Day 299 - Mar 26, 2009

It turns out that Kevin has BPV - or vertigo in more simpler terms. We finally were able to see the ear specialist and they pulled out so much dried blood, puss and wax that Breezy was appalled. (I have been trying not to go in this week so I missed this appt too.) Anyway, they did find that he has vertigo and it could be months before it goes away.

We are still going to have an eye appt, even though the vertigo is probably the cause of his blurry vision, and it is scheduled for Sat afternoon. (sorry Diane - gotta pick you up at the airport and bail on you for a while).

We have also decided to go back to Texas for his neck surgery. We may have his eyes done there too - not sure yet. I have already asked the powers that be to start planning this as the surgery really needs done soon. Kevin really can't hold his head upright because the skin is so pulled on his chin/neck. It also makes it very hard for him to eat and he drools constantly because his lower lip is pulled down so far.

And after some consideration into the right plastic surgeon (thanks for the emails from everyone with their suggestions) I have decided to go with Operation Mend out of UCLA. This is an organization that works with wounded soldiers. I am not sure when that will happen, but I would think it will be a little while yet.

And to Holee and everyone else that asked - yes - the Botox is working wonderfully! Kevin's arm has been so relaxed and his hand is even open most of the time. OT has been able to really do some work with it and even Kevin is excited about it. Tonight he had Breezy and I hook up his XBox. He gave it his best shot, but you really need two hands to play it. It did bum him out, but we got him busy with something else.

And anonymous asked if we are leaving the hospital to an outpatient status and the answer is yes. We are rarely there now - only for therapies truthfully - so I see no reason to keep him in. He always hates having to go back every day and I have seen him come so far since staying at my parents' apartment. So now I need to find us a place to live until the house is a done deal. I am hoping there is something at this complex so we only have to move into a different apartment here. I will find out tomorrow, hopefully.

Kris - you asked about Alan and from what I know I believe he is doing well. I haven't mentioned it, but Breezy and Alan split up a few weeks ago. I wish him the best as he is a good kid, they just weren't right for each other, I guess.

And now I am heading to bed. Tomorrow's Friday - yay! We love the weekends!!

Day 298 - Mar 25, 2009

Breezy took Kevin to the hospital for his therapies today and I got to sleep until 3:00 this afternoon! I did get up with him this morning and gave him all of his meds and his shower and then they left and I crawled back into bed. How nice it was!

And from what I am told Kev had an awesome day with all of his therapies! Matter of fact - here is a pic of Kevin on his skateboard. Breezy told me he was so excited to be back on it and was even trying to do tricks!



I guess the kids went to visit Joel today too and the boys were singing Soulja Boy and rapping to the beat. I am so sad I missed it!

And before I forget - a couple of people asked if Kevin's shunt is working fine and it is. That is definitely not the issue. We do have an eye appt now on Tuesday and we are still working on ENT. I just have a funny feeling it's his ears.

And I just came across a pic that I never put up and that was from back in Feb when Kevin was in ICU. This is with my brother, Matt. You can tell Kevin had just had surgery because the oxygen tube is in his nose.



And now I need to get the kitchen cleaned up. I cooked a nice dinner tonight and left the dishes to watch a movie with Kevin. Time has run out for me and I need to get them done.

Day 297 - Mar 24, 2009

Something seems a little 'off' with Kevin the last few days. He keeps getting very dizzy and just 'strange' every now and again. Add to that the extreme mood swings and him complaining of blurry vision and I just feel something is wrong. I ended up going in today because Breezy was worried and I stressed that we need to figure out what is going on. It could just be an ear thing and then again it could just be the way it is. Anyway, hopefully they will actually do something and try to figure out what the problem is.

I have to admit that I have lost all faith in this hospital. I'm not going to go into all of it right now, but I feel that it is a very unsafe environment for someone in Kevin's position. Someone that is doing very well - but isn't quite all there mentally or physically.

So Michelle (our case manager) and I chatted today about us getting a 'real' apartment until the house is actually ours and ready for us to live in it. I think it's the best idea for us. We pretty much stay at the apartment most of the time anyway, but my dad is coming on Tuesday and it's just not big enough for my parents and us too. Kevin requires a lot of 'quiet' time also and when you add more people to the environment - it gets less and less quiet - no matter how hard you try to make it, kwim?

And now I am heading to bed. I still hurt a lot and sleep is so blissful...

Day 296 - Mar 23, 2009

Kevin had a pretty good day today and then he wanted to stay around the hospital tonight instead of going to the apartment so that's what we did. It suited me fine as I still don't have a lot of energy and decided to go with him today and let Breezy take care of him tomorrow.

I did leave him early though and am planning to take a pill and go to bed pretty quickly. Breezy is with him now and she will just go in tomorrow morning leaving me to sleep the day away if I can.

Hopefully I will feel better soon. My friend, Diane, is coming this weekend and I need to be in top shape to keep up with her :-)

Well, off to la-la land for me...

Day 295 - Mar 22, 2009

Hi everyone. Thanks for all of the well wishes and to be honest - this is going to be incredibly brief because I am still in a lot of pain.

First, I am guessing I have a kidney stone. I have had them before and it feels about the same. I was in the hospital until 5am the other night and they said they don't see anything wrong. Since then, I have been told that this hospital never finds anything wrong, but I am going to just have to assume it is a kidney stone and go on. I don't have insurance and I am sure that visit cost thousands of dollars so it is not an option to go to a better hospital.

As for us taking vacation time - we are not allowed to. It turns out that Kevin needs approval to take any leave as he is still active duty. I am not even going to say out loud what I think about this.

So, Breezy is going to take care of Kevin the next few days and I am just going to stay home and do nothing until the pain goes away. There really isn't anything more I can do.

I am also going to quickly say that the postings will probably be sporadic at best. The pain pills I am taking knock me out completely and sleep feels better than anything right now. So, I will try to write tomorrow - but can't guarantee it.

Day 294 - March 21, 2009

Hey it's Breezy again. I flew in this afternoon and since then mom has been sleeping. They told mom they could not find anything wrong with her. I just hope that means she will start to feel better soon. Well I just wanted to keep everyone posted. Thanks again.

Day 293 - March 20, 2009

This is Breezy. Mom is very sick and in the emergency room. She will be writing tomorrow she said. I will be flying back tomorrow morning. Please keep her in your thoughts. Thanks.

Day 292 - Mar 19, 2009

We put in for vacation today, lol. Yep - I told the doctors that we won't be in next week. Kevin is getting more and more disgusted and frustrated by everything at the hospital and frankly - I don't blame him. He is back to being sad and when I discussed us taking some time off from the hospital his eyes just lit up and he was nodding his head so hard I just had to laugh. So, that's what we are doing. We ran some tests today (CT and other scans) to make sure he is ok to take time away and I think all will be fine. Truthfully, I think we both need the break.

We also worked on something today. We decided to go to the apartment again tonight and he and I worked on him getting out of his chair and into a normal car seat. I think we are going to need the van for quite some time, but it's not something we will always need to use. He had no problems whatsoever getting into the passenger side and tomorrow we are going to actually go for a ride and see if he can handle it. We just don't know if he will get motion sickness riding up front or not.

And I want to answer a question that I received in a comment. Kathy M asked about Kevin's head being more rounded when swollen because she thinks it looks rounded now. If you go and click on the picture of Kevin sitting on the stairs (the close-up) and you look right above his ear - you will notice that it is very sunken in right there, almost an inch deep. It's not swollen anymore at all and that's what makes it even more pronounced.

As to what the Botox will do - hopefully it will loosen the muscles so he isn't so spasmodic. His arm is in a constant spasm and they are hoping it will release enough to be able to be stretched and straightened. They tell me that he may need to have treatments more than once and I sure hope not. It must have been pretty painful because he cried during the shots.

And now I need to get signed off. The electric went off a while ago and I have been working from battery back-up and it's nearly done. (btw - that was a totally dumb comment - I'm sure the rest of you realized that if there's no electric, then there's no cable and if there's no cable, there's no internet and that means there's no posting - duh!).

Needless to say - the electric is back on now, but I am still doing to sign off, lol.

Day 291 - Mar 18, 2009

Today was kinda a frustrating day. First, Kevin was kinda grumpy because he didn't get much sleep last night. It turns out that he had called the nurse for something and nobody came. I am told that it really upset him and he was restless for the rest of the night. I have to admit - that makes me mad. I allowed the sitters to be canceled (actually I requested it) knowing that the nurses would respond when called and I told the head nurse today that if a nurse is busy and nobody can back her up and check on a patient, then we will put the sitters back and they can just sit in the hallway until needed.

