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!

Day 428 - Jul 31, 2009

I think the really sad part about all of this spiraling out of control is that all I asked was that everybody write to their senators and congressmen. I rarely mention the bad things that go on throughout most of the day, but I did decide to share what really goes on in a wounded soldier's caretaker's financial life just so that you could all see how important it is to support this bill. That was it. That's all I asked.

How it all turned into an attack of sorts on my purchasing a Wii and a laptop to help Kevin regain some of the mental shortcomings is beyond me.

How it ended up being that we have eaten out too much over the last 14 months I don't know either. Personally I would die a heavenly death if I could have a home cooked meal forever more. Does anyone have any idea how hard it is to eat out 3 meals a day for almost a year because you don't either have access to a kitchen in your living quarters or because you don't leave your son's hospital bed to cook?

As for the pool - no regrets. I do admit that if I had known that Kevin wasn't going to be discharged for a year - I would have waited. But I had been told over and over again that he would be. That the process had already been started. As to why I purchased the pool - two reasons. Number one - therapy. No more explanation needed on that point. Number two - Kevin is almost always in his room. I want him to come out and do things he used to enjoy doing. Swimming was one of those things (and let's face it - he's never going to drive again, never skateboard, never play XBox, never ride his BMX bike and never jump out of an airplane either). Now we could have went to a public pool but I have this aversion to making my son become the entertainment for the day. When we took him into the pool all those months ago it took him close to 20 minutes to get into the pool (and get out) and it's not like he's going to just start swimming right off the bat either. And we won't even mention how bad his body is burned. So should I seriously just put him through that? NO.

The point really has been that all of these things may not be necessities to a normal person, but we don't live a normal lifestyle. Kevin requires the pricier patio table and lounge chair because he (and the piece of furniture) both fall over when he tries to get up if it is too lightweight.

I also think that some of you believe that we eat at expensive restaurants all the time and that is so not true. It's a rare treat and I usually mention it on here because it is a treat. I also should point out that I don't usually eat when we hit a drive-thru (Kevin is ALWAYS hungry) - he purchases his meal and I wait until we get home and have a fried egg or peanut butter toast or something simple like that for dinner.

So what I would like to do is end this drama right now. I honestly don't have the time to dwell on it as my day is full enough already. I don't discount anything anybody has said - we all have our own opinions, but all the negativity must stop. I just don't live my life that way. I just can't live my life that way.

I will say that I am very sorry if I offended anyone with my spending, but I don't really regret anything. I have done everything for Kevin to help him have a better quality of life. If it wasn't done on your timetable - I'm sorry, but I do feel that each thing that I purchased has helped him get better than they ever said he would.

So once again - let's move on completely from money issues and focus on the real thing - KEVIN!

Kev said a new word today - RED. Strange, I know, but he has flashcards from the new therapist and he did very well with his colors. He has to learn them all over again, but we are getting there.

I can't stress enough how pleased I am with this new therapy group. They so rock! Kevin is just responding to everyone and doing so much more than he ever would. He even walks in and shouts and waves hello to the receptionist and just 'talks' up a storm with everyone. He loves it there.

Today we didn't do too much. We did go to visit my sister Kim, who just moved here yesterday. YAY! And other than that, Kev just 'hung out' with Tracy's son Jessi and his friend Mikey. They are getting along really well. I made a very small dent in the pile of mail and we got things organized because...and get this...our things from PA are finally going to arrive on Monday. YAY!!!! I can't even remember what we have. But I can't wait to see my sewing machine and my Kitchen Aid mixer. Oh and my food chopper. And my clothes. And Kevin's things from Afghanistan (although all of his movies and games were stolen). It's been 14 months today since Kevin was wounded and pretty much that long since any of us have seen our things. I just can't wait to have our home back - even if it is in Florida.

Day 427 - Jul 30, 2009

I think I should have started last night's post with a comment about my tone of voice not being one of anger or snarkiness, but rather just defeat and sadness.

I also should have made it aware that it was in private emails that some (yes more than one) questioned my financial integrity and it was only to them that I based part of the post to. The comments were what I was answering when mentioning about why I can't get a job.

I do know that most everyone that reads this blog understands what I am really like and I do think that most have our best interests at heart. I also think that I have made a mistake maybe in not telling y'all how crappy this lifestyle really is. I just can't focus on how bad it is though - it's the only way to get through all the horrible parts; by pretending that all is well and good.

So anyway, just forget I said anything. I just don't have time to focus on people that I just can't relate to. And to those that feel I am just out blowing money left and right on a high end lifestyle - well...the little smiley with the tongue sticking out is virtually inserted here. I also seriously hope that those folks never go through anything like this as a severe reality check will be blowing up in their faces.

Now...moving on...

We had 'the good aide' today. Her name is Trisha and Kevin did really well with her again. (Patricia - she can only come on Tues and Thurs so yesterday's aide was a once in a lifetime person).

He also had OT and PT today and did great for both of them. For PT he actually rode the stationary bike for a full 5 minutes. This is in the hopes that he will eventually be ready to go for a bike ride with me. Here is a photo:



And this one if of Kevin using the pulleys. He still doesn't really feel that right arm (proven when they took donor skin from that arm for the last surgery and he didn't even know it until I pointed it out - days later. And supposedly donor sites are more painful that burn sites)



And now I am going to sign off. Tracy and her husband Jody came down from PA to help me do a few things. Stuff like unpack and get the van fixed, get the car fixed, build things, fix things - basically all of the things that I just don't have time to do. Tracy has even opened all of the mail (the stack is about 3 feet high) so that I can eliminate a step in trying to get it cleaned up. Man though - she is a task driver, lol! I don't know who is worse - her or Kevin, hehe.

Oh and remind me to mention the new brain doctor tomorrow. I am really excited about him!

Day 426 - Jul 29, 2009

Thank you to everyone for your support of the Senate bill. I can't stress enough how important it is to someone like me.

I am going to focus this post on some of the comments/emails that I have received. First, to those people that think I have a lot of nerve posting about money while living in a new home and ordering patio furniture and a pool - I would trade you in a heartbeat for a healthy son and a normal 9-5 workday.

I think some of you are missing the point that all of those things are Kevin's. PAID FOR BY KEVIN. I, personally, don't own a bit of it. My name is not on the house (as it shouldn't be) and I am unable to contribute, which is very difficult for me. I lost everything. I did take part of the donation money and purchased the van for Kevin as quite a few of the donations were for him and it was something he needed. I don't regret that - and I never will.

