Day 459 - Aug 31, 2009

I talked to the hospital and Maxim today about the companion issue and the home health aide company (Maxim) is seeing if the VA will pay for something like this and if they do, they are going to find a suitable young man for the job.

(Dominique - Kevin is on MySpace and Facebook, but he can't read much and he can't spell or type anything yet. Breezy or I try to sit with him at least once a week and help him with it though. He does look at all of his friends' pictures on his own though and seems to really love that! Thanks!)

I also have some Army folks looking into a GPS tracking system that can be placed inside of Kevin's phone. He never goes anywhere without it so it fits the bill. I did do some research last night and as far as I can see (and I admit I may not be seeing far enough yet), but there is no option to insert a chip into a person (not that I'm saying I would, but I did look into it). What is being inserted is just an information chip of sorts - name, phone, etc. The nurse manager is also looking into a medical alert bracelet with all of Kevin's pertinent information to start with. And I called a security firm to get that set up, but they have not returned my call as of yet.

And it turns out that Kevin's CT scan came back fine. Yay! I can only hope that the next surgery helps with Kevin's pain issues. I think the nausea will be with us forever, but there is a small chance the pain could go away. I sure hope so...

Day 458 - Aug 30, 2009

Today was a better day. We all just kinda relaxed and Kevin and I did a Walmart run because the game he bought can't just be played without the internet? I'm not sure if that's right, but that's what I am gathering.

We also swam a little and then cooked out and this evening the three of us just sat outside and talked for over an hour - something very unusual for Kevin.

I got a call from the doctor today too and Kevin does NOT have the swine flu - thank goodness! He has been feeling better since we increased his nausea medication though. I think he was just building a tolerance for it and it wasn't working as well anymore.

And Hallie - no, I didn't hear anything about the CT Scan.

To answer some more of the questions -

Holee - I agree that Kevin needs a companion. It's just figuring out how to find one. I mentioned recently that Chris (the Marine's mom) already tried to find one via the VFW and those types of places with no success. There just aren't any 'young' members. I am thinking about running an ad in the paper, but worry about the crazies that come out. I don't plan on doing anything until we come back from Texas as we are leaving in less than three weeks, so that gives me some time to figure out a plan. And Miss Em - I know you gave some suggestions and I will check those out too.

Patricia - I am sorry that your friend suffered from a TBI. I figured someone close to you had gone through some of the things we are. Best of luck to him/her.

I also want to thank those that sent suggestions on topics for discussion in DC. I have kept the emails (the comments here are emailed to me individually) and will refer to them on the flight to just remind me of the things that y'all mentioned.

Becky (Wayne's mom) - I have never been able to understand how Kevin knows some things, but not others. I guess it's just part of brain injury. He still doesn't know simple things - I have tried to teach him many times that the round things he eats off of are called plates, but he's just not getting it. Yet he does know how many pills he takes, what they all look like and what time he needs to take them. It's so strange, huh?

Miss Em and Long-time RN - I do agree that something needs done in case Kevin leaves again. Believe it or not, I already do have an alarm on his door, but it didn't work. And I didn't want to keep his door locked in case of fire, but it's locked now and the key is hidden. He will just have to be like everyone else and not have an exit from his bedroom.

I was trying to hold off on the 'real' alarm system until our finances were better, but I guess it's going to have to be done now. (the current alarms were just generic to pass safety code for the pool). It's on my list of calls for tomorrow.

And I have heard of the GPS type of chip being inserted in children and it's something I have to think about. That is not something I can do lightly for so many reasons. It's on my list of things to research. Man...I need an assistant...lol.

Day 457 - Aug 29, 2009

Kevin ran away today. He was mad at me because he has to take a new pill and he didn't want to do it. We argued about it and then he decided he was going to leave and he grabbed the car keys. I had to hold him back and he was trying so hard to get past me to the garage and he was actually winning because he is so much bigger than I am when I just burst out crying. He got disgusted and threw the keys and went into his room. It was only a few minutes when I realized he would probably leave out his french doors and sure enough - that's exactly what he had done.

Thankfully he walks very slowly and I found him just past the front of the house walking down the sidewalk. I left him go and then my Mom went and walked with him when he got out of sight. That kid walked over a mile all the way to the front of our subdivision. By that point, I was already following him in the car because I would have never thought he could physically walk that far.

He did finally get in the car, but by that point he was already sunburned and he was exhausted. He had been walking about 1/2 hour to 45 minutes.

And I just sat in the car and cried while he walked and walked and walked. What really killed me is that I don't even think he remembered why he was walking. He was grinning and waving and smiling like it was just a game. I think he thought (by the end) that the end of the development was a goal and he was just proud that he did it.

I know when we got home and I tried to talk to him about it he was completely clueless. I told him if this kind of thing continued he would have to be put in a home, but he really didn't get it at all. He didn't understand any of the conversation.

I just gave up.

He came out of his room a little while later and acted like nothing happened. I guess in his mind nothing did, but it's not that easy for me to just forget. And it made me so sad that my son is sometimes so childlike that running away is what he thought to do. This whole thing is just so sad. I hate that my son is like this. I hate that I have to watch him and can't trust him for a second. It's just not fair.

But, it is what it is and I guess I have no choice but to accept it.

