Sunday, November 30, 2008

Day 182 - Nov 29, 2008

Poor Kevin. He had a really rough night last night. Apparently his sitter fell asleep and was snoring so loudly that he only slept about 2 hours. The charge nurse somehow caught on to her being asleep on the job and removed her from the room twice. The second time - he had her terminated from her sitter position. He forced her to leave and he stayed in the room with Kevin the rest of the night.

I am really happy to say that Kevin is becoming better able to communicate as time goes on. He still doesn't talk much - but he is understanding things more, making it easier for us to play 'charades' to figure things out. He was able to explain to us that he only got 2 hours of sleep and he would snore so loudly showing us how bad she was.

And yesterday the nurse took his deodorant to the shower and left it in there. Kev was able to 'tell' me that too. I loved it when she argued that she brought it back and when we had her look to make sure - it turned out Kev was right and it was still in the shower room.

He is just becoming more and more observant. Super great, huh?

Other than that, nothing much happened today. We had a nice leisurely day at the house. It was funny though because he was flipping the channels and the car chase scene from Bad Boys II was on and we were all pumped to watch it and didn't we get all engrossed and after the 5 minute scene was over they started talking and it was in Spanish, lol. Me and Kev just looked at each other and burst out laughing. Obviously - we had to turn it.

So that's it. Breezy and I just came back from a ride out to scope out a house. We only have time late at night to weed out anything that's not right for us after viewing homes online. This home was just beautiful and it was already handicap accessible, but the area was dried up and desolate. It was also along a major 8 lane highway and was already loud at 12:30 at night. I can't imagine it during rush hour. So that one's a no-go too. We will be spending a lot of time at home so it needs to be somewhere where you can hear yourself think...

And now I am heading to bed. Goodnight everyone!

Friday, November 28, 2008

Day 181 - Nov 28, 2008

Not too much happened today either. We did manage to take Kevin off of the high blood pressure medication and although it was slightly elevated this morning - it's been fine for a couple of days now. That is such a relief! I hated to see him (or anyone his age) on that stuff!

Kev's buddy Ortiz came to visit again today too (from the dinner a couple of months ago). Kev's face just lights up when he sees someone he knows. We all had a really nice visit for about a half hour or so. He is here for about 2 weeks so we expect to see him more often.

So I did do a very small amount of Christmas shopping this afternoon. We don't have anywhere to put anything and with money being tight and us needing to buy a house, I am just not buying hardly anything. However, my friend Jeannie suggested I buy Kev a skateboard that he can roll back and forth with his right leg. I thought that was a super idea and purchased one today. This will hopefully spark a memory and also help with a little bit of physical therapy on that leg. I sure hope he likes it! Boards are such a personal thing...

And of course I can't mention anything I bought for Breezy as she reads the blog so...

That is going to sum up my post for the evening. I just put some meatballs in the oven so that I can make spaghetti tomorrow for dinner and I need to go back and check on them.

Thursday, November 27, 2008

Day 180 - Nov 27, 2008

I hope everyone had a great Thanksgiving today. We had a nice dinner and both the food and the company was great. I still miss not being with my family, but that's just the way it is. I suppose I am going to have to get used to it because we will not be living near them for a while.

To be honest, I do want to say something about the doctor's suggestion that we stay where it is warm - at least for a couple of years. I have gotten a few personal emails from people upset or just not understanding why we are going to be staying here. First, I do understand that there are people out there that have burns and live in colder states. That's just great for them and I am glad they were able to do that. Kevin isn't. He really isn't. This isn't me snubbing any person or any state or any town.

I think it's a pretty safe thing to say that each patient is different. The doctors and I are basing all of our decisions on Kevin's patterns and needs. We see Kevin violently shivering when his room is under 75 degrees. We see him moaning in pain when the water is only lukewarm in the shower. We see him not touching or eating anything cold anymore. There are a whole slew of things that we are seeing that frankly - the other patients may not have done.

And we can't actually say why Kevin can't tolerate the cold. He can't tell us. And yes - it probably is mostly from the burns. Maybe even all from the burns. But it could be part of the brain damage as well. We also have the issue of a weakened right side. Even with his room being so hot, his right leg and arm are usually ice cold. It doesn't matter that he has garments on, socks on and a blanket - he is cold.

So I think I am going to ask that everyone trust me to do the right thing for my son. Please know that I don't actually want to live in Florida and I can assure you that this is not easy. I would love to be able to go home and have some help. Breezy will be going back to PA to live shortly and it would be really nice if I could call a family member or friend and say "hey - can you come over and spot me for an hour while I get a haircut?".

Lastly - even if Kevin wasn't burned - we still will not be able to go home to PA for a very long time. Kevin needs to be within 30 minutes or so from a Polytrauma VA unit - at least for a while. There are 4 in the country that handle his place in recovery right now. The closest one to PA is Richmond, VA, but it actually costs more to fly there than to Tampa (strange, but true).

So there it is. I am laying it all out on the table. Once again, I ask that you all trust me. It is my goal to have Kevin in a home environment within the next 4 months and we will not be able to go back to PA at that point so we are staying here in Tampa near the best brain injury hospital in the country where the palm trees sway in the warm sun.

So who wants to come spot me for a bit while I go get a haircut? It was a beautiful, warm and sunny day here

Wednesday, November 26, 2008

Day 179 - Nov 26, 2008

Today was a slightly better day. We still had our 'off' moments, but we had some good ones too. We did learn today that Kevin is able to read more and more as time is going on. He still has trouble putting words to pictures/meanings sometimes, but it is getting better.

We also had PT down at the house today. We practiced transferring Kevin from his wheelchair to a comfortable recliner. Y'all should have heard the sigh that came from him when he landed his butt and sunk down in that easy chair for the first time. It was like he was in heaven!

And let me say, he did very well. I barely had to lift him up from the chair - he did the bulk of it himself and he also pivoted himself so that he was turned to go into the other chair. We are going to work on transferring to the bed on Friday if all goes well. If it does, he may be able to stay here for the night!

I am going to just answer some more of the questions for the night as I need to get to bed.

First, Jessica - you asked how Kevin was able to 'tell' me that he had been moving his arm on the sly...well, I can pretty much always read his facial expressions. When he showed me his arm moving, he first said "hey" in a matter of fact way. That was my first indication. If he woulda sounded shocked, I would have known he was. Second, he had this look after he did it of pride and guilt and just plain devilment. As soon as I saw it I asked if he had been moving it for days. I could just tell, lol.

Kathy - you asked about the therapy on his arm vs leg. He actually gets more on his leg because she is a faithful therapist. OT (arm therapy) has not been as good about being there every day. We also just lost Kevin's usual therapist about 3 weeks ago or so and Kevin is just not 'relating' to the new one. I think it's just because we really liked Jeremy.