As to my getting a part-time job - I can't wait for the day that that is possible. I actually loved working. I liked the interaction with my coworkers and I enjoyed using my mind in a beneficial way.

There are a few reasons why I can't go back to work though and the first is that we have way too much traveling to do yet. We are going to San Antonio, TX again for surgery in Sept for a couple of weeks (at least) and then to Houston, TX in the early part of next year for 8 weeks for a TBI study. We are also contemplating an aphasia clinic sometime in the spring too.

I can't see anyone willing to hire me when I am already going to ask for 4 months off over the next 8 - 10 months.

As for me working at home - Kevin would never be cooperative about that. I really try not to focus on all of the negatives of the day, but believe me - taking care of Kevin is no picnic. Matter of fact - it's downright hell 9/10 of the day. He is extremely demanding - to the point where I don't sit down for even a full hour throughout my 18-22 hour day. Not even for dinner. If I do actually get to the couch, it is less than 2 minutes before I am being 'paged' and have to run to do something else. I am really hoping the nurse's aide can make a difference, but today's didn't. He wouldn't allow her near him so I ran all day, while she sat on the couch and watched tv.

Another thing about my time (and Patricia hit the nail on the head with this one), while the caregiver is here - I really do try to get other things done. I have 3 months of unopened mail sitting here because Kevin won't give me time to take care of it. I have to pay bills, clean house and I also try to get all of Kevin's meals taken care of and I make tons of phone calls every day to all of the people that we need to deal with (ie case managers, FRCs, liaisons, sgt this, sgt that, and the list goes on).

And the main reason that the caretaker comes in is actually to give me a rest. I have never once 'rested' and I can't see it ever happening. I currently sleep between 2 and 5 hours a night - I would just love the chance to take a nap, but I just can't do it. There is too much to do.

Here's one thing - therapy. Kevin has two appointments a day for therapy. One in the morning and one in the afternoon - 5 days a week. If I were even remotely able to get a job - who would take him to therapy? He has to be coached to actually participate and I am the only one that knows which buttons to push when - like any other mother.

There is also a little situation called "Extreme Separation Anxiety". Folks - I don't even go to the bathroom without Kevin calling me on the phone because he can't see me. I just picked up the phone and checked and today alone - Kevin called me 17 times and I was here with him almost all day. I only left long enough to grab a few groceries - about 20 minutes. My father stayed with him so that I could run and it was so wonderful to go somewhere alone - something I rarely do.

What some of you may not realize is that Kevin is actually a lot like an active toddler a lot of the time. While I took a shower a few weeks ago, he went upstairs. He must be watched AT ALL TIMES! I cannot take my eyes off of him even for a minute.

I think, because I don't focus on all of the negatives very often, some people are assuming that I am living some kind of wonderful life and I hate to burst the bubble - but my life sucks.

But you know what? I wouldn't trade it for anything in the world because if I did, my son would be gone.

Day 425 - Jul 28, 2009

We had a really good day today. We got a new nursing assistant and both Kevin and I just love her. I think it really made a difference that she is only 25 and could better relate to Kevin than the older set that they have been sending. Those ones always sat and talked to me instead of concentrating on Kevin. It was starting to stress me out because I wasn't able to get anything done because I was constantly having to 'entertain' the nurse. I didn't think that was the purpose so I am glad I called while in PA and had them send us someone different.

Anyway, it was so nice because Kevin even went with her to Subway and he NEVER leaves me. And when he came back he was so excited because she listens to screamo too. I called the healthcare firm and told them to never take her away, lol. Unfortunately she can only come Tues and Thurs though (at least for now).

So to begin telling you guys some of the things that are really bothering me, I first need to ask again for y'all to write your senators and congressmen about the caregivers bill (July 16 post). It is so important because that is one of the major reasons that I am not sleeping. Money. (Doesn't it always come down to this in the end?) I also want to stress that this post is not me asking anyone for money - it is just an explanation into the true financial situation of a wounded soldier's caregiver so that more and more people will help get this bill passed.

Anyway, y'all know that I lost my job. What many of you don't realize is that although I have no income because I have to take care of Kevin - Kevin is not allowed to spend one cent on my needs. It is 100% against the law. I can be audited at any time as to how his money has been spent and I also need to file a financial report with the court system on a yearly basis.

I want to quickly jump in here and say that I'm not talking like I would ever just go out and blow his money - that's not the type of person I am.

But...

This means that if I need food - that's too bad. If I need clothing - that's also too bad. The same with a haircut, my phone bill, my shampoo and conditioner, gas for the car and every other thing you can think of.

I do have some money still left over from all of the donations during the last year - everybody has been so wonderful in supporting us - but the money is almost all gone. I have been laying awake at night trying to decide on whether to do a voluntary repossession of my car. It's a very hard decision to make because it's how we get around. The van is broken down (has been for months) and I can't get the company we purchased it from to come and get it to have it fixed so we truly use my car for everything. But Kevin can't make the payments (and let's not forget the insurance too) and I can't afford to pay it off. I could make the payments for a little while, but that gives me even less time to be able to buy food. It's just such a damn hard choice to make.

And frankly - I resent that I even have to make the choice. I swing between desolation that my credit and livelihood have been destroyed and anger at the Army for not caring enough about their wounded to take care of those that are taking care of their own.

I will say that I had told Kevin that he was just going to have to buy a car and that would have eliminated the problem of us having a way to get around if I did give my car back to the bank, but I learned while we were in PA that the Pentagon can't figure out how to do the expedited discharge so it will be 8-12 months before he is truly discharged (and that's if it really gets started - something that was supposed to have been done many months ago).

I have to be honest here - I had been assured that Kev would have been discharged around the time he purchased the house. Kevin's active-duty pay will not cover the cost of a home in Florida so I had left money in the bank to cover his bills for quite a few months - but definitely not enough to carry this house for a year. Which means that if things don't change - we will be homeless and frankly - that just makes me sick to my stomach - literally.

Now I will say that Breezy is looking for a job. She hasn't had any luck in this economy, but she is looking. Once she gets one, she is already aware that she will have to support me - but geez! Why is it her responsibility to do so? And is she supposed to do this forever? When she has her own family to support is she still going to have to give me money on a monthly basis?

This whole subject just isn't right!

But what are our options? Seriously? We, as caregivers of our own wounded soldiers, can either lose everything to take care of our loved ones or we can put our loved ones into a facility - allowing us to maintain some semblance of a normal financial lifestyle. What a choice, huh?