And other than that, the rest of the day was good. It was my Mom's birthday so we all got together and had a nice dinner and swam all day. I had intended to get the rest of the rocks put down, but Kevin's afternoon escapade left me with no desire to go anywhere or do anything. I was just emotionally exhausted.

Still am, truthfully. So I think I will just go to bed early tonight.

Day 456 - Aug 28, 2009

We had a pretty good day today. We did have a little spurt where Kevin's head was really hurting and I did end up taking him over to the hospital for a CT Scan, but I didn't hear anything so I am going to assume (none too safely) that all is well. I will call them on Monday as I really have to believe that they would have called if there was a problem.

I spent the morning (and the evening) laying down patio tiles and rock around the pool pump and air conditioners. I was so tired of stepping in 4 inches of mud and sand every day (Can you imagine? Those of you that know me personally know how prissy I am about getting dirty, lol). So I finally bit the bullet and got the bulk of it done today. I do have to finish it tomorrow as I ran out of rock and it appears that another trip to Lowes is in order. My mom and dad gave me a hand this evening and we also got a little tool shed built that I got to store all of the pool stuff in. It has been just laying all over the place out there and when it storms (every single day) it blows around and sometimes ends up in the pool. Kevin gets really upset when it gets into the pool so this is a definite cure-all.

Tomorrow I really need to sit down and get some paperwork done. Kevin's discharge process has finally been started and I have a pile of forms to fill out. It's going to take hours, but I need to just do it.

And now I am heading to bed. Real quick though - Mary Jo - Kevin was really happy to get your phone call today. Sorry I couldn't talk right then but we were at the store. You made his day though!

Day 455 - Aug 27, 2009

I can't even begin to tell you how excited Kevin was today while at the bike shop. The owner took him outside and put him on a trike and Kevin just went nuts! I haven't seen him this happy in a long time. Here are some photos:




So now we start the paperwork for the VA to purchase one for him and I can only hope that it happens quickly. He is so pumped!

Oh - and Jan? The daredevil side already made an appearance - he wanted to race today as I was on one too riding beside him for a while. And believe it or not - these bikes aren't actually for the handicap per se. They are just for anyone that prefers a more comfortable, safe ride.

And I might have told you guys in July that I bought Kevin a one-handed controller for his XBox for his birthday. We couldn't get it to work until tonight. He needed a wired controller and all of his were wireless, so my niece's boyfriend swapped him controllers and then came over and got it working for us. Kevin was so happy! And because all of his games were stolen, he and Breezy just got back from a Walmart run to purchase HALO 3. He already wants the internet hooked up to his XBox, but I did tell him he had to become more proficient in using the controller first. Once that happens (I doubt it will take long), he will be able to reconnect with his online friends. I can only hope that this - above all else - will bring his determination to talk and to interact with others out.

On the Breezy front, her job interview ended up being a waste of time. I really don't understand why people have you drive to their place of business if they aren't even hiring. It's just so darn frustrating! But I guess she is just gonna have to keep looking. I'm sure there is something out there for her...

Day 454 - Aug 26, 2009

I am so excited tonight. I finally talked Kevin into a recumbent bike. Although he still hasn't realized it yet, I think the odds are slim that he is ever going to be able to ride a normal bike - mainly because of his balance issues. I can't remember if I mentioned that we did get the training wheels on the bike he bought, but he is so heavy that they bent when the bike leaned too far. (They are more geared toward 50 pound children - not 150 pounders.)

So I talked to our old therapist at the VA because I remember her saying months ago that the VA would purchase him a trike. In a million years I never thought he would accept something like that, but I more threw it as a go cart of sorts and he is so open to it. Matter of fact, he has called me into his room at least 4 times so far tonight to discuss the bike and his grin couldn't get any bigger. He is really excited!

Here is the website showing what these bikes are like:

Recumbent Bikes

I think we all have to admit that it really does look like fun. I keep telling him he's gonna have to fight me over who gets to ride it first, lol.

And today I did finally take Kevin to see a doctor. Miss Em - I never gave a thought at all to Swine Flu. Not one thought. But as soon as I read your post, it made sense that I needed to at least look into it. So I took him to a clinic here in Riverview and they did the swine flu test. We won't know for about 5 days, but the doctor did prescribe the meds just in case.

And I want to thank everyone for the votes of confidence on me going to DC. I admit that I am nervous about leaving Kevin for 3 days, but my nephew is going to come and visit that week and he will keep Kevin occupied doing 'guy' things. I did have the option of taking Kevin with me, but it's just too much of a whirlwind trip to have him go. He also would never be able to sit through something like that. And we can't forget that I come home on Thursday and we leave on Sunday for Texas for more surgery. It really is just best for him if he stays home and has fun with Anthony and Breezy.

And now I am going to quit for the night. Breezy just came down to talk about a job interview she has tomorrow. Wish her luck!

Day 453 - Aug 25, 2009

Both my kids have been sick all day. Neither one of them has really gotten up out of bed (except for dinner) and Kevin finally gave in and vomited all of his dinner up. Breezy has been wanting to, but she is holding out I guess. I think they both just have some kind of bug as they both have sore throats too. Hopefully they both feel better tomorrow.