An anonymous poster asked about a communication board or book and NO - he doesn't have one. We can pretty much tell what he wants - it's only on occasion that we struggle. The last couple of days he has been making this little "O" with his fingers - kinda like an A-OK sign and I just couldn't figure it out. Tonight - Breezy finally did. He was actually telling us that his show was over and it was time for his pills. The little circle he was making represented a round pill. We sure love it when we figure out something new, lol.

So I am going to end there for the night. I am still scouring the web for homes and want to get a half hour or so in before shut eye. It's my goal to narrow the search down to 5 or less and then take Kevin to each of the homes and see what he thinks. We have been showing some of the ones we like online and so far he really loves one of them. It's a bit more than I am hoping to spend though so we will see. I also have to see if there is some sort of temporary ramp that I can borrow to get him into these homes. Every single home here has steps to get inside.

Anyway, have a great Thanksgiving everyone!

Tuesday, November 25, 2008

Day 178 - Nov 25, 2008

Yesterday was a really rough day. Kevin actually had some sort of meltdown in the morning. Breezy had went in and said he was just in a foul mood since the time he had woken up. Nobody knows why, but he just kinda snapped and started screaming and crying. It was so bad that everyone came running. They had to take Breezy from the room and dope Kevin up to calm him down. I am not sure if it's part of the depression or if it's just one of those TBI (traumatic brain injury) things. Regardless, it freaked everyone out and Kevin is now on anti-depressants and seeing both a psychologist and a psychiatrist.

I can say that one of the things that Kevin is having trouble dealing with is the amount of pills he has to take every single day. We talked to the doc again this morning about it and we have eliminated 9 pills from his daily regimen. Every time I hand him the cup full of pills he got so upset - today he looked relieved to see less in there each time he was scheduled for pills.

One that I don't think is going to work though is the pain medication. We put him on a new kind that is a patch and I don't think it's working as well. We have had to give him additional pills every 4 hours all day. We were getting away from that the last couple of weeks or so. That's just something we have to discuss tomorrow, I guess.

And now I am going to end this post with some truly great news! Kevin began moving his right arm today!! He 'told' me that he has been doing it on the sly for days (or at least feeling it move) and during our happier moments of the day, he was really excited about it! I am going to take this as a good sign!!

Now I need to run to Wal-Mart to buy food for Thanksgiving. About 9 of us are getting together here for dinner and I am cooking. This is going to be my first thanksgiving away from my family so I hope I can handle it. We are all so close and it's hard to not be there. And I miss my dad. I have seen every other member of my family during the last 6 months, but not him. I sure wish we had a home already and could have everyone down for Christmas...

Day 177 - Nov 24, 2008

I am just going to pass on writing tonight. It's been an exhausting day and I am just too tired.

Sorry everyone!

Sunday, November 23, 2008

Day 176 - Nov 23, 2008

We had a better day today. Kevin didn't seem to be as depressed as he had been. We had one little instance where a girl of about 10 years old or so started crying when she saw him tonight, but he just ignored her. Or maybe he didn't comprehend why she was crying - I am just not sure.

Other than that, Kevin allowed me and Breezy to go see a community that we are considering living in. He stayed with his favorite sitter all afternoon and they watched "The Goonies" with two of the other patients and I guess they were all laughing their butts off. I just love to hear that.

The community is very nice - they all seem to be though. It has a very nice fitness center (which he can definitely utilize) and it's on a wildlife preserve so it almost feels like East Brady. I was pleased to see a bunch of teenagers playing football in one of the parks and it was overall very quiet there. This development is in the beginning stages, but they intend it to be a whole town at completion (with 8500 homes over 15 years). One thing I really like is that they will be having a community hospital with acute care built in the first quarter of 2009. In an emergency, we can go there until they can get us to the VA hospital here in Tampa, which is about 25 minutes away. The homes there start in the 170's and go up into the millions and I think it's safe to say that we are going to be on the low end, lol.

So anyway, we did tour a couple that were already pretty much handicap accessible (shower and front steps only need changed), but they were in the 500 - 800 range. Ha! We just walked through those so that we could drool. Man, I sure wish one of those were in our budget, lol!

And now I am just sitting here waiting for Kev to go to sleep. It's just shy of midnight and I am not seeing it happening anytime soon. There is a ROCKY marathon on and him and Vinnie are both watching.

So, I am going to hit a few more questions:

Ben - Kevin doesn't seem to remember names so I can't say if he remembers you or not. You also asked if we could maybe stay here until he is ready to come back to PA. That's more what I am thinking, to be honest. I am hoping we can do that, and if not, maybe we can come back to Brady for the summers at least. No matter where we end up, East Brady will always be our home. I also looked up the Wounded Warrior Bill and thanks for the info.

Lisa in Minnesota - I love the idea of Kev talking to other guys that have went through what he has, but unfortunately there really isn't anyone here that can do that. This hospital ward here is probably the most devastating ward in the country. I mean, you can get a prosthetic for every missing limb, but there's nothing you can do about missing brain tissue. And Kevin is honestly one of the lucky ones. Most of the guys here are way worse that he is. Maybe somewhere along the line someone will come in though and be in the place to help Kevin like that - who knows. I wish your step-son good luck in making the decision to join the Army.

Jodi - good idea on having someone that Kevin looks up to come to get him to snap out of it. I will have to give that some thought...and before I forgot - on Veteran's Day, you posted a short note to Andrew and hoped I didn't mind. Of course I didn't. Andrew, James and Dan will forever be in our hearts - along with all of our fallen and wounded soldiers.

Miss Em - great idea on having someone get my photos. I will have to try to find out where my storage unit is located and go from there. Ooooohhhhh Moe...can I ask a favor?

Martha K - thanks for calling Senator Casey's office for me - I will contact him soon myself.

Kristen - I had never heard of General Anxiety Disorder, but that is so what's going on. I kinda figured it would wear off once we are out in public more and it's not such a big deal to be. I'm glad it all went away for Travis! Say "hi" to him and everyone at work!

Ok - enough for tonight. I think he's sleeping so I can sneak on home...

Saturday, November 22, 2008

Day 175 - Nov 22, 2008

Not a whole lot happened today. It's Saturday so it was just a nice quiet day. We spent about 9 hours or so at the house just watching tv, playing Wii and eating (of course, lol) - we even all took a nap!

Breezy and I have spent quite some time scouring the net for homes. I found out yesterday that the $60K housing grant is now able to be given to active-duty members. That means that I don't have to even think about retiring Kevin yet. Phew! What a relief!

