but mostly he is not. It's really Pam's fault as she is just so dang wonderful (right, Pam? LOL) Seriously tho - they just have such a bond and he looks forward to seeing her and gets upset when she's not there.

Ok - there are more, but I am trying to get sick and need to get to bed. I have been coughing for days and I feel so run down. I have a couple things to do first, but then I am down for the count.

Day 502 - Oct 13, 2009

I think the hardest part of all of this is the frustration. It is just so damn frustrating trying to get Kevin to understand how important things are. He went to therapy today and Pam wasn't there so he didn't want to do his therapy. He just doesn't understand people needing a day off and he doesn't understand how important therapy is either. So he left.

It's even more frustrating to me because I DO understand. I just can't get Kevin to - no matter how hard I try. This causes both of us to go to our corners and cool down for a bit, but then what? Nothing. Because he still doesn't understand and to be truthful, he's already forgotten that we didn't agree on an issue.

And this is just one point of the day. Here's another one - he hurts. I give him pain pills. But they don't work immediately so he wants more. One minute he will watch the clock (knowing there's a 30 min window before they will work), but then he starts screaming because they haven't helped yet. It's like for a second his brain works, but then it doesn't. I have to stand next to his bed sometimes for a half hour just trying to get him to remember that his pills take time and that he just got them 5, 10, 17 (or whatever) minutes ago.

And then there's dinner. Kevin has dinner patterns. For example - we must find a Taco Bell with KFC included. He MUST have a large popcorn chicken with honey mustard sauce and a soft taco with mild sauce. If one thing is missing - he won't eat any of it. Yesterday they didn't have the honey mustard sauce. So I had to hold up the drive thru while we returned all of the food. I tried to get him to eat the taco, but he was not gonna do it in any way, shape or form.

It's frustrating. SO, SO FRUSTRATING!

And then there's his pills. The meds are different here in a military establishment than they are in a VA hospital. You might have one pill in FL, but here you need 4 to get the same dosage. Kevin just REFUSES to take pills that are different. He checks them over each time he needs to take them to see if they are right. One of them is ok because a long time ago he had green pills. When we discharged from the VA they were brown (went through all this then too) and here they are green again. He was so excited to see the green ones - almost like he found an old friend.

And let me tell ya - I don't know how many doctor appts that we just left from because he doesn't understand the waiting part sometimes. I play this juggling act trying to get docs to understand that Kevin really can't wait long and that we can't get there in the early morning because it just takes too long to get his morning routine taken care of. Sometimes the docs hear me. Sometimes they don't. Sometimes he will sit there and wait. Sometimes he won't.

And let me just jump in here and mention that someone posted a few weeks ago that Kevin needs to learn who is in control...

I actually was surprised when I read that, but then I realized that that person just doesn't have a clue. I have really tried to educate everyone on what this is like, but I just think some (very few) people either don't want to hear the truth or just can't comprehend it. So think of it this way - would you say that about a person with Downs Syndrome? Or a mentally retarded person? Honestly? I doubt that you would. And to be blunt - Kevin is mentally retarded now. He lost function in half of his brain, which is essentially brain damage.

So please, this is just me ranting about a crappy day. I don't need any negative comments, what I need is advice on how to work through the frustration that is with us every, single day.

After all, Kevin is not gonna change overnight. Maybe someday it won't be like this, but for now - it is.

Day 501 - Oct 12, 2009

I don't really have much to say tonight so I am going to just touch on two questions/posts in the comments from the last few days.

Anonymous - I read the story on CNN of the woman born with half a brain (thanks for mentioning it). Amazing, huh? I was told sometime over the last year and a half that age matters when it comes to rewiring the brain and this just proves it. Her brain has been rewiring since birth and look how far she has come. Kevin was wounded at 19 and he has come a long way too and he still has many more years of healing in him. If anyone wants to read the story CLICK HERE.

To the other anonymous poster that asked if we were still planning to renovate the video store - we put that on the back burner for a bit. I was told it would be like $30,000 and I just can't see spending that kind of money. I do want to look into it further someday down the road and see if it really will cost that much, but we need to get things more stable first.

And other than that, I honestly don't have much to say tonight. We did go to a store to buy some 'fall' type clothing as it's a little cold here, but Kevin got so over-stimulated that we really just came back to the hotel. I don't remember it ever being cold here, but apparently it can be. Because we thought we would only be here a week or two, we only brought summer clothes - shorts and flip flops - so we all need to pick up some pants and at least a jacket.

And that's it. I am going to head to bed early tonight.

Day 500 - Oct 11, 2009

Day 500. Wow. Sounds like a lifetime. Feels like a lifetime.

It's just so hard to believe that we have been at this 500 days. Man, it makes me tired when I think about it like that. So I guess I just won't think about it...

Anyway, we didn't do much at all today. I went to the grocery store and picked up a few things and the kids stayed here. I also did laundry. Isn't that exciting? LOL.

And honestly - that's it. Kevin is starting to feel better, but I noticed that when his drain clogs, he starts to hurt. I keep 'pushing' the blood through as it's needed now that I figured it out. This isn't a very clear picture of what I am doing, but I really don't know how to explain it. I just need to keep a better eye on that drain so that I push the blood through before it's clogged too long.

And now I am signing off for the night. Kevin is still awake, watching Adult Swim (?) so I am going to (hopefully) get an episode of Project Runway in.

Day 499 - Oct 10, 2009

We left the hospital today. Kevin got up this morning and took a shower and felt better so we decided to discharge. It was late afternoon by then, but we got around and went to the hotel.

I don't know how I missed it last night, but when all the lights were on, I realized this one wasn't much better than the first. The room even smelled like cat pee today and I honestly didn't notice that last night.

So I got on the horn and we found yet another hotel and this one is beautiful. It's an Army hotel, but it is only 2 years old so I figured it can't be that disgusting, right? Right. This one is REALLY nice. It doesn't have an oven though, but at least there is a stove top so we can cook some things.

Now we just need to get out and drive around downtown San Antonio to familiarize ourselves with the area. We have been down here before, but only on occasion so I can't just find my way around yet.

And I am really excited to report that Pam (our most favoritest therapist) worked Kevin's arm today and it was about 90% straight for a bit! Since he had Botox, we need to really kick up therapy a notch to make a difference. If Kevin would work his arm even on his own some more it could really help. He does do it often, but I'm going to try to get him to hold it some while watching tv or at times like that.

Oh and if y'all don't mind - can you keep my friend Janet's son in your thoughts for a bit too? He is also here and had surgery yesterday. His name is Matt.

And now I am going to sign off and just lay here and do nothing. Kevin is watching a movie so I may get a few minutes of quiet time...

Day 498 - Oct 9, 2009

The hotel is all taken care of. Thank goodness! I was so worried that we would check out today and have nowhere to go. I believe a Col got involved from Ft Stewart and things just miraculously happened. Matter of fact, I was told to go to any hotel I wanted and it would get covered. So I did. I booked us rooms at a Hawthorne Suites because it is basically an apartment. We got two rooms - Breezy has her own and Kevin and I are sharing a 2 bedroom suite that has a full kitchen. I just can't wait to stuff a turkey or a chicken or something (have y'all figured out that I just LOVE stuffing? LOL). We are all so darn tired of eating out!!

But, we didn't leave the hospital today after all. I had the option of going to the hotel with Kevin, but I just wanted to make sure we had his pain controlled after last night's incident. He did pretty good most of the day, but he was in more pain this evening so I am glad we stayed. I may decide not to discharge us tomorrow too - I need to think about it. I will see how he handles his first shower tomorrow and go from there, I guess.

So here's a photo of Kevin from today. His head is still a little swollen, but he is lookin' good, huh? I just so hope that we don't have to remove that plate!



Look at his trach site! It is gone! Impressive, huh? It looks like they are going to have to fix his one eye because the doc put too much skin there and he intends to do it the same way he did the trach area.