I guess the Army knows that most of us are going to lose everything to take care of our sons/daughters. Matter of fact - I would lay odds that they bank on it. Saves them a ton of money, doesn't it? I think I read it costs $27,000 a month to put someone like Kevin into a facility. Wouldn't the military/VA system be crippled if we all put our loved ones into a home just so we could buy a hamburger for dinner?

Oh well, I guess it's not going to happen. I am not putting Kevin into a home so I just need to figure out how to subsist on basically nothing. I am so thankful that I didn't have any credit card debt so I only need to worry about essentials and the car payment and insurance (if I do decide to keep it).

So anyway - please! Please! I beg all of you to help us get the word out about this bill. It's Senate Bill S801.

And because I really do try to end the blog on a positive note - go back up and read paragraph one. Otherwise y'all are going to be as depressed and scared as I am...

PS - here is a link to an editorial that the Pittsburgh Post Gazette did on this very subject:

Editorial

Day 424 - Jul 27, 2009

Yay! We made it home safe and sound. Kevin did remarkably well (once again) on the flight and throughout the airport. I am just so glad that you guys mentioned the Injured Soldier Program with the TSA. What a difference that makes!

And I most excited about the fact that we actually get to stay here for a whole 6 weeks or so! That will be the longest we have stayed in one place in many months. We need this, I think. We need to just unwind and get things really unpacked and put away. We just need to get into a routine and live a little - without counting down the days until we leave to go wherever.

And I do want to say I'm sorry that I haven't been writing much while we were home in PA. I will tell you that I have barely slept at all during the last week or so. There were many nights I just didn't even fall asleep. I have a lot on my mind and I plan to share everything over the next few days - just not tonight. I really am too tired to get into all of it and I am so hoping that I can finally get some sleep.

In the meantime though, I need to figure out why my fuse keeps blowing in the garage/pool/outdoor area and do dishes and laundry before I can get to bed. With that being said, I am going to sign off now. Catch y'all tomorrow...

Day 423 - Jul 26, 2009

I am taking another night off tonight because I still have so much packing to do. We are going back to FL in the morning.

Hopefully I won't be so tired tomorrow night to really catch everyone up.

Day 422 - Jul 25, 2009

I am going to skip writing tonight as I did not sleep a wink last night and I am just so tired. I will catch everyone up tomorrow night.

Day 421 - Jul 24, 2009

Wow. This vacation stuff is exhausting, lol. We had all kinds of company again today and tomorrow's schedule is completely packed. How sad is it that I have to schedule our friends in time slots just to fit everyone in?

But, we really are enjoying seeing everyone. A bunch of Kevin's friends came in today and he had a lot of fun with them.

And I think I am just going to show a bunch of photos from the last few days as there really isn't much to say.

This is Kevin trying to embarrass his friend Kyle:



Here is one with him and his friends today:



This one is Evan and his family (Julie often posts on here):



Here is Kevin with Tracy's husband, Jody:



And this is Kevin with Ashten at the Riverfest:



There are so many more, but I am going to give it up for tonight. We really do have a hectic schedule for tomorrow...

Day 420 - Jul 23, 2009

This is going to be a quick post tonight. I am just so exhausted and really want to try to get to bed as soon as I can.

We had all kinds of company again today and then we took a drive to East Brady to visit some more people and then we went to dinner at the Allstars and Kevin just ran into a bunch of his friends outside of Uni-mart. We just got home a little bit ago and I am just so ready to drop into bed.

So I think I am just going to end now and hit the hay. I will seriously need toothpicks to keep my eyes open any longer.

Day 419 - Jul 22, 2009

Thanks for the support, everyone. I was just so angry last night, but like always - I have moved on. There are just too many things to do and feel in a day for us and I can't waste another minute on them.

Today we had all kinds of company and it was mostly a pretty nice day. I went out with my friends from work for dinner and that was about the only time we had an issue. I'm not sure if I mentioned it, but Kevin has extreme separation anxiety. Because we are rarely apart, he gets very upset when I do go somewhere. I had already went out with Moe for dinner last night and when I went to leave again tonight he got very angry. Uncontrollably. I still went because I can't give in to it, but it's hard and Breezy had a very rough couple of hours having to deal with it.

We are working on this issue. It will help that we have an aide coming in now to help while we are in Florida and it will also make a difference having Breezy back home. The problem is that I just really can't afford to go out and do things all the time just to get him used to being away from me. Oh well, I guess I'll figure it out.

So as I mentioned, we did have a good day. Kevin's friend Evan and his family came to visit. So did some of my friends, some of Breezy's friends, both Rebecca and Mike from the PPG came and then Ronnie came and spent a few hours this evening. Matter of fact, he just left a little bit ago. It is just so wonderful to have Kevin's friends come in and visit him. It brightens his whole day up. I sure wish everyone could just move to Florida to be with us, lol.

And I forgot to mention that Ronnie, Kevin and I went to see the new Harry Potter movie yesterday. Kevin is a super avid HP fan and I have to admit that I like them too.

And now to remark on some of the posts from recently:

Jenna - girl - you should have said something at the restaurant. We would have loved it. We always love meeting new people. And I do remember seeing you there, matter of fact Breezy thought you guys looked familiar, lol.

Jesse - thanks for clearing up that the Legion Riders and the Patriot Guard are indeed two different things. I was getting confused, lol. And feel free to stop in when you make it down to Tampa.

Simpleswine - the odds are slim that Kevin will get another promotion any time soon. He has already had 3 in the last year and I was told that SGT may never happen for him. Someone remind me to talk about the retirement another night as it's a whole post unto itself.

Anne V - I will keep your info about the bike club. That sounds like such fun, but you are right - the timing isn't right yet. I'll let you know when it is though. Thanks!

And now I am going to go watch the ceremony on the A-Channel. I recorded it this afternoon so that I could watch it.

Day 418 - Jul 21, 2009

I wish I knew how to start this post. To be honest - I am just very angry that someone from Kevin's father's (and I really use that term loosely) side of the family would post a reason that Tim did not come to the ceremony or parade.

First - Tim's mother told me that the reason that Tim did not come is because he knew that many people in East Brady didn't like him because of what he did to his kids. I will agree with that and can see no reason why people should like him. BUT - that is no reason to stay away. For goodness sakes - grow up! THIS WAS YOUR SON'S MOST IMPORTANT DAY!!!!!

Second - it just makes me spit nails that Tim can't see past himself to do what his children need. Anyone that sends a text message saying "Happy Birthday" to a kid that we know can't read everything really has only his own interests at heart (I mean really! How much harder would a 30 second phone call be?).

