Day 644 - Mar 4, 2010

We are still in the hospital. I guess things weren't lined up for us to go home so we had to stay another night. I have an appt at 9am tomorrow though to learn how to handle the Picc Line and meds. From there we will head over to the Fisher House and continue on.

I have been working on lining up a place for us to live. Now that Kevin is discharged from the Army, our only option is the FH and that really just doesn't work for someone that has Kevin's disabilities. It's a wonderful place though and soooo appreciated, but, since we will be here for quite a long time, another plan is in order.

And guess who else showed up at BAMC last night? Remember Joel and his parents Maritza and Jose? Yep! Joel flew in from FL yesterday and is here to have some graft work done. Kevin and I went and visited in Joel's room both last night and today and it's just so nice to all be together again. We haven't seen them much at all since we left the VA hospital in FL last May.

Anyway, that's about it for today. I think I am going to go and finish my newest David Baldacci book. Goodness that man can write!

Oh and to those that asked - yes, please send all mail to Breezy. I don't know how long we will be here and I know Breezy will be there for a long while yet, lol.

Day 643 - Mar 3, 2010

Kevin got moved back up to the fourth floor today. Yay! It looks like we will be discharging tomorrow too.

Now I move on to more concerns, a couple of them being staying at the Fisher House because we know Kevin needs his room super cold and can't handle a lot of noise (did I mention there is a newborn baby next door? Acckk!!) and also the fact that he will be on 24 hour IV antibiotic drip. I am concerned about this because it appears you need two thumbs to hook/unhook the thing and I did something to my left thumb back in December. I believe it's broken, but with no insurance I can't say for sure. There is definitely bone sticking where it shouldn't be and my one joint keeps coming out of place. Who knows, but I definitely can't do much with it.

And now I am going to leave you guys with a video of Kevin opening Jesse's gift. It was taken with my phone so it's not real big.

Day 642 - Mar 2, 2010

Kevin has been much better today, but he is still in ICU. We need him to be 'normal' for 24 hours before we will move him back up to a step down ward.

I can't begin to tell you how scared I was yesterday. We had replaced Kevin's Oxycontin with Methadone over the past week and it appears that he did get too high of a dose(or too many doses and maybe it all caught up to him). He was totally out of it. I don't think he knew who Breezy or I were at one point and he was angry and screaming at the top of his lungs. He was vomiting, we couldn't wake him most of the day, his body was having tremors and his vision was completely out of whack. I honestly thought he was dying.

My first instinct was that he was over-medicated, I even alluded to it on the blog here (I think?) previously, but the nurses all were concerned with ICP. Oddly enough, I hadn't even thought about that. Probably because he had moments of lucidity and you typically don't with ICP.

So anyway, they didn't give him his Methadone last night and when they went to this morning I asked them to wait until Pain Mgmt came in. They did end up cutting his dose by 25% so we will see what happens. I understand that we can't just pull him off completely; first because he would go through withdrawal and second because he would be in too much pain, but I just didn't think he should be given the same amount?!

I guess we'll see how tomorrow goes. I will let you all know as soon as I can.

Update

kev is still in ICU, but he is doing much better. I will update as I can via my phone, but it will be intermittent.

Day 641 - Mar 1, 2010

I am writing very early tonight because we will be heading down to ICU for a bit. Although we are unsure at this time, we are thinking that Kevin is 'overdosed' on pain meds. He is barely responsive and he is vomiting all over the place. His CT scan looks great, so we don't feel it is a neuro situation.

I probably won't be able to update until tomorrow, but I didn't want anyone to be upset in the interim.

Day 640 - Feb 28, 2010

Kevin pretty much slept all day today. He did wake up long enough for a few visitors - a group from Operation Military Embrace came to visit all of the wounded warriors and my cousin Elizabeth and her husband Jake came down from Ft. Hood today too.

Kevin really wasn't in a great mood though. I don't know if he just didn't feel well or if he was just tired. We'll see what he's like tomorrow.

My sister also flew home tonight. It was nice having her here and it gave me a chance to run some errands while she stayed with Kevin for a bit yesterday. It was definitely a whirlwind trip though. And it sure was nice of her to bring us my car. Thanks, Kim!

So a couple of you were wondering why we would need to be in TX the better part of 2010. Let's see...we need to be on IV antibiotics for 6-12 weeks. While we are on them we need to have labs done during that period to test for the MRSA, meaning we need to be here at our neurosurgeon's office. We also have to meet with our plastic surgeon because Kevin doesn't have enough skin on his head to have the plate put back in. There just isn't enough to cover it and what is there isn't all that healthy due to the burns. I have been told prematurely that there are two options for this. The first is basically a graft, but this means Kevin won't be able to grow any hair. I can't even begin to tell you how devastated this will make Kevin. Truthfully, I fear he will give up totally if this ends up being our only option. The second possibility is to have a 'balloon' type implant placed under his scalp and (don't ask me how) it gets 'blown up', stretching the skin little by little. I don't know how long for sure that this takes, but it's at least a month and the surgeon that mentioned it told us he wouldn't do it for at least 6 months after this last surgery to remove the plate.