It's actually sad because the same thing happened yesterday afternoon and I really thought that that would be the end of it. Yesterday I called Kevin and told him that I was on my way up to get him and he needed to call the nurse and get in his chair. Well, he called the nurse, but nobody ever showed up. So, Kevin took it upon himself to transfer to the chair on his own and he spilled his water everywhere and it's just amazing that he didn't fall on all the water on the floor. The even more aggravating thing is that they wanted to start using the bed alarm and I told them 'no'. Why should Kevin be penalized because the nurses can't back each other up? I don't think he should feel like a jailed criminal if he moves too much on the bed. The only thing that needs to happen is that the nurses need to respond when Kevin (or anybody) pushes the call button. I think it's just crazy that if someone is in need - and it could be an emergency - too often nobody even bothers to show up.

So I did talk to the head nurse, but I really don't expect a change. I did tell her that if it happens one more time the sitters will resume and I don't care what it costs. I guess we'll see what happens, huh?

And on other frustrating events - I went the whole way out to MacDill Air Force Base for my appt to meet with JAG and I wasn't even allowed to talk to anyone. It turns out you need a military ID to talk to a military attorney and that's something I just don't have. So I wasted the whole afternoon (it's almost an hour away) and left Kevin alone while he wasn't feeling that great for absolutely nothing. Grrrr!

So once I got back I told Kevin we were out of there and we loaded up and went to my parents' place. We aren't going back until tomorrow morning because we both really needed to get away.

Now he is sound asleep and I think I am going to go scrapbook for a little while.

Oh - I forgot - Kevin got his first Botox treatment in his arm today. Hopefully we will see a change as early as tomorrow!

Day 290 - Mar 17, 2009

Today was kind of a blah day for Kevin and I. I don't think either one of us felt good and we both just kinda lay around all day. We did go to the mall for a bit after all of his therapies because I needed new sneakers in the worst way, and once we shopped we both went home and took a nap. We got up in time to head back to the hospital where Kevin pretty much went right back to sleep and I headed back to the Fisher House.

So...that basically sums up our very boring day. I think I am just going to stop here and get to bed.

Day 289 - Mar 16, 2009

You will not believe what my son did today! Here, let me show you:




Yes. We had went to the house we are buying and I was in the kitchen looking at something and I heard the click of Kevin's seat belt being undone. I know him well enough to know that that meant trouble. With a capital T. I ran to the stairwell leading to the second floor and there was Kevin already standing up on the second step! He was so determined to see the second floor that I had to follow him up the stairs just to catch him in case he started to fall. I allowed him to rest his body on mine with each step and let me tell you - he did it! I was scared and proud of him all at once. And you should have seen his face when he made it to the top! He was just grinning from ear to ear until he realized he had to come back down! But he sat on his butt and bumped down each step until he stood up at the bottom and got back into his chair. I tell ya - he is gonna be the death of me yet (have I not been saying this since he was born?)!! Hopefully this will alleviate any more curiosity of the second floor. (these pics were taken with my phone as I was not leaving him alone up there to grab my camera)

And my meetings went very well today. Dennis, one of the VA guys, is truly such a great help. He offers insight into things that I truly just wouldn't even think of. George, one of my realtors, is the same. We all know that this has been such a trying time in purchasing a home, but these two have done so much to make it easier on me. I thank them both - truly.

Kevin did seem to do well on his own today too. He is getting into a routine of sorts and it's working out well for him. For both of us really. Unfortunately I have to leave him for a while again on Wed to meet with JAG on some legal issues so hopefully his therapists will keep him busy.

Well, it's off to bed for me!

Day 288 - Mar 15, 2009

It was just like old times tonight. We were cruising down the road headed back to the hospital and I am in the front of the van (car) listening to my music and Kevin is in the back seat (chair) listening to his iPod. He was just dancing and singing along with whatever music he listens to, lol. It was just so funny to me.

Today was truly an absolutely perfect day. We did nothing. And I mean NOTHING! We woke up at 9 and I gave him his shot and the rest of his meds and then we both went back to sleep until noon. We then got up and had breakfast/lunch and he watched movies and I cleaned a little bit. Then we both took showers and still just laid around.

At about 5:00 or so we virtually went to my mom and dad's going away party at my aunt Mona's house. Yep - we skyped with all of the people that attended and it was so nice being able to see everyone!! It was a lot of fun to hear all the noise of our family get-togethers! And wow - have the kids all grown!!!

So I want to tell everyone that yesterday Kevin and I had a long talk about Tim. I did tell him that his dad was there for about 3 weeks after he was hurt, but that he hasn't really been around since - at least not in any way that counts. I then asked Kevin if he wanted to talk to him and he said 'yes' so I put the number in his phone and he called him. As soon as he heard Tim's voice Kevin just broke down. He just sobbed and sobbed. It just broke my heart and I cried right along with him and it also made me realize exactly how much I hate Tim for what he did to my kids. I know this has been a bone of contention between myself and some of the readers here, but I will never forgive what he and his family have done to my babies.

I did tell Kevin, however, that I will support whatever he wants to do. Tim called Kevin 3 times today and Kevin wouldn't answer the phone any of those times. I guess he needs to work out how he feels and I just told him that I would be there for him no matter what he decides to do. I did bite my tongue and told Kevin that maybe Tim wants to try to make up for his mistakes, but I also told him that he may not want to as well. I also told him that even if Tim does try, it's possible that it won't be in a way that Kevin will appreciate. There's no mistaking that Tim is nothing like myself or my kids - he just wasn't brought up the same way or has had too many negative outside influences to make him think as we do. It's sad to say, but I'm sure that, in time, Kevin will realize it too. I know Breezy has.

So anyway, Kevin is in a much better place emotionally lately and I do believe it's because he sees how relaxing it is going to be at home. He has something to look forward to now and it has made all the difference in the world.

And tomorrow he is going to be alone the bulk of the day. I have meetings at the house almost all day. I sure hope he can handle it. He does have therapy throughout most of the day so it should be ok. I hope so anyway...

Day 287 - Mar 14, 2009

Oh what a great day. We just lay around all morning and then we got ready and drove to an event at the Sun Dome. They were honoring America's Heroes. I didn't know what to expect, but it was just a bunch of tables set up to help with addiction and suicide and things like that. It really wasn't Kevin's thing (nor mine) so he wanted to leave within 10 minutes and he got no argument from me.

After that we just came home and watched movies/tv. Kevin also talked on the phone quite often. Which reminds me - some of you have asked if Kevin can talk and the answer is sort of. He can say about 30 words or so, with more coming all the time. Two that he can say are yes and no and it's best if you keep to those kinds of questions. One thing I am unsure of is if he will remember everyone and I guess we'll just have to see. Mostly he needs pictures, but he has come a long way in the last few weeks and doesn't seem to need as much visual prompting.

Also, I want to thank everyone for sending me possible plastic surgeons. I guess I have my work cut out for me in researching who's the best. I know I need to get moving on this so hopefully I will get some time this week.

And I just want to end by saying that us staying at my parent's apartment has made a world of difference to Kevin. It is amazing how many things have 'come back' to him and I rarely see bouts of sadness anymore. I can't wait to take him home and see what kind of difference that makes. Just him being able to get around by himself and cook and shower without it being such a tight area will be amazing. I just can't wait to see how much he loves it there.

And now I am going to end with some pics of Kev on the phone and listening to his iPod.

Day 286 - Mar 13, 2009

We really had an awesome day again today. Kevin really rocked his therapies. I so wish my video camera had been with me because he was standing up and dancing and singing the whole way through PT. It was actually quite hilarious.

After the 'therapies' part of the day was over we broke out and came to the apartment. We really love it here and I think my parents are going to be super happy living in this complex. I can't wait though for us to get the house because he can't go anywhere here by himself as it's carpeted and just too small for him to get around. Once we are in the house he can go everywhere as it is all tile and it's a very large house (for lots of company) so he will be able to really spin around the whole place.

And tonight I ran out to take the garbage to the compactor and I called my parents real fast to have them call Kevin and talk to him while I was out of the house. It takes me at most 2 minutes to do it, but figured I would have them talk to him in case there was a problem. I also wanted him to be excited to get a call. Let me tell you - his eyes were just glowing when I walked back into the house and he was on the phone. I said "What are you doing on the phone? I've only been gone two minutes - who on earth are you talking to?". He handed me the phone so I could see who it was and then he asked for it back so he could finish his conversation, lol. It was such a joy to see him acting like that! I figured he would be ecstatic, but I didn't want him to know that I was keeping tabs on him like that, kwim?

And now I am heading to bed - at least I want to. I am starting to get a cough and I feel so tired so I want to try to fall asleep earlier than normal tonight. Hope it works...