Sunday wasn't about Tim's fears or his sudden wish to eliminate stress. What added more stress was Kevin wanting his father there and Tim not caring enough to show up. Especially on a day that Kevin really could have used him.

I actually told Tim's parents on Sunday that we are very tired of opening doors up to them and them continually slamming them in our faces. Numerous times over the years the kids have attempted to re-enter their lives. I called both his grandparents and Tim and invited them down here the last time. I thought both times went decently well and thought maybe they would be there for Kevin from then on. But did either of them ever contact Kevin again? No.

How much more can you all expect us to do? Seriously??

God! You honestly think that I could give two shits whether you are there or not, Tim? I would have felt nothing to see you in the crowd - that's how little you mean to me. But all of the stress that you do cause is only because your kids (for some unknown reason) care about you and are always devastated when you let them down once again.

I am just mad right now! How dare an anonymous family member try to make Tim sound like a paragon of virtue when we all can see the truth!! It's always been one excuse after another and I would imagine every single person that reads this blog has already seen the light!

Day 417 - Jul 20, 2009

We didn't really do anything today. I knew Kevin would sleep the bulk of the day so I took Rigney back to the airport by myself so that he could head back to Germany. Kevin really enjoyed having him here and I am so glad that Nate took the time to come.

I am also very glad that SSG Wilson and Sgt G (now civilian though) came. I only regret that I didn't get to spend any time with them, but Kevin did and that's more important. Here is a pic of the guys:



Tracy and her husband Jody came in and spent the day here with us. It was just a nice, relaxing time.

Ronnie also came in to visit Kevin on his lunch break from work. We sure love that boy!

And I did want to thank three more groups of people that were very important. There will be more, but I am too scatterbrained to think of everything at once, lol.

Anyway, I do want to thank the Patriot Guard and the Legion Riders (please excuse my ignorance if they are one and the same). It was so moving to have them take part in this ceremony (and in the parade too). I will say that as I came through the barrier the riders created on both nights, I felt so overwhelmed with thanks and I realized then the enormity of what had happened and how "big" it really is. Sounds strange, I know, but sometimes you are so busy living it, you just don't realize how unreal or how monumental it all is.

I also want to thank the Riverfest committee for allowing us to be part of the annual event. I know it added a lot more stress to the weekend, but we do appreciate it.

And to get to the photos - obviously I couldn't be taking any. I have a couple here, but a woman name Hallie sent me a link to her photos that she said I could share with everyone here. Thanks so much Hallie! They are awesome!

Click here to view them.

Here are two that I have:



If you read the comments on the blog, you may have heard of Howard the Duck. Here is a photo of him with Rick and Lorraine. Howard made Kevin smile many times throughout the last year.



I wish I had more photos...hopefully some more show up here, lol.

I do want to share the article in today's Post Gazette as well. You can view it by clicking here. Isn't that photo of Kevin and Breezy just so wonderful? (Rebecca - that totally makes up for the photos of me with a towel on my head, lol!!) There is also video of the ceremony that you can view by clicking here and more stories of other families that are going through similar situations.

And now I am going to answer two quick questions from comments that are a few days old.

Linda - I would love a copy of the Derrick if you still have it. I don't have access to that one at all.

Denver - you asked what I meant by Kevin's retirement...Kevin is still active-duty. I am working on getting him medically discharged, but it's quite the time consuming event apparently. I did research this extensively quite a while ago and because Kevin is basically in the VA system already, there is really just no reason to keep him active duty. I am sure there will be questions about this so y'all can just send them along.

And I think I am going to go eat two pieces of cake now (I can't decide between them so what the heck, right?). One from Joan, who makes the absolute best chocolate/peanut butter texas sheet cake and one from miss Patti who makes a white cake with raspberry filling that is utterly to die for! I am just so hungry!!

Day 416 - Jul 19, 2009

As I mentioned yesterday - today was the anniversary of the date that Kevin left for Basic Training. Such a weird coincidence, huh?

And y'all know that Kevin's Purple Heart Ceremony was today. I was just so proud of him. He did so incredibly well at the ceremony and when it was all over he stood there and met all of the people that came down to talk to us. Hundreds of people. They were all surrounding us and to be honest - Kevin really enjoyed it. It just amazes me how well he did with everyone! It was just so nice seeing him remember people he hasn't seen in so long and he was very courteous to those he had never met before.

After the ceremony, we went to a private dinner that the Legion held for us. 130 of our friends and family joined us - sorta. I could tell that Kevin was over-stimulated after we left the field so he and I took a car ride for some down time. At that point, dinner was already a half hour later than it should have been, so we went back to the Legion, but Kevin didn't want to go in. I left him in the car long enough to go in and talk to each of the tables and explain that Kevin had just had enough and that we were going to go home. Everybody ate and by the time I finished saying hello/goodbye to everyone, Kevin decided he was feeling better and he finally came in the door.

He had a blast and so did I. It was so wonderful to see all of the people that were invited and you couldn't have asked for a more elegant and wonderful dinner than what the Legion served. They completely outdid themselves and I thank them from the bottom of my heart!

I also do want to thank Tracy for putting this whole thing together. It would have never happened if it hadn't been for her just taking the bull by the horns and doing it.

I also want to thank Bruce for being the Master of Ceremonies and Captain Turner (with the help of Rigney) for presenting the medal.

And I realize that there are so many more that I need to thank, but I will do it privately.

I have to be honest and tell you that I am just too tired to post any photos so I will get to them tomorrow night.

In the interim though, be sure to check out the article from http://www.post-gazette.com/. There is also video with a whole bunch more photos. I am anxious to read what they have to say tomorrow too.

I also know that Kevin was featured on many different local news channels, here is what I have found so far:

KDKA News - video on right.

WPXI - Channel 11

And now this lady is hitting the hay! I am just so exhausted...

Day 415 - Jul 18, 2009

Kevin and I went to Riverfest tonight and we had such a blast. It was enjoyable watching him interact with his friends and so far I think everyone is handling the changes in him pretty well.

And after we left the field, we actually went to Allstars - a bar. I was so sure we would be leaving within ten minutes because of the noise and the people, but that boy proved me wrong. To be honest - I couldn't get him to leave for about 2 hours and even then he was angry that we had to go. I was proud of him too, because he mainly had soda, but he really enjoyed seeing his friends and dancing and just being that goofy Kevin. Here are some photos:




Did I mention that he stayed there 2 hours? I couldn't believe it!! And he looks so normal in these photos, doesn't he?