There may be some time in between the third and the six month for us to go back to FL, but honestly - I just don't feel comfortable being there for any real length of time without him having a plate in. If something should happen, I don't know where I would take him, kwim? It's just such a scary thing to not have a neurosurgeon on hand. I had been so petrified for the month or so leading up to us coming here and I don't think I can do that again.

We also need to have some other surgeries to fix some things and we are hoping to have Botox in his hand this week. This will require some therapy after the fact and it's an awful lot of paperwork to go back and forth to different places for therapy - not to mention the expense of traveling from FL to TX all the time.

And we can't forget that we want to detox Kevin at some point and I also still want to send him to that TBI facility. That's here in Texas too.

Wow. I am only touching the tip of the iceberg here. I can't see all this happening over the next year, so some of it may end up being through 2011. Especially because I can pretty much guarantee that some unforeseen emergencies will pop up. Yep, I can pretty much guarantee it...

Day 639 - Feb 27, 2010

Today was a little bit better, but not much. I think Kevin and I are both in a funk because it really just feels like there is no end. I am trying really hard to pull us out of it, but it's not easy to keep a smile plastered on my face right now.

So my sister (Kim) arrived last night. Wonderful sister that she is, she drove my car to Texas from Florida so we wouldn't have to keep renting one. It's just so expensive and I can't see the sense when we have my car that we can leave here. Truthfully, it looks like we will be here for the better part of the next year so a car is a must.

And that's really about it. I am going to quit early because I couldn't sleep at all last night so I am really tired.

Day 638 - Feb 26, 2010

Unfortunately, Kevin tested positive for MRSA again. I am guessing that it took this long for it to show up from the pus they took from Kevin's head because it was from the 2/16 culture that was done. I guess I should be glad that we at least know what the bug is now, but I really just want all of this to go away.

Today was really kinda a yucky day. Kevin just hasn't been feeling well today and there was hardly any joking or even wakefulness. He just slept most of the day and it worries me some. Tonight's nurse and I discussed all of the meds he is on and we are both concerned that he is on too many now. He is taking over 50 pills a day and it's just way too much. He is just so upset when he gets a cup full of pills to take so many times throughout the day.

So I want to sit down with someone either this weekend or Monday and go over each and every one of them. Hopefully we can eliminate some of them.

We did have a horrible episode today too. Kevin coughed when he took a drink and it went down the wrong tube. Honestly - I have NEVER seen that look on his face. It was utter terror; like he thought he was going to die. He just started grabbing his head and screaming and he had tears running down his face. I was utterly petrified. The nurse came running with an IV pain push and I was never so glad to see her!

Sometimes...man, sometimes this is pure hell! Mostly we can handle this, but I just hate seeing him hurt all the time.

Day 637 - Feb 25, 2010

First, I want to thank Jesse for sending a copy of Toy Story - thanks so much - I can't wait to surprise Kevin with it!

I also want to thank Lori for sending me the link for the movie site! I am anxious to check it out.

So today Kevin still needed push pain meds twice. I know they wanted to send him home today, but I told them not yet. Luckily the PA and pain management agreed.

We also discussed Botox for his hand and we are hoping to get that done next week sometime.

Truthfully, I am kinda tired tonight so I am just going to sign off early. I just want to go to bed...

Day 636 - Feb 24, 2010

Kevin got his Picc line today. You had to know that we had just gotten our lunch in the cafeteria and the admin from the burn unit came down to get us because they wanted Kevin 'right now' in Special Procedures. The poor kid wolfed down his sausage, but phew - was he mad. Nobody gets in between Kevin and his food, lol.

He did do a 'little' bit better with the pain today. I think we only gave him two IV pushes of pain meds and that's great. Matter of fact, before I got there this morning they wanted to give him one and he told them no and that he wanted the pills. Thank goodness! I told him he had to be down to zero for a few days before I would take him home. I don't want a repeat of September when I had to have him readmitted because I couldn't get a grip on his pain.

And unfortunately ENT didn't come today. I am hoping tomorrow...

And today Kevin counted to 11 without any prompting whatsoever. He has been stuck on the number 8 all this time and it finally came out today automatically. I hope it does tomorrow too and then I am hoping he will agree to a video for the blog. Wish us luck on this! He's doing well going down to the cafeteria, but then again it's a hospital. Who knows...maybe he won't care what he looks like after a while. I know we don't. It's kinda funny, isn't it? Breezy and I were just discussing how we can look at Kevin with half a head and not even notice it. It's amazing the things you get used to, it really is.