Now I just need to sit down and decide on whether to take the grant or not. With it comes a whole slew of regulations - like the fact that you need a minimum of 3000 sq feet. To have a house that size is quite expensive! It may actually be cheaper to forgo the grant and just buy a smaller home. I have a meeting with the VA Adaptive Housing rep on Tuesday. I will wait to make my mind up until after I hear what he has to say and once I look around a little more.

So I am going to hit on a few of the comments/questions I need to answer:

Craig - we got your wedding invitation. I read the letter to Kevin and he was grinning. Thanks for inviting him! Congratulations and good luck! Oh - and we would love the pic of Kevin. Please send it to

I would like to ask that everyone ignore that email address. I rarely check it and don't have time to handle any more email. Truthfully, I can't even handle what I get now. BUT - if there is something I need to know, feel free to use it. Just please don't expect a reply.

To everyone with advice on the cockroach situation - they moved Breezy to another room. Unfortunately they bombed the room she was in without giving her a chance to move all of her things first so we had to throw out all of the food and things. Grrr! We did go buy all new plastic containers and she sprayed all around the new room today. Hopefully all of this will help keep them out of this room!

Jessica - you asked for Kevin's shirt size and he is having to wear a medium right now. He also would prefer short sleeves - so far it's very hard to get even that on his right arm as it's hard to bend.

Ok - there are still about 50 email posts that I need to hit, but I am going to do them little by little. Some of them are just advice on the retirement thing and I will file them for future use.

Now I just want to ask one more question for anyone who knows the it possible to have Kevin's Purple Heart ceremony anywhere I want it to be or does it have to be in a hospital environment? Although this is just an idea at this point - I would like to have it next summer in East Brady. That community, and all those that surround it, deserves to be part of the event as they are all the reason we have been able to be here to help Kev through all of this. When I received the award in the mail from Germany, I stuck it away for it to be presented in the correct fashion and I really think this is what I would like to do. But - am I able to? Or not?

Friday, November 21, 2008

Day 174 - Nov 21, 2008

Once again, some GREAT news and some bad news. First the bad - depression has really set in for Kev. It is a major effort to get him out of bed. He just wants to lay there and sleep. I asked him today what was bothering him and he pointed to his 'dead' arm first, then his head, then the burns on his neck and last his whole right side. I try to always point out the positive, but he's just not listening. The psychologist wants to give it two weeks to see if he comes out of it on his own, but I know anti-depressants take roughly 3 weeks to kick in and by then it will be 5 weeks of him being like this. It has been getting worse every single day and I'm not sure we can go 5 weeks without aid. Gosh knows I hate to put him on another pill, but this one might be one that we need.

Moving on to the fantastic news though - I pretty much forced Kev to go to PT today and Barbara then forced him to take his first steps! Yes, Kevin walked 6 steps with the help of the parallel bars and the therapist! He was so excited and proud of himself! He did really well and he even let go of the bars sometimes. He did get nauseous toward then end, but that was ok - we had the bucket ready! Here are some pics of this huge milestone:

Now I need to sign off. It's almost 11:00 and Kevin is still here at the house. We have totally escaped since about 5:00 this evening. I am hoping that he can stay overnight here with me by next weekend. We just need to work on transferring him from the chair to the bed and then we are good to go. The therapist thinks he will be able to do this on his own within 2 weeks if he comes to therapy every day. I sure hope so as we go to Disney World on the 8th of December!

Thursday, November 20, 2008

Day 173 - Nov 20, 2008

Breezy and I went to see The Phantom of the Opera today. It was pretty good - for me anyway. Breezy fell asleep, lol. She really hated it. Kevin was originally supposed to go with us, but apparently he remembered the other day that he just isn't into things like that. Darn! So anyway, he chose to stay at the hospital with his sitter instead of go. This was the very first time that he was aware we were going to leave and he was okay with it.

He did have a good day though. We went to the MOAA dinner tonight and he went along. That's the one from last month where he remembered Ortiz. He had a good time, but it was very overwhelming. So many people coming up to him. We also took Vinnie with us. That is Kev's roommate. They get along really well - they play off each other and they even arm wrestled yesterday. It was so funny. Here's a pic of the kids with their thumbs up:

Other than that, nothing really happened today. I do have to tell you guys that Breezy woke up this morning with a cockroach crawling on her arm. She has been seeing a lot of them lately so I am sure her room is infested. They are moving her to another room, but it's not really going to matter. The whole place is crawling with them - this is going to be her 4th room. And the one time she complained at the front desk - they handed her a can of bug spray. Seriously! I really don't understand how the Army finds it acceptable to put the families up in a dump like that. I understand they have a contract and all, but it's still just not right. I can only bet that none of the families lived like that previously.

So, I am just going to end here tonight. I want to go to bed kinda early as I am just tired today. I still haven't made any decisions yet on the retiring thing as I still need to research. I guess I can safely say that my decision probably won't be made real quickly though. I do want to thank everyone for sending all of those links to sites with information and for all of the advice. Truly - thanks!

Wednesday, November 19, 2008

Day 172 - Nov 19, 2008

We had some great things happen today. And we had one not so great thing happen too.

We will start out with one of the good things - a huge "Thanks" goes out to Steve K for helping us with Kevin's pay issue. I was told that you called the liaisons here at the hospital and everything was all figured out. Miraculous, huh? I already knew that from talking to you, but it was still nice to hear them admit it. And let me tell you - I had no idea just how badly they had his pay messed up! I told the bearer of good news that I want a meeting set up for next week where all of his pay, from the day he signed up through today, is explained to me. I am gonna be a professional military financial adviser by the time that meeting is over! Thank you so very much! That is just one less stressful thing off my plate!

And now we will hit the kinda bad thing (which is sorta a good thing too...). Kevin has realized that things aren't right with him. He just now understands that things are different than what they were. This is a good thing only in that he is progressing and it's just one more step toward recovery, but it's horrible to watch. I watched him cry last night as I handed him his meds and he had to swallow 7 pills. He's always had to swallow at least that many pills before bed, but he must now understand that he didn't used to have to take them. I think, up until now, that he just accepted his lifestyle as if it had always been this way. And tonight Breezy came into my room with him from the dining room and told me that he was crying because his arm/hand won't work. Again, he has known all along it didn't work and was fine with it, but he's very upset now.

I actually knew this was a step in the process, but I had so hoped it would wait until he could talk, until he could express himself. It is so dang hard to guess what someone is feeling and thinking and to help him through this is going to be one of the hardest things this ordeal will involve. The last thing I want to do is introduce emotions or thoughts that he isn't thinking of, but how else will I know if I hit on what he is upset about at the time of our discussions? Boy, this sure is going to be tough...