And I am sure some of you have already seen the Pittsburgh Post Gazette today - they are running articles both tomorrow and Monday about various parts of our lives. Mike (journalist) and Rebecca (photographer) from the PPG, actually came down to Florida and spent three days with us a week or so ago learning all of the facets of our daily lives. We had an absolute blast while they were with us because they are both just such wonderful people. I can only hope the PPG sends them again, lol! (not to interview us - just for vacation, lol)

Oh and before I forget - someone said one day about that they could tell I was taking a photography class because the pics that day were so great, lol - I have to admit that the professional Rebecca actually took those ones. Darn. I really chuckled over that comment, but never got around to mentioning that they weren't taken by me.

We also went down to the airport today and picked up Rigney, one of Kevin's comrades - starting on Kevin's very first day in the Army - two years ago exactly tomorrow, the 19th. Fitting huh? His Purple Heart is being awarded on the exact date that he left for Basic.

Anyway, Rigney said he remembers so well sitting down at in-processing next to a kid with all this long black hair. Those two went through everything together - Basic, AIT, jump school, Germany and Afghanistan. Rigney was also there the day of the attack. He is such a great guy and I'm glad he is here with us.

And now I need to get to bed because tomorrow is such a big day.

Day 414 - Jul 17, 2009

For those of you that saw my update earlier letting you know that Kevin was not going to participate in the parade - I am sorry. Kevin was not feeling well most of the day, but he took a long nap and when he woke up (not 15 minutes after I posted the message) he wanted to still come to the parade. I hurriedly removed the post, but I don't know who all saw it. (Sorry to the Reeves Gang as I know y'all did - I tried to find your phone number to let you know of the change of plans, but couldn't find it)

Anyway, Kevin did go to the parade and I think he really enjoyed himself. He loves children and got a real kick out of throwing candy out the window. It was just so nice to see all the people we know - even from the car window in the pouring down rain.

We were also interviewed by KDKA and you can see the story and watch the video in the right column. Click here to view it.

And on a kinda sad note - it's very hard tonight to be sitting here and not out having a good time with my friends. Riverfest weekend is always so fun and I so wish I could be out with Moe and everyone else having a good time, but I guess those days are pretty much over for me. I can usually handle it in Florida because I don't really know anybody there to go do things with, but here in PA - I miss my old life. I miss the freedom of just jumping in the car and going for chinese, or dancing the night away at the Allstars and the Cloud or just any of the multitude of things I once had the freedom to do. I am just so jealous that all my old pals are out having a blast tonight.

But I guess I just need to get over it and as my favorite Airborne commentor says - wipe the sweat and drive on!

And now I am going to leave you with a photo of the kids while they were sleeping on the plane. It's just such a wonderful photo, huh?

Day 413 - Jul 16, 2009

Kevin did so well again on the flight. I was really worried because this flight was just full of kids, but he really handled it well. I have to admit that it wasn't as 'fun' as the last flight, but how could it be, right? LOL!

And I wish I had the energy to write more, but I just don't. We have traveled all day and we also had a run-through of the ceremony to make sure Kevin could get up on the stage.

So now I am going to do something I haven't ever done before. The Wounded Warrior Project is asking for help to get legislation passed to help people like me earn a living while taking care of our family member, as opposed to losing everything we have worked our whole lives for. I am going to copy the email and paste it here in the hopes that some of you can take the time to send a letter to your Congressman.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

WWP NEEDS YOU TO MAKE THREE CALLS TODAY TO HELP PASS LEGISLATION TO ASSIST OUR MOST SEVERELY WOUNDED WARRIORS AND THEIR FAMILIES!!!

Background: WWP’s top priority this year is for Congress to pass legislation to establish a national program to compensate, train and provide ongoing supports to family caregivers of our most severely wounded warriors. Our advocacy helped win introduction of landmark legislation in both the Senate and House of Representatives to establish a family caregiver assistance program for these warriors. While the Senate bill (S801) won committee support and could come to a full Senate vote in the coming weeks, the House of Representatives version of the legislation has not gained needed momentum, and is being overtaken by a much weaker bill that DOES NOT include Caregiver Compensation. Compensation is the most vitally needed area of support for these families and must be included in any caregiver support measure.

YOUR HELP is needed to build support for this critical House bill and thereby help win passage of the strongest possible caregiver legislation this year.

Action: We urge you to contact key Representatives and your individual Representative by:

1. Calling their offices today, and again during Family-Caregiver National Call-InWeek, July 20 through 24; AND

2. Sending a letter to your Congressman. You can use or adapt the text of a sample letter on our website at www.woundedwarriorproject.org/caregivers

Calling your Representative:

1. Call Congressman Bob Filner (D-SD), Chairman of the House Veterans Affairs at (202) 225-8045 and using the talking Points below ask that Chairman Filner ensure that family caregiver COMPENSATION is included in the Caregiver Support legislation that will be approved by the Veterans Affairs Committee.

2. Call Congressman Michael Michaud (D- ME), Chairman of the House Veterans Affairs Subcommittee on Health at 202-225-6306 and using the talking points below ask that Representative Michaud ensure that family caregiver COMPENSATION is included in the Caregiver Support legislation that will be approved by the Veterans Affairs Committee.

3. Find your Representative by zip code: http://www.house.gov/zip/ZIP2Rep.html.

4. Call the US Capitol Switchboard, 202-224-3121, and ask to speak with your Representative’s office.

5. Using the Talking Points, below, ask that the Representative to co-sponsor HR 2342.

Talking Points:

1. I am a wounded warrior (family caregiver of a wounded warrior/ concerned citizen), etc.] and I’m calling to ask that Representative _____ take immediate action to provide family caregivers of severely wounded warriors with COMPENSATION, health care coverage and respite opportunities to sustain the care these warriors are receiving.

2. Family members whose loved ones are severely injured in Iraq or Afghanistan have given up jobs, lost health coverage and other benefits, and depleted savings to provide them full-time care. They have often taken on this burden without any help from VA, despite the emotional, physical, and financial strain caregiving takes.

3. We must IMMEDIATELY provide these supports or my fellow wounded warriors will end up nursing homes and institutionalized for the remainder of their lives.

4. I hope wounded warriors and their families can count on Rep. _____ to take up this call for action.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Tomorrow night Kevin is in the Riverfest parade so if anyone is in the area - we hope to see you there!