And we decided not to fix the area above his lip on the left side. It is very taut and you can see how it is pulling his lip upward, stretching it quite a bit, but it is a major surgery apparently. The surgeon said he would basically have to cut that whole muscle out and rebuild it. He doesn't suggest it and after hearing that, I agree.

And now I am signing off so that I can finish watching 'Hitch' with Kevin. Will Smith is so awesome, isn't he? He can always make us laugh!

Day 497 - Oct 8, 2009

Well, the drain is in place and things were really good most of the evening. If I would have written this post an hour ago you would have heard how this procedure miraculously fixed Kevin, but a while ago he just started screaming in pain and he was pretty much uncontrollable. He said his ears were making noises inside (told by him touching his ear and saying "ting, ting, ting, ting") and we just couldn't control his pain whatsoever. And you just had to know that his IV chose that moment to quit working so we couldn't even administer IV pain meds. Grrr!

So anyway, I am guessing that the bandage that was wrapped around his head was just too tight. He has not been able to wear anything much on his head for so long due to the pain so the doc took it off and re-bandaged it more loosely than it had been. Between that and the shot in the butt - he is now happily munching on sour skittles and watching a movie.

Matter of fact - here is a photo:



And the surgeon told me earlier that when they cut into Kevin's head today about 200 CCs of bloody fluid streamed all over the bed. That is a whole lot of pressure - once again.

Now hopefully the pain will start receding completely tomorrow. Next we just need that darn bug to go away. The neurosurgeon is discussing starting Kevin on an even stronger antibiotic for MRSA and we will make the final decision on that one tomorrow after he talks to the Infectious Disease docs.

And I guess it's come down to me having to use one of the contacts that I made while in DC. I have been asking to be able to move to a cleaner hotel as this one is so DISGUSTING! They finally scrubbed the carpets a week or two ago (after 3 years) and it now smells so bad like dirty, wet gym socks. It was ok for a couple of days, but it is now back to smelling. Not to mention that if you happen to go barefoot for even a second, your feet turn completely black - and this is after they were scrubbed.

So anyway, our nurse case manager at Ft Stewart told me I could go to a different hotel but there were stipulations and I can't do them because I am not military. My case manager here didn't bother to get back to me today, so I guess I need to call someone to help me out. I cannot take Kevin into such an unclean environment with this drain in his head. I just won't do it.

Ya know...I don't mean to be rude, but I wish these people could go through this just for a week so they would have a real understanding of how they need to really do their job. They are here to help us, but mostly end up causing us more work and way more frustration. We are to be discharged tomorrow and I really don't have anywhere to take Kev yet.

I just know that someone better do something real early in the morning or the shit is gonna hit the fan! Maybe I'll just google our case manager and show up with all our bags at her house tomorrow...wouldn't that be funny?

Day 496 - Oct 7, 2009

Early post tonight...

Ok, there are so many variables that affect any decision I make about Kevin's treatment, but after days of thinking about it and a long discussion with the neurosurgeon today, I decided to keep a conservative approach for at least a few more weeks. Truthfully, it could bite me in the butt, but I still think it's the best choice right now.

Because Kevin can't secrete this fluid back into his system (which is actually a good thing as it's (hopefully) keeping the MRSA localized), we are checking back into the hospital in a couple of hours and tomorrow an external drain will be put into his head. This will enable the infected fluid to drain out of his head and into a bag, hopefully ridding us of the infection within a few weeks. Realistically - it may not work at all, it may work for a few weeks or months and finally - it may miraculously take care of it completely (slim odds on this one). After a day or two we will be going back to a hotel (but not this one as it is just too dirty for me to allow an open drain in) and I will maintain the external drain and bag.

The doctor is hoping it will clear the fluid buildup within two weeks, I am not so sure. Although this has nothing to do with his shunt as it is still working fine for the fluid inside of his skull & plate, we know Kevin's 'glands' (or whatever they are called) in his head were severely burned and that's why they aren't working now outside of his skull. I guess I just don't understand how it's going to clear up if it's really a gland problem and not the infection problem? Oh well, I just hope he's right and I'm wrong.

So if it doesn't work - the plate will become infected and then it's a definite removal. I guess I am just prolonging what is a probable outcome in the hopes that the antibiotics work. Time is seriously going to tell on this one.

I don't know if I will have internet or not over at the hospital this time, but hopefully I will. If not, just know I will catch y'all up as soon as I can.

Day 495 - Oct 6, 2009

I am pretty much going to skip writing tonight. I am just too tired to think so I am just going to hit the hay early.

Before I go though - Janna - I finished reading "The Shack". Very interesting read! In the beginning I just kept thinking "Oh no!", but I remembered you or someone else on here telling me to stick to it so I did. Thanks so much for sending it to me!

And wish us luck tomorrow! We go to see the neurosurgeon in the afternoon...

Day 494 - Oct 5, 2009

Only a day and a half more before we learn what the future holds. I have been just pretending that all is well, but at times it kinda creeps into my head that it can all come crashing down - again.

I just can't imagine having to remove the plate from his head. It will limit the things he does for fun and it's already so limited that it won't leave much of anything.

And I can only hope that we don't lose the Kevin that he has become. Although he is very demanding and tyrannical a lot of the time, he still has moments that he is so much fun to be around and we have a good time. I don't want to lose that person. I worry about us going back to who he was before - the person barely cognitive.

I know that the pressure in your head has a lot to do with function, but maybe having the shunt working correctly will make all the difference this time.

Or maybe we won't even need to take it all out, huh? Oh I so hope that's the way of it! I just want this infection to go away so that we can go home and continue with therapy and just all out getting better!

Day 493 - Oct 4, 2009

Our days are getting somewhat better now that we are managing Kevin's pain a little better. I am trying to take him out at least once a day for short outings, but I also know that he needs rest more than anything.

Today we went over to the family center and spent over an hour there. It's a huge building here at Ft Sam for wounded soldiers and their families to go and hang out and do things - play games, watch tv, eat, rent videos, scrapbook, etc.

We went over today and Kevin just ate and a really nice volunteer sat with us and talked for quite a long time. What was really nice was that she spent time talking to Kevin and not me - something that is rarely done. Most people ignore him completely because he can't talk and although I always try to pull him into the conversations - it rarely works. He so enjoyed the attention!

Other than that, we didn't really do much. We got movies while at the WFSC so Kevin came home and watched a couple of them. Now he is in his room trying to go to sleep and I hope he falls soon. He gets so upset when he can't fall asleep...

Day 492 - Oct 3, 2009

We had a decent day today. We are keeping Kevin medicated before the pain is breaking through instead of waiting for it and then making him suffer for 30 minutes until the pills start working.

So far, so good.

We did run to Wal-Mart today because Kevin told me he wanted to color (took a while for me to figure that one out). So we went and bought coloring books and crayons and the kids and I have been coloring for a couple of hours now. I was amazed because Kevin's book had those word searches and mazes and he zings though the mazes super fast and he is at least trying to do the word searches. He can do the straight across words, but he just can't find the diagonals or backwards. But still - he is trying and that's a great thing.

And before I forget - yes, Kevin is allowed to go anywhere he wants. We also had permission to go on the boat ride and do whatever we wanted last week. For the record, I don't take Kevin unless it's ok'd by the docs (in this type of situation anyway). Sometimes I'm not told that I can't do something and I do it not realizing, but mostly I ask. I think at this point y'all are just going to have to trust that since I am here (and he's my son) - I pretty much know what's best for Kevin. And I know that I may make mistakes, but that's inevitable. My plea would be that I just don't get called on the carpet for making those mistakes as I just can't be perfect - no matter how hard I try .

Which, by the way, brings me to another point. I, more than anybody, know that Kevin will react to how I feel in certain situations. Because I know this - he rarely sees what I am feeling - especially in times of extreme frustration. What y'all see is the place where I can come and vent about what I feel/felt. That's what this blog is really all about. So I come on here, let it all out, and that ends it. But somehow, some people assume that because I lay it all out here, I lay it all out for Kevin to see. That's just not how I work. And I have to admit to always being curious how people "know" I did something without being there?