So now back to the other good thing...are you ready? I mean...really ready? Kevin had his feeding tube removed today!! YAY!! The poor kid was so scared (another new thing - fear of upcoming events) because they can't really do anything but yank the thing out. Man - I could tell it was painful for him. But you guys just can't imagine how happy he was to get it out! He pointed out the hole in his belly to every single person that walked in the room. He was just so happy about it!

Kevin also came out with the phrase "No way" today. That was pretty exciting! He says it clearly (for the most part) but we learned today that he doesn't know that I am mom. He can say mom. He just doesn't know that I am to be called that. I think he remembers that I was always there as he was growing up, but there really is no way to be sure.

And a friend of ours, Lisa O, sent us some pics of Kevin when he was maybe 5 or so? He was with her son Patrick and they were dressed up like knights. Kevin stared so hard at those pictures and then all of a sudden said "HEY". He got that gleam in his eyes and you could tell he remembered. Thanks so much for sending those Lisa.

Please, if anyone has any pics of Kev through the years, please send them along. I could kick myself for not having mine brought down before the movers came in. It would have made such a difference to show him things instead of just talking about them. But, I just didn't think of it.

Sometimes I am just such an airhead, lol.

Day 171 - Nov 18, 2008

Wow! Ok. Geez...where do I begin?

First, I guess I do need to point out that the reason Kev can't tolerate the cold weather that well is due to his burns. You must remember that he still needs to grow some layers of skin and I am told that that can take a long time. Years sometimes.

Second, no one has approached me about Kevin retiring. Not one person. I was just told about the $60K housing grant that is out there, but Kev needs to be retired to qualify for it.

Third, it's not that we were told we CAN'T go home - we were told it may not be in Kev's best interest to be in the cold weather. Huge difference. So please, please don't think I am saying that all wounded soldiers need to move down south.

And I do realize that we can keep him bundled up - but remember - his WHOLE face was burned. It's impossible to keep his whole face covered - and frankly, what kind of life would that be if we could?

Believe me when I say I don't want to move here. But if I look at Kevin's needs first - he needs to be where it's warmer. And as an FYI - let me point out that when the heat is turned down to 70 degrees in his hospital room - he is shivering. And I am not exaggerating - he is literally shivering. He is cold if it is turned below 75.

So this isn't something that I am just lightly making a decision on. Kathie in Brackenridge mentioned that she could tell that I have been discouraged lately and she is partly right. But even more, I am just sad. I am sad that this has happened to my son, my daughter and myself. And I am sad that we have had to give up everything that we have worked so hard for - our home, our jobs and now even our friends and family being nearby.

But, that's just the way it is, I guess. Some people have an easy life...and others don't. We just happen to fall into the wrong category.

So, that being said, I have tons of info to look through from everyone that posted a comment. I did talk to Steve K and we plan to talk again soon. I was so glad that I actually had the time to talk to him today as Kevin was sleeping. I know there are lots of questions and comments, but I need to shift through them before responding.

And now moving on to some truly fabulous news on the Kevin home front...I had to miss his PT today to return the van we borrowed and Barbara (his therapist) made a special trip back up to see me. She was so excited that she was nearly dancing around. It turns out that Kevin showed her today that he can move his right leg and he has some control over it! She informed me that she has no doubts whatsoever that he will walk out of this hospital - maybe even in the 4 months that I am reaching for.

Great way to end a post, huh?

Monday, November 17, 2008

Day 170 - Nov 17, 2008

We had a really bad day today. It was so bad that Kev didn't even get out of bed once. He was just very miserable. We really don't know why - maybe he just was having an 'off' day. Hopefully he feels better tomorrow.

So I have a question for anybody who might understand the military vs VA systems...

Would it be better for us to retire Kevin? And please give me reasons why we should or shouldn't.

I had a long talk with the doctor last week and it's my general feeling that Kevin is emerging on his own and this hospital is doing nothing for us (therapy wise) than any other hospital or home health plan could do. We are getting 45 mins of speech and an hour of PT/OT combined 'mostly" every day. To be honest - every word Kevin has learned, every new event, has been taught by Breezy or I. I just can't see being here.

So I chatted with the doc and he agreed that Kevin doesn't require all of the newfangled therapies or equipment that is needed by those less emerging than Kev.

To me, that meant that we could go home soon, right? Wrong.

We actually can leave the hospital once Kev has his skull replaced, but I was informed that it won't be in Kevin's best interest to go back to Pennsylvania and endure the cold winters.

That means that we have to make our home somewhere warmer. My first thought was to go back to San Antonio as I really liked it there. But there are two reasons that I had to nix that idea - one - plane tickets would be too expensive for my family to come and visit and two - we need to be close to a polytrauma hospital. After further researching this over the weekend, it appears we are going to have to stay here in the Tampa area. This makes me sad. I don't really want to live here. I just want to go home.

But, after having yet another good cry about this issue - I do realize that it just doesn't matter what I want. It's all about Kevin and he needs warmth. And now I need to figure out how to buy a home for us.

Bringing us back to my question - Should we retire Kevin from the Army?

The VA will give $60,000 to help buy or adapt a home for 100% disabled veterans. I will need that money to have a down payment. But do I want to retire him to get it?

I am just so scared to make the wrong decision. First, I don't want to retire him in case he doesn't want that. (but to be honest - he tells me he doesn't want to stay in the Army anymore - however - I don't think he understands what that really means) Second - am I going to screw him out of medical care he will only receive as an active duty member? Third - am I going to screw him out of benefits he will only receive as an active duty member? And what am I not thinking of? I am completely uneducated about the military. And about the VA.

So please - anybody - throw your thoughts, good or bad, out there for me to think about. I was told I needed to make a housing decision in about two weeks if we are going to go home within the next four months or so. I guess this is the time frame it takes to buy/build a home for someone that is handicapped and I am anticipating the cranioplasty to be in Jan or Feb. We would need some recovery time and then I want to stay long enough to make sure he doesn't reject the plate in his head.

I have been really worried about making this decision. I am just so scared to do the wrong thing for Kevin.

So help me, please! Just click on the word "comments" at the end of this post (if you have never done so) and give me your 2 cents...

Sunday, November 16, 2008

Day 169 - Nov 16, 2008 where do I begin...

First, we did get a van for the weekend, but we didn't really use it much. I think I already mentioned that we went for a ride on Friday night and yesterday we did venture out to The Cheesecake Factory. Here is a pic of Kevin sitting in the van. His chair wheels right in to the front passenger side:

First, I will say that he handled the ride very well. I think he just needs to be in a better vehicle and closer to the front. But, I will be the first to admit that the outing wasn't all that great. Although it's a delicate situation, Kevin is just learning how to use a urinal after months of being cathed. Unfortunately, during all of our outings, he thinks he has the urge to go to the bathroom the whole time. I assume it's stress related. So, we did spend the whole time at the Cheesecake Factory in the men's room. Yes - the men's room. I found that most of the guys could care less that we were in there. Only one slammed out and by then - I coulda cared less.

