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.

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...