Just my two cents. But I guess I am just asking that people maybe not jump to conclusions based on the small window that I give people the opportunity to look into our lives through. There is so much more that goes on in our lives that I am just not putting out there.

Oh - and I want to quickly admit that any and all advice is always heard. I do read every comment and I always appreciate the advice we do receive, I just think it would be nice if the advice could be given without accusation as it is sometimes. Know what I mean?

And on that note, I am going to end this post. Please don't anybody take this as me being angry or slamming anyone. I am not. It's just li'l ol' me asking for some slack in a really rotten situation.

Day 491 - Oct 2, 2009

Well, we didn't sleep at all last night as Kevin was in a lot of pain again. The problem is that his head is filling with fluid where he was operated on. It's stretched so large and it is incredibly painful. He pretty much screamed and cried all night long. Luckily we had a doctor's appt this morning and we did end up draining about 60 CCs of fluid today and it just so reminded me of the old days.

And to make matters so much worse...Kevin has tested positive for Staph(sp), or MRSA - whichever you want to call it. I just broke down when the neurosurgeon told me this. It's just so scary.

So I guess we have two options on how to deal with it:

Conservative - where we try antibiotics for a while and wait for a new culture to come back and see if the results were wrong.

Or Aggressive - where we just go in and remove everything. All of it. The putty and the plate. There are so many variables to this one and I really am too tired to get into them all, but Kev would have no skull again and he would have to be infection free for 6 months before having it replaced. I am also not sure where we would be - in Texas or Florida. I really don't want to be in Texas as my dad is just starting his chemo and radiation. But I won't see the neurosurgeons at the VA so I would have to see if the new guy we didn't even go to yet would take us on. There are just so many things to this option...

So we decided to go with conservative for 5 days and then we will probably have to remove everything if things aren't working by then. Wednesday will be the day and it's going to kill me waiting to see what is going to happen.

I just can't imagine having to go backward. Frankly, I'm not sure I have the energy to do this all again and I'm not sure I can keep Kevin from giving up. When we were talking about having to remove it all with the surgeon, Kevin just kept saying "NO!" because he is just as tired as I am. He has just been through so much and I have to ask - when will it end?!

Day 490 - Oct 1, 2009

Kevin is still hurting and he wants me to lay down with him until he falls asleep. The odds are pretty good that I will fall asleep as soon as he does so I wanted to quickly write something just in case.

If I don't, I will come back and write some more.

Day 489 - Sep 30, 2009

We are back at the hotel tonight. Kev is still in a lot of pain, but I feel more comfortable managing it and at least here he can get some sleep. I was so upset last night because they came in at 1am and woke him up just to ask him his pain level and then do an assessment. WHAT?!! He was sleeping - it was zero!

We had a decent stay at the hospital until last night and that was just it for me. The nurse we had was rude and interrupted his sleep numerous times throughout the night - even after I told her to get out. All of that caused him to be overstimulated and he was just screaming intermittently by daybreak.

I should mention that we weren't in the burn ward this time as it was full and I believe that is why we had a problem. The burn ward knows us well and works with us to ensure Kevin is well taken care of.

And now I am heading to bed. We are both just so tired from no sleep last night and I keep nodding off when my fingers stop typing for a minute, lol.

I know I have a bunch of questions/comments to address and I will try to get to them tomorrow night. I am just too tired tonight...

Day 488 - Sep 29, 2009

Things are getting a little better. We are still in the hospital, but the pain is becoming more manageable. The docs think that a staple may have hit a nerve, so they removed a couple from the area where the pain was. He is still hurting, just not as much.

We have reworked his pain medications though, and that could be helping too.

Anyway, we are hoping to go home tomorrow (to the guesthouse), but I need to feel comfortable with his pain level first. We shall see...

And now I am signing off as I am using my phone and I really stink at typing on this thing.

Thanks for keeping us in your thoughts everyone!

Day 487 - Sep 28, 2009

Well, Kevin is back in the hospital. Last night he just started screaming in pain and no matter what we did it couldn't be managed. We did a battery of tests today and so far they haven't found a reason.

We were worried about infection, but there is no evidence whatsoever of any and I can only hope it stays that way. If he does have an infection - everything will have to come out - including the plate in his head. That will take us back to the beginning and I just can't imagine going back to that time.

Anyway, I am writing very early because we are on a floor of the hospital that has no internet so I can't say when I will be back to post.

Breezy will let anyone know if something comes up until I come back over to the guest house to shower tomorrow.

Keep Kevin in your thoughts...

Day 486 - Sep 27, 2009

Well, the boat ride went ok. Kevin was actually very bored and I am glad it was only a 30 minute ride or we probably would have had a problem. It ended up being a nature center type of place and Kevin really didn't want anything to do with it. He handled it well though, he just didn't enjoy himself.

Other than that we didn't do anything else. That's one of the hardest parts of being here - just sitting around in a hotel room for days or weeks on end. It is just so boring.

And on that note I am going to go and watch some tv. There really is just nothing of any importance to say...

Day 485 - Sep 26, 2009

Kevin felt better today. So good, matter of fact, that he wanted to go shopping. So we went to the the PX store and then we went to Wal-mart for a while too. I did make him come back though and take a nap before going to dinner because I didn't want him to over-do it today and end up paying for it tomorrow.

He did really well. BUT - I did end up putting the Fentanyl patch back on him this morning. I know that Fran mentioned in the comments about all of the problems with them, but I hadn't read that first. Truthfully, once it was back on we didn't even need any of the pills so I am hoping that it stays that way. Actually, I'm hoping that once the swelling goes down and the staples are out of his head, that there will be no pain whatsoever.

But in the interim, we have an appt with a new neurosurgeon when we get home (one not associated with the VA hospital) and I want to sit down with him and go over all of these pain meds. I think we need to make some changes with them. We hate having to take medications so if we can eliminate them - all the better.

And tomorrow we are going to some sort of aquarena and we are going to ride on a glass bottomed boat. I have been wanting to get Kevin on a boat so that we can see if he gets sick or not. I know it depends on the boat for the most part, but it's still an unknown so wish us luck.

Day 484 - Sep 25, 2009

I am not going to write much tonight as we didn't really do anything but rest today. We did take Kevin out for a car ride, but we had to cut it short because the roads are too bumpy and it hurt his head.

He is feeling much better though. The docs had never put his fentanyl patch back on (not sure if it was just forgotten or it was purposeful) and so far he is dealing well with just some pain pills. We did give him a different one today (a stronger one) and it was hilarious because he was so doped up he couldn't stop smiling. Breezy and I were making fun of him for over an hour, lol.

Thankfully he opted to not have that kind anymore, so we are going to try to just manage his pain with the percosets. I sure hope it works! And I hope that eventually we don't need any. It would eliminate so many side effect issues.

And now I am signing off to finish watching the second Austin Powers movie with Kevin. I had never seen these movies and Kevin is demanding I watch it with him.

Day 483 - Sep 24, 2009

Wowzers! Y'all wouldn't believe how wonderful Kevin looks!! Here is a photo I took this morning when they removed his head bandage, but first there is one from back in June when we were here for his neck/chin surgery. This will really show you the difference in his head (also, as an FYI, Kevin is still swollen from all of the fluid from his surgery and isn't really that chubby in the face, lol)




And notice that they really didn't cut even one hair on the kid's head? Yep! And believe it or not, he is allowed to shower and wash his hair tomorrow (yikes!). Oh and they used some sort of 'super glue' on his wound vac site so there are no stitches there! Modern medicine, huh?

But what a difference, right? I told both of those docs (neurosurgery and plastics) that they are both simply amazing and I meant it. I am just so impressed and can't believe the changes in Kevin. (and I am very mad at myself for choosing to stay in Tampa for the cranioplasty! I have only myself to blame for Kevin having to go through this 'fix it' surgery on his head!!)