See? I told ya I'd get used to it.

Anyway, here is a pic of Kevin in front of the glass case full of cheesecakes. He was still in a miserable mood, but at least he was able to look at the camera. I promised him another trip back once we get this all under control.

And to show y'all how much he really does love it - here is a pic of him at home eating the Chocolate Chip Cookie Dough Cheesecake. I just can't begin to tell you guys how much he loves this stuff!

Today, we actually had a lazy day. We didn't even go anywhere. We had planned to go to the movies, but we decided to stay at home and play. I FINALLY found a Wii and we all bowled all day. And it took us a while, but we even got Kevin to play, lol. I knew once we showed him what a good time we were having, he would want to join in. I am so glad that he at least has the use of his left side and can do these kinds of things. I am also proud to say that it didn't take him too long to catch on. Here is a pic of he and Breezy playing:

Other than that, it was a quiet weekend. Kim, Breezy and I did head to the Hard Rock last night. We had fun playing the penny slots for an hour or so. There just isn't much time to do things after Kev goes to sleep. I think we are all so tired by then that sleep sounds more inviting than anything.

And now I am going to head home. My sister leaves tomorrow and I am hoping we can just BS for a while. Mainly, she has just jumped in and helped with Kevin (giving us a much needed sleep-in 3 days in a row - WOW!), but it hasn't left any time for visiting.

Day 168 - Nov 15, 2008

I am going to pass on writing tonight. My sister, Breezy and I all went out for the evening and it's late.

I will catch you all up on our weekend tomorrow night.

Friday, November 14, 2008

Day 167 - Nov 14, 2008

Kevin started out having a crappy day as he had to have some sort of gastric test to find out why he is vomiting. The poor kid had to eat radioactive scrambled eggs for it too. He did well, although he did vomit, but it lasted two hours and he was exhausted by the time it was done.

We were supposed to go to the movies today with rec therapy too, but he just wasn't up to it.

But...we did get a van for the weekend so when I picked it up late this afternoon, we got Kevin loaded up and went for a long car ride (about an hour). We kinda just did a loop and didn't stray too far from the hospital just in case we had trouble. Kevin REALLY wanted to go to the Cheesecake Factory today, but I talked him into waiting until tomorrow afternoon as it is a Friday night and it would've been packed. I also wasn't sure if he could handle going that far as we only went 2 blocks the other day and he was in so much pain.

So...if all goes well...tomorrow we are heading to International Plaza for Kevin to drool all over the glass showcase just full of awesomely delicious cheesecake, lol. I will take pics of the event too - it was already dark by the time we got him loaded up tonight.

Wish us luck tomorrow! I so want us to all have a good day!

Thursday, November 13, 2008

Day 166 - Nov 13, 2008

We didn't have a very good day today. Kevin pretty much slept on and off all day. I'm not sure if it's a new medication that they put him on or if it's because he has a roommate and Vinnie was making noises Kev is unaccustomed to all night. The doc was going to take the new med off the list, but I asked him to give it another day. I don't want to remove a med that could have a good effect down the road if it's not necessary, kwim?

The doc is also wanting to start Kev on a medicine that will help with his ability to speak. I was really excited about it, but it turns out that there are some pretty major side effects. I am in the process of researching it and will make a decision shortly. His speech therapist told me that a lot of the patients here take it and have no problems. But's not a decision I can make lightly.

Now I need to sign off early tonight. My sister is coming to visit and I have to run to the airport. The sitters for Kevin have been reinstated so I can feel safe leaving him again.

Wednesday, November 12, 2008

Day 165 - Nov 12, 2008

We had a pretty decent day today. We did get a roommate and that's a little challenging, but at least he isn't flashing me, lol. He seems like a pretty good kid so we can handle it.

I had a long chat with Kev's primary doc today too about the sitter issues (among other things). I told him that I am not feeling safe here anymore due to all of the nursing issues and I don't think Kevin can be left alone. To be honest, I don't feel anybody that can't get a nurse's attention in times of distress should be left alone. So, I believe he was planning to add a sitter back onto the schedule, but it didn't happen yet. I'll be patient - until tomorrow.

I also straight up asked why they didn't just drain the rest of the fluid out of that sac above Kevin's left ear. To my way of thinking - the fluid is causing the vertigo and pressure pain. We should just drain it, right? But, he informed me that some of that sac is actually part of Kevin's brain. Now I knew it wasn't in it's proper place, but I didn't realize that it was out that far. And from what he said, it probably won't go back into place until the cranioplasty. Man, that scares me...

As to Kevin's pay issues - the liaison came to me today and told me it will probably take a while longer to get it figured out. I told him he still had 3 days but that was all he was getting. He said that someone up the line hasn't gotten to it yet and I told him that as long as he has his own butt covered all will be well...for him anyway. TR - I didn't drop your name exactly - but I did tell him that I 'knew' someone at the Pentagon that was just waiting to hear from me. It's not really funny (yet it is), but he started dripping and backpedaling and told me he would speak to me tomorrow. Man...he was scared. I suppose I shouldn't take such glee in this, but the look on his face was really funny. Showing my snarky side, eh?

Other than that, nothing much happened today. We did have a bone scan, but I don't have any results yet. It was just a follow up to the H.O. to see if it's still an issue or if there is more bone growing. I will let you know as soon as I hear anything.

So it's midnight and I am going home. The sitter will be here in a few minutes and I can feel safe leaving. Have a good night everyone!

Tuesday, November 11, 2008

Day 164 - Nov 11, 2008

Happy Veteran's Day to all the veterans and military personnel out there!

So we had another good day. We just had one or two little vomiting incidents and the rest of the day was pretty nice.

We started out with a nice parade here in front of the Fisher House/Hospital. We were able to get Kevin up and ready in time and we even managed to find a nice shady spot to stand in. Here is a photo:

We then went to a BBQ that they had here at the hospital, but it was too sunny and I just can't manage to hold the umbrella and push the wheelchair at the same time yet. They actually accommodated the patients though and had a space set up in the auditorium where you could eat and watch some young dancers perform, so we went there instead.

Which reminds me - keep your fingers crossed for a nice overcast day this weekend because an organization is bringing a van for us to use and we want to go to Busch Gardens. It's the closest thing to do and I knew if we needed to we could get back to the hospital quickly. (and yay! there's a family bathroom there!!)

