Tuesday, March 31, 2009

Day 304 - Mar 31, 2009

Kevin wasn't feeling all that well today and he mostly slept. It was a sad thing because we waited until today to get pictures of Diane, Mary Jo and us. Needless to say - it didn't happen because he was so down and tired. I guess that means they will have to come back, huh?

And my dad made it here safe and sound. I picked him up this afternoon. Mom will be here next week.

Other than that, nothing new here. Kev really did sleep most of the day, although he did walk roughly 200 steps today in PT. He is really doing well in his therapies.

And now I really am going to bed. I keep nodding off while typing this and that's a pretty good sign that I need sleep, lol.

Monday, March 30, 2009

Day 303 - Mar 30, 2009

I think it's safe to say that we all had a pretty good day. Diane, Mary Jo and I went to the beach and I just slept for an hour or so while they walked along the surf. And I was so happy to find out that this beach offers those wheelchairs that will travel on the sand. Kevin wants to go to the beach so much and I told him we would when my family is here over Easter. It's going to be difficult because he can't be in the sun, but we'll manage.

And from what I am told, Kevin and Breezy had a good day too. He was tired because he claims that he didn't sleep at all last night, but he was still in a good mood.

He also went for the other eye exam today and now we are being told that he doesn't need glasses after all. I have no idea. I know the blurriness is caused by the vertigo so I guess we'll see about the rest.

And we got some fabulous news today! Mary, our FRC (Fed Rec Coordinator) called and told us we will be going back to BAMC the first week of May. YAY!!! I know for sure that Kevin will have his neck release and I'm not sure what else yet. I believe they will be looking at his eyes to possibly have that done too. I just can't wait to get his neck fixed! It will be so nice to have him be able to look up at me and be able to eat properly. I can tell you that Kevin's face lit up when we talked about it tonight. Thank you, Mary!

And unfortunately Breezy is leaving in the morning and Mary Jo and Diane are leaving in the afternoon. What a bummer. We all really laughed a lot and just had a good time the past few days. But on a good note, my dad is arriving tomorrow. We sure will eat good from here on out, lol! (My dad was an executive chef)

Sunday, March 29, 2009

Day 302 - Mar 29, 2009

Kevin didn't really feel like doing much today so he mostly lay around the house. We did go to the mall where he bought himself some jeans, shorts, shirts and a hat from Pac Sun and I got the biggest kick out of it when he was pulling out his debit card to pay for it and they told him the total. You should've seen his eyes bug out of his head, lol. All I could say was "Yeah - now you know how I felt all these years!"

After that, we all went to dinner at The Cheesecake Factory because Diane and Mary Jo had never been there. There really wasn't much twisting of the arm to go there though.

And that's about it. Kevin wanted to go back to the hospital tonight to sleep so he and Breezy left a little while ago to do that.

I didn't sleep much last night so I am writing very early tonight in the hopes that I can get to sleep pretty darn quick. We ladies are hitting the beach tomorrow so we need to get up kinda early.

Saturday, March 28, 2009

Day 301 - Mar 28, 2009

We had a very fun day today. We didn't really do anything, but my friends Diane and Mary Jo came to visit and added a new element to our day. We did go to the house and Kevin, once again, walked up the stairs. It was much easier this time because I was beside him helping him up while they were both behind, just in case. It really is amazing how much Kevin's face lights up when we go into the house. He just starts wheeling around like he is at some kind of amusement park or something.

We did have to go to the eye doctor's today though. He does have some vision problems and is going to need glasses, but because he doesn't know his alphabet (and he doesn't talk much) we need to do some different testing to know what his prescription needs to be. They are hoping to get that done this coming week.

And that's it for today. We are hoping to go and do something fun tomorrow and I hope it works out. Kevin needs to do something different.

Friday, March 27, 2009

Day 300 - Mar 27, 2009

300 days. Wow. Somehow it feels like 300 years. Like a lifetime. They say that people in our situations go through as many emotions in one day as a normal person goes through in half a year. I believe that. I can remember in the beginning how one minute I truly believed that Kevin would never make it through the trauma. The next minute I believed he would because he always does. The next I was so sure that if he did live he would be a vegetable forever and I could go on and on. There was not one second of one day that my head wasn't spinning with hopes, fears, realism, fantasy, despair, belief and so much more.

What's even real about all of this is that our days are still the same. Kevin is stable - yes he is, but there is still so much up in the air. Depression, cognitive impairment, physical deficits, you name it. And it's sad to say that things will always be unsure, but the truth of the matter is is that I still go through a thousand thoughts a day about our future.

Lately I am so worried about Kevin finding out about what he has lost. He does not know that he lost almost half of his brain. I keep thinking I should tell him, but I am just afraid to. I'm just not sure he can handle it. But even still - I am just waiting for the day that a doctor mentions it in front of him and I am scared that will be even more traumatic for him finding out like that. What to do? I just don't know.

So I guess my point is that even though Kevin is doing so well, there are still so many decisions to make and so many emotions to go through. I do wonder if it will ever change...

Depressing, huh?

Moving on though - we did have some great news today. It turns out that Kevin has had ZERO hearing loss! We met with the audiologist today and she tested him again and found not one bit of loss in either ear. He did have loss before his cranioplasty, but it has since cleared up. YAY!! And I must say that the doctor is shocked. She says she has never seen someone come through a blast with no hearing deficits. She wondered if he might have had ear protection, but there is no way for me to know the answer to this.

And to end, a few of you have asked how I am feeling and it's getting better, albeit slowly. I still am in pain, but it's either manageable now or I am just getting used to it, lol. Some of the people around us think I probably tore a muscle and I suppose it's probable. Kevin is 6 feet tall and I am nowhere near that and me hefting him around and everything is hard on the old body, lol. So who knows, we probably never will, but I will feel better soon (at least I hope so - positive attitude and all that!).

Thursday, March 26, 2009

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!!

Wednesday, March 25, 2009

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.

Tuesday, March 24, 2009

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...

Monday, March 23, 2009

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...

Sunday, March 22, 2009

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.

Saturday, March 21, 2009

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.

Thursday, March 19, 2009

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.

Wednesday, March 18, 2009

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.

Monday, March 16, 2009

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!

Sunday, March 15, 2009

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...

Saturday, March 14, 2009

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.

Friday, March 13, 2009

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.

Wednesday, March 11, 2009

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.

Tuesday, March 10, 2009

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.

Monday, March 9, 2009

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?

Sunday, March 8, 2009

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.

Saturday, March 7, 2009

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...

Friday, March 6, 2009

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...

Thursday, March 5, 2009

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.

Wednesday, March 4, 2009

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!

Tuesday, March 3, 2009

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...

Monday, March 2, 2009

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.

Sunday, March 1, 2009

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.