And I realize that you can't see either the trach site or the wound vac site, but they are both phenomenal looking as well! I would have NEVER thought that these things could be fixed so well! I am honestly still shaking my head in wonder.

So anyway, we are out of the hospital and back over at the guest house. I am hoping that Kev gets a good night sleep as you get none while in the hospital and luckily he is already working on it. I can hear him snoring from the next room. So this is my chance to get a little tv in. I hope there is something good on!

Day 482 - Sep 23, 2009

Kevin is slowly starting to feel better. I noticed he's not hitting the pain medication button as frequently, but he is still hitting it pretty often. He just finally fell asleep and I so hope he makes it through the night.

They intend to release us tomorrow and I can only hope that happens as well. It's just impossible to rest here and we can relax so much better over at the hotel.

It will be easier on Breezy too, lol. The poor girl has to do all the running as I didn't leave the hospital at all today. She has been doing laundry, running for all of our meals and doing everything else necessary.

So now I am going to sign off kinda early and try to watch a video or something. I will probably fall asleep as soon as I put it in, but I'd still like to give it a shot...

And thanks for all the well wishes today, too!

Quick Surgery Update

Kevin did really well in surgery. His head is bandaged right now, but the neurosurgeon told me that it looks fantastic. The plastics guy did an AMAZING job on the wound vac - you can't even tell it was ever there and he said the trach site looks great too, but it's covered so I can't say for sure. He also had a BOTOX treatment in his arm and only time and therapy will tell on that.

I will update more tonight as Kev is in a lot of pain right now and I need to tend to him.

Day 481 - Sep 22, 2009

Well, we are back in the hospital tonight. We had to be be here at 2pm to begin the admitting process and all has went well so far. This time the doc put the order in before we got here that I stay here with Kevin all night so here I am. I have my little cot made up and our favorite therapist Pam brought me some of that egg crate foam stuff to add a little cushion to this hard thing.

And speaking of Pam...Kevin and I worked on him being able to say "HI PAM" when he saw her and he did it today. Pam comes out more like Pan, but it's the attempt that counts, right?. He sure loves her lots and I have a feeling it's mutual ;-)

So tomorrow the surgery is scheduled for 8am. I will try to come on here and post an update as soon as I can. They are planning to revise his cranioplasty and graft his trach site and the wound vac in his lower abdomen area. Oh - and he will have Botox in his arm again.

It looks like we will be coming back because there are a couple of more spots that need done, but that's ok.

Oh - and I forgot to tell you that at this point they don't plan to cut Kevin's hair while performing the surgery! Have you ever heard of anything like that?! They are just going to cut along the same scar, where the hair doesn't grow, and then pull the flap down - hair and all! Amazing, huh? The doc was blunt and told Kevin that he really looks better with hair and we both appreciated his honesty as Kevin's head is just covered in scars. The funny thing is that we refrained from getting his hair cut at all in the past month or so because we thought it was going to be shaved so today I had to take Kevin for a haircut. It was just so long!

And now I am going to sign off and watch the rest of Starsky and Hutch with Kevin. Wish us luck tomorrow...

Day 480 - Sep 21, 2009

Kevin's surgery has been postponed until Wed morning. I am fine with that as it gave us a day to kind of unwind and get over how bad yesterday was. Kevin ended up sleeping until 11:30 or so while I got up early and started making the endless amount of phone calls that I needed to make today. We then just went over to the hospital to the burn clinic for an appt and then we had lunch and just came back to the hotel and we both took naps. I sure wish naps were possible in Florida, but our schedule there is just too hectic.

And I don't know if I mentioned it or not, but I opted to stay at Powless Guest House this time around as they just can't get the temperature regulated at the Fisher Houses here. It's not as nice (or as clean), for sure, but at least it's not 91 or 55 degrees in our room.

So anyway, I am very hopeful for this surgery - especially about Kevin's head. The neurosurgeon told me today that he believes he can alleviate quite a bit of (if not all) of Kevin's pain. Up until his cranioplasty - Kevin had had no real pain. He rarely needed any pain meds, but now we have both the pain patch and he is also taking many pain pills a day too. The doc said something about the nerve endings attaching to the scar tissue and that's what is probably causing all of the problems. I so hope so! It would be so great if Kevin didn't need the pain meds anymore!!

Oh and Kevin got weighed today. This is just so exciting! Not because he got weighed, but because he was ABLE to be weighed! Last time we tried, he wasn't putting any weight on his right leg and it was coming up 49 pounds. This time, he did put weight on it and he weighs...are you ready for this...a full 160 pounds!!!!

Kevin's eyes about bugged out of his face! Apparently he has never weighed this much and now he is determined to diet (although I doubt he will remember because he has eaten like a horse tonight). I think it will make a difference when we get the trike as Kevin will surely love that and it will burn some calories. Although the swimming also burns them, but who knows.

If you guys remember - Kevin weighed 112 pounds when we left here and went to Florida. Unbelievable, huh?

So now I am going to end with a few pictures from the last couple of weeks. This first one is Kevin racing Anthony across the pool. Kevin is the one completely submerged.



This one is of Kev, Breezy, Anthony and Chris and JT (the Marine and his mom). This was taken during one of the few good moments at the resort on Friday.



Here is Kevin 'hiding' in a cabinet we have for all of the pool toys and tools. He was playing hide and seek, I guess. LOL.



And this last one is of Kevin and Anthony, just sitting outside talking.

Day 479 - Sep 20, 2009

Another doozy of a day. It really all started last night when Kevin was projectile vomiting all over 3 different bedrooms. He started getting sick right after I signed off last night and he was just covered each time he threw up and I spent the whole night getting him in and out of the shower and scrubbing rooms down and doing laundry. I felt so bad for him and I just kept thinking that I honestly wouldn't want to spend the next 60 years being sick like this all the time. He was just crying and vomiting all night long.

(And thanks Mom for going to our house today and finishing all of the laundry and cleaning! Love you!)

He did eventually fall asleep in my room though and he made it somewhat through the night (ok - a few hours anyway) giving me time to finally do some of the packing. I can be honest, I didn't really sleep at all. I am just so exhausted.

So anyway, Kevin did really well on the flight, but then we got to San Antonio and all hell broke loose. The Army had rented us a car and even reserved it in my name. But they forgot to add a line on my travel orders stating that a car rental is included (even though the itinerary from the Army has my reservations), and the car company told me I had to pay for it. No problem as I have enough in the bank to cover it using my debit card but apparently you can't rent a vehicle at an airport with a debit card unless you have return flight plans. Obviously, we don't know when we are going home so it was a 'no can do'. By the time I went to various rental car companies and learned the same thing, Kevin was so overstimulated and was trying to just leave on his own. He was angry and frustrated - and so was I.

It downright pisses me off that Ft Stewart keeps making messes that both Kevin and I have to suffer through. How much is enough, I ask? It has been this way since the beginning with them and I am so tired of it. It would be one thing if Kevin were a healthy 21 year old soldier, but he's not! Any sort of stress causes him to go crazy! Grrr...

So after this, I went and made plans on a shuttle bus and it was supposed to be right there and we waited...and waited...and waited. I finally went back in and got my money back and put us all into a cab.

In the interim, Breezy and I remembered that I was able to easily rent a car the first time we came back so I had the cabbie go off the airport property where the rules are less stringent. It cost me $20 to drive one flippin' mile in a cab because he had to keep Kevin in the car while I found out if I could get a car or not. But I was able to - thank goodness!

So now I got a car from a different company and I'm sure I'm going to have to fight with the Army to get it reimbursed, but that will be tomorrow's fight.

And since Kevin was so overstimulated throughout all of this extra crap, he has been utterly unbearable all night long. I had hoped to be able to pick up some groceries, but we are staying in the hotel while he lays in his room and is just screaming on and off in frustration. I sure hope there's no one in the next room.

And to be honest - I wish I could just scream in frustration too!

And now you all are getting an idea of the crap I have had to deal with for the last 16 months. It is pretty much always like this - It seems that I am always fighting with someone. I swear, if it weren't for Mary (our wonderful FRC) I would be a total basketcase by now.