Day 285 - Mar 12, 2009

Today was a really great day. We actually called in sick today, lol. Yep - we blew off everything to do with the hospital and stayed at the apartment most of the day. Breezy is leaving in the morning and we wanted to spend some family time together. So the kids putzed around while I ran tons of errands and then we met my niece Chrissy for dinner and then we headed back to the hospital at about 8:30 tonight.

Oh and one other thing - Kevin went and purchased a cell phone tonight. My techno geek is back, apparently. It was fun watching him with his iPod all day and even better watching him get his first phone call (it was me calling from the driver's seat while he was right behind me, lol - you would have grinned from ear to ear to see his eyes light up when he realized someone was calling him).

And Breezy is not heading back to PA tomorrow as planned. She is taking a detour for a couple of weeks and taking some time to decide what she really wants to do with her life. We talked for a long time tonight while packing up her room and I think it's best if she takes a break, goes somewhere neutral and makes a decision. Sure hope it works out for her.

And to end, I would like to ask that anyone who was/is GOOD friends with Kevin to please email me their phone numbers. My email is on the right side of the page. I am only asking for those that really are good friends and are willing to talk to Kevin even though his speech is just beginning to come back. He is up to maybe 30 words now, but he listens well and I think he could really use the friends. As mentioned before, I think he is very lonely and I look forward to getting the house and having his friends start to come and visit.

Day 284 - Mar 11, 2009

I believe we have a monster on our hands, lol. When we went to Wal-mart last weekend, Kevin was going nuts in the aisle trying to tell me something. I couldn't figure out what it was he wanted so I told him to just go and get it himself and that I would follow. We walked all around the store until he finally found what he wanted - an IPod. So tonight I finally got iTunes loaded and synched the thing with the music he already had downloaded in a file that it took me a long time to find and that kid is in his bedroom still just jamming away. He is in heaven. Up until I made him go to bed, he has had me get up from my chair and read the screen to see what song was playing each time it changed. He is just so excited.

Tonight we are actually staying at the apartment. I am planning to get Kevin to stay there on Mon, Wed, Fri and Sat nights each week in an effort to get him accustomed to being away from the hospital more than he is there. I don't really see a problem for the most part, but time will tell.

And today I spent the day at a spa. A new medical spa opened in the area and offered the moms/wives a free day there. HEAVEN. I had a facial, massage, had my eyebrows threaded, a makeover and some skin work done. I can't imagine what this day had to cost, but I sure hope they offer again, lol.

But now I need to take a hot bath so that I am not sore tomorrow. I am already starting to feel it so off I go...

PS - notice the address change for Breezy and I. We have to use my parents place until we close on the house.

Day 283 - Mar 10, 2009

Nothing much happened today. I did talk to the pool guy though and I have decided to not have a ramp going down into the pool. After talking with the specially adapted housing guy, we discussed how easy it is to go down the ramp, but how hard it is to come back up it. After thinking about it all evening, I agree. I think a lift would be much better. It would slowly lower him into the pool and then lift him back out when he's done swimming. It would give him much more freedom and independence than someone having to help him out of the pool every time he went in. Granted, he won't ever be alone in it, but still...

I did find out too, that we won't be closing on the house for at least three weeks now. I had just talked to the docs today about releasing Kevin in a month thinking we were closing next week, but it will be roughly 6-8 weeks now instead. I want him to come to the house on the weekends and a couple of days through the week before fully having him discharge from the hospital. I don't want him just thrown into a new situation as it can be traumatic for someone like him.

So that's about it for today. Kevin was in a pretty good mood most of the day. I had a dentist appt and Breezy stayed with him while I went. I also picked a friend up at the airport and took her to her parents' home as they live here near the hospital. They didn't know she was coming and it was so fun to see their faces! Such nice people, too.

And now I am signing off. Kevin actually took a sleeping aid tonight - something we haven't done in many months (but he was just so restless) and he is finally snoring so I want to go down and pack some more stuff.

Day 282 - Mar 9, 2009

Kevin and I had a sad moment today. We were discussing how I was going to live with him and I told him I would stay until he got married. He started crying and touching all of his deformities, basically saying that he knows nobody will ever marry him or love him because of how he looks. Man, that was tough to watch him cry over. I did tell him that looks really don't matter, but he's not stupid - he knows that in today's society, they do. I also told him that things will look better once he has his plastic surgeries and that was the only thing that got him to stop crying, but hopefully he does realize that he still won't look perfect. I guess it's something I will have to make sure he is aware of, while somehow making him feel confident enough to go through with the surgeries. Aaack! Why does everything have to be so dang difficult?

On the surgical note, I have discussed plastic surgery with our FRC. We have decided to not have any type of surgery here in Tampa. I am planning to research for the best of the best and I am thinking it won't matter where they are located - Hollywood, NYC or Timbuktoo. This is something I have absolutely no knowledge of, but I guess it's time I do.

And now I am just going to answer some comments/questions:

Jodi - thanks for the link for sunsetter awnings. And say 'hi' to the family for us!

Holee et al - a screen around the pool is a given. There is a new way to keep the bugs out by just using a timed chemical release around your pool area, but I know we need to worry about pests and alligators (gosh - can you believe this PA girl has to worry about gators for goodness sake?!!) so we are going with the screen. It's all part of the pool package.

Lorraine (and Rick) - you guys just need to bring Howard the Duck to see us so he can swim in that pool, lol. Thanks for the pics too!

Kevin and Natali McKee - thanks for reminding me about the baby monitor! I actually bought one months ago when the hospital was trying to take away the sitters, but we never used it. I'm going to have to dig it out. Thanks so much!

And now I am going to sign off. I have some packing to do as I am trying to take the stuff we just don't use to my parent's place so that it's less to move when we have to leave the Fisher House. I sure hope Breezy gets working on it. She has to check out on Thursday night and I don't think she's packed a thing yet. Kids will be kids, right?

Day 281 - Mar 8, 2009

We had the most lazy day today and it was wonderful. Kevin didn't even get up until 1:00 this afternoon and then he ate breakfast and we talked for a little while and he went back to sleep until after 4:00 when I made him get up and go to the grocery store with me.

Once there, I had to laugh because I was looking at the vegetable section and next thing I knew - Kevin was gone! I actually had a moment of panic, but then I spied him halfway across the store. He was just looking at everything that is available. He continued on and I went my way and allowed him some independence. I must say his eyes lit up when he got to the beer aisle, lol. No go though - and he knows it!

In a nutshell, we really enjoyed our weekend. It's getting easier and easier to be away from the hospital for extended periods of time and I am confident that Kevin will do well when we go home for good.

Day 280 - Mar 7, 2009

Today was a pretty good day. We did take a nice long ride to a pool store and Kevin just fell in love with one of the models that was installed. It was funny because it's actually the exact style pool that I was hoping for. Something that looks like a pond with lots of foliage (esp palm trees) and a waterfall. Assuming it's in our budget, and we'll know about that tomorrow, it will have a wheelchair ramp that will end next to a seating area that Kevin can transfer to and then just swim off. I chose not to get a hot tub because Kevin can't handle the hot water, but we will have jets in the pool around the one seating area for massage purposes. It will also have a table so he can sit in the water at the table and have a drink or even eat dinner.

I also have to get some kind of retractable awnings that can cover the bulk of the pool area because Kevin can't be in the sun for years. I can't imagine what that is going to cost, but hopefully it's affordable. If not, Kevin will just have to swim mostly at night for a while.

Anyway, Kev was really excited while there. And here are a couple of pics to show it. One is the pool that we both loved. Obviously ours would be different as we aren't having the hot tub installed:





After that, we had dinner and stopped at Wal-mart again. We keep finding things we don't have that we need to use at my mom & dad's place. I hate having to buy it all when it's already all in storage, but it will be a while before it gets here so I have no choice.

So all in all, we had a really good day today. Here's hoping for another tomorrow...

Day 279 - Mar 6, 2008

Today was a pretty good day. Kevin did his therapies well and then we loaded into the van and headed to my parent's apartment. We only were there a few minutes when Kevin decided he wanted to go to Wal-mart. So, we loaded back up and went shopping. I did break down and buy a Garmin GPS system and Kevin bought the movie "Rambo" and we got some towels and washcloths for the apt/house.

Then we headed back and had dinner and Kevin watched his movie. Now he's in bed and I am thinking about scrapping, but probably won't move from the couch, lol.

So I really am happy with the switch of our psychologist. Pablo, the therapist, has come two days in a row and spent time with both Kev and I separately. He is very easy to talk to and I think Kevin 'connects' with him. I am excited to see if it makes a difference. I know it won't be immediate, but I just hope he can help Kevin deal with all of his issues.

And I am so happy to say that Kevin has adjusted very well to not having sitters any longer. I am told he is always appropriate when calling for the nurse, which is great.