PS - does anyone have a copy of Toy Story on DVD they are willing to part with? Kevin is dying for it and I can't find it anywhere. I will gladly pay for it, please just email me. TIA!

Day 635 - Feb 23, 2010

The neurosurgeon told us we can probably go home by the end of the week (home being the Fisher House), but we are still working on pain management. After discussing things with the pain docs, we did increase his meds tonight. I sure hope this helps. I really hate seeing him in pain like he is.

We did manage to get him up and showered earlier today than normal and he and I went down to the cafeteria for lunch. It was nice to get him out of his room for a while and he really enjoyed it. He did have some pain after a while though, so we did kinda rush back to the room. All total, I think we were out and about for a good hour and a half.

He also went for about 3 or 4 walks today. We even walked Breezy down to the front door this evening when she left to go home. It's quite a distance for him and unfortunately, it still is always causing him pain. Maybe tomorrow things will be better with the increased meds.

I also asked for an ENT (ear, nose, throat) consult. He has been grabbing the bridge of his nose in pain for months and I wonder if the meds for the sinus infection didn't work (or even if it is a sinus infection). Hopefully they come tomorrow too.

And he is definitely getting the Picc line tomorrow. I am told he will be on the IV antibiotics for a minimum of 6 weeks so I am anxious to see how this works.

And now I need to get the laundry folded...

Day 634 - Feb 22, 2010

Kevin had the drain pulled out of his head this afternoon. I am so hoping that there will be no fluid build-up. I just have to keep an eye on the size of his head, I guess.

He is still in a LOT of pain when he gets up out of bed though, but that's about the only time. I really am a little worried about this as I just can't imagine him not being able to get up out of bed much for months on end, but hopefully it will get better as time goes on.

He is going to get a Picc Line over the next day or two as well because he is going to be on IV Antibiotics for quite some time. I guess we can either have a visiting nurse come and administer the meds (wherever we are) or I can learn to do it myself. Gotta give some thought to which way I want that to go, but I'm going to wait and see how hard it is.

And to Army Mom, I don't know how long we will be here (it may be many months, it may be a year even) so I am going to put Breezy's address here for you to send Kevin a letter. I will also put it in the column on the right.

Kevin Kammerdiener
3500 Oakgate Dr
Apt 1101
San Antonio, TX 78230

And to Diane and Mary Jo - I can't believe you went into the pool! The water has to be 50 degrees, lol. You guys are just nuts! Enjoy though - and have a safe trip home!

And I think Moe is on the right track - nobody should tell us when they are coming. This way we might just be there.

Ok, off to bed for me. Kevin is staying every night by himself now. He did call me a couple of nights ago at about 1:30am and I went back up to the hospital for almost 2 hours, but other than that he has been excellent. It stems from everyone in the hospital treating him like he is their best friend. All of the nurses go in and visit with him every day just for fun. He is having a blast. And I love to see him joking around with all the guys and he sure does flirt with all the ladies, lol.

It just makes my heart sing to see the strides he has made since coming here. I was so scared that we would take that plate out and he would go back to what he was in the beginning. But he is really coming a long way each and every day. At this rate I won't need to worry so much about him going to that TBI facility.

I just wish he would be medically stable forevermore...

Day 633 - Feb 21, 2010

I am going to skip writing tonight. I'm just not feeling up to par.

Day 632 - Feb 20, 2010

I am writing early tonight because I need to run to Walmart at midnight when I leave the hospital and get Kevin some more food.

Hallie - you just mentioned that you were concerned about how Kevin feels about himself now that half his head is gone and I have to admit I am a little worried about it too. He is adjusting kinda, but you can tell it really bothers him because he rubs it all the time and pulls the mirror out of his tray to keep looking at it. He always has such a sad look on his face every time he sees it too. It really breaks my heart.

I also asked him if he wanted to record a video for the blog tonight and he was adamant in saying "NO". He told me no way while his head looks like this. I did tell him that he would have to get used to it and that it will be better once his hair grows back in, but he's just not ready yet. It's only been a few days so I can be patient, but I will just have to keep an eye on him.

As for when the plate will be replaced, we just don't know. We do know it will be at least 3 months.

He also does not have to wear a helmet, but we were told if we want to we can go buy a skateboard helmet. Our surgeon is a little different in believing a helmet isn't necessary so I just need to decide if I want him wearing one or not. We do all have to remember that we didn't have one the last time and he was way more unsteady on his feet back then.

And to Kathy in IA - I guess all of the cultures came back negative?! They think it's because he was on the antibiotic for 5 months and that's why. We are using a broad range IV antibiotic for treatment so I guess we'll see what happens.

As for the pain - we are working on trying to manage it better, but I still wouldn't feel comfortable taking him home. What I am seeing is is that he is in a lot of pain and very dizzy every time he gets up out of bed. I am hoping this will go away pretty quick, but I worry it's a fluid issue due to the plate being out. Time will tell, I guess.