So anyway, this is why I choose to focus on the positives. If I really let all of this kind of crap pull me down, we would have never gotten anywhere. Kevin needs us to stay positive - so that's what we're gonna do!

Somehow, anyway...

Day 478 - Sep 19, 2009

Well unfortunately Kevin really couldn't handle his mini vacation. He wanted to go home as soon as we got up this morning, so that's pretty much what we did. It's so hard to understand why he does so well sometimes and so poorly other times. Like his Purple Heart Ceremony - who would've ever thought that he could withstand all of that stimulation and yet this was not even as active as that and he wanted to be in his room the whole time. Who knows...I just know it's very difficult to always have to sit in the room with him, missing out on all of the fun. For example - this group of guys got all of us moms massages and I couldn't even get one. It was such a bummer.

But it is what it is, I guess. And I am fully aware that it could have been worse.

I learned yesterday of another mother that was in DC last week testifying before Congress of the problems with some of the staff at the VA. Her son was also on the same ward so I guess I'm not the only one that has seen the problems. Maybe the folks that need to will start opening their eyes to what is really going on with a few members of their staff.

So other than that, nothing happened today. Anthony is going home in the morning and the three of us are heading to Texas in the afternoon. And now I am going to sign off and try to get everything packed in between all the "moms" that are screamed tonight. He's watching a movie right now so I might have a chance...

Day 477 - Sep 18, 2009

Today has been an exhausting day. First the Army purchased airline tickets with a layover for us on Sunday. Kevin can in no way handle a layover - we're lucky he can handle the flight. I was just aggravated because I even reminded our nurse case manager yesterday that it had to be a straight through flight and he was like "yeah, yeah, I already know" and then what happens? They do it anyway. The worst part was that they weren't going to change them because they claimed it would cost too much and I told them that I really don't care. We are not going on a flight that is made longer just because someone didn't do their job and read the notes. So the phone calls kept going back and forth for hours to get this all straightened out and this is just part of what I said in DC...

Why does everything always have to be such a struggle? Why must I have to get into fights with everyone just to take care of my son? The Army knows how wounded he is, so why don't they just do what's right for one of their own? And why do they have to consistently make my job even harder? It's just so darn frustrating.

So then we did come to the hotel at the beach, but so far Kevin's not really enjoying himself. It is very busy here and he isn't handling all of the stimulation very well, so we have been in our room a lot today. I am hoping tomorrow that he will go out fishing with the guys though. He always loved to fish and there are some really nice people here to take him out. Anthony also came and he will be going too so Kev should have a good time.

So now I am going to put some of the links to some of the articles that a few of you have posted about in your comments and then I am going to bed. I believe there will be more as time goes by and I read where somebody said it had been taped so maybe we will get to see it.

Oh and I want to thank Rene' and MOAA and the USNI for inviting me to speak. It was an experience I will never forget.

The AP Article

Stars & Stripes

Air Force Times

The USNI site

A video at MOAA on YouTube

Day 476 - Sep 17, 2009

So, as expected, quite a few people are angry at me at the VA hospital. Word has gotten back to me and I think it's sad that instead of seeing that these things all happened to us, they just assume I am out to make trouble and that I am attacking them personally.

In no way was this a personal issue - this is about the many things that happened to us while inpatient and out. And let's be frank - there were a lot of good things that happened too, but those things don't need fixed (obviously) while other things do.

I can tell you that I will never think it's ok that a therapist rarely shows up for her appointments. I will never think it's ok when a neurosurgeon won't do his job because he doesn't have the time to - leaving your loved one in a near comatose state for two weeks. I will never think it's ok for 3 nurses to stand over a gurney with your son on it in the hallway arguing because they don't want to take their patient down to radiology. Do you honestly think he couldn't hear what an imposition he was? I know I heard it and that's when I took him down myself - with the help of one of the great nurses there.

I think what made all the tens of issues even worse was that when you did talk to the supervisors about any of the problems you are always told that either they have the best nurses on their team or that this person has never had a complaint against them (when we all know of another parent/spouse that has complained about them).

And I'm not saying that everyone is a problem - believe me. There were some wonderful nurses, doctors, and therapists. But let's be frank - the select few that are the 'bad ones' ruin it for the good ones. And if you happen to be one of the ones that we never had an issue with - then the whole message doesn't apply to you.

The solution needs to be that the supervisors listen to what people say instead of just defending their team member without looking into issues and then taking appropriate action. If that had happened, I probably wouldn't have had anything to say.

But instead, the same person that left your son alone when he wasn't allowed to be (with his bed as high as it could be off the floor) is there again in a few days. The same person that nastily told your son "Grow up and be the man that you are" when he was barely out of his vegetative state is still employed there (gee - I just realized those last two comments were the same person) and again - a neurosurgeon that inserts a shunt into your son's head and then doesn't know how to work the damn thing was never really dealt with. These things really just aren't acceptable to me.

So I guess my message to all of the people at the VA is this:

If these things happened to your son/daughter/mother/father/spouse etc - would you keep your mouth shut? Would you not try to fix it?

Day 475 - Sep 16, 2009

Kevin and Breezy are having a good time without me. I am so glad about that because the last time he cried the whole time I wasn't there. I will admit that it has been a little rough for me being away, but I also got a whole night's UNINTERRUPTED sleep last night and it felt so good!

So today went very well (I think). I don't really remember what I said, but I did get a standing ovation so I must have said something right, lol. Actually - seriously - I think it's because I cried at the end of my speech. I did. Most of you know by now that I just don't cry very often, but today I did. And I think that's why people clapped - because they know that I am not up there bullshitting them - what I said I meant and what I said was true.

I do remember speaking about how this has been such a horrible experience and it really has been made worse because of the lack of care and information from both the VA and the Army. I can only hope that someone heard me and the other panelists and changes are made - not just for us - but for all of the wounded and their families.

And I did meet a lot of wonderful people and it was so nice to sit at dinner with some of the others that have a loved one with a TBI and listen to their stories. Sometimes it's hard not really having anyone to talk to that understands what it's really like. But today I did and I learned a lot of things both politically and personally. Things that other families have had to deal with and places they have gotten help from.

If nothing else comes out of this, at least I will walk away with some information - most of it is too late to help - but still...I know more today than I did yesterday.

Day 474 - Sep 15, 2009

Kevin could have cared less that I left today. Matter of fact, he and Breezy were joking about having a party at the house - just like they used to do. I so wish that they really were planning a party (and I am probably the only parent to say something like that, lol).

Seriously though - Breezy said he is already asleep and she hopes he sleeps through the night. I hope so for her sake too.

I am getting a little nervous. The room is HUGE where this will be held and we aren't technically supposed to write a speech (even though I did) - we are just supposed to speak like normal. I am planning to take the 'speech' up with me and glance at it to keep the necessary points flowing.

Wish me luck tomorrow And now I am actually going to bed. And it's only 10:38!!!!!

PS - Michelle - Kevin is having his head fixed (among other things). He hates that it is so indented and has been waiting months for it to look normal. I believe his trach site will also be fixed, and a few other little spots.

Day 473 - Sep 14, 2009

We had some really exciting things happen today. First, I had Kevin go and purchase bananas by himself today. I did go into Wal-mart with him, but I made him go find them (which he couldn't do so he came back to me and I found them for him and handed him some ripe ones as they were all the way at the top). I did have him go up to the register, wait in line and pay by himself though. You should have seen how proud of himself he was. I could kick myself for not taking a picture, but I just didn't think of it, darnit!

And...get this...Kevin went to therapy #3 with his aide today!!!! Yes - he allowed her to drive him and I got to stay home. I couldn't believe that he did it! When we were eating lunch I just made a joke about needing to pack and that Kevin should go with Parshall and he said 'ok'. I about fell through the floor.

I have to be honest and say that I thought he would change his mind before he had to leave, but he didn't. They jumped in the car and off they went. I know that Parshall was so excited, but it didn't even compare to what I felt. I can only hope that he will continue to allow her to take him.