Day 412 - Jul 15, 2009

I won't be able to write much tonight as I am still packing and doing laundry and dishes and everything else necessary to go away for a few days.

I do want to say that if you want a "KEVIN" T-shirt, you can call Tracy at 724-526-5959 and she will be able to help you. She did tell me to tell y'all that there are only larger sizes (XL and up) available.

Also, someone asked if they could take pictures at the ceremony and the answer is yes. I hope to see some that you guys take.

And now I am signing off. Wish us luck on our flight tomorrow!

Day 411 - July 14, 2009

Not much really happened today. I took Kevin for a haircut because he was starting to look like the old skater punk from the past and I just didn't think it fit the occasion for Sunday. Once that's over and he's 'retired' from the Army, he can do whatever he wants.

And that's about it. I met with the pool guy today to get the landscaping down and the fencing down and the outdoor kitchen down and the alarms down so that the pool is 100% complete upon our return. He assured me it would be!

We didn't have therapy today because it is closed on Tuesday. What a bummer, huh? But tomorrow we are back in the groove.

And now I am just going to answer a few comments real quick.

Cathy M - I got the book! I still haven't unpacked The Shack or My Stroke of Insight so I will try to grab it before we head to PA. Thank you!

Jessica - yes, Kevin's medical coverage will accept civilian hospitals. It is my goal to find a neurosurgeon that is not a resident so that we 'keep' him for years and not get a new one every 6 months. I think that is a vital key to Kevin's shunt/brain damage situation.

Kathy in IA - I didn't let Kevin's license lapse due to the date - I could have renewed it online, but I did it because he has lost all the vision from center line completely to the right (in both eyes) and he will more thank likely not be able to drive again. That was such a hard thing for me to do. It still hurts and I am starting to cry about it again so let me move on.

Actually, I really need to get to bed. I will try to hit some more tomorrow night.

Day 410 - Jul 13, 2009

YAY!! Kevin did so well at both bouts of therapy today!! He went with no problems today and he had such a good time - both in the morning and the afternoon! It didn't hurt either that his physical therapist is from the Pittsburgh region, lol. I seriously think it is (in part) because of us being able to leave 15 minutes before it starts as opposed to an hour and fifteen minutes ahead of time. And once we get there we just park immediately right at the door - no driving around for a half hour looking for a spot. I am just so excited! He worked hard today and I feel like good things are going to come out of this!

I didn't mention to you guys that Kevin so desperately bought himself a pedal bike last week one day (we walked around every dept in Target for about 15 minutes trying to find it because I didn't understand what he was looking for). I think he remembered BMX so he bought himself one of those little 20 inch types of bike - something from his past. So anyway, I was so worried about him trying to ride it because realistically he's just not ready for that yet. So I had my mom and dad stay until he tried to get on it (just in case he fell) and he tried and tried, but he just couldn't figure out how to even get on it. It was very hard for me to watch him get so upset because of his limitations. After he couldn't get on it he just went to his room and shut the door. I just pushed it into the den that is empty and put it out of sight.

So now we are going to work on him riding a stationary bike at therapy and he will also use a treadmill soon. Hopefully he will get to the point where he can ride because I love to go bike riding. I really am so very excited - and so is he. He came right home and told Breezy that he LOVED therapy!

YAY!!!!

So now I want to just quickly mention that I hope everyone does get to come to the ceremony. It really is just the length of the show that I am worried about. I think Kev is going to get a kick out of being the center of attention - but only for so long.

And someone did ask for directions (I remember it being in my inbox, but I don't remember who - sorry) and if you are coming from Pitt/Butler/Kittanning you will come over the bridge into East Brady, come the whole way down Main St, start up the hill and make any right turn. Go to the end of whichever street you choose and you will pretty much be there, lol. There should be Riverfest signs that can be followed as well.

If you are coming from Rimersburg - come down the hill and take the second left. Go all the way to the end of the street and you will be there.

And just to put it out there - if you have a "KEVIN" shirt - feel free to wear it that day. I think I heard they are trying to get everyone to wear one.

Day 409 - Jul 12, 2009

The party went great! Kevin enjoyed himself, but I do admit that he spent quite a bit of time in his bedroom because there were so many people here and it was a bit noisy for him. But he did come out intermittently and he really did have fun when he did. As you can see, he did eat well:



It was a very nice party and it was so great to see everyone. It's so weird to basically 'live' with a group of people and then bam! You hardly ever see them again.

I am hoping now though that we can all get together more often. There are a couple of scrapbookers in the midst so we may get together and scrap. That will sure be fun.

Moving on - before I forget - I want to touch on a subject that will probably offend some people and it really isn't my intention. This is in regards to Kevin's Purple Heart Ceremony and the fact that it has become a HUGE event - too huge for Kevin's stimulation situation.

A couple of weeks ago I saw that there were more and more organizations that wanted to be part of the ceremony and when I talked to Tracy - I will be blunt - I told her "NO MORE". It is nothing against any organization or person - it's truly all about Kevin. I am so incredibly nervous about the length of time that the ceremony is because Kev really can't handle it all (today proved it). The last thing I want is for Kevin to miss his own ceremony and I think at this point it is a very real possibility.

So I just want to say that if Tracy is having to tell you that you or your organization really can't be part of it - it's because I asked her to and I am very sorry, but it's so necessary if Kevin is at all going to have a chance at making it through his own ceremony.

I sure hope we get to meet the people that comment here on the blog and my message is in no way geared toward people witnessing the event, it's just about keeping the actual ceremony as short as possible.

I truly hope everyone understands.

And to touch on a few of the comments from the last few days - first to Barbara B - I didn't realize that you meant his appearance but believe me - I do see the changes there. I must say to him fifty times a day "I am just amazed at how great your chin/neck etc look". I really am amazed too. I never (in a million years) thought that he would look this good! And don't worry Barbara - I wasn't mad or upset.

I also totally relate to the 'diva' comment. Kevin demands so much on a daily basis and it all must be done NOW. He doesn't understand patience and I am now working on him getting up and doing things for himself. He just doesn't get it though, but I'm still trying.

And so far he says he will go to therapy tomorrow so we shall see. I have often used the 'ordered to go by your commanding officer' line, but let's be real here - there is no real military presence here and it's even worse since we are home. It just doesn't wash.

There is more that I want to say about this, but it will have to wait until a different night as I am just too wiped out to delve into it.

And now I am going to leave you with two more photos. Notice the concrete has been poured around the pool? They assure me it will be COMPLETELY done by the time we get home from PA.