The only thing we really need to worry about is his independence. Both yesterday and today I unstrapped his chair in the van and as I was walking around, he had already turned his chair and was flying down the ramp. He hit the side both times and almost tipped it off the ramp. I wish I could say it scared him into not doing it again, but he just laughed. This is the Kevin of old - never caring about the consequences, lol. For those of you that know him personally and commented a long time ago about him racing his wheelchair around East Brady, I would hazard a guess that you are right. Today one of the nursing staff made a comment about him jumping out of planes in the future and I had to close my ears and start humming because I just can't think about him doing anything dangerous yet.

Baby steps, right? Baby steps...

Day 278 - Mar 5, 2009

We had kind of an up and down day today. Mostly Kevin was down, but one of his good friends from PA, Zach, came to visit today and it was really the first time that he was smiling and happy. It made me realize all the more that Kevin is just as lonely as I am - and Breezy too, to be honest. None of us have our friends to come and break the monotony of the days and I think I have to come up with a plan to end social isolation - at least for him. I know it's going to help to have my family here, but it's still not the same as having 'one of the guys' over to play XBox or watch a movie or something.

They did talk to me about a day program at the hospital that I can check Kevin into in the future. I suppose I will just worry about all of this in a few months when we go home.

We also had our first 'session' with the male therapist today. I like that he asked me to leave the room and he talked to Kevin by himself. He then came out and talked to me about things that have happened with Kev lately. I personally think we are off to a good start. Finally. I am just not trained in this field and I have been really worried about saying something wrong or not dealing with a situation correctly.

And now I am off to bed.

Day 277 - Mar 4, 2009

Kevin was in a decent mood all morning, but this afternoon he just didn't want bothered by anybody - including me. So I left him at the hospital and spent the evening doing pretty much nothing. It was actually pretty nice.

I do have some great news - we may be closing on the house as early as next week. Yay!! I am thinking it will probably be the following week, but I would like it to be by Thursday before Breezy leaves to go home to PA for a month. She is planning to leave next Friday. I am just so excited by this. Once we close, we still have to do quite a bit of adaptation work and we also want to put a pool in. I need to find a company that can put some sort of intercom system in so that Kevin can buzz me from any room in the house (mainly from his bedroom to mine for middle of the night issues) and I also need to do some painting if possible before moving any furniture in. That may have to wait as I will probably do it myself because I am basically cheap, lol.

I also found an apartment for my parents to live in and have already signed a lease for them. We actually just moved some of the furniture I had bought for the house in and are planning to stay there on the weekends until either our house is complete or my parents arrive to move in. Their apt is in no way handicap accessible, but we are going to make do. It will just be nice to stay in a place with individual rooms to get Kevin used to that idea before moving into our house. It's also halfway between the hospital and our home so it will also get us used to the commute back and forth, which we will do five days a week for therapy.

I also forgot to mention earlier that I have eliminated the sitters for Kevin. He has come so far cognitively and he now understands when to use the call button so I feel it's time. I hope I am right about this, lol. It's such a scary decision, but we aren't going to have one when we go home so I need to cut the strings, I guess.

We never did find out anything about his infection, but it's gone so I am going to just forget it happened. Head in the sand, for sure, but there is enough else to deal with so it's what I'm going to do.

And now I am going to sign off and just relax. I am staying at my parent's apt tonight as I have appointments at the house tomorrow all day and it's only 10 minutes from here. Breezy has two of her friends, Morgan and Megan, here visiting and they are going to stay with Kevin tomorrow throughout the day. Hope Kevin is in a better mood!

Day 276 - Mar 3, 2009

Another really great day today. I was amazed at how willing to work Kevin was at all of his therapies today. He first went and played Wii and he had a blast playing it and he even helped another patient play better. Then we had speech and he rocked it, followed by PT where he just did a wonderful job of learning to stand without using his hand to support himself as he stood up and finally in OT he really allowed his therapist to work his arm more than ever before. It was all just such a great day.

Tonight wasn't as great because we were out riding around near the house we plan to buy and we came across an accident so we had to detour. Well, I don't know that area well enough to detour and I got lost. That stressed me out, which in turn stressed him out and it was a rough ride for a little while. But I eventually found the Cheesecake Factory and I definitely know how to get home from there. (thank goodness!) I have to admit that I was too cheap to put a GPS system into the van, but I am rethinking that after tonight.

And that about sums it all up tonight. I am so hoping tomorrow is even half as good as the last few days have been...

Day 275 - Mar 2, 2009

We had a really fantastic day today. I actually went to Busch Gardens with my sis and B-I-L for a few hours and Breezy stayed with Kevin at the hospital. We hooked up with the kids after all of Kevin's therapies and he was back to his old self - laughing and joking and just carrying on. Breezy told me that he worked really hard for all of his therapies too and the therapists are all very excited. He was even told that if he keeps up this pace he will be walking in no time on his own. I can only hope that this attitude stays the same. It was just amazing at the change in him. I wonder what is causing it? Surely the increased dosage of anti-depressants wouldn't work this quick, would they? I do know that Kevin is learning to say the words "I am lucky" with the speech therapist so maybe that's it? Who knows - I just so want it to continue.

And in other news, my sister and her husband will be going home tomorrow. We have already said our 'goodbyes' because they have to leave at 3am. We had a good visit, but I am sure they want to get home to their kids. Now we can only hope they can actually get back to Pittsburgh because they have a layover in Charlotte, NC. I am hearing that the weather is quite atrocious in those parts.

And now I am going to just touch on some of the comments that were posted lately.

Holee - I am going to discuss the power chair option again with the therapists, but I'm not holding my breath. I will say this though - if we are at the mall and Kevin wants to go into a store - he already does it. He can move his chair very easily with that left leg. I do think he may need a chair though for those times that he is too tired and I am too. You do make some good points!

To anon - the zip code for Chicora is 16025 and not 16041 as the benefit and my blog stated. Thanks for noticing that. And for the person that wanted to know where the benefit blog is located - there is a link on the right hand side of my blog somewhere.

To anon about the music therapy - Kevin sings all the time, but you still can't understand the words. I know the therapist always tries to teach him words using a tune, but I will try to talk to her about this tomorrow as I'm sure that's not considered music therapy.

Debbie - we are already discussing bringing in burn patients that are done healing in the hopes that Kevin will see the light at the end of the tunnel. It's just a long process to do something like this here. I also will try the "5 minutes to feel bad" option. You never know...

And I know I have more post to discuss, but I am going to end here because I am just too tired to continue. Will catch them tomorrow night.

Day 274 - Mar 1, 2009

Today was one of the better days we have had in a long time. Kevin's mood was really great most of the day. I don't know if it's because we had a long talk (again) last night or if it's just a fluke, but I'll take it. I did tell him that he has to wake up every day and say "I am lucky" and I even wrote it on the whiteboard in his hospital room to remind him. Mind over matter, maybe? Who knows...time will tell, I guess.

Other than that, nothing new really going on. We did go shopping at Wal-Mart today and that's about it. We tried to yesterday, but we couldn't get a handicap parking spot and after almost 20 minutes I gave up and went to Target. Kevin was really mad as he doesn't seem to like Target (?) and he wouldn't really allow us to do anything. Yes, we could have forced the issue, but it's just not worth it. Got to pick your battles and I prefer to work on therapies and stuff like that.

I am hoping tomorrow that the docs will be able to tell me what is going on with the infection - if anything? Kev seems to be doing much better, but what was it? And did it clear up on its own or what? Can that even happen? We had been invited to a banquet/event tomorrow at lunch time and I really wanted to go, but I just don't feel comfortable taking Kevin so far from the hospital until I know for sure what's going on. I sure hope that there is news tomorrow.

Day 273 - Feb 28, 2009

It was kinda a rough day today. Kevin just isn't ever in a good mood anymore and unfortunately it's working on all of us. Breezy and I are fighting and Kevin is just fighting everything so it really, really wasn't a fun day.

I honestly don't know what to do to help Kevin through the depression. I seriously have tried everything and I am assuming it's just something he's going to have to work through on his own. It's just so bad. I thought about it last night and I realized it's been weeks since he really laughed. Since before his surgeries. And the worst part is the mood swings. Today we were pumped to go to lunch and we got to the restaurant and he would not go in. We had to go back home and I sent my sis and b-i-l back on their own.

Then he wanted to go outside and his wheelchair got stuck in the yard/grassy area and that was just it - back into the house we had to go. He just lay there and cried and cried.

We did up his dose of anti-depressants and I was told yesterday that we are getting a new MALE therapist for Kevin to begin 'talking' to. I so hope this makes a difference. And I'm so glad that they are at least hearing what I am saying about this therapy thing.