Oh - and Maxim found a young guy to come and play video games with him. Once we get back from Texas we will have him start coming 2 days a week. For now I am opting to keep Parshall because Kevin has finally clicked with her. I don't want to just pull her out if she is now able to take him to therapy, kwim? And who knows if he will like this guy. We'll see, I guess.

And I talked to my friend Chris today (the Marine's mom) and she called to tell me about a weekend of 'fun and relaxation' for a few wounded warriors and their families. I have decide to take Kevin and Breezy (and Anthony too) as it is this Friday and Saturday. It's all expenses paid at The Sheraton in Clearwater so it's not far away and there will be a snook tournament (I am assuming it is a fish of some sorts). I know Kevin has wanted to go fishing for weeks now so he will really enjoy it. Personally, I think we will all enjoy it. Let's hope so anyway, lol.

And in case you missed my comment earlier - we are 'on' for the surgery now. YAY! I can't begin to tell you how worried I was about it not happening. But - it's back on so we are heading to Texas on Sunday. Kevin will be admitted to the hospital on Monday for surgery on Tuesday. He is just so excited!

And now I need to get things packed for my trip to DC. I am really excited to get the chance to speak and I am even planning to get in a little sightseeing if possible. Although I have been 'through' DC, I have never actually been there.

Here's hoping for a safe and uneventful flight...

Day 472 - Sep 13, 2009

A couple of days ago (and again today) someone posted a comment about us needing to have a schedule to get Kevin to sleep at night, in turn allowing myself to sleep. I wanted to post a response to it, but knew it would be lengthy so I just never got to it - until tonight.

Patricia pretty much rounded it all up in her comment:

I want to address the one comment about structure. More for clarification, than anything. I understand, in theory, that is what many would think. Set the day as though there are jobs, have a schedule. However, in dealing with TBI, and to the extent with which Kevin has been injured, our real world solutions often do not work. When the brain is injured, and memory loss occurs, that means that everything that once was habit or cycle of life, has been erased. Sleep is erratic because the medication often changes personality and therefore changes the routine. Just when one thinks they have a routine down pat, the slightest occurrence can trigger a change of attitude in the TBI patient. It is like a game of Matching Pictures, but in this case as much as you concentrate on the matching set, you turn it over and it has changed. Although structure is definitely suggested, in textbook references, it is also advised that the caretaker must be prepared for these changes, and adjust accordingly. Which is what Lesley and Breezy have done. Remarkably well. Especially since neither are registered surgeons trained in the recover of a TBI patient. It is a daily learning experience, and one , which quite frankly, can scare the crap out of even the most qualified.

Every single night Kevin goes into his room at a normal hour (9-10pm mostly) to go to sleep. At this time I have to take an Xbox controller and block the light shining off of the brand name on his tv which glows. I then have to take a DVD case and put it in front of the digital box so that he can't see the light from the clock. I take all 8 throw pillows off of his bed and organize them 'just so' on his floor and we start all the kisses and hugs and 'I love you moms' until Kevin feels suitably ready to sleep. I close the door and I take a blanket and block all the light that could shine under his door so that his room is utterly and completely black. Within 2 minutes...'MOM!' and so it continues every minute or two for sometimes hours. In the space of time that I typed the last 3 sentences, I have gotten up six times.

Kevin cannot see any light from the living room and he can hear nothing. I rarely watch TV so I sit here in total silence and type the blog. Noise and light are definitely not the issue.

As for him feeling like he has a job during the day so he can sleep at night - I guess it's best for me to say that he does have a job M-F. We drive down and back to therapy at least twice a day - sometimes 3 times a day. Which means we get up at 9, shower, eat a little breakfast and head out the door for therapy number 1. We come back, he rests and then we drive the 15 mile round-trip journey to therapy again and then we come home and either rest, run an errand or do whatever is necessary. Now that he is doing better, we have been going three times a day and we are mostly running from 9-4ish every day. Pretty much a full time job, I would say.

Kevin really doesn't sleep much period. He does 'rest' often throughout the day, but he rarely sleeps. He also rarely sleeps at night, sometimes not at all, often times about 2-4 hours, and once in a while he will sleep a whole day or a whole night. There is absolutely no way to know which one is going to be the way it is on which day.

I really wish there was a way to have some sort of structure or schedule, but it's just not the way it is with a TBI patient. And it's all the harder because I am a control freak and a planner and I have absolutely no control over how our day is going to go. I really can't 'plan' anything because you just never know if things will work out.

It's hard - it really is. But this is just the way life is for us now and none of us have any choice but to adjust to it.

Now it is 12:59 and I invite y'all to see what time this post was posted (it lists the time I started typing). That will show you how much time I just spent getting up with Kevin as it really would have only taken about 15-20 minutes to just sit down and type this all out with no interruptions.

And for your information - he is still wide awake in his room. Oh - and it doesn't matter if I am sleeping. If I don't hear him call my name, he just calls me on the phone (you should see how many calls I get from Kevin in a 24 hour period. Friday I left him with the aide and I was making stuffing in the kitchen and he left me 5 voicemails. He was - at the most - 20 feet away).

So anyway, this is why I don't sleep much. I get awakened constantly and I just can't fall back to sleep all that easily. I just find it easier all around to stay up until he does go to sleep. And as soon as I hear him snoring - I RUN to my bed!

I sure hope it's soon...

Day 471 - Sep 12, 2009

Today was a pretty lazy day. Kevin and I lay around all morning and then we grabbed Anthony and went to the mall. Kevin did a little bit of shopping with Anthony and I just walked around by myself.

We went to dinner after that and I could see that Kevin was starting to not feel well so he and I left the restaurant earlier than Breezy and Anthony and went home. He ended up getting really sick. It was a rough ride because it was raining and the windshield wipers sometimes make him sick anyway and they only compounded the issue tonight. The doctor had increased his nausea medication a few weeks ago and he hasn't thrown up since then (I don't think so anyway), but he made up for it tonight. Once he vomited though - he felt completely better.

And other than that - we did nothing. He is sound asleep right now and I am going to sign off and head upstairs and scrapbook for a little while.

Day 470 - Sep 11, 2009

Oh Holee - what a fabulous idea! For those that don't read the comments, Holee suggested that Kevin maybe help an organization by doing some volunteer work as a way to have a reason to get out of bed in the mornings. I know that Holee felt it would be tough love in forcing him to do something like that, but I personally think that Kevin would enjoy it and it wouldn't be too hard to talk him into going.

I can't say that I will force him to go with the aide though. That is just going to take some time and maybe once they find him someone he has things in common with he just may want to go places with them on his own. (besides this - the one he has now isn't allowed to take him anywhere. I just found this out yesterday)

Part of me not forcing him to go with the aide is that Kevin has definite issues in public and you have to be well versed in seeing the signs before any type of major meltdown or tantrum (for lack of a better word) occurs.

The one and only time that he did go with his aide to a movie, the guy listened to his music in the car and talked to Kevin the whole way there. Kevin can't handle all that stimulation and they were only at the movie ten minutes before they had to leave. That could be part of what ruined it for anyone to take Kevin anywhere and it's possible that it's going to be a while before he goes again.

So anyway, I do like that idea and I will have to look into some organizations that may want Kevin's kind of help.

And before I forget - Jenna - you asked about the cookbooks...I have no idea if there are any left, but call Tracy at 724-526-5959 for info.

So today my nephew Anthony came down for a week or so. He is here partly to stay and help Breezy with Kevin while I am in DC next week. Kevin was so psyched that he was up and showered before 9am even though Anthony wasn't arriving until 5pm.

And I did talk to the doctor today about the surgery and I am very disappointed to still not have an answer. I think it's ridiculous that it's been close to two weeks since it came to light that they didn't intend to fix his head on this trip and the doc was supposedly finding out if the neurosurgery team could still do the surgery the week after next and we still don't have an answer. Honestly - this is just so aggravating.