And then this evening we had a special guest here and he made a special trip down to the Fisher House to meet Kevin. Kevin was taking a nap and didn't want to go up to the hospital to meet this person, so the sports legend Mike Ditka came directly and personally to see Kev. Apparently he is a Pittsburgh area native. Here are a few pics of this event:

And just so y'all know how unsportslike I am - I never heard of the guy, lol.

Oh - and I forgot to tell you guys that Kevin learned to say "Bye" yesterday. Breezy taught him how and he is quite proud of himself. It makes it easier too because he would always say "hi" when he was really saying "bye" and anyone leaving the room would come back in and it could take forever for them to understand he couldn't say 'bye' yet, lol.

So I am going to hit just a few questions and then I want to watch a movie tonight. Breezy is staying up at the hospital until at least midnight tonight, giving me the 'night' off.

Brenda - Kevin is 173rd Airborne.

Jessica - that cafepress site is great too. I will spend some time looking through it but I would think anything would work! And I really like the button you sent the link for.

To everyone that sent suggestions on comments due to the stares - love them all! I will just bet all of them will pop out of my mouth at different times and probably that 'Italian Salute' will be fired off as well, lol.

Petra - as of today, Kevin's pay has not been taken care of. They have 4 days to fix it or my mouth starts opening. I gave them one month and the 15th will be it. I have kept all of the phone numbers from the people that posted here with their info and I will contact everyone. This is just not fair and I shouldn't have to fight this fight.

As to complaining to the caseworkers about the quality of care, I have a meeting tentatively set up with the director of the unit. I have already went through every available avenue and now I am at the top guy for this ward. I hear he gets things done, so we will see...

Leslie - if you want to make Kevin a hat - that would be great. Take your time though. He can't wear one until his cranioplasty is done.

Ok - off to watch the movie. I keep falling asleep a few minutes into it so I am hoping I can make it through, lol.

Monday, November 10, 2008

Day 163 - Nov 10, 2008

We had another great day. Kevin was actually in the chair about 11 hours today and we went to the house for a good 6 hours. We played cards again outside and then we had a nice dinner and followed it again by some tv.

I love when I come to the hospital and we have a nurse that really cares and we get him showered, lubed up, compressed and dressed by 10:30. This enables us to have a more normal day. Unfortunately, we have been having a LOT of nursing problems and to be honest, I am getting a little frustrated.

To hit a few of the points - Kev is not supposed to ever be alone, yet for the past two weeks he has been alone when I have arrived nearly every day. Some of those times he has even been given food or drink and he is absolutely not allowed to eat/drink without supervision. One time his bed was the absolute highest it could go and one of our issues is his trying to get out of bed and falling. Then we have had other people's eye meds in his room and I have to wonder how often he has been given the wrong ones. We have also had meds not even dispensed. There are just so many frustrating things going on here. And I do understand that it's probably the norm everywhere, but I have to ask - how can anyone feel comfortable leaving their loved one in this type of situation?

It's actually made my days even longer. I used to leave when he fell asleep and sometimes that was like 9:00. Those were the 12 hour days. Now I have to wait until close to midnight even if he falls asleep early because they did remove the sitter from 4-12 and I was actually ok with this when they did it. But since then, it was proven to me that Kevin knows HOW to ring the call bell - but he doesn't understand WHEN to.

Case in point - while in the middle of writing this post, Kevin threw up. I was in the hallway talking to his nurse because he was trying to go to sleep. I was out there maybe 3 minutes. So Kevin was getting ready to vomit and didn't understand to call the nurse. Luckily - I heard him moaning and rushed in. If I hadn't - where would we be? He could have choked to death on his own vomit as he is usually laying down when it happens and can't hold his head in the right position.

Grrr...I really hate to bitch about these things, but I am just so frustrated and tired of having to deal with it all.

Now see how my moods are just swinging? I started out with this nice happy post about having a great day and ended up with Kevin being severely sick and venting about nursing issues.

Calgon, take me away...

BUT - I am going to revert back to something good (can't end on a bad note, now can I?). The Steelers were kind enough to send Kevin a huge box of goodies! He received a football signed by each and every one one of the team players. He got an autographed framed photo of Troy Polamalu. A personal framed message from the owner of the team. A really nice shirt. A team photo that is framed as well and a whole bunch of other things. Here is a photo of Kev with some of it:

Pretty cool, huh? Kevin was really excited and Breezy was really jealous, lol. I wish I would have caught a pic of the guy on the left side in blue. He is actually the one responsible for all of these items arriving. He called the Steelers home office weeks ago and talked to them. He works in Prosthetics and is in charge of Kevin's helmet. Once it's made - he is planning to have it painted with the Steelers logo on it. Great guy. And the nurse in the pic is a wonderful woman too. Never had a problem with her. I keep telling her she is coming home with us when we go...

Sunday, November 9, 2008

Day 162 - Nov 9, 2008

We had a great day today. Finally! We got up and moving, but we were lazy and didn't go down to my house until about 4:30 or so. We stayed outside and played WAR (the card game) for quite some time. After that, we ordered dinner in and Kevin's appetite came back with full vengeance. He ate two orders of Shrimp Scampi, some steak, some chicken and bread and all the other sides we got. It was so nice to see.

After that, we just watched some tv and Skyped with my sister, Kim.

Because it was just a lazy day, I don't have much to say so I am going to just answer some questions from the comments:

First, Em - that's a great website. The only problem is that Kevin was part of OEF (Operation Enduring Freedom) in Afghanistan. He wasn't in Iraq. And for some reason, they don't have any OEF merchandise yet. I plan to email them and ask if they will eventually have OEF items in stock though. The merchandise is really great. Thanks for the link!

Brenda (and everyone else) - I do have to figure out how not to be mad when people are staring. I like the sign idea, but don't think Kevin will go for it. I just have to think of a nice 'passive agressive' remark, lol. Hopefully it will just come to me next time we are out (which is Friday - we are going to the movies if all goes well). I am typically not a nasty person so I am sure with time none of this will matter to me. I just hate the possibility of Kev feeling hurt that people are staring at him. After a while though - I'm sure neither one of us will care anymore.

Marianne Q - we would love some baked goods. Jodi sent us so many homemade cookies and brownies that we all gained major weight, lol. Not to mention all the Halloween candy everyone sent, hehe. Seriously though - I don't have the time to bake anymore so Kev will love it. And thanks for sharing "your Kevin's" sensitivities to the red dye. It felt good to know that I am not just grasping at straws insanely.

Brenda (again, lol) - you mentioned the gastroenterologist prescribing an antibiotic for your mom. Kev's gastroenterologist has done the same. His stomach doesn't always empty very quickly either (how could it though with all the food he eats, lol) and I thought they were nuts prescribing that, but they say it helps move along the digestive system. Go figure, eh?