Kristen - please call me! I left your number in FL so I can't call you. Afternoons and evenings are best. I can't always answer, but you can sure try. And I love you too! And Travis!

And to my two other friends from home in PA (Diane and Mary Jo) - I hope you are enjoying visiting our home. I cried like a baby this afternoon because you arrived in FL to visit us and we are in TX. I just hate that every stinking time someone I am friends with comes to visit, Kevin gets sick. This sure is a lonely endeavor (among so many other adjectives) and I really miss all of my friends.

Oh well, it doesn't matter I guess. Just take care of that darn cat of Kevin's and eat as much as you want. I am glad that someone is there to make the house look lived in. I so wish we were there with you though. Next year you aren't buying your tickets until the day before you can come. That's what Moe learned to do, lol.

OK, enough about this. I am going to go watch Happy Gilmore with Kevin. Like we haven't seen it 300 times already, haha.

Day 631 - Feb 19, 2010

Guess where I am? Again? Yep - the Fisher House!!

Kevin did really well last night. He did call the nurses quite often, but he never called me once. Not at all!

So when I went in and started through the day, we discussed it and he felt good enough about letting me come 'home' every night. Yes, I know there may be nights that he won't want me to or even that I won't want to if he is really sick or something, but this is a HUGE step toward building his independence.

This is really just such an exciting step too. It makes me feel so good to see him progressing like this. It just gives you such hope that he may really be closer to normal someday than we ever thought to wish for.

And man...I can't tell you how awesome it was to sleep. To just sleep. I slept hard last night and it felt so good. I am planning on it tonight too, lol.

And that's what I am going to do right now. I will leave you with a photo of Kevin fake crying as I was getting ready to leave tonight.

Day 630 - Feb 18, 2010

I did something really hard tonight. I left Kevin at the hospital for the night and I am at the Fisher House all by myself. I discussed it with Kevin first and when he said he didn't mind, I then discussed everything with the nurses and they were all happy to work with me on the separation anxiety situation.

So at midnight, I left. I had to chuckle because I wasn't even past the nurses station (which is right outside his door) and he was already calling the nurse. I honestly have to attend to his needs and wants at least 200 times a night. I so feel for the nursing staff, lol.

We'll also see if he calls me tonight. I had to run to Wal-mart earlier this afternoon for Pop-Tarts and he called me twice while I was gone.

I guess we'll see, huh? Maybe he will surprise me!

And before I go, here is a photo of Kevin right before his surgery. He is with his WFRC (wonderful federal recovery coordinator, lol)


But now I am going to totally ditch the blog and truly go to sleep. Uninterrupted sleep. Can you imagine? I am so excited...

Day 629 - Feb 17, 2010

We are in a normal room now - out of ICU. Kevin has been doing very well, although he is in a lot of pain. No surprise there, I guess.

So it turns out that he wasn't leaking CSF as I had been told, but he was draining some of the infection from his head. We still don't know what bacteria has infected him as that can take up to 3 days. I sure hope it's just some minor bug and nothing hard to get rid of.

Unfortunately, that spot on the side of his forehead that I was worried about came wide open while he was in surgery. The neurosurgeon called in a plastic surgeon, but they decided not to worry about Kevin's appearance and just find a way to get it closed. This meant that they had to pull the skin taught from wherever they could pull it to get it to cover the large area. This means that he is unable to shut his left eye now and his skin is really tight.

My heart is just breaking for him.

One good thing (?) is that Kevin was nauseous late this afternoon and they gave him medication for it and it has knocked him on his butt. He has been sleeping for 6 hours already and I hope it continues through the night. We did have a couple bouts where he woke up completely out of it and we had to call the doc in, but she said it is a normal side effect to this medication. It just scared me because it was a blast from the horrible past.

I did take advantage of his sleep though and took a nice nap myself.

And I am going to quickly answer just a few questions and then read for a little while. First, to everyone - thanks for keeping my dad in your thoughts. He is doing somewhat ok, but it's going to be a rough road.

We also found out yesterday that they have indeed found a mass inside of my mother. She is going tomorrow for a biopsy.

And my sister and her husband were in a car accident the night before last. From what I hear, they are both ok.

Forget about 'when it rains it pours' - we are in the middle of a hurricane!

Jessica - you asked if Kevin has been on antibiotics for a while and the answer is yes - for 5 months now. We think it is partly why things weren't showing up on any blood work and tests that were done. He also had no 'real' signs of infection.

Hallie - you mentioned a functional MRI and if I remember correctly - you can't do an MRI on a patient with a shunt. I believe it throws the shunt out of whack, but that may not be the right reason.