And I have some interesting news. I have been invited to Washington DC to speak at a Defense Forum. Here is the website with the schedule of the day:

Conference Schedule

I am a little bit nervous, but I think there is a need for 'the powers that be' to realize how much more horrible this type of situation is because of our lack of guidance and knowledge in dealing with all of the systems necessary. I know now that I have done all of us a disservice by not mentioning all of the problems and realities that we have endured during the last 15 months, but what's done is done. I will always try to focus on the positive - it's just my nature - but on occasion you may see some of the issues trickle into my posts from here on out. I think it will give a little bit more of an accurate picture into all of the aspects of Kevin being wounded.

And now, believe it or not, I am going to go jump in the pool and have a nice relaxing swim. Nothing better than a near 2am swim, right?

Day 452 - Aug 24, 2009

Kevin went out with my sister and her family tonight to an arcade and I guess he had a blast. He really had a good day all around. He went to therapy today and it went well both times, he swam in the pool for a while too, he got shaved ice from the ice cream truck and then he went out with my sis. And to end the day - surprisingly - he came home and stayed in the living room to watch tv for almost an hour and a half. Kevin never stays in the living room - he always goes into his room and shuts the door because he keeps his TV on mute most of the time.

Anyway, I sure wish all of our days could be this great, but I know that's not possible. Not yet anyway.

I want to quickly tell you that Kevin is saying more words now too. Some of his new ones are blue (boo), banana, cheese, watermelon, shoe and bread. He has been trying to say his name so hard too - he says it like "Kenin". It just makes him so mad every time he says it.

And now I am going to try to catch up on some of the questions/comments:

Suzanne in Adrian - to the best of my knowledge no therapists have ever mentioned music therapy. Is that part of speech or is it a separate entity? Do you have to have a music therapist or can every speech pathologist do it? I would be interested to hear more.

As for a male aide - it's apparent that that's not going to happen. Kevin won't allow a male to touch him and a huge part of his having an aide is to help with his burn garments. If you remember, we did have one in the beginning, but he wouldn't allow the guy near him and he finally 'told' me that he wasn't going to allow a guy to rub his body with lotion. I can respect that.

I do think it's a good idea to have a male around, but I talked to the Marine mom about going to the VFW or something like that to find someone that would be willing to come in every so often and be 'friends' with Kevin, but she had already looked into that and there aren't any young people available for it.

I am hoping that the wounded Marine might make a difference, but I'm not sure. JT has issues as well and Kevin may not be so tolerant of them. BUT, then again, Kevin may be just fine with everything too. I guess we'll see...

Lisa D in CA and Long Time RN - so far I haven't utilized any form of support. Mary (FRC) gave me a website though that has a support group in the South Tampa area and I plan to look into it. We have gotten to the place where Kevin can be left for small bouts of time and Breezy and I can take off for whatever reason. This can't be done often yet as we are still working through the separation anxiety, but we are making progress.

Patricia - your posts are always so knowledgeable and insightful. I think I missed something somewhere...did you go through this type of thing with someone close to you? I am so sorry if you already mentioned it. Chances are it just went right over my head.

Jan - you asked what Mary says about year 3? I don't think I want to know, lol!

Miss Em - you mentioned Kevin needing to feel he accomplished his mission (therapy) each time and that makes me think of something I read today in "Over My Head". It mentions this person needing a goal and I think that is a big part of what Kevin needs. He needs something to focus on, something to strive for.

At this point - I would love to hear suggestions from all of you on possible goals for Kevin. I am already thinking for him to skate in his skate park by next summer, but I am sure there are many things I'm not thinking of. I want to throw out some suggestions to him and have him decide what is most important and then we can work on it as a family. Any thoughts are welcome.

Hallie - sometimes I feel like it's one step forward and twenty back. I know it's all part of the process, but I just want it all to go forward and keep getting better (and easier).

Jessica - I do believe that Kevin understands when he is reprimanded for his behavior, but I can't say with certainty that he remembers it even 5 minutes later. I think there is a good chance that he does forget (as he often does).

And now I am going to go and watch some mindless tv. I finally got mine hooked up in my bedroom yesterday so I can lay in bed and not have to worry about falling asleep as soon as I turn the thing on. That's what normally happens.

Day 451 - Aug 23, 2009

We didn't do too much today so I am going to just skip writing tonight.

Day 450 - Aug 22, 2009

Today didn't quite go as planned, but it still was a nice day. I had invited a mother of a wounded Marine and we didn't get much scrapping done, but we did have a great day just talking and planning. We have decided to try to get our boys together to see if they can help each other. They only live a few miles from us, so it could work out that they get along great and we can have them do things together - even if it's just watching TV or a movie.

And Breezy did take Kev to the mall, but he got very angry while there and they had to leave pretty much as soon as they got in the door. I was proud of Breezy that she handled it well and she ended up taking Kevin over to my sister's for a while and then on to my parent's instead of giving in and just bringing him home. Good for her.

And that about sums up the day so I am going to sign off early tonight.

Day 449 - Aug 21, 2009

Today started out pretty bad, but it did get better. When we went to therapy this morning Kevin got very mad for some unknown reason and just walked out the door and started walking home (about 7 miles). I left him go to see what he would do and he walked about a quarter of a mile before I went to get him. I was worried that he would be hit by a car as it is a busy parking lot and he really doesn't comprehend the need to watch for cars.

So we came home and I literally just dropped him off and I left him with his aide and I just drove around for an hour or so. Today was just one of those days that I wanted to just quit. Just go home. Forget about it. Not doing this anymore.

I so wish that was an option sometimes.