And now I am going to cut this short. I am just so tired that I can barely keep my eyes open to type this. Here's a close-up pic of us (obviously taken by me holding my arm out as far as I can, lol)

Day 272 - Feb 27, 2009

Kevin is feeling much better today. There is still no word on what is infected, but the docs told me that his white count dropped to 15 so they are really unsure what's going on. We are still waiting on test results so maybe we will have more info soon.

Brianna was with Kevin at the hospital earlier while I ran errands and our liaison came in and informed him that he was being promoted to Specialist. She said that they were hoping to have a ceremony. That will be exciting for him - especially as he didn't even know about the last promotion.

Other than that, nothing new to report. Jodi, you asked about the cookbooks and I am not really sure. I know that Kim S. posted a comment that they can be ordered online at the benefit blog. I don't know too much about these, but I am told that there were over 350 recipes (I hope I remembered this correct - Kim, do you know?) submitted honoring many military personnel. I can't wait to see one! This was such a great idea to have a cookbook honoring families and friends that have served!

Jessica, you mentioned art or music therapy and I have never heard of either of those being done here. I will try to remember to mention them and see if they are available.

Miss Em - great idea to go buy Nerf baseball bats. I just bet we could all have a blast with those, lol!

Holee, the therapists haven't wanted to get Kevin a powerchair because they were afraid it would make him not be willing to push himself to get better. Before his cranioplasty, I agreed. Now I'm not sure, but they still don't want to get us one because they feel eventually he will be walking. I did beg for one for a while and I had been told months ago that they did decide to order us one (because I made the therapist push him up the hill from the house to the hospital and she couldn't believe how hard it was to push him), but it never showed up and no one seems to remember anything about this. That therapist has since left the VA hospital so I can't see anything happening. It would sure be nice though. He weighs more than I do and he's six feet tall. It's hard pushing dead weight up a hill!

And obviously we won't be going to the RenFest this weekend. It is going on for a few more weekends so maybe in the future. I have to find out if it's even possible to push his chair in the grass anyway. I sure hope so...

Day 271 - Feb 26, 2009

Kevin is sick again. When I went in this morning he had been vomiting since 4:30 am and was very lethargic and had horrible spasms - the same symptoms of the shunt malfunctioning. We ran a multitude of tests today and started him on an IV as he somehow got dehydrated overnight. We do believe he has an infection as his white count is 25 and it should only be between 4 and 10, but we still don't know what kind of infection he has. Please keep everything crossed that it's not either the shunt or the flap - that would be quite devastating as either one would need removed.

I think I am just going to end here as it was truly an exhausting day. I will catch up with everyone tomorrow...

Day 270 - Feb 25, 2009

Today my sister Dawn and her husband Harry came to visit for a week. They just got here tonight and haven't even been able to see Kevin yet, but tomorrow will be soon enough. It will be a nice week and I am looking forward to doing something 'fun' with them.

As for something fun - there is a Renaissance Festival this weekend and I am hoping to take Kev and Breezy there. I have to find out the hours and see if there is anything going on in the evening as I won't take Kevin into the afternoon sun. I will risk it in the evening (after all we do have the Solumbra clothing), but the clothes don't cover his face and it's completely burned too. I hope he is interested in going. We went to the one near Pittsburgh a few years ago and had a great time. Kevin was particularly interested in the daggers and swords and things, lol. Then there's Breezy and I getting our faces painted and buying fairy wings and things like that. The differences between men and women, eh?

And I did find out that a very well known bank has agreed to underwrite the mortgage so it's all just a matter of time now. PHEW! I feel this HUGE weight being lifted off my shoulders just knowing we have somewhere to go. And I do appreciate all of the kind words and emails about me feeling like a failure because we are homeless. I realistically know that it's just nothing I can change, but the feelings are still there. It's all moot now though, right? Once again - A BIG PHEW!

Day 269 - Feb 24. 2009

It was a very boring day today. Kevin is doing fine and we are somewhat settling into a routine of sorts. It's a busy one, don't get me wrong - but it's still a routine.

He did have to get up early today and have his right leg scanned to make a splint for his foot and lower leg. It kinda drags some when he is walking and a lot of times his foot will roll onto its side so we think it will be easier for him if he has a splint to keep it all straight for a while. I can't say if it will be permanent or not, it's too soon to tell, but hopefully it won't be.

We are also discussing Botox injections in his right arm. It's just not really doing anything. He barely has any control and there is no movement whatsoever in his hand. We are pretty close to the nine month mark so I am hazarding a guess that he's never going to have full use of that hand/arm. I sure hope I'm wrong though.

We are also increasing his anti-depressant. We really have just hit a very rough spot and it's hard to work through it when he can't tell us what he's feeling. I just have to guess at what could be rolling through his mind and let's face it - men and women think differently. Who knows - I could be completely off base and even introducing new depressing thoughts with each guess. I just don't know. We currently also have a female therapist and I am working on trying to change to a male. I just personally feel that a male will be able to better know what Kevin is feeling. Wish me luck on getting it changed - so far I am hitting a brick wall...

And to end this post, here is a pic of the kids at the house we are trying to buy. They were messing around, of course, lol.

Day 268 - Feb 23, 2009

Not too much happened today. We just did our normal speech, pt and ot and that's about it.

I have noticed that Kevin's head is having fluid build-up nearly every night, but it goes away once he gets in his chair. It does have to do with how flat he lays while sleeping, so when he wakes up feeling nauseous, we just have to have him sit up for a while in bed and it will go away. I guess he is going to have to take a hospital bed home with him when we do go so that he can put his head up and down on his own. I believe the VA will supply that and that sure is a huge relief!

Since I don't really have too much to say, I am just going to reply to some of the comments.

To the anonymous poster saying that Kevin needs the "drive-on rag" - sometimes I am still busy with it, lol. But rest assured - it does get passed on when I can.

Someone else asked about my mom and she is doing well. She says her broken arm doesn't really hurt much, but the leg does. I think we'll all feel better once they get down here in the nice, sunny weather, lol. No snow or ice here, that's for sure.

And my heart isn't hurting as much, but there is still a twinge there. I know that some of you think it's crazy - but I really struggle with being homeless. The not having anywhere to take my children to has been a very heavy burden for me. I have always had a home for them and it feels a bit like failure to not be able to just take care of this. I feel like I am not doing my job in providing for them - and believe me - I already know that none of this is my fault and that these are extenuating circumstances, but the thoughts are still there. Anyway, once those papers are signed, I will feel much better! I sure hope it's soon...

Day 267 - Feb 22, 2009

Man, we sure were spoiled this weekend. I'm not sure we're going to be able to handle staying in my tiny, little room every weekend from here on out, lol. I can't even begin to tell you how exciting it was for all of us. Even Kevin really appreciated being able to move around the rooms in his chair. At the Fisher House, he can only wheel into the door about 5 feet and then has to stop and either sit there or get into my bed. He just enjoyed going back and forth between the rooms whenever he wanted to. He also loved laying on the couch and watching tv. He even fell asleep there the first night and I just left him stay there.

To be honest, we didn't do anything much all weekend. The expense of the hotel was enough of a splurge so we just lounged around. We did go to the Brandon mall, which will be the mall we will frequent once we move into our home (assuming, lol) and we ate in the food court. I was so excited to see a Cheesecake Factory there so now I will only need to run about 10 minutes instead of 25. Maybe Breezy can get a job there so that we get a discount, hehe...

On that note, Brianna has decided to stay here in Florida with us and not move back to PA. She realizes that Kevin just isn't going to understand if she leaves so she is going to get a job and start over once we get into the house. She will be going home to PA for a month or so to see Alan, but that's about it. I am secretly glad because I would've really missed her.

And my parents are going to be moving here by this summer. I am already looking at apartments for them to move into and plan to visit three of them this week. It is just so unbelievably expensive here...

And now I am going to head home for the night. Kevin is asleep and I want to hit the hay early tonight too.

Oh - and Janna - thank you so much. We just received your letter today. I wanted to read that book (The Shack), but never went out looking for it yet. The kids went to the mall and shopped for jeans this afternoon so I was able to start it. Thanks!

Day 266 - Feb 21, 2009

I am pretty much going to skip writing tonight. We are still enjoying our time at the hotel. I can't begin to tell you how awesome it is to have so much space!

Day 265 - Feb 20, 2009

This is going to be a very quick post tonight because...

At this moment the kids and I feel more normal than we have in 9 months. I splurged this weekend and we checked into the Embassy Suites because Kevin needs to understand that we will be living in more than one room. The ES has both a living room/ kitchenette/ dining room and a bedroom. The suite is about 6 times the size of my room at the Fisher House and we have a couch and a chair and a table and 2 beds and 2 tvs and...well...we almost have a home - for a whole weekend!! It is just so exciting to be able to putz around 2 rooms instead of us all having to sit on the bed together or someone sitting on the floor because there just isn't room. This really is just so nice...