There are a few more questions/comments, but most of them pertain to finding someone to spend time with Kevin. It's kind of a moot point right now, but I will say that because Kevin isn't as healthy as most of us, for now I was more looking for someone paid and insured for the trial run of this endeavor. Once I see that it works for Kevin to have someone come in, then I can go out into the community and have some kids or military personnel come in sometimes. As I said though - for now it's nothing we need to worry about. I think we are going to be here a good, long while.

And now I am going to leave you with a picture of Kevin from yesterday right after his surgery. He was much happier then because his pain was more managed.

Surgical update

This is just a quick update to let you all know that Kevin did have the plate removed today and when the doctor lifted it out there was the equivalent of a bowl full of puss underneath it. Who knows how long it's been infected, but I would guess a long time.

So we are in ICU and I still don't have Internet so I will fill everybody completely in when we get to a room that I can log in and really type from.

Day 627 - Feb 15, 2010

I guess I jinxed us last night as Kevin is now admitted to the hospital pending probable surgery tomorrow or the next day. When the bubble popped last night it was actually yellow CSF as opposed to clear. This typically means infection has set in so they are planning to remove the plate and everything else from his head. Nothing is definite yet, but everyone is leaning toward this option.

So anyway, there is no Internet in his room and I think it's safe to say that my posts will be sporadic, but I will keep y'all updated as I can.

Keep us in your thoughts please!

Day 626 - Feb 14, 2010

Happy Valentine's Day everyone! We did absolutely nothing today. Kevin and I never left the house, but Breezy and her boyfriend ran to the store a couple of times. I cooked a big dinner for all of us and then we all just sat and watched tv.

Kevin is doing well, but a new huge blister is forming on the same spot on the back of his head as the other day. I am hoping it makes it until Tuesday so that the doctor can see it, but I doubt it does. It's getting quite large and is very inflamed and painful for him.

I have to say I wish I would've known that we weren't 'really' going to be seen until Tuesday because I wouldn't have rushed around to get here in one day. Unfortunately, a certain doctor we saw last week was quite the alarmist and had all of us freaking out, hence the rush.

But it's ok. I do feel better that he was seen and I was told it was ok to wait until Tuesday before any in-depth look at the situation. I trust these guys here more than I have trusted any neurosurgeon since this all began so I am ok with the wait now that I know it's ok to wait, kwim?

Day 625 - Feb 13, 2010

I don't think I explained myself very well when I said the docs sent us home until Tuesday; what I meant was that we are at Breezy's and that we weren't kept at the hospital. They had planned to admit Kevin when we arrived, but they didn't feel it was necessary once they saw how well he was doing.

So we are still in Texas and will be until at least next week. Maybe much longer, who knows.

And Kevin and I didn't really do anything today. We both slept until really late in the day, probably because we were so tired after yesterday.

But here is the picture I took of Kev in the plane. You can just see how excited he was, huh?


He sure loved that flight, lol.

Day 624 - Feb 12, 2010

I am extremely exhausted tonight so I am just going to tell you that we made it safe and sound. Kevin was ecstatic because we got to ride in a corporate jet all by ourselves. He was so excited.

We also went to the hospital for a work-up once we got here and so far everything looks good. They sent us home until Tuesday, unless Kevin starts to drain more CSF. In that case, we rush back to the ER.

And now I am signing off and hopefully getting settled in to go to bed. I am just so tired...

Day 623 - Feb 11, 2010

Remember how things were all rosy yesterday? Remember how good I felt about the new doctor? Well scratch that!

Kevin started draining CSF out of the hole in his head at about 3am (he didn't pick at it, but it started when he lay his head on his pillow). I talked to the answering service last night and to cut the story way short - the surgeon called early this afternoon and told us that he just didn't feel he can be Kevin's doctor.

He explained that due to the opening in Kevin's head, the chances are good that he has already been infected with either MRSA or Meningitis and that he feels we need to go back to the VA or BAMC. He just doesn't feel he is a good fit if Kevin needs to be hospitalized for 6-12 months as he will if it is infected and the plate needs to come out.

So I have literally been on the phone for the last 8.5 hours and we are now booked on a private flight tomorrow afternoon for Texas. This organization - Veteran's Airlift has decided to help us get there and I can't tell you how much I appreciate this.

And now I have to get back to laundry and packing and bill paying and cleaning and gosh knows what else before leaving tomorrow.

Wish us luck!

Day 622 - Feb 10, 201

I am ecstatic because we went to see the new neurosurgeon today and I REALLY liked him. He was extremely kind to Kevin and he also took the time to explain so much to both Kevin and I. He even went over the CT scans with both of us and he showed Kevin where his brain was gone. It was the first time Kevin physically saw that instead of a circle showing the whole brain, the left side is cut off about an inch or so in from where it would normally be. He also explained all the 'dead' spots. I think most of it went over Kevin's head, but it was still nice to have him explain it all to us.

So he feels good about things with Kevin, but he did say that Kevin needs to not touch the two spots on his head where the skin is bad. He worries about the skin breaking open and meningitis setting in. So for now, I am trying my hardest to keep Kevin's fingers off of his head. Not an easy feat, I tell ya!