But it's not, so I guess I need to figure out how to deal with this person that is really no resemblance to the person I sent away to the Army.

And I'm sure that this is just a rough patch, but it doesn't make it any easier knowing it. It doesn't make it any easier dealing with it either. Kevin has just become so hard to be around most of the time. Both Breezy and I are really struggling for the most part trying to just figure out how to keep him happy so that we can get through the day with fewer tears.

Mary (our wonderful FRC) is always telling me that the second year is always harder than the first and boy - she is so right. Darnit!

So anyway, he did get into a better mood this afternoon and because I told him that things were going to change around here, Breezy and I went to a movie tonight. He had the option of going (he always does), but he preferred to stay at home so that's what he did. We are no longer going to just sit at home because he wants to lay in his room all day. Sometimes we will coax him to go, but sometimes we will just let him make the choice.

Breezy is planning to take him to the mall tomorrow though. We haven't been there in many months so it will be good for him to go. I am taking part in an online crop at ScrapMuse so the kids have to pretend that I am not home all day tomorrow. This should be very interesting, lol.

And that about sums up today so I will catch everyone tomorrow night...

Day 448 - Aug 20, 2009

Kevin was in a much better mood today. I had Breezy get up with him and I slept in (actually I just kept rolling over every time the phone rang - which started at 7:30am!). She took him to both of his therapy appointments today too, while I made a billion phone calls pertaining to Kevin's discharge from the Army. I don't think I ever mentioned that because Kevin is 100% disabled, he will actually benefit more from being discharged (did tons of research and weighed all pros and cons). To give only one example - now that we have a pool he can have a therapist come and do pool therapy. He has to become a veteran first though. He cannot have pool therapy while on active duty.

And this evening we went to the MOAA dinner at the hospital and then we went up onto the ward to visit everyone. Kevin walked nearly a mile from one part of the hospital to the other and I was so proud of him. We had his wheelchair with us too, he just chose to walk and I really was ecstatic. He is really building his stamina.

And I can't begin to tell you how many people came up to us and were amazed at the difference in Kevin since the first dinner we went to way back when. And you had to know that Kevin was just showing off, right? LOL.

I did talk to the doc tonight too about increasing both his anti-depressant and his nausea medications and we will be doing that probably tomorrow. We are going to try this route first and I will keep an eye on whether we need to have a CT Scan or not. You just never know if any of these depression symptoms are intracranial pressure. If I see any more signs, I think I am going to opt for the scan though. I know that Hallie asked when his shunt was last checked and that is what the scan will do. It has been a while, but at this point, he really isn't having any of the standard signs - lethargy being the main one that shouts "SHUNT" to me. And before I forget - there have been no new meds or any other changes either.

And I know I have TONS of questions/comments, but I am only going to answer one tonight.

Jessica - Kevin mostly looks at pictures of his friends on his Myspace page. I think he can read some - but not whole paragraphs or anything like that. He more recognizes words than actually reads them. Sometimes he calls me over to read what people have written.

Ok - I know there are so many more (music therapy, male aides, support groups, etc), but they will have to wait for another night. I am tired and want to try to get some sleep.

Day 447 - Aug 19, 2009

Kevin was just very depressed for the first half of the day. I took him to therapy and he wouldn't even stay. He was on the bike for a minute and 45 seconds and then just climbed off and went out and got in the car. He wouldn't go back for his second therapy of the day so I had to cancel it. He just came home and stayed in bed.

After a while I went into his room to try and talk to him and when I sat on his bed he pushed me off and I fell, banging my head on his nightstand. Well, that was just it for me. I told him that I am just not going to live this way anymore and that he was going to have to go back to the hospital and live. I then left the room and went upstairs to have a little pity party.

Probably about 10 minutes later he came looking for me and I just firmly reiterated what I said. He started just sobbing and moaning and it just broke my heart. I just can't imagine having lost everything - the ability to think, the ability to speak, the use of your arm, ease of walking, stamina, vision, just flat out any realm of independence. I do feel for him - I really do. But I can't live like this and I told him he is going to have to start doing things that are fun. And he has to quit being mean all the time. There will be no more laying around all day. He said he'll try so I guess we'll see. He did take his computer and sit outside while I cleaned the pool and then he was in a great mood for dinner. I had him help grill the pork chops and it was the first time we sat outside and ate dinner. (It was a little bit cooler today so it was bearable.)

So I guess we'll wait and see how he is tomorrow. I sure hope that things change because this has been really rough lately for all of us.

Day 446 - Aug 18, 2009

I'm not going to write too much tonight as Kevin was up sick again almost all of last night. He came and crawled into bed with me for a couple of hours, but then he went back to his own bed and just called me into his room numerous times. He finally threw up in the wee hours of the morning, but it didn't really make him feel any better. I wish I knew why he has been getting sick lately. He is already taking two different meds to help with nausea so it doesn't really make sense.

Other than that, he was ok the bulk of the day. Mean and irritable, but ok.

And on that note, I am going to call it quits and hit the hay.

Day 445 - Aug 17, 2009

I slept so wonderfully last night. And for hours too! I am so happy to finally have my own bed to sleep in.

Kevin was in a much better mood today. He got up and went happily to both therapies and then we were heading to the beach. Of course you had to know that it began storming and it went on so long we turned around and came home. So poor Levi didn't even get to go to the beach one time while he was here. I told him next time we'll go twice just to make up for it though.