What am I supposed to do, I ask? Tell him Monday that the very thing he has been excited about isn't happening as planned and then just hop on a plane Tuesday and leave Breezy to deal with the devastation he is going to feel? Hell no - that is not going to happen.

I have half a notion to just tell him tomorrow that the surgery is off and that way he has time to deal with it before I have to leave. Then, if by some small miracle, they do decide they can do the surgery, it will only be good news.

I just really hate to let him down so drastically because there is just this small chance that he won't ever need to know that all of this has been going on and that there is a possibility that the surgery is a no-go.

What to do...what to do...

Day 469 - Sep 10, 2009

I really think it's great that everyone has discussed the dog as a companion (I had even gotten an email from Rene - the person that invited me to DC - discussing this very thing earlier), but that is the ONE AND ONLY THING that I will not do for my kids.

I hate dogs. Sorry. But there it is. I know I'm strange, but that's just the way I am.

I can't even begin to tell you that when I see a dog on tv and a person is kissing it, I just about throw up - literally.

To be honest, I am not much of an animal person all around, but I have agreed to a cat. We were trying to wait until after Project Victory as we won't be here much, but instead I decided to use it as part of the 'make up for it plan' if the surgery doesn't happen as intended - meaning that if we don't go to Texas next week to have his head repaired, we will go get a cat then.

Truthfully, I can't even believe I am doing the cat thing as I am already overtaxed as it is, but I know it will be best for the kids. BUT - they are going to have to take care of it. I have more than enough on my plate taking care of Kevin.

So anyway, thanks again for all of the dog comments and I know that everyone means well (and I also know that there is no possible way anyone could know about my loathing of dogs), but that is SOOOOOO not gonna happen.

And changing the subject - oddly enough Maxim called me today to see how the aide was doing with Kevin. I was honest and they did tell me that they just don't have anyone that fits the bill yet, but they are trying really hard. They are going to start to phase out the current one though and wouldn't you know that Kevin had a blast with her today? They went for a walk together and he was joking with her all day. I swear he does this stuff just so I don't know if I'm coming or going, lol.

And I do agree with you Miss Em about the possible trust issues. It can't be easy being partly at the mercy of someone else and with everything that has happened to him it would be hard to trust anyone.

And Bonnie - we actually do leave Kevin with her more and more often. He just refuses to come out of his room when we aren't here. I thought it would get better over time, but it hasn't.

Amy Grace - I am very sorry to hear about your Mom. I can't imagine how hard that must have been for you, but I am glad that you at least could work out some sort of system that enabled you to get some rest. So far, we just haven't found what works. Kevin had me up until 7am just this morning and I had to get back up at 10:30 because he wouldn't go to therapy with Breezy. This is normal for me as some nights I just don't get any sleep at all and most are under 3 hours (if it's not Kevin it's my phone ringing).

At this point, I don't think he does realize that I have basic needs too and I sincerely hope that this part of him comes back to us. We have been trying to 'teach' him that things don't always have to be about him, but he's just not catching on yet.

And Kevin did get into the pool for over an hour this evening. Usually he gets tired really fast, but not today. He is just such a strong swimmer and I discussed the Special Olympics with him today. He wasn't all that receptive, but he didn't slam the idea out of the water (pun intended, lol) either. Now I just need to remember where I heard about that...

Day 468 - Sep 9, 2009

Kevin was in a great mood most of the day. He did really well in therapy - even riding the stationary bike for 14 minutes and doing the steps a long time as well.

He had speech too and the therapist said that Kevin is able to concentrate for longer periods of time and that is just great. I can't remember what words I told you about before, but he is also saying banana and watermelon now.

But this evening Kevin's mood turned sour. No clue why, it just did. I caught him looking in the mirror at himself and I wonder if that might be it, but I can't say for sure.

Hopefully he wakes up in a better mood tomorrow.

I am a little concerned about the aide that has been here. She is really nice, don't get me wrong, but Kevin just isn't accepting someone being in the house with him. I don't think it's personal, but I think I might have to call Maxim and talk to them and see if there is anyone else. I just don't know though. This is the 4th aide and I just don't know if it's going to make a difference to have a different person come in. He really seems to resent having her here, but he resented 2 of the other 3 (the other one we really liked, but she just never showed up one day). The sad part is that he will barely allow her to do anything for him. He still screams "mom' all day and if she tries to take care of whatever it is, he won't allow her - no matter how busy I am. And it was one of our goals to have the aide take him to some of his therapy appointments giving me some free time, but he absolutely refuses to go anywhere with her. Flat out refuses.

So my question of the day would be - do I bother trying someone else or just go with what we have? I just don't know if it's her or if it really is just having someone here period.

And I know the company has been trying to find someone that would also be more the companion that we have all been discussing, but apparently they don't have anyone that fits the bill or they would have called by now.

I guess I'll give it some thought throughout tomorrow and Friday and decide by the end of the weekend.

And now I really need to get to bed - or try to anyway.

Day 467 - Sep 8, 2009

We had a really good day today. Breezy took Kevin to his therapies and I made a ton of phone calls and got a bunch of stuff done. It was just a really productive day.

And Kevin and I whaled through 2 bags of popcorn while watching The Fast and the Furious tonight. Man, that kid can eat, lol.

I did put the GPS tracker package onto Kevin's phone today. I'm not sure I'm going to keep it though as it only narrows it down to a 2 mile radius. Every time I checked his whereabouts today it always showed him about 2 miles or so away and he was always in the next room. I just don't think it's going to help much. I will keep it though for a couple of weeks as the first 30 days are free (but of course the data plan isn't).

And now I am just going to answer a few questions. I am tired so I'm not going to do too many tonight.

Cathy M - you had asked if there was anything new on Project Victory and the answer is "No, not yet". It's on the back burner for me until we get this surgery done (?). I am looking at the beginning of the year for us to go - after all of the holidays are over.

Sgt Social Worker - you asked about what I think Kevin needs from a companion and I would say friendship (and all it entails). Someone to take him to a ballgame. Someone to sit around and watch movies/tv with him. Someone to play Xbox with him - even when they aren't here. Someone that will get in the pool and race him across. Someone that will go shopping with him. Just someone that will be there for him. Someone that will make him laugh and make him feel like more than just me, Breezy and my family care about him.

Barbara B - that is so sad that your mother didn't get to continue her PT. I really just don't understand things like that. Like with our old occupational therapist - why would you just not show up all the time? Don't these people realize how devastating it is to lose the use of an arm/leg? Grrr...

Jen - I have already thought about calling the police both times Kevin has wandered off/wanted to wander off. It's not a decision I can make lightly as there are so many ramifications. Just the feelings of betrayal that Kevin could feel could do irreparable damage to our relationship. I can't say he'll feel that, but I can't say he won't either.

If things continue on this path, who knows what I may end up doing. I just wanted to let you know that it is a thought and thanks for suggesting it.

Rhonda - I wish your son the best of luck in the Army. Kevin loved being Airborne! Matter or fact, we just watched the video tonight that we purchased of his jump schooling.

Lisa D in Cali - the look on Breezy's face in that photo kills me too. That was just such a rough time - the not knowing if Kevin would ever even know who we were...

Jodi - I hope y'all had a shot of Jack Daniels for Andrew's birthday. I sure wish things had been different.

Kristen M - I was just thinking today how much I miss all of you girls at work. I sure wish it were possible to talk to you guys a little more than I do, but just know that I love you all and miss the camaraderie of our little room in the corner so much. Tell everyone (and Travis too) 'hello'! And personally - I think you should all take the 15th-17th off and come to DC and visit me, lol.

Ok - that's it for me tonight.

Day 466 - Sep 7, 2009

I hope everyone had a great Labor Day! We all just cooked out and swam pretty much all day. Kevin got into the pool today and we were having 'races' across the pool. Personally I don't think it's right that someone with only one arm and one leg that doesn't work all that well can still outswim me across the pool, lol. Darnit!