It was also interesting to see the doctor ask Kevin to do certain things and how Kevin responded. Like when he asked for Kevin to stick his tongue out, Kevin held his arm up. When he asked for a thumbs up, Kev opened his mouth. Kev just really struggles with those kinds of things, but we always have to focus on the good, right?

So we go back in a month for another CT scan and then directly to the surgeon's. We will have a better understanding of things at that point, but I was told that Kevin does not have an infection. The culture came back clear! YAY!!

And I am going to sign off now. My brother is staying here for a few days and although both he and Kevin were teasing me because I scrapbook - they are both sitting here looking through each one of them. It's a nice family moment and I want to enjoy it.

Day 621 - Feb 9, 2010

I am going to skip tonight. Kevin and I are just sitting down to watch Lord of the Rings and we all know that's a three hour movie so I will catch y'all tomorrow night.

Day 620 - Feb 8, 2010

It was kinda another slow day today. Kevin went to therapy with Parshall while I made a bunch of phone calls and worked on organizing a pile of paperwork. Nothing too exciting and I think you are going to find it more frequent where I don't really have anything to say.

Poor Breezy had another kidney stone last night though. She called me and it killed me not to be there with her. She did call this afternoon - thankfully - and tell me that it must have passed because the pain finally went away! Poor thing...

And that's really about it, so I think I am going to curl up with a book tonight.

Day 619 - Feb 7, 2010

We had a very lazy day today. My family came down for dinner and that's about it.

I am excited to say that Kevin played XBox for a while tonight though. He lasted longer than ever before and that excites me. He gets so frustrated because he can't use that one handed controller very well, but I keep telling him that he just needs to practice. So tonight he pulled it out and started playing. I wish Maxim would get the 21 year old hired already!

So there really isn't anything else to tell you. I think I will sign off and scrapbook for a while.

Day 618 - Feb 6, 2010

I took Kevin to the emergency room again today. The area that the drain came out of (in his head) back in November had a huge blister over it when we got up this morning. For days now, I had been watching it build up and today it finally started 'leaking'. So I took him in to have a culture done. I know it can take up to 3 days for certain bacterias to show up, so we should know something by Tuesday.

Oddly enough we were at the emergency room the same time my dad was. His stitches came undone and his stomach was gaping open. They restitched him and sent him home.

So after we all left the hospital, we went to my Mom and Dad's and had dinner. That's about it for today.

I did want to answer Kathy in IA's question. She asked if Kevin remembered everything by looking at the boxes (in the store) and the answer is yes. Kevin remembers everything by visual stimulation. EVERYTHING. He only struggles when you try to jog his memory through words. Even people that are close to him, but that we don't see all the time, he will forget who they are. As soon as he sees them though, he remembers everything about them.

Sometimes though, he will remember someone by an event. For example Janet who lives here in Tampa - but we have only seen while we are in Texas. When I mention Janet, I have to say "remember the woman with the long blond hair that we went to Chick-Fil-A with that day?". As soon as I say that - he knows exactly who she is. (BTW Janet - I am so glad Matt's surgery went well this time. I will call you soon!)

I can't just say 'remember Melissa from work' though. We did that tonight because a woman Kevin worked with at Riverside sent me a message on Facebook, but it worked out because I just showed him her picture. As soon as he saw her face he got all excited.

Kevin, for the most part, remembers almost everything. It's just names and things like that. Even the names of objects. He doesn't know the name of a plate or a fridge or the washer. But he knows what each of those things are and what they do. It's so strange, huh?

And to sign off - to all my Western PA friends - I feel for you guys! 24 inches of snow!! It just proved to me that I did the right thing though. Kevin needed to get to a hospital today and I could have never gotten him there if we were still in PA. This may be a very lonely existence, living in Florida - but at least I can take care of Kev without worrying about snow and ice.

Day 617 - Feb 5, 2010

We didn't do anything today so I am going to skip writing. Catch y'all tomorrow!

Day 616 - Feb 4, 2010

Would you believe that Kevin slept a full 8 hours straight last night/this morning? I actually left at 1pm to run to the DMV and he was still sleeping. Unbelievable! And it made such a difference to how he felt all day. You could just see how rested he was. I sure wish he would sleep like this every night.

So we didn't really do much today. I came home from my errands and Kevin and I went for groceries and it was kinda fun because we were there over 2 hours. We went up and down every single aisle and looked at everything. We just never do this. I hate shopping so I always just go grab what I need and get the heck out of there. Kevin loves to shop though. Mostly he just looks at everything and I think it's good for him. More often than not he remembers things from his past so it's almost like therapy.

And really that's all we did. We didn't have to go see my dad today because he came home from the hospital. I wanted to give him quiet time at home on his first day, but we will probably go see him tomorrow. Hopefully anyway...