And unfortunately Levi has to go home tomorrow morning. Darnit! I'm gonna miss him all over again, but he swears he's coming back during Christmas break and he's moving in for the whole summer next year, lol. Not sure what his mother thinks, but I guess we'll see, haha.

He and Kevin got along really well too. Here is a photo of them saying 'goodbye'. I just took this one a few minutes ago.



And to give a quick update on Mike - he seems to be doing well. Traci still doesn't know much, but they don't believe it is a spinal cord injury after all. They think his back is fractured in a couple of places, but they will be checking things out again tomorrow. He is at Landstuhl in Germany and so far he is in a body cast. Hopefully they can get him back to the States quickly. Please still keep them in your thoughts as it's just too soon to know everything yet.

Day 444 - Aug 16, 2009

I get to sleep in my very own bed tonight! I finally got around to setting up my room and unpacking all of my own things. Aaahhh...my very own comfortable mattress...

Other than that, we didn't do anything today. Kevin and I were going to go to a movie, but we got company and then it started storming horrendously after that. We just opted to stay in and I continued to unpack while Kevin watched a movie on TV.

Breezy took Levi back to Busch Gardens as his ticket was good for another visit and Breezy's is still good until October. I don't like to ride the rides and both Levi and Breezy do so it was a good thing for them to enjoy it together.

And now I am going to just answer some of the comments:

Jessica - I was very shocked that Kevin is allowing the training wheels also. It's completely out of character for him to use any type of aid - especially one that is so childlike. Hopefully nothing happens while we are out riding to cause him to not continue using them.

Cat - I vaguely remember Melody Ross's husband having a TBI - can you tell me where to find the info about where he went? I went to her blog, but it was mostly a scrapping/craft blog...

Miss Em - you had mentioned about me making flash cards, but Kevin WILL NOT do anything like this with me or Breezy. He adamantly refuses to do any type of thing that resembles therapy in any way. It's gotten to the point where if I ask him to say a word he just says 'no'. It's so frustrating for me because he just could be talking so much more if he would just apply himself. I did think there for a bit that maybe he was just tired of doing therapy like things all the time so I lay off for a few weeks in trying to get him to say anything, but it didn't make any difference - he still won't try at home. I guess I won't complain because at least he is going to speech therapy (although it is a fight every time he has to).

Janna - I found "The Shack" today! I am in the process of reading "Over My Head" right now, but I will read it next. I don't have much time for reading so it may take a couple of weeks before I get to it.

I will suggest that anybody looking for a good read takes "Over My Head" into consideration. WOW! (Cathy M - was it you that sent it to me?) I actually cried on page 1 and it has just continued from there. It just breaks my heart to think that my son's thoughts could be that scattered. So much of what I am reading just seems to fit into what I see going on behind Kevin's eyes and it's so terribly sad to have it put into words. It's so sad for me to truly know how his mind possibly works - or doesn't. (Although I do have to wonder why this woman is alone? How can anyone allow someone with such a severe brain injury to live alone in NYC - or anywhere for that matter?)

Patricia - I have tried a couple of times to get Kevin to sit and look at movie titles on Amazon, but he wants nothing to do with it right now. I'm not sure if he understands exactly what we are trying to do, but to be honest - he doesn't want to do much of anything anyway. We are 'supposed' to go to the beach tomorrow and I am so hoping he will go. He says he will so keep your fingers crossed...

And I'm going to end with me asking for everyone to keep my friend Traci's husband in your thoughts right now. She is one of the past owners of ScrapMuse and her husband was just wounded (IED) in Afghanistan. She just got the call today. She doesn't know anything more right now. He was able to call her, but it was a bad connection and they got disconnected. She did mention a spinal cord injury, but that's about all she knows. Please just keep Mike in your thoughts throughout the next few days or so.

Thanks everyone!

Day 443 - Aug 15, 2009

Kevin and I went tonight and bought a set of training wheels for his bike. He agreed to allow me to put them on so that he can go for a bike ride. Thankfully, we found his old helmet in our things so we are all set to go.

I have to make it a priority to get him out of his room and do things. He is very depressed and I just don't know how else to get him out of it. I called the doctor yesterday about increasing his anti-depressant, but that will take weeks to see any kind of change and I don't want to wait that long.

I do understand that he has to go through all of these feelings, all of the losses, but it always scares me some. I am just not trained in how to deal with this. I did spend some time the other day calling psychologists, but from what I am gathering we need a neuropsychologist. The few regular therapists that I called just weren't sure they would be able to help him due to the TBI.

So this week I will have to just get on the phone and find one. I'm not sure how we are going to fit another appointment into our week, but I guess I'll figure it out.

And it looks like I need to go hurricane shopping. Yikes! A little scared about the prospect, but there's nothing I can do but be prepared. A little trip to Sam's club tomorrow appears to be in order.

I need to get the garage cleaned out of boxes too so that I can actually pull the car in...

Day 442 - Aug 14, 2009

I just don't feel like writing tonight so I will catch y'all tomorrow night...

Day 441 - Aug 13, 2009

Levi and I went to Busch Gardens today. My year pass for there is almost up so I figured we would get out and spend some time looking at all of the animals. We had a great time and it was a much needed day away for me.

I wish I could get Kevin to go there with me. He could if he would just wear that sun protection clothing, but he just won't. Grrr. I guess I'm not sure if he would have a good time anyway. He wouldn't be able to ride anything and it may just upset him. I just don't know.