That sums up everything for today. Gotta get to bed...

Saturday, November 8, 2008

Day 161 - Nov 8, 2008

We had a much better day today. Almost like it had been for weeks before all of the pain came.

So, I have a lot to tell you. Let's see...

First, the pain did begin to go away when I eliminated the red dye. The weather really hasn't changed much and it could be the room temp, but I realized that we go to my house daily and it's colder down there. I still can't say that is was the red dye for sure, but we shall see. Now I am not saying that Kev has no pain either - because he does. But, he only has it when he is being moved to the chair or hitting bumps in either the chair or the car. We have been medicating him before moving him and that seems to be sorta working. All this past week, he would even be laying in bed just screaming in pain - that is not the norm for him at all.

We have also started the pain regimen. Somehow, all of his pain meds got canceled the other day, so we had to start all over again today. What a mess that was.

I have also decided to have our cranioplasty here rather than go back to Texas for it. I will admit that I wasn't overly impressed with my neurosurgeon there (for so many reasons) and I really like the team here. We have begun the process by having our CT scan solely for the purpose of. I was told that it takes over two months for the plate to be molded and I figured I better get the decision made. Kev's primary doctor also told me that often times people do so much better with their recovery after their cranioplasty. And I know myself that on some occasions people have awakened after the surgery with the ability to talk. Understand that that isn't the norm, but it can happen. I would so love that - but I am not looking for it. This way, if it happens I will be elated and if it doesn't, I won't be crushed.

And Alison, thanks for reminding me about the other CT scan. The docs were excited to see that his brain has moved substantially back toward where it needs to be. We still have some movement to go, but it has moved quite a bit. I will be adding some pics to this post and you guys will see how dramatically his head size has went down. It's truly unbelievable.

We also had a consult with the doctor that will do the eye surgery on Kevin. He told me that he still has no scratches (I am so anal about the eye meds to keep them lubricated) so we can wait if I want to. I think I am going to wait until the beginning of January for it. So far, we are only going to do the left eye and the plastic surgeons are thinking about waiting to take care of the burns on his neck. This is one of the reasons I want to wait until Jan for the eye surgery because I really want to do them both at the same time. I hate the risks involved from anesthesia. My heart always hurts so bad during and after surgery just because of the possible complications.

Moving on, we did end up going on a trip to mall. We had about 20 minutes of a good time. I actually left there thinking that I just can't do this. It was so hard dealing with someone in a wheelchair. I am sure it will get easier each time we go out, but some things hit home with me. For instance, and this is a biggie - how on earth do you take a male to the bathroom when you are a female? I tried to take Kevin into the 'womens' room and he had a fit! He put his left leg up on the doorframe and stopped me from wheeling him in there. He was nearly screaming and I didn't know what to do. It's not like I can just go into a 'mens' room and make everyone leave. I'm sure the place of business I am in will frown at that. So how do you do it?

And then there's all the looks from people. I have thought about this so many times, but Texas never even blinked when they saw their soldiers that were wounded. Here? Heck, I was so pissed off that I truly almost said something to the two clerks at Subway, not to mention the hundreds of other people that stared rudely. I guess I need to figure out how best to deal with this because it is going to be an issue everywhere we go. and I surely can't start smacking people upside the head now, can I?

Anyway, as I said, we did have 20 good minutes. Here is a pic of the kids in the candy store, lol:

By the time this was taken, Kevin was already leaning toward the right. He does this sometimes when he hurts.

And here is a pic of Kev riding the bed bike:

That was exciting because Kev rode for a full 30 minutes and I am pleased to say that he even rode with just his right leg. He literally was able to pedal with that leg. He was so excited, and so was I! Notice his muscles in his left arm, lol. He was showing off how powerful he was since he could move that leg. Always a jokester, that Kev!

And to finish off this book for tonight, Kevin had a couple of boxes of his stuff arrive from Germany. We have nearly everything now, we are just missing all of his movies and his Xbox games. I was so happy to see his Blackberry in there cause that thing was expensive. And let me tell you - Kev was really happy to see some of the items too. Here was his favorite, lol:

Sgt G - if you had anything to do with sending this stuff - Thanks! It was really nice seeing his uniform with all of his pins and things. I thought I took pics of him holding his uniform, but I must have deleted them by mistake. I will retake them soon.

And now I am going to hit the hay. I know I have some questions that need answered and I will try to get to them tomorrow night.

Day 160 - Nov 7, 2008

It has been an incredibly long week and I am too beat to write tonight. I will sit down tomorrow afternoon and catch everyone up. There is quite a bit to say, but I am just exhausted.

Thursday, November 6, 2008

Day 159 - Nov 6, 2008

Kevin did seem to be much better today. We actually had a great morning and we only had pain when we went to the mall today and that was because the ride over was too bumpy. Once we got back, he got back into bed and was fine again.

Not sure if it was eliminating the red dye, keeping the heat regulated or the weather being slightly better, but I'll take whatever it is. And here's hoping to another good day tomorrow.

So, I am going to cut it short again tonight as I want to crash. I will write more tomorrow night and I will have some pics of him riding the bed bike and us being out at the mall.

Wednesday, November 5, 2008

Day 158 - Nov 5, 2008

Things really weren't all that much better today. Kev has been in pain and he has been vomiting on and off all day. We started our pain management regimen today too, but we already had to up the doses and tonight we had to give him a shot of a totally new painkiller and finally...Finally! He is feeling well.

It's currently 11:11pm and he just ate half a pizza. It's the first time he felt well enough to eat today and when Kev can't eat? There's a real problem.

So I think the pain management doc and I are going to need to revisit the situation tomorrow. I did talk to our primary doc about this as well today, and he is thinking that we need to go a step further, at least for a little while.

And obviously we did not go to the mall today. We are going to try again tomorrow. Hopefully he feels better.

So getting to some of the ideas y'all have thrown at me...first, Brenda - I would never be offended from you comparing Kev's situation to your dog's situation. And actually, the weather change makes a lot of sense. I will say that it has been on the cold side here lately and someone keeps turning his heat down in his room making the temp fluctuate (nobody knows how it's happening though...must be a ghost - and yes - you are hearing sarcasm drip right there). But anyway, I don't have time to go back and check this out, but I will pay attention to that from here on out.

And this could so be grasping at straws, but I remember there being a link to certain dyes and hyperactivity in both children and adults. Oddly enough, Kevin has been drinking red Gatorade the last three days. I don't know if this could have some bearing on it, but I won't be buying red for a while, just in case.