Day 615 - Feb 3, 2010

Kevin and I spent the whole afternoon at the VA hospital having tests done. I took a look at the CT scans with the doctor and she actually explained to me how to 'read' them. Kevin definitely has some fluid buildup both on top and beneath the plate. It doesn't appear to have changed any since Dec though so I am not overly worried.

I did ask the doc to send us to a Dermatologist though. Maybe they will know what that spot is on Kevin's head? It's worth a shot so we shall see.

We also visited my dad who is back to his normal self. He is able to eat solid food now and they told him he may actually get to go home tomorrow. YAY! Amazing, right? Two days ago we thought he wouldn't ever get out of ICU and now he may be going home. I guess we can see where Kevin gets it, huh?

Day 614 - Feb 2, 2010

Haha. Kevin was just trying to talk me into jumping out of an airplane. That boy is NUTS! Seriously - he was just 'talking' about how fun it was and how proud he feels that he did it. And he just kept pointing at me basically telling me that I need to try it. He is just so hilarious, eh?

So today I left Kevin with Par and went to see my dad for a while. My dad is doing so much better. I have to admit that I was getting worried because he was all messed up cognitively, but today he was finally normal. And he got moved out of ICU too. They thought it would be a while, but they pulled one of the drains out of his stomach and sent him upstairs. He still has four more that need to come out, but hopefully over the next few days.

And while I was gone Kevin found his camera in amongst all of his Army stuff. He musta grabbed some batteries out of the drawer and he proceeded to take pictures of Parshall and her daughter Jeilah (Kevin was grumpy about having to stay home so I had Par bring Jeilah to keep Kevin entertained. He really just loves kids). So here are some pics:

The first one Kevin took of Parshall and Jeilah:


And this one Parshall must have taken:



Cute, huh? Kevin really loves taking pictures too. I think I am going to have to 'push' this hobby a little bit. I just don't know how he does it with one hand to both hold the camera and snap the picture, but he does it and he does it well. I am just going to have to remember to grab his camera when I am grabbing mine.

Day 613 - Feb 1, 2010

I had planned to take Kevin over to the hospital today, but it turns out my Dad now has MRSA. I plan to keep Kevin as far away as possible, although since we were there yesterday and didn't know about it - any damage could have already been done. I really just wish things would work out for my dad, but things aren't going as well as the doctors would've liked. I am keeping optimistic though. Always.

So instead, I went with Kevin to therapy and spent the time making phone calls. I also ran and picked up the forms for a handicap parking pass. Can you believe we aren't even able to park in a handicap spot (legally anyway)? There is just never time to do paperwork and I need to make it a priority.

Other than that, we just spent the rest of the day at home. We started to watch a movie tonight, but Kevin just couldn't get into it so he went to his room. At least he tried to stay in the living room - it's a start anyway.

And I think I am going to sign off and watch some mindless tv.

Janet - it was so nice to see your post! Are you in Tampa? If you are, I would love to get together!

Day 612 - Jan 31, 2010

We didn't really do much today. Kevin and I did go and visit my dad for a little while, but really that's about it.

One thing I did do though, was teach him how to make french toast. As soon as he grabbed that spatula, he started flipping those babies like a pro. Lucky for me my camera was right there:


Ummm...this one went a little too high and he didn't catch it on the way down, lol.


We had fun doing this today and I can only hope that he will be more willing to learn to 'cook' some more types of food. I would like to get him to the point where he can pop a frozen pizza in the oven and know when it's done and maybe even cook something 'real' and not frozen. We'll see though. It's something that I will work on as it comes up, but it's not one of the things I am going to push yet.

Day 611 - Jan 30, 2010

My dad is still in ICU and it looks like he might be for a while. Today I left Kevin with Parshall for about 6 hours (she picked up the extra 12 hours a week until they can find a 21 year old) and I went to the hospital and spent the afternoon with my dad. My mom went home and had dinner with the rest of the family that is still here and it was a much needed break for her.

Kevin handled it pretty well too. He didn't call me for about 4 1/2 hours! I keep saying that I am going to really work on the separation issue, but I rarely go anywhere to do so. This next week or two may be different though. Kevin can't handle being at the hospital long so I will be leaving him home while I visit my dad some of the time.

And even better today - he only needed pain pills twice all day long!! Yay! I don't expect these new drugs to take ALL of the pain away, but if it takes most of it I will be a happy person (as will Kevin!).

Day 610 - Jan 29, 2010

It looks like my dad will be in ICU for at least the weekend as he got pneumonia. He's been keeping us entertained as he is pretty doped up. He is also demanding great grandchildren 'before he dies' (his words), but I told him none better come from either of my kids. I did take Kevin over to see him today and Kev did pretty well for the most part.