So I can't really report anything about Kevin today because I just wasn't here. He was fine when I left and he was fine when I got home, but other than that I don't believe anything much happened. I did check with his aide while I was gone a couple of times, but she had nothing to report either.

So I think I am going to just sign off here and get some sleep.

Day 440 - Aug 12, 2009

Kevin was up again all night last night. He finally fell asleep sometime after 7am so I ended up having to cancel the first therapy appt of the day. He was also in a lot of pain today and from what I am gathering, it was a strange kind of pain in his head. We had just put him on a new anti-seizure medication and something for ADD and he feels so strongly that those two new pills are what was causing the new pain and now he is refusing to take either of them. I tried to get a hold of the doctor today, but was unsuccessful. I will just have to try again tomorrow, I guess.

Other than that we had company all day. My family was here helping me try to get through more of these boxes. We were able to get the office mostly done and a lot of boxes are now empty. I would safely say that I am maybe halfway through? I wish I could tell you that a certain room is done, but I keep finding things in boxes that are labeled totally different. We found yet another styrofoam container of 15 month old moldy french fries in a master bedroom box along with good food, Kevin's shoes, scrap supplies and tupperware. So organized, huh? No wonder I have always packed myself!

And Kevin learned a new word today. "Shoe". This therapist is using flash cards and although I think it's great that Kevin is learning new words, I really wish they were useful words. (Like help, soda, cold, hot, etc.) Oh well, again - I'll take what I can I guess.

And now I am so off to bed. I am just exhausted tonight...

Day 439 - Aug 11, 2009

We got company today - YAY!! If you remember from when we went home the first time, there was a little boy that means the world to me - Levi - well, he actually came today to stay for a week. We are all going to have so much fun (I hope anyway). Kevin actually has been showing Levi all around his house and showing him all of his things. He even has a bunch of clothes that don't fit and wanted to give them to Levi. It was cute because Levi is only 10 and nowhere near Kevin's size, but Kevin didn't understand that and I didn't point it out.

Other than that, we didn't really do anything today. I have been putting furniture back together that the moving company took apart (good thing I'm handy with tools, huh?) and I am still unpacking box after box after box. I swear it's never going to end.

Kevin didn't have any therapy today so it was basically a day off for him. One thing he did do today though was clean for hours. And I mean hours. As I have been unpacking, he has been organizing things and putting things where they go. He even continued when I went to the airport to pick up Levi and I came home to find the kitchen being amazingly clean. I told him "thank you" and how proud I was of him and he was just beaming.

And now I am off to grab a snack. Breezy just made a pop-tart and it smells so good...

Day 438 - Aug 10, 2009

Kevin's doing so well at therapy. I rarely go in with him nowadays and it just makes me so happy that he is beginning to understand that there are moments in life where I just don't have to be there.

The only one that we are having trouble with is speech. I don't know what's truly going on, but I think he is embarrassed that he can't talk. He just doesn't want to try to talk hardly at all and I can only assume that it's from fear that he can't do it. I am hoping it's just a stage that he will get past very quickly. I think it's just sad because I do believe he will be able to speak much better than he does now, but only if he applies himself. He just gets so disgusted and I have to admit that I would feel the same way so I can understand it.

And sadly, I had to have the home health aide that Kevin really liked 'left go'. We switched 5 hours on Thursday (because she was moving) to Saturday and for some reason she didn't show up for work. I am a very understanding and lenient person, but when she didn't bother to call all weekend to explain, I realized she just wasn't reliable enough to watch Kevin. It was hard for me to call and let her go because Kevin really did like her, but after thinking about it all day yesterday I felt it was the right thing to do.

So the person we have now on M-W-Th is going to come all week long. I really like her and Kevin is starting to adjust. Both Kev and I still need to adjust, truthfully, but we are getting there.

And now I want to get some more unnpacking done. I have to ask - is it normal for a moving company to pack your garbage with your things? Literally. They put leftover food in a Styrofoam container into a box with my kitchen things. I am so appalled at how things were packed and at the fact that they packed trash in with good food and other supplies. Crazy!

Day 437 - Aug 9, 2009

We had another very lazy day today. Kevin didn't even get up until after noon and I only got up about an hour or so before him.

We didn't really do much, but we did go to my parents for dinner. After that, we came home and went swimming for a while.

I think I am just going to answer some of the questions/comments/emails from the last week or so. I am running way behind on this.

First, many of you may have noticed Lorraine signing her posts adding Howard the Duck. I think I even posted a photo on here of Howard from the PH ceremony. Sadly, Howard passed away last week. To Lorraine and Rick - I am so sorry. I know that Howard was part of the family and any loss is so hurtful. To everyone else - there were many smiles from Kevin over the last year when we would get photos of Howard doing things. Howard was even the ring bearer in their son's wedding. So Sorry, guys.

Cathy M - you asked about the TBI trial that we are looking into. I invite you to check out the website for all of the information. You can check it out by clicking here.

Miss Em - you asked if Kevin could possibly draw things that he has trouble getting across verbally and unfortunately he can't do that. I think he knows things in his head, but between the thought occurring and somehow getting it across it gets all jumbled up. For example - yesterday I asked him what color something was. He knew exactly what it was and said 'duh' and then got so upset when he couldn't say the word 'blue'. He was so angry that he stomped off to his room. I have tried to get him to write and draw things knowing he can't say them, but it's just not possible. His brain just can't convey how to draw it either. Such a bummer, huh?