Day 408 - Jul 11, 2009

Unfortunately I am going to have to skip writing tonight. We are having a party tomorrow and I still have a bunch of cooking to do.

Hopefully we will have lots of photos to show you!

Day 407 - Jul 10, 2009

First, let me tell you guys why I decided to hold off on the last bunch of surgeries. It's all about the Botox. You can only have it every three months and because Kevin goes literally spastic when you mention that word - I have decided to sneak it in while he's under for the final surgery. We did manage to sorta sneak it in this last surgery too (and after telling him about it, Kevin was so sure that's why he was so weak afterward and he absolutely refuses to discuss another treatment). So, September will be 3 months and if we are going to get that arm in any way straight - we have to have more Botox.

Personally, I think we need the break too. My body just hurts from all of this traveling and I think we could both use some down time with some sort of routine.

And speaking of routines - Kevin starts his therapies at the new place on Monday! YAY! We go at 11am and again at 4pm. One great thing is that this place is closed on Tuesdays. It will be really nice to have 3 days off a week.

And to be honest - I can only hope that he will even go to therapy. Barbara B - you just wrote that you think I might be too close to enjoy the changes and improvements. If only that were true. I am always just so happy when great things happen and y'all know that I tend to focus on the positives, but frankly - we have hit an extremely rough behavioral pattern. Kevin is pretty much refusing to go to therapy (or do a lot of the things that he needs to do). Sometimes I can get him to go, but if he won't - there's just nothing I can do. First, because he's bigger than I am. And second, because if I could force him it would be stripping him completely of the last shred of his independence.

Today would be a prime example. Yesterday he would not go. PERIOD. Today I did manage to get him to the hospital and by the time we parked and got in there he was in a VERY bad mood. Once the therapists came, Kev did a word search puzzle and when the OT tried on a new splint and it hurt, Kevin just turned his chair around and left the room. Actually he completely left the building. The therapist followed him outside while I grabbed some equipment that we needed and he was already standing up (she must have stopped the wheelchair from moving) and literally pushing her against the wall to try to get around her. I'll be honest - I can't keep up on foot with someone in a wheelchair - it goes so much faster than I can and he has been known to leave and go out into the road. Frankly - if things don't change someone else is going to have to start taking him to his therapies because I honestly just don't know how to deal with him most of the time anymore. He has become very stubborn and rude and just flat out uncontrollable. You just can't imagine what it's like to be with someone 16 hours or more of the day and you only have maybe 1 or 2 (if you're lucky) hours of laughs and good times.

And believe me - I do see the changes. And I do see that his cognitive state has improved tremendously since we went back to PA the last time. But today (and most days lately) the bad behavior is starting to outweigh the good.

So keep us in your thoughts all weekend about the new place. When we went down the other day, Kevin went in for about 2 minutes and then he got mad (for no reason taht we could see) and went outside to the car. He sat there the whole time I was discussing the necessary things with the new therapists and just called me on the phone repeatedly. I just don't know what we are going to do if he won't go to this place either...

Day 406 - Jul 9, 2009

I am so tired tonight so I am just going to leave y'all with a bunch of photos that were taken this week. I just couldn't sleep last night at all - I was so upset about Kevin 'losing' his driver's license.

So anyway, the first photo here is of Kevin buying ice cream from the truck that drives around town almost every night. This was the first time we were able to catch him! Kevin was just so excited - like a little kid!



This one is Kevin with Maritza (Joel's mom). They sure love each other!



This one is a picture of Kevin with Joel.



We had went up to the ward the other day to visit everyone as we haven't been there in so long. Everyone was so excited to see the changes in Kevin and I know we were both excited to see the people that have been our family for so long. I sure miss V and Maritza and Grisel and Dena - and truthfully - so many others that were such a part of our life. We are having a little belated birthday party on Sunday for Kev and Breezy so hopefully we get to see some of them then!

And as a reminder to myself to tell y'all about it - I have decided to hold off on the other surgeries until September. I will explain tomorrow night though as I really am just so exhausted.

Day 405 - Jul 8, 2009

Today was such a very long day. I had a meeting at the hospital with the whole team so that we could resolve some issues that we are having. The first one being the neurosurgeon situation. Y'all remember that I am not happy with the neurosurgeons at the VA hospital so we discussed us going out and finding a neurosurgeon in the Tampa community, not associated with the VA hospital. I should have a list very soon of neurosurgeons in the area for me to 'look into'.

The second issue is therapies. I think I have already touched base on the fact that Kev just can't tolerate back to back therapies and we are going to start going elsewhere for OT, PT and Speech. I stood firm and hopefully we can start going to the new place by Monday.

I also had a little breakdown today because I left Kevin's driver's license lapse. This was very hard for me to do. It's not easy to see your son lose even more of his independence and I HATE the fact that is was me that had to take that away from him. It really just isn't fair that my son is 21 years old and will probably never be able to drive himself anywhere.

We also discussed Kevin's pain issues and we are going to take another cat-scan to make sure everything is looking okay up there and then we will know better if we need to adjust his meds or whatever.

And getting back to the home health aides...we have an aide come in in the mornings to help Kevin get a shower and put his burn garments on and so far I am not doing too well with it, lol. I am trying to learn to allow her to do the work, but it's so hard to do after having done it myself for so long. I have this little routine of sorts and I keep stepping around her to do it.

We also have a man come in the evenings so that I can get out for a little bit, but I won't leave until I know that Kevin is comfortable with him. I did tell Kevin I was going shopping tomorrow night and he seemed okay with it, but tomorrow will tell. I struggle with him as much as I do with her - I am just not used to having someone in my house and doing things I always do. I'm working on it though and I will get used to it, lol.

And now I am just going to touch on some of the comments/questions about the pool.

I am aware that a fence needs to be put up, but it can't be done ASAP because they still need to get the trucks in there. The pool is still being built and I assure you - no one is seeing this old body in a bathing suit so a fence is a necessity!

As for the screen enclosure - that is also ordered, but the screen does not protect you from the sun - just the bugs and alligators.

And now I am off to just lay here and do nothing...

Day 404 - Jul 7, 2009

I am actually going to skip writing tonight because I am just so tired. I will tell you that we had a home health aide come in this morning and this evening (4 hour slots) and it was kinda strange - helpful but strange. I will talk more about it tomorrow night though.

Sorry everyone, but I really am just tired...

Day 403 - Jul 6, 2009

Yep. Today my baby turned 21. I cannot believe that I am old enough to have a 21 and a 25 year old! Where in the heck did all the years go? Seriously?