Day 264 = Feb 19, 2009

So anyway, I truly believe we got a mortgage! We had a meeting at the house that we chose with the some of the VA reps and loan guarantors, as well as the company that will do the remaining adaptations and a few others. We were told that the builder's mortgage company will take it on and we will hopefully be able to move in within the next 2 months. I can't say whether Kevin will be able to at that point, but he should be able to at least stay on the weekends.

Phew! What a load off these shoulders!!

As a side note - I already purchased furniture for the house so we are mostly good to go on it. The wonderful realtors that we have been working with came across a deal where a couple of guys were selling all of the furniture they had in a model home. It is enough to fill a 4 bedroom, 3 bath home with a family room, living room, dinette and formal dining room. This includes curtains, rugs, decorations, everything! As far as I can see, the only thing we will need to buy are some extra window treatments, a washer and dryer and a bedroom suite for me (but that can wait until I have money coming in - I already have my mattress so we are good to go on that). I am sure other little things will pop up, but for now - we are pretty much set. I just hope this really is going to work. I believe it will, but there's always that niggling, little voice saying 'you haven't signed the papers yet...'.

So moving on, Kevin is doing better today. He did have some fluid build-up this morning, but it went away once we got him into the chair. I sure hope it stays gone. I worry about his attitude if we have to go in for another surgery anytime soon. He is on the verge of giving up and it scares me. I am thinking we may have to increase his anti-depressant, but I am waiting to see how he is doing next week before making a final decision on that.

And now I am going to answer a few of the questions I have in my inbox:

First, I appreciate everyone's concerns about the home. I also appreciate everyone suggesting different organizations that will build us one. The truth of the matter is, I am not willing to give up a sure thing for a possibility. I have had more than one organization say they would help in the past and then disappear. Now that we have chosen a home and even found a mortgage, I am unwilling to trust an organization to follow through. It would mean us canceling the mortgage we just got and waiting for an approval and then waiting for the home to actually be built IF we get the approval. My decision may sound crazy to some of you, but in today's economy (and with us so close to discharge) - I will take the sure thing.

It really would have been different if these organizations would have come forth months ago when I was asking for help. Frankly - it really is just too late. I had already talked to ALL of the organizations that everyone has suggested and no one was interested in helping then.

Ida - thanks for the info on MRSA. At this time they are not treating Kevin because it is colonized in his nose. I know what to look for and am keeping a close watch in the event the germs spread.

And for everyone that stressed how well Kev looks - you are all preaching to the choir, lol. I honestly don't feel Kevin can handle seeing what he looked like in the past so we can't show him how far he has come. We have also had many months to adjust to what he looks like now. He is just now seeing it. He is just now going through the loss. In time, he will accept it and by then, he will be ready for plastic surgery to fix what we can so he will go through different emotions even at that point. That will just be another hair-raising turn on the ride.

Dyan, I really laughed at the Kevinator story. I will have to tell Kevin that one tomorrow. I'm sure he will get a chuckle. For those of you that don't read the comments, the story can be accessed on day 262.

Alison - you asked about open wounds and Kevin doesn't really have any (other than the staples in his head right now). His burns are all healed so pool therapy will be good for him. Unfortunately, the pool here is being repaired so it will have to wait until we put one in at the house. It's on the list of projects.

Ok, enough for tonight. I do just want to say a big "THANK YOU" once again to everyone. It feels good to know there are people that 'have our backs' in this horrendous time and frankly - your words keep me going at the worst times.

Oh - and the internet still isn't working at the house. If you don't hear from us over the weekend - don't panic. Kevin will be staying with me so I won't be at the hospital to create a post like I am right now.

Day 263 - Feb 18, 2009

I wasn't able to post last night because the internet was down. I don't have time to post now as the day has already begun and we are too busy for me to sit down for long so I will catch everyone up tonight.

But as a one lined hooray - we got a mortgage (at least I believe so)!!!!!!

Will tell all tonight!

Day 262 - Feb 17, 2009

Kevin felt much better today - he was almost his normal self. He did pretty well in his therapies considering he just had 2 surgeries and then we brought him down to the house for dinner and part of a movie.

I will say that he is really letting his looks bother him though. Today I was doing dishes and I peeked in the dining room (where he was sitting at the table by himself) and he looked so dejected. I walked in and asked what was wrong and he was just pointing to the glass topped table. I didn't see what he was looking at until I realized that he could see his reflection in the glass and was really upset at what he was seeing.

We also Skyped with my nephew and Kevin was staring at the video of himself in the corner of the screen nearly the whole time. He is just so sad and I don't know what more to say to him to console him.

As for the meeting - so far we have two options and they are to forget the past and allow the same resident to work on Kevin or transfer to a different hospital. We have more options, but I need to sit with Mary (our wonderful Federal Recovery Coordinator) and discuss them. (I will be calling her tomorrow as I didn't have time tonight.) I am pretty much not going to think about it tonight because all of the options aren't laid out for me and I don't make decisions that way. So I will touch on this again tomorrow night or the next.

And now I am off to bed.

Day 261 - Feb 16, 2009

Kevin has been very tired today. Breezy is feeling better so she spent the day with him while I ran some errands and she told me he basically slept all day. We did get him up for dinner and then he went right back to bed and has been sleeping all evening. I am sure it's still him just recuperating from his surgeries for the week, but I do worry a bit that it could be something more.

As for the MRSA, I know he was given antibiotics after his surgery, but I am unsure about a full treatment. I will be looking into this tomorrow.

There was also a HUGE blowup this weekend about the same resident showing up to perform a tap on Kevin's head on Friday. It escalated quite a bit and I believe we are having a meeting tomorrow sometime to decide what we need to do - either leave this hospital or have a dedicated neurosurgeon that we feel comfortable with. Once again - and I have to stress it - that man is not allowed to come anywhere near my son. And I find it really sad that this battle has had to continue to this extent.

And to the anonymous poster that wants to call their congressman about any of our issues - go for it. I feel that the doctor dilemma will be taken care of - but if it will help us get a mortgage I would greatly appreciate it. As I hope everyone realizes - we don't expect a free home, we are more than willing to pay for it - we just can't even seem to be able to do that. Crazy, huh?

Now I will say this - we do have a broker that is still working on finding us funding. I can only hope that it works out. And I realize that an apartment is a possibility in desperate measures, but believe me - it won't be tailored to Kevin's needs. It would take a lot of money to make it work for him and I am just not willing to spend money on something that Kevin doesn't own.

In the interim, I am just going to stop busting my butt on this. I am nearly killing myself over it and I just can't continue at this rate. I am not saying I will not still work at getting this house, but I can't continue to put the hours in that I have been - on top of taking care of Kevin (and Breezy too). My heart has been hurting and if I don't stop I won't be around much longer.

So, maybe things will just work out. Maybe Kevin's shunt will work from this day forward for the rest of his life and maybe we will have a home to go home to in a month or so and maybe some sort of home based job that has VERY flexible hours will land in my lap and maybe all of my family and friends will move to Florida.

Wouldn't life be great if all of those maybes would occur?

Day 260 - Feb 15, 2009

Kevin has finally been released to go back to his room. YAY!! It has been very rough being in ICU as it is so loud and it's impossible to sleep there. But - we are back "home" now so things should get better.

It has been rough too in that the shunt quit working three times this week. Kevin has hit a very depressed state because he is realizing exactly how much this whole thing just sucks. Both last night and tonight he has just lay in bed and sobbed "Why? Why? Why?". We had a long talk about things tonight and he basically told me that he hates it in the hospital (I can so understand that one!). I told him I am working on it, but am struggling with the home situation. He also knows that even when we do get a home he can't just check out and it will take time to be able to go home and stay home. I know it will start with just the weekends and I can only hope that he understands that when the time comes.

And it turns out that Kevin tested positive for MRSA this week. It's colonized in his nose, but now we have to wear gowns and things when we are with him. We made it all these months without it - bummer. I guess it was inevitable though as nearly everyone on the ward has it and Kev has started socializing with the other patients. Matter of fact, he played Wii bowling last week with one of the other patients and he had a blast. I left while he played because he needs to realize that there will be times when Breeze or I just won't be there. I really wish I could've seen him play though...

Day 259 - Feb 14, 2009

Kevin is still in ICU and we are hoping to go back up to his room tomorrow sometime. He is struggling today because he is so frustrated and mad and sad and disgusted because we really have had a terrible week. I feel his pain and let me tell you - it is so hard keeping a smile on my face and telling him that everything will be ok when I feel exactly as he does.

And now I am once again going to cut this short. I have slept in the chair the last few nights and I need to get some sleep. I trust the sitter that is with Kevin tonight so I felt I could come home for at least a few hours of rest. She will call me if anything goes wrong...