Paul Pomeroy - thank you so much for explaining why Kevin can say the "F" word so easily, but not normal words. I would have never known that swear words stem from a different section of the brain.

Kevin and Natali McKee - I never did mention the brain doctor because I never actually got to speak to him. He did return my call one day, but I was busy and couldn't take it. I do have a website though - check it out by clicking here. I have it on good authority that it really works. A man was here to inspect the pool alarms and he went to see this guy because he had ADHD and paranoia very badly. He is almost completely cured (still going for treatments) and feels like he has a whole new life ahead of him. I have to be honest and say that I would normally be very skeptical of something like this, but this man had nothing to gain by telling me about himself. Hopefully I can talk to the doctor this week sometime.

To local camp guy with the spiked hair - I love ya, Ted. You crack me up, lol!

Michelle Long - Thank you so much for the photos. I carry them everywhere - they are the ones I show to everyone. Awesome!

And I think I am going to stop now. Breezy and I are going to watch America's Best Dance Crew that I taped from last night.

Day 436 - Aug 8, 2009

Nothing much happened today so I am just going to skip writing tonight. Sorry!

Day 435 - Aug 7, 2009

Not a whole lot went on today. Kevin really wasn't feeling well so he left his first therapy appointment early and he was so nauseous that we skipped the afternoon appointment as well. It worked out for me though as I got so much unpacking done this afternoon while he pretty much slept. The kitchen is nearly done and my scraproom is more than half done too. I got my living room furniture all set up upstairs and I can't tell you how wonderful it was to sink down into my very own plush living room suit. I know it's so dumb to be so excited about something like a couch, but I had wanted a red living room suit my whole life and I finally had the money to purchase one just a few short months before Kevin was wounded. I sure missed it, lol.

So now I am going to get some more of my scraproom done. I have to admit though that I am VERY disappointed by the moving company that packed my stuff almost a year ago. All of my photos and scrap supplies were literally thrown into boxes and my photos are so bent and a good portion of my paper is destroyed. I can't believe that it cost so much money for such an unprofessional job. Once I get everything unpacked, they will be hearing from me (and yes - I am taking pictures as I go!).

Anyway, back to unpacking...

Day 434 - Aug 6, 2009

Today started out really well. None of us got out of bed before 11am and it was wonderful. I did spend some time on the phone, but I was still was laying in bed so it doesn't really count, lol.

Breezy took Kevin to his therapies today and I stayed home to make more phone calls. One of my main priorities today was to find out what was going on with the van. I had it towed to the Chrysler garage over a week ago because of all of the issues with it. I had never heard anything back from them, so I gave them a call today and imagine my surprise when they told me that they didn't have the van. I can assure you that total panic set in at that point. I hurried and called Roadside Assistance and then the towing agent and then back to the Chrysler garage and truthfully - it ended up with my being me on the phone back and forth with people for an hour and a half. It turns out that the tow truck driver never went in with my keys to the garage so they didn't even realize it was in the lot (?!). So there it sat for 8 days with the keys in it. And to make it even worse, someone jammed the key in incorrectly and the garage couldn't even get it out of the ignition.

I swear, if I didn't have bad luck - I wouldn't have any at all.

Other than that, not much went on today. We were all going to go to the beach (my whole family), but Kevin didn't want to go at the last minute. That, of course, meant that I couldn't go, so I watched while everyone else left to have a good time. These kind of moments are hard. It's not easy having pretty much no life of your own and it's even harder not having much time to do anything 'fun'. I really do try to get Kevin to do things, but he generally won't. I know it's hard for him - I really do - but it still makes it hard on me too. Oh well, I guess it's just the way it is.

And I am going to end with Patricia's suggestion for me to send a list of Kevin's movies and games that were stolen from either Germany or Afghanistan. I wish I could do that, but unfortunately I don't really know everything he had. I already purchased all the Harry Potter movies months ago as they are some of his favorites. I know he is wanting to repurchase "Happy Gilmore" and "Meteor Man", but other than that he purchased most of them in the near year that he had been gone. I remember him coming home for Christmas with this huge 'book' of movies and games. I know I also sent him 3 XBox games to J-Bad, but I couldn't even tell you which ones they were anymore. I really appreciate the suggestion - very much - but I will be no help and because he doesn't really talk there is just no way for me to come up with any titles. Sorry, Patricia!

And now I am off to bed. Kevin was still awake at 5am this morning so he is sleeping soundly right now. (no wonder he slept until 11am, huh?) I hope to follow his snoring pretty darn quick, lol...

Day 433 - Aug 5, 2009

We are still trying to find our way around all of the boxes in the house. Kevin made me open all of the office ones thinking his DVDs and XBox games would be there. I tried to explain to him that none of them made it home from Germany or Afghanistan, but he just doesn't comprehend what I am saying. It's sad because he had probably $1000 worth and now they are just gone.

Anyway, he keeps screaming at me to open all of the rest of the boxes in the house and I am really starting to feel stressed about it. I just wish he would understand what I'm saying, argh!