Sarah, you mentioned Kev taking Neurontin. We are actually in the process of weening him off of that. We just started it recently and we believe that is what was causing him to sleep constantly. It seemed every time he took those pills, he was out like a light within 20-30 minutes. We are down to only taking it at night and happily - he didn't take as many naps today. And tell everyone at work I said "hi"!

So many things going on all at once, huh?

Holee, I agree that pain management is a good thing, and I am all for it when necessary. In the past, I would never have worried about Kev taking pills unnecessarily, but he's not mentally the person he used to be. I was watching him ask for sleeping pills before even trying to go to sleep. I also was seeing him ask for pain meds while playing around without any signs of pain. I think if a person can mentally make a decision on their own, that's one thing. But when a nurse or doctor looks at me and asks if he is in pain - I have to say whether to drug him or not. And there have been times he has asked for strong meds and I have went to the nurse on the sly and made them give him Tylenol instead. I just don't want to be the cause of his addiction and I also don't want him to be the cause because he just doesn't realize the consequences of asking too frequently or when it's not really needed. Kwim?

And I do realize that it's possible that Kev will probably be on some form of controlled substance for the rest of his life. I just need to know it's necessary and up until now - it hasn't been. And what if this is just a temporary thing and we end up medicating him without him needing it?

So, so confusing. And so, so scary knowing I could be making a wrong decision.

Moving on though, Jane - you mentioned the Fisher House and that is actually where I stay. If we didn't have that - I would be sleeping on the bench in front of the hospital with two other homeless people that are always there.

Ok, I need to get to bed. A nurse came in and was discussing Kevin with me and it's now almost 3am and I have to get up soon to go back up to the hospital. So, I am cutting this one off in the middle.

Remind me to tell y'all what the CT scan showed...

Tuesday, November 4, 2008

Day 157 - Nov 4, 2008

Things are pretty much the same as they were yesterday. Kevin has been in a bit of pain today, with vomiting and many naps.

A few of you have asked why the pain hasn't been managed all along and it's really just because it hasn't been necessary. We go for long periods of time with very little or even no pain whatsoever. I had trouble in the beginning with the nurses thinking Kevin had to be in pain due to his burns and multiple other injuries and they were medicating him constantly. I had to nip it in the bud because it was causing him to sleep all day when it really wasn't necessary.

Today though, because it's been going on more and more, we did have a pain management doctor come in and we discussed treating it long term. We set up a plan and we shall see how it goes. I am just loathe to do this for a couple of reasons. Number one, Kevin builds up an immunity to the meds kinda quickly. I hate to over-use something that could be necessary later and when it's really needed - it will no longer do its job. Number two, as I mentioned before, we really don't want to take home any addictions. If I honestly thought Kev was in pain daily - I wouldn't blink an eye about keeping him doped up. But we really don't have pain all that often and I worry this might end up being more of a problem than a solution.

Gosh, I just don't know what's the right thing to do here. A constant drug regimen or use it as needed. I wish the answer would just drop from the sky...

As to Megan asking about the CSF sac draining being a good thing? Yes, it actually is a good thing, but I think it's happening too fast. It stands to reason that extreme changes in size over the course of 8 hours or so would be hell for any reason. I have noticed a pattern of pain when there are speedy changes as opposed to having it happen gradually over weeks at a time. From what I am gathering, the docs are thinking that the sudden release of that tension is causing nerve endings that were accustomed to that pressure to throb in their new 'free' environment. Make sense? And for the record, I'm not sure any of this is correct. These comments are based on a newly educated guess after watching this happen for months now. And I am also learning that the docs just don't really know all that much about the brain. I guess it's just one of those organs that there is no way of knowing much because it differs in every one of us.

So hopefully we will feel better tomorrow. We have an outing planned to go to the mall and do some shopping, but if Kev is feeling like this - I don't plan to take him. Keep your fingers crossed...not so much to take him shopping, but that the pain subsides. I'm not sure either one of us can do this another day...

Monday, November 3, 2008

Day 156 - Nov 3, 2008

Today was a horrible day. Kevin was in extreme pain most of the day. Breezy actually went in at 9am and I was going to sleep in and go up at about noon or so, and she called me at about 9:30 and was scared. I ran up there and he was just wiped out. All the docs were there and the nurses too. He actually was like that most of the day - screaming in extreme pain one minute and literally sleeping the next minute.

I personally, once again, think it's too much fluid coming off his head at one time. When I got up there this morning, more than half of that sac of fluid was gone. It was there last night when I left and I asked if Kevin slept on his right side last night and I found out he did - causing the CSF to build pressure and drain faster. That whole sac is nearly gone.

Anyway, we did go for a CT scan, but I haven't heard the results yet. Other than that, neurosurgery didn't come up and take a look so we will see what tomorrow brings.

Needless to say though, we didn't do anything today so other than the pain issue - there is nothing to report. We didn't even come down to the house or anything. Hopefully Kevin will feel better tomorrow and we can get back to fun and games. I just hate to see him hurting like that. I would do anything to take that away!

Sunday, November 2, 2008

Day 155 - Nov 2, 2008

Not a whole lot happened today. To be honest, we all mostly slept and lounged the day away. Kev must have taken about five naps today and I know Breezy and I both took at least one each as well.

So...I am going to skip writing tonight. Kev is already asleep and Breezy and I are going to take a drive. We do this often times at night to familiarize ourselves with the area.

Saturday, November 1, 2008

Day 154 - Nov 1, 2008 finally happened! Kevin said MOM today - yay!!!! Maritza was telling him he couldn't have any dinner until he said it and he just said it on the first try like he has been saying it all along. I think there were about 12 people in the kitchen and everyone just started clapping and dancing. Kev was so proud of himself!

He has just been making remarkable strides lately.

Today, he was also making his right leg move by using the leg muscles and partially using his left hip. This is the first step toward usage. It's his brain understanding that it can make it happen, it can make it work - even if it has to use any part to do it. It finally seems to realize that the leg is there. I wish y'all could have seen the look on his face too - he was just as surprised as everyone else.

And I am quite proud to announce that East Brady built a skate park and named it after Kevin. Here are a few pics:

Thank you very much to Jeff B. for taking these wonderful photos. I have been told that the kids are all loving it already and we can only hope that someday...someday...Kevin can skate again.

I will tell you that Kevin apparently was able to read the sign and got all excited. And he must have remembered the houses behind the park as he kept pointing to them. Photos seem to always jog his memory.

Well, I am going to cut this short today. I have to run Breezy home as she called me at 3am petrified and told me there were gunshots behind the hotel. Obviously, I went to get her and bring her here for the night. We were told they might have been fireworks, but who can say for sure. I know there were cops everywhere by the time I got over there. So anyway, I have to take her back to the hotel and pretend we are living in a safe community. Boy, have we been spoiled all these years...