Day 258 - Feb 13, 2009

I'm not going to be able to write tonight because Kevin's shunt still isn't working and he is still in ICU. I need to get back up to the hospital and spend the night again. Breezy is sick and we can't have her near Kevin so I have been on my own with Kev this week.

Gotta run!

Day 257 - Feb 12, 2009

Kevin had another surgery today to revise the shunt once again. I guess it was clogged. I am a little bit worried today because he still hasn't awakened from it and he always bounces back much faster than this, but I'm sure he will be fine tomorrow. I sure hope so anyway.

I have to head back up to the hospital as soon as I can grab a quick bite to eat so I need to cut this one short.

Day 256 - Feb 11, 2009

Here we go again. The shunt quit working. This is the fifth time it has stopped working in 6 months. I kinda thought so yesterday because he slept all day, but his head wasn't getting any fluid on it. It's there today though. Matter of fact, the fluid buildup has nearly doubled in the last 4 hours. He fell asleep at my house and I am just waiting for him to awaken enough that we can go back to the hospital. At this point, he keeps waking up to vomit and the bed is just soaked in sweat. He doesn't have the energy to stand up and get into his chair though so we will just have to wait. I do have permission to keep him here all night if it ends up that he has to - so we'll see. I would personally feel better up at the hospital, but I suppose it's something I am going to have to get used to.

I am still very frustrated on the home situation too, but I really don't have the energy to get into it. I have to be honest - I am the most exhausted I have ever been in my life. I can totally handle the situation with Kevin - it's been 256 days after all, but I can't handle so much of my time needing to do all the rest of the stuff. I hate begging for help to get a mortgage. I shouldn't have to spend countless hours a week on the phone with brokers and bankers and organizations and everyone else I have to talk to. I shouldn't have to worry about FL not registering the van because our insurance is still addressed in PA. (and yes - I am driving an unregistered van - but hey - it is insured anyway ;-) )

I am just honestly so flippin tired. I feel defeated by everything that life is throwing at me and I just want to run away...

Day 255 - Feb 10, 2009

Kevin hasn't been feeling well today. He slept all day long, only waking up for maybe 2 full hours total. Breezy was with him and called me because she could tell something was wrong, so I went up and had the docs come in. They are waiting until tomorrow to draw blood and just see how he's feeling. Hopefully it's just a little bug.

Other than that, nothing much happened. I am spending hours a day on the phone trying to get this house. To be honest, I am just so tired and ready to just give up and live in the van. It honestly shouldn't be this hard to buy a place to live.

Oh well. I don't even have the energy to vent about this so I think I will just hit the hay.

Here's to hoping Kev feels better tomorrow!

Day 254 - Feb 9, 2009

Kevin is still doing well and I am glad to say that most of the spasms have went away. He is still having a few, but that's the norm for him.

He did really well in physical therapy today too, but he is getting tired very quickly. I am assuming that it's because he just had surgery two days ago though.

And it looks like we are going to have to cut his hair. We had come so far in covering some of those scars, but they only shaved half his head for surgery and now everyone is commenting on it. It is making Kevin very self-conscious and he is pulling into himself every time someone says something. I know he is also very upset that he has even more staples in his head as he sees himself even more scarred now. It's hard for me because I honestly don't know what to say to him to make this better. I guess there really isn't anything more I can say - he is just going to have to accept it.

As for Long Time RN asking about the reason the shunt failed - they really didn't tell me. They just said it malfunctioned and they have no idea how often it could happen. I know in the past that they told me that the part of Kevin's brain that was damaged is breaking off in small particles and can clog the shunt sometimes. They didn't mention that this time, but there was a whole lot of screaming going on because they sent the resident that I don't trust to deal with us. I really don't understand how in America you are free to choose your doctors, but our own wounded warriors are not. The very guys and gals that fight for our freedom are not free to choose their doctors. It honestly makes no sense to me.

So anyway, Breezy is going in in the morning to be with Kev and I plan to call my congressman. I didn't want to do it today in front of Kev so tomorrow it is. It just really isn't fair. Why should we have to have someone that we just don't trust?

Day 253 - Feb 8, 2009

Kevin is doing very well since his surgery. We are back up on the fifth floor and everything seems to be ok, with the exception of non-stop muscle spasms. I will have to talk to the docs about that tomorrow morning. This is one of the first signs of shunt malfunction, but it usually goes away immediately after surgery. I am just not sure why it's still happening.

I did get to see the CT Scan results yesterday. It's just amazing the change in his brain. Even though nearly all of the left side was damaged beyond repair, it's still interesting to see how it spread itself out to the new plate in his head. Last month's scan (before surgery) showed the left side being 'pushed in' significantly by the amount of fluid collected against it. I find it interesting that a part of the brain with no function can make such a difference when allowed to be 'free flowing' as opposed to being compressed. I can only guess that it also affects the right side? Not really sure though.

And that is about it for tonight. I am hoping Kevin gets to come down to the house again tomorrow night, but we'll see. He is back to his normal self so it's possible...

Day 252 - Feb 7, 2009

Well folks, no sooner had I pushed the 'publish post' button last night than Kevin got sicker than a dog. I had to almost lift him out of bed myself and rush him back up to the hospital. Remember how I said I hoped I realized when his shunt would quit working? Well, last night was the test. It did quit and it took me a few minutes to figure out what was going on, but I did eventually get it. I already knew by his symptoms before we even left for the hospital and since this is the 4th time in roughly 6 months that it has quit - I think it's safe to say that this will be a large part of our lives forever.

So, Kevin has already had emergency surgery today to actually fix and reposition the shunt. He is doing very well already, but I will still be spending the night up there with him. I just came home now to grab a shower since I have been up since yesterday morning and at the hospital since about 2:30 this morning. I am eating a bowl of soup as I write this and then I need to head back up, so I am going to cut this one very short.

I will say this, as I sat in the surgical waiting room earlier today, I realized that no matter how much better Kevin gets, someone will always have to live with him, someone will always have to keep watch for this shunt thing. I think I knew it, but I was just so hopeful that he could lead a more normal life. And, I will admit, I was hopeful that I could too.

Day 251 - Feb 6, 2009

I am just so happy that Kevin has truly adjusted to not being at the hospital on the weekends. It is so nice to just have him get into bed and go to sleep like it's his own bed. Right now he is just sawing logs like there's no tomorrow, lol.

As for the house situation - I am feeling good about that at the moment. I don't want to say anything yet about it, but hope is in sight. I am just afraid to be too hopeful so I will wait to see what happens. Everyone keep it all crossed for this, otherwise I really don't know where we'll go. (I will keep the DAV in my thoughts too. I didn't realize they could help like that - thanks to whoever you are.)

And I have had a few comments about me complaining about the general. Yes, Holee - I do agree he deserves respect and frankly, as I mentioned yesterday - I do respect the service he gave for his country. But respect goes two ways and it's apparent that there is no respect for his fellow men and women coming from him. Otherwise we would not all have to go without so that he gets whatever he wants when he wants it. And to the anonymous poster that asked if it's official policy that the staff does what he wants - I hear quite often that the orders are handed down from above so I can't say for sure. I do know that tensions have been high since he got here a few months ago and people are afraid for their jobs. It's just such a shame all around - and it's also so aggravating.

I was also asked if there is a pool here - I heard a while ago that there was, but haven't seen it and no one has mentioned pool therapy to us. I will have to try to remember and ask about that on Monday. (the operative word being "try" as I am such an idiot anymore, lol)

Well, there are some logs that need sawed by me so I am heading off to bed!

Day 250 - Feb 5, 2009

I just have to bitch about something for a few minutes. Two things actually. First, the nurses forgot to give Kevin his medicines tonight. He is to get 3 meds at 5pm and I had left because my brother was coming and needed picked up at the train station. So we got back after 6pm and picked Kevin up to go to dinner and I never once thought to ask if he had his meds. It wasn't until we got back at 9pm that the nurse came running in asking if I gave them to him. Why would I have given them to him if we left more than an hour after he should've gotten them? I just assumed that they already did so. And then - to top it off - when they did give them to him, they almost gave him a double dose of the one pill. This is happening constantly because the pill needs cut in half and the nurses just aren't doing it. This is truly just one of the reasons I just can't leave him alone here. I have to be on my guard constantly and I think that's a shame. I honestly can't even leave for a quick trip downtown. Grrr...