I don't think it helps his mood any that we can't get into the pool for 48 hours. The chemicals are just too strong due to it being the first time it was treated. (and Em - there are no fire hydrants here. I never noticed that until you pointed it out, lol)

And I do agree. Kevin REALLY loves his pool and it does take a lot to get him out of it, lol. Loved the suggestions too! Hehe.

And today they finally came and fixed the palm tree that was laying on our neighbor's fence. YAY! I can rest a little bit easier. Kevin really enjoyed watching the one worker climbing up the tree. He thought that was hysterical.

Ruthie - you asked about the dark frame around the pool and that is just the screen. There really is no shade thing which is why I had to order those large off-set umbrellas. They are coming tomorrow, but I don't know when they will be 'installed'. I hope soon as I really don't allow Kevin to be in the sun for more than 10 minutes at a time and it's making him mad when I ask him to come out of the pool. Oh - and tell Jonathan 'thank you' for the very nice post.

And I know I have a ton more comments to respond to, but I am going to stop here for tonight. It's almost 1am and Kevin is still awake and I have had to get up at least 15 times while writing this post and I want to turn the light out in the hopes that he will go to sleep. I doubt it will work, but I'm gonna try...

Day 432 - Aug 4, 2009

I am actually going to skip writing tonight. I will leave you with some photos of Kevin in the pool though.

Before I forget though - Miss Em - you suggested getting water from the Fire Dept, but I was told there are no water trucks in FL. You have to use your tap water. It ran probably 28 hours to fill it. To be honest - it wasn't even full yet when these pictures were taken, but I couldn't get Kevin to wait another minute, hehe.

Day 431 - Aug 3, 2009

Yay! Our things arrived from PA and all three of us are so excited! You should have seen how excited Kevin was when he spied his fishing tackle box. And when he caught sight of his totes from Afghanistan and Germany - he about went through the roof!

It was really like Christmas for all of us. We have a LONG way to go to get everything unpacked, but each box reminds us of things from the past. It was just so neat opening everything, but it was also so tiring. It is really going to take quite a while to get all of this finished, but we will be here for over a month yet so we have the time.

And today we are finally filling the pool. There have been quite a few phone calls from me to the pool company because it was supposed to be done over a month ago and I kept getting told it would be done by this date and then that date and so on and so forth. I was so frustrated because I kept getting Kevin excited only to have to let him down again.

I hated to say anything as the pool guy drastically reduced the price because he called all of the vendors and got parts either free or at a major price break, but still...Kevin was getting so upset each time they told us it would be done and it wasn't.

BUT - it is finally being filled. It should be done by tomorrow afternoon and Kevin was already in it today. Here is evidence, lol:



He was just so excited!

And did you notice the palm tree leaning on our neighbor's fence? Yeah. I was pretty upset about that when we came home from PA. I had called the company a couple times before we left to have it tightened down before it was even near their fence, but my requests were ignored. It was so frustrating to have to meet the neighbor because our tree was on their fence. They were cool with it though. Lucky us.

Ok. Off to relax for a little bit before hitting my bed.

Day 430 - Aug 2, 2009

Today was a good day. We had everyone down for dinner - there were 15 of us total and we had stuffed turkey with all the trimmings.

Other than that, we didn't really do anything. We did get almost all of the pictures hung - actually Tracy and Jody got almost all of the pictures hung - and I must say we really made a HUGE dent into the things that needed done.

Unfortunately Tracy and her family needs to leave tomorrow morning so the rest is up to me and Breezy. And tomorrow they are supposedly bringing our things from PA so it's going to be a very hectic day.

Anyway, that's about it for today so I am going to sign off early.

Oh - but here is a link to the Tribune Review article that was done on Purple Hearts. It mentions Kevin:

Tribune Review

Day 429 - Aug 1, 2009

We had such a great day today!! We talked Kevin into actually going to the beach again. I knew he wasn't going to allow the special wheelchair, but I figured he is walking so much better that he just might be able to do it. So we all loaded up in the cars and took off to Fort De Soto in St Pete. It's a park so it's less populated and the beaches are very nice there.

He did so well. So much better than I ever thought he would. Here are some photos:

The first is Kevin and Tracy walking toward the ocean.



This next one is Kevin just lounging on a beach chair. He so enjoyed just laying there and it was such a pleasure to watch his face look so content.



And this last one is of Kevin, Jody (Tracy's husband), Jessi (their son) and Jessi's friend Mike.



He just looks so happy doesn't he? The guys actually went way out and Kevin tried to swim some. He did go under a couple times (purposely) and it made me feel so happy to see him enjoy himself so much.

After that we came home and had some dinner and then we all sat outside around the pool that still has no water in it and we just all talked and carried on.

And apparently Kevin promised Tracy that he would play Yahtzee with her so we did that to end out our day. We used to play this months ago and Kevin did understand the bulk of it, but now he understands it completely.

And unfortunately Kevin learned a new word today. Let me rephrase - he didn't learn it, he just shouted it out. He was coming down the stairs and he must have banged his leg or something because he just said the "F" word as loud as he possibly could. You could tell it was just a reflex and I think we all just stood there stunned.

I honestly just don't get how something like that just pops out and yet we have been working on him saying KEVIN for over 10 hours now to no avail (over a period of 2 months). It just makes no sense.

Oh well, I guess I'll celebrate any words he wants to say. He seems to have had some sort of break-through while we have been in PA and us now having company. He is trying to talk more and I can only assume it's because there are more people around than just me.

Whatever. I'll take it!