We had a lot of fun though and Kevin really was swimming hard. I was so pleased to see him actually using both legs for kicking today as he hasn't done that up until now. The pool really is making such a difference to him.

Now I am going to take you on a little tour of the first few months. The photos will start at maybe 2 months out? I'm not sure as they aren't dated, but I know he was unconscious for about 6 weeks and we left Texas at 3 months post injury so I am just guessing at the 2 to 3 month mark. Also, as an FYI - the yellow liquid in Kevin's eyes are drops that the ophthalmologist used. As you can see, his lips had already grown back and the tip of his nose was healing (it had been pretty much burnt off too).

Here are the first few photos:





And for those of you that remember the day that Kevin grabbed my phone out of my hand and put it up to his ear...here are some pics. Up until then Kevin hadn't really acknowledged us or anything much around him. Pam? Remember this? Pam (our favorite physical therapist) was there with us and was just as shocked as we were.




This one was taken right after we got here to Florida (somewhere around the first of Sept of last year).



These next couple were taken on Oct 18 or 19. I hadn't taken any from the last one until this day for some reason. You can already see a major difference - both mentally and physically. And notice his head is starting to sink in because the shunt is starting to work - finally!




And the rest, as they say, is history. If you are new to the blog, you can go back to last Oct and begin to see photos from then.

Day 465 - Sep 6, 2009

Today Breezy and I took my dad to a Rays game for his very late Father's Day gift. We had a good time, but I was very disappointed in the 'handicap' seats that Ticketmaster sold me. They were definitely not handicap accessible seats at all. It was a lot of running around and I am just so glad that we didn't take Kevin to it. Kevin had no desire to go (until last night, of course), but at least I learned the lay of the land at Tropicana Field before taking Kev - which I hope to do soon.

Kevin, in the meantime, stayed home with my sister and my mom. My sister was actually babysitting too and Kevin had a blast with all of the kids. Here are some photos:

This is Kevin sitting on my nephew, Michael:



This one is Kevin carrying Michael:



Here is Kevin's scary face:



And this is of the kids running from the scary face:



They all had such a blast with each other. Kevin stayed out of his room all day and believe it or not - is still sitting here in the living room watching TV while I am writing the blog.

And I am just going to end with some more photos from the last few days that I just never got around to uploading. Kevin slept fine with no issues last night so I am just going to pretend that things are fine for tonight.

Here's Kevin pigging out on a cupcake:



This one is of Kevin playing XBox with his new controller:



Here's Kevin just standing under the waterfall:



This one is of the kids playing ball (great therapy - Thanks Moe!) in the pool:



And lastly, here is Kev enjoying the jets in the pool. He can't be in hot water, so we opted to just have the jets in the normal pool - something the pool guy suggested. It was a great idea because it does make a difference to his contracted muscles.



Tomorrow Kevin wants me to show everyone photos of what he looked like in the beginning. Maybe 2 months post injury. It will be shocking to everyone as these are the photos I would not post until Kevin gave me permission. You will see what his head really looked like and what his burns were like on his face. It will be shocking and outright sad. It's also something that you may want to look at before allowing children to see. These images will be very graphic.

I am mentioning this tonight so that you have time to decide if you want to look at the photos yourself. This way - if you don't want to - just don't read tomorrow night or the next morning.

Day 464 - Sep 5, 2009

Last night ended up being rough. Kevin got mad at me at about 4:30 this morning because I told him he needed to go to sleep and he decided he was leaving. He got dressed and was trying to push past both Breezy and I at whichever door we were guarding. He was screaming at the top of his lungs and trying to shove us around. This went on for probably about 20 minutes and he finally gave in and went back to his room - and promptly went to sleep.

At this point I realized that I couldn't trust him so I stayed awake until about 9am when I drifted off on the couch. I am a light sleeper so I knew I'd hear him walking if he came out of his room anyway.

And it looks like this is how I will be spending my nights until something gets figured out. I am thinking about losing our daytime help and having the person coming only at night so that I can sleep, but that pretty much puts me back to where I was before - exhausted from running all day. Sure it sounds normal to work all day and sleep all night, but Kevin is a HUGE amount of work. And so is our schedule.

I just need to talk to some people on Tuesday and look at all of the options. I can say this - something definitely needs done. There is just no way I can stay awake 24 hours a day.

Day 463 - Sep 4, 2009

We didn't hear anything about the surgery today, which is a real bummer. I sure hope this doesn't keep going for days.

But I do have some really fantastic news. Kevin just called me into his room and showed me how he is able to move (and somewhat control) his right arm. There is absolutely no movement or feeling in the hand, but he is moving his shoulder and elbow in a specific way most of the time. This could just be the beginning. His leg happened exactly like this. He is just so excited and you can't even begin to know how that makes me feel. I just about cried.

I don't know if I mentioned it, but just last week his therapist told me that we lost the window of opportunity to have function back in that arm and at the very best we can expect maybe 10-15% of his ability to move it come back. I was so disappointed and I really do believe it was due to lack of therapy at the VA - especially after we had Botox the first time. That was when the therapist needed to kick it up a notch and then was when she pretty much quit coming altogether. It's just so sad - and aggravating.

BUT, Kevin is moving it and if we can keep working it who knows. Maybe more will come back than what we expect. I know none of us ever expected him to be able to walk. Or even wake up for that matter!

Go Kevin! Go Kevin!

(oh and Jessica - Breezy already put her resume in for that job last week one day. She even called them the next day to make sure they got her resume, but she still hasn't heard anything. We hoped because she had her clearances it might give her an 'in' so to speak. Thanks though! And how are you feeling?)

Day 462 - Sep 3, 2009

We went today and ordered Kevin's bike. I guess it's going to be more difficult with him being active-duty to get the purchase approved so it may end up taking months instead of days. I was told if he was a vet it would just be approved near automatically. That's a real bummer. I guess we can just keep our fingers crossed that someone sees the need and approves it on the first try.

Kevin was having a blast riding it again today though. The brake was only working on one side so every time he hit the brakes, he would slide in broadside and he thought that was hilarious.

One of the therapists from the VA met us there to make sure Kevin was safe on it and both her and the owner were surprised at his daredevil attitude. I asked them what they expected from someone who jumps out of airplanes, lol? We were all surprised to see how well he was driving though. You wouldn't know that he had any vision loss from seeing him take the turns and steer the way he did this afternoon.

And I didn't hear anything about the surgery today. I told them I needed to hear something by the weekend, so hopefully tomorrow. I just need time to prepare Kevin for the surgery not happening and I can't have him being told days before we should be leaving, ya know?

Man...I sure hope it is still in the works. I can't reiterate how worried I am to have to tell him the surgery is off. And to be honest, I am not one to keep secrets from my kids so I hope we have an answer soon. It kills me every time he mentions the surgery and I have to pretend all is well. It just smack of lying.

Let's just all keep those fingers crossed that we hear quickly and we hear good news!

Day 461 - Sep 2, 2009

I am going to just skip writing tonight as I am utterly exhausted. Kevin was up all night last night back and forth into my bed from his and neither one of us got much sleep.

I will catch y'all tomorrow night...

Day 460 - Sep 1, 2009

Today was a very slow day. It was overcast and rainy outside so both the kids just stayed in bed all day. I made a ton of phone calls and got some more paperwork done and I also made 3 scrapbook layouts today.

I did come to find out that it's looking like they don't plan to do the surgery on Kevin's head in Sept. They planned to do all those little minor things and I just don't have the heart to tell Kevin this yet. It may just push him over the edge as he has been (none too patiently) waiting for this surgery over all the others. He is going to be so devastated (and angry)!

It may come out that it is still in the works, but it's just not looking like it. I talked with Mary (FRC) about this at length today and since Dr Spence (the wonderful plastics guy that did his neck/chin) won't touch his head, we may end up going to Bethesda for it.

I still don't know much, but I expect we may have some answers tomorrow. Keep your fingers crossed as I really am too scared and worried to tell Kevin the bad news.