So we didn't really do much today. We got up and went to check out a new location for Kevin to go to therapy. The hospital is not really working for us because it's too far for me to drive to more than once a day and Kevin can't handle all of his daily therapies back to back. It also takes at least a half hour to find a parking spot and that stresses both of us out. So we found one closer and we are hoping that we can work the schedule out that we go in the morning and again in the afternoon.

After that we did a little shopping at Wal-mart and hit Subway (of course) and then came home and rested for a few hours. We had to go to WM to buy a bottle opener because Kevin wanted to have a beer today and I had no way to open the bottle. Here he is drinking his first "legal in the US" beer (In Germany you can drink at 18 so he has already drank legally in Europe, lol):



I am so glad because he only took one sip and didn't like it. Thank you! He really can't drink with the medications he is on.

And I am going to leave you with a photo of the pool as of today. Breezy should be here any minute and I want to be finished so that I can help her unload the car. Anyway, here is the pool - so very unfinished. They did come today and even out the dirt around it so they might be pouring the decking tomorrow? Who knows, lol.



And thanks everyone for the umbrella suggestions. I did order 3 of them today and I got a better deal on some of the furniture. It will take 4-6 weeks for all of it to be here, but that's ok. We won't hardly be here anyway. We leave in 10 days to go back to PA, come home to FL for a couple of weeks and then head to Texas again.

And I just heard my daughter so tootaloo!

Day 402 - Jul 5, 2009

Kevin has sorta been feeling better today. He didn't throw up anymore, but he has been in a lot of pain in his head today - even taking pain meds all day long. He still doesn't have a build-up of fluid so we will just wait and see what's going on here.

I have noticed his head has been hurting more lately. It's either that or he is becoming 'accustomed' to his Fentanyl patch and will need to try something different for a while.

I have also noticed that he has been forgetting things sometimes for the last few weeks. It's not all the time, but once in a while he will take his meds and then 10 minutes later ask for them again. He never used to do that so I'm really not sure if there is something to be looking at or not. At first, I kept thinking I was just imagining it, but he really is forgetting more and more. I sure hope it's nothing...

And today, my mom and I went shopping for patio furniture. The pool isn't complete yet, but I want to have the 3 large umbrellas ready for when it is (strategically placed to span over the pool so that Kevin is not in the sun while swimming). We need to get a dining set and a seating area as well and you would've all just died to get the price quote. It was over $13,000!!! I would lay odds that everyone in the store heard me gulp and you can bet your bottom dollar that we nearly RAN out of there!

I have a feeling that I am going to have to order the umbrellas from there though. They were almost $1000 a piece, but I waited too long and am not sure I can find 3 of the same style in any low-end stores at this point. I could so kick myself because I almost bought them 2 months ago, but I talked myself out of it. Grrr!

So anyway, I am now skirting Ebay and various other sites. Wish me luck on this!

Day 401 - Jul 4, 2009

I hope everyone had a great Independence Day! We had a nice barbecue with my parents and that was about it. Kevin went to sleep very early tonight - so no fireworks for us, but he woke up vomiting a while ago. My first instinct was 'shunt malfunction', but I am not seeing the swelling of his head yet. Man, I sure hope that isn't it. He didn't seem groggy when he woke up and usually when his shunt does quit working his eyes are glassy and he is kinda out of it so maybe that's not it.

I guess we should all just keep our fingers crossed that it's just something he ate or just some little bug and not the signs of something major.

And I'm going to cut this short because it is very late...

Day 400 - Jul 3, 2009

YAY!!!!

Kevin did so well today on our flight! It was like being with someone almost normal and I am just so dang proud of him! I must tell you too, how awesome Southwest Airlines was with us today.

First, at the airport in San Antonio, the clerk came over and talked with us for about 10 minutes or more and then he made an announcement just before boarding asking everyone to give a standing ovation to a war hero - Kevin. He told the tale of Kev being in the hospital for a year and how this was his first commercial flight. I started crying like a baby! Kevin (of course) ate it up.

We then boarded first amid all this cheering and the crew asked all the familes with children to go farther back the plane so as not to over-stimulate Kevin.

During the whole flight the stewardesses spoiled him rotten and when they learned it was his birthday on Monday they got on the horn and had the whole plane sing "Happy Birthday" to him.

When we were getting ready to land, they got back on the microphone and asked everyone to sit until Kevin had departed and then asked everyone to remain seated until all of the rest of the military personnel had deboarded.

And when we did depart from the plane, we had to wait for them to get his wheelchair and while the rest of the people from the plane got off and walked past - almost all of them said either "Happy Birthday, Kevin" or "Thank You For Your Service".

I can be honest and say that I was very heart-warmed to see a group of people care so much about a stranger. It was just an all around great flight and I am so thankful that we chose Southwest. And I am so thankful that Kevin could handle the flight and I feel like it's another hurdle jumped.

Lookout World! Here we come!!!

Day 399 - Jul 2, 2009

Yep - today is Breezy's birthday. We went to a nice dinner and truthfully, that's about it, lol.

And yes - Breezy has decided to come home to FL with us. She will be driving back tomorrow, once we leave for the airport. I worry about her driving over the holiday, but she is 25 yrs old now and I guess I could cut SOME of the strings, lol.

And I took some of the advice from the blog here and called TSA and after numerous attempts found someone that knows about the Injured Soldier Program. I set it all up for tomorrow and for our flights in a couple of weeks. Thank you so much for the info, Sue! (and anyone else that mentioned it)

And that is pretty much it for tonight.

Pam - we did come over to say goodbye to you but you were unavailable. Sorry - but we'll be back next month!

Janet - it was wonderful seeing you again and we will have to get together next month as well.

And tonight I am going to try to get to bed early as tomorrow is going to be a very hectic day! Wish us luck! I am just so scared because once we are in the air - there is just nothing we can do...

Day 398 - Jul 1, 2009

Kevin and I actually managed to sit through the whole Transformers movie today! I was amazed because he usually can't sit through something that hectic.

I am really struggling trying to get him to go to therapy though. I sure hope he is better once we get home. We start back on Tuesday and he really needs to get back into the swing of things. I think it's just hard because we have been traveling so much that there has been no schedule of any kind.

And we are going home Friday on a commercial flight. Man, I hope this works! I am very nervous about it - please just don't let there be any screaming children on that flight! And please no delays! I know the weather has been terrible in Tampa so we can only hope!

And now I am going to go watch some TV on my computer. I am so glad ABC shows can be watched online!