The second thing is something that has really been bothering all of us on the 5th floor. I will probably make some people mad venting about this, but it's really just not fair. The problem is that we have a general being treated here. I am not complaining about that as a whole. What I am complaining about is how all of the other 14 patients and their families have to go without because the general wants this or the general wants that. For example - we have a family room where we go to socialize and where we have recreational therapy (patients watch movies, play games together, have parties, etc). We are no longer allowed to use that room for anything if the general is in his room because he is next door and he can hear the noise. So now, all 14 other patients have to try to fit into this tiny room to have our therapies and we don't all fit. Now nobody is going to any of the events anymore. I think it's just so sad that everyone on the floor is penalized because someone high ranking - that demands it all - is in our midst. There are so many other issues concerning him too. If we are in the middle of any therapies or activities and the G wants the therapist - they immediately have to leave us and go tend to him - it doesn't matter if it's our scheduled time or not. If we have our shower at a certain time and he wants to take one - tough on us. I could honestly just go on and on...

It just makes me so mad. I don't think it's fair that one person can wreak so much havoc on everyone around them. And understand - I give him high regard for the service he had given us - but he is no better than my son, or the guy in the next room or the woman in the next. So why are we all paying the price? Why not move him to a different room instead?

Ok, enough venting for the night. (but it still makes me mad)

So (other than my venting) we had a great day today. Kevin worked so hard on his therapies that I was amazed. We are focusing on him being able to stand up without the use of his arms. In other words, we need to strengthen those legs and the butt muscles. We are also working on his balance. So far he has none. If you have him stand still he would fall over without someone there to hold him. (and Jodi - he is just about 6' tall - I am 5'2" and Breezy is under 5')

And did everyone notice that he had jeans on in the videos? Yesterday was the first time that he put on a pair of jeans. I got all teary eyed seeing him look nearly normal for the first time in a year)

He is also doing very well with speech. He is trying to say everything now. Things are getting easier for him to say and I notice more automatic words just coming out. He really does try so hard and truthfully, we have seen amazing improvement on this. We still have a long way to go - but what do we have but time, right?

And as I mentioned - my brother came today. Kevin was utterly so excited to see him. I kept telling him that "Unc" was coming, but Kevin doesn't remember who people are by names. He only remembers by seeing photos or them in person. Kev's eyes just lit right up when he saw him getting into the m-van. And after we all (Chrissy too) went to dinner and Kev and I went back to the hospital, I asked him if he was excited that Matt was here and he nodded his head so hard I thought his neck was gonna snap, lol. It sure was nice to see them play off each other just like they used to too.

And that about sums up my post tonight. I do want to say to all of my friends that I haven't talked to in a long time - be patient. I am on the phone constantly with banks and organizations just working on this house thing. There is no time in the day for me to talk just for fun. Hopefully that will change soon as it's exhausting.

And to MaryAnn - you asked if our addresses were right for donations and you can do that (they are) or you can send directly to the benefit account we have set up for Kevin. I think I was supposed to put that address here on the blog, but I forgot. I'm sorry. I will do that as soon as I finish this post (look down the right side somewhere). Also, the Paypal address is correct, but they charge a fee for every donation so it really is best to go another route.

Again, I do want to thank everyone for all of the help - especially financial. We honestly could not be here with Kev without all of the donations. For this - I will never forget what everyone has done for us. NEVER.

Thanks again!

Day 249 - Feb 4, 2009

We had a really good day today. I stuffed a small turkey for dinner and we just vegged again. I spent a lot of time on the phone trying to find some help with the house situation throughout the day and Kevin and I played a game of Skipbo too. We honestly are trying to take it easier while at the house because we all need to start getting accustomed to a normal home environment.

As for Kevin, I don't think I told you guys, but he is able to do addition and subtraction with ease. Even larger numbers. It's just amazing to watch him do it. I like it that he can write the numbers too - granted it's not the neatest - but it never was, lol. And besides that - he now has to write with his left hand - that has to be hard too.

And now (because I know y'all are waiting for it, hehe) here are some videos of Kevin. I had to retake them today because yesterday's file just wouldn't upload. Too big, I think. So now it's in 3 different parts. Expect to see more quite often.

The first is of Kevin standing up:



This one is him walking (Thank you Betzida, for taking the video of all 3 of us):



And last we have Kev whipping around in his chair like there's no tomorrow. This is the normal Kevin - the one we expect to see riding his chair down a hill with no brakes like he used to do on his skateboard, lol:



Amazing, huh?

And I just LOVE this smaller chair. It is so much easier to get around in. And he fits under the tables to eat his meals with us and he can also get around himself (obviously) so that I am not killing myself pushing him all the time.

And I am going to finish tonight with a request for everyone to keep my Mom in your thoughts. Some of you know that they live back in PA and the weather has been kinda icy up there. Well, the other day she fell and broke her arm and then she turned around today and fell and broke her leg. As far as I know - she has never had a broken bone and now she has two at one time - and from different accidents to boot! How much you wanna bet that they end up moving down here soon?

Day 248 - Feb 3, 2009

I am just too tired to write tonight - sorry everyone. I just really need to get some sleep.

BUT...

I do have a surprise for all of you! I purchased a cheap video camera at Wally World and shot some footage tonight. I am uploading to YouTube right now, but it's taking forever so I will add it to tomorrow night's post.

Day 247 - Feb 2, 2009

Well, it turns out that Kevin did see some of the game. He woke up shortly after I left and watched it with the nurse. I am told he was just swinging that new SB Terrible Towel that was sent to him, lol! I wish I'd have been there.

He had a pretty good day today too. Nothing really new happened, but it was a good day. We did grab movies tonight and pretty much just lounged around.

And I didn't hear his cough or anything today so it must have just been a yucky day for him yesterday. Phew!

I am just going to hit a few more of the comments/questions.

Someone asked if he was gaining weight and he actually has lost a few pounds lately. Just a few - nothing to be worried about - but he really hasn't been eating as much lately.

Gina - thank you and your sister for getting copies of the paper for us. I was told today that the VA will be sending pics of Kevin from the media event to the Pittsburgh media channels. Can't say they'll use them, but you never know.

Linda from FC - thanks for letting us know about Stephen K. I did hear from him last week and knew he got hit hard - but I didn't realize how hard. I hope he is doing ok?

To everyone concerned about the VA loans - I did call them directly again and they assured me that they do not actually give out loans - they only insure that the loans will get paid if Kev would default. Now to me, that's a no-brainer to give the loan to someone like Kev - but the banks just aren't doing that. We did agree on a price with the builder of the home we chose yesterday and now it's up to the bank to agree or disagree to take us on. We have tried numerous banks and there is only one that is giving us a 'maybe' so we shall see. I wish I could say I felt good about this, but unfortunately - I don't. Things like this don't usually work out for us so it will be a miracle if it does.

Jenna - we did try USAA and it's a no-go. We haven't tried the Pentagon FCU, but I will call them if our broker can't get it to go through.

So we have to laugh when we say this - but we do own the mini-van, lol. We can always live in it...

Day 246 - Feb 1, 2009

Way to go, Steelers, huh? I admit that I am not a real football fan, but even I was grinning during that last homerun (haha - gotcha!), touchdown during the last seconds of the game.

Unfortunately, Kevin missed the whole game. We went looking at houses today and by the time we went back to his hospital room - he was exhausted. To be honest, he wasn't feeling real well and he has a slight cough by this evening. I will be keeping an eye on him over the next day or so. But anyway, he turned the tv off right about the time the game started.

We did manage to find a house today. Now we need to check on the financing end. I appreciate all of the advice everyone has given. If things don't work out, I will check on the other options. I also can totally relate to the anger some of you are feeling. It's very frustrating to be told you are going to get help and that you won't end up homeless and then you see that everything that was said was all lies. And it's sad too. People that promised to help us are hiding from us now (won't return phone calls or emails, etc)

Anyway, maybe it will all work out. It would sure be nice to not have to worry about all of this too.

And now I am going to answer some of the comments/questions. First, Gina - thanks for sending that link of Kevin being in the Arizona papers. Here it is for those that don't read the comments to my posts:

The Arizona Republic

And that would be great if you could send at least one copy! We would've never known about this if it weren't for you!

I also want to change my email address for those that want to write to me. It is now going to be lesliekamm@live.com My gmail account is getting a lot of spam lately and I don't have time to weed it all out. Anyone may write to me there, but please don't expect a response. Time is so limited for us.

Mel - thanks so much for getting the clip of the Mike and Mike show! (and thanks for the offer you made recently, but we just can't do that. We appreciate it though!)

Kathye - thank you also for the link of a different clothing company!

Tina D - we were told that the VA doesn't actually give the loan - they just guarantee it. A bank needs to give one first and that's where we are having trouble. I will be double checking this tomorrow though.

Anonymous - you asked if the asymmetry of Kevin's head is resolving and no, it's not. It's just the camera angles and also the camera being more forgiving sometimes.

OK, there are more, but I am days behind and right now - I am beat. I will answer some more tomorrow night.