I also took Kevin to see the doctor today because he has been grabbing the bridge of his nose for a few days and sure enough - he has a sinus infection. I am so hoping that the new meds they put him on take away all of the pain he has been having. This could so be the reason as we all know how painful those things are. I think the meds are starting to kick in because he hasn't asked for any pain medication for hours now. Thank goodness!

Oops I forgot...

I forgot to mention the article in USA Today. I think it's great, but I do want to point out that it kinda sounds like I said the Federal Recovery Coordinators aren't doing their jobs and I most definitely need to point out (for the millionth time, lol) that our FRC is WONDERFUL!

I will stand behind me saying that the military doesn't do anything for my mental or physical situation though. But I don't think the FRCs have any control over our lack of health care. Unless you're holding out on me, Mary? LOL!

USA Today

Day 609 - Jan 28, 2010

Today has really been a rough day. I don't really want to talk about my dad, but I do thank everyone for the comments.

So I spent some time with Kevin taping some more videos tonight. They may seem redundant to you, but that's the way it is in this household, lol. We do the same words and activities every day so that they stick.

One example is Kevin finally learned how to say his name correctly. You will notice though that he forgot what it was. He knows it. Honestly. But sometimes things just don't come to him. I am just happy that he can finally say it. It's always been "Kenin" and not "Kevin" so this is a major improvement and has only taken him 8 months to perfect. The first time we tried to get his name said was in May when we were on our way to PA for our first visit home. We have worked on that word nearly every single day and he just now got it the night we went to the hospital. Finally!

So here are some videos. The first one is Kevin just walking out of his room and acting goofy:



The next two are of him just practicing words:





And now Breezy and I are going to watch America's Next Dance Crew. Oh and Sue - Breezy is just here for the week. The whole family came here for my Dad's surgery.

My Dad

My dad made it through the surgery, but unfortunately they could not remove the tumor. It had grown into the bone and the surgeon was afraid he would bleed out if they cut into it.

So we have been granted some extra time with my father, however, he will go through a very slow and painful time toward the end.

Gotta run. Thanks for keeping us in your thoughts!

Day 608 - Jan 27, 2010

I don't really feel like writing anything tonight - I am just too upset, but I do want to thank everyone for the well-wishes for my Dad's surgery in the morning. (Diane - I got your text but didn't have time to respond until now and it's too late.)

I will quickly tell you all that Kevin has been just fine all day.

Day 607 - Jan 26, 2010

Kevin was sick all night again last night, but he woke up today and was completely fine all day long. Keep your fingers crossed that he stays this way.

I did take him off the medication I talked about last night and I know it could be a coincidence, but no matter what - he is feeling great tonight. He even ate a very healthy portion of turkey, stuffing, yams, homemade noodles, mashed potatoes and garlic green beans. A VERY healthy portion, lol.

So like I said, he was feeling really well. My parents brought the baby with them today and here are some pics of Ellie with Kevin and Breezy:

In this first one, Kevin somehow managed to get down on the floor to lay with her. Let me assure you - it takes a lot more to get up than it does to get down. He couldn't do it and I had to basically lift him off the floor (thank goodness this was before dinner, lol!)

And Breezy was learning how to handle a baby that is getting a tooth - haha.


And last, here's Kevin just holding her. You should hear him talk 'baby talk', lol.



And that pretty much sums up our day. Dinner was really nice and that was really important to me. I wanted to make sure my dad had a great meal before his surgery. He won't be able to eat tomorrow at all so this was it.

And now I am going to go and scrap for a while. Hopefully anyway...

Day 606 - Jan 25, 2010

I had hoped to get on here earlier today and let y'all know what the docs said, but Kevin has been sick all day long and I was on the phone all day long trying to get things figured out.

So the docs at the emergency room last night told us that Kevin doesn't have any signs of an infection. His blood and urine were completely clear of any possible problems. He had a CT scan as well and they came back and told us that it was completely fine. I'm not sure what that means as I know there is fluid building on top of his plate, which is why I spent the day on the phone.

We didn't get home this morning until close to 4am and neither one of us could sleep until almost 9am. I had a ton of phone calls to make so I got up within a few hours and got started. After MANY phone calls and after watching Kevin still throw up all day long, I decided just to take him to the VA. I was concerned about the hospital we went to last night not having a CT to compare to, kwim?

So anyway, I called the head doc at the VA Polytrauma (whom I really like) and he felt that Kevin could try to make it through the night tonight. Like me, he doesn't see any 'real' signs of ICP except the vomiting. If there was more buildup of fluid, he would probably be showing some of the other signs.

So after I made Kevin some soup, and he was able to keep it down tonight, I was just sitting here thinking about his symptoms. All along I felt it was a bug, but it could also be his stomach just rejecting something. Kind of like it's agitated. He hasn't really been eating anything, which made me think of his meds.

Ummm...hello...?!! Years ago I was on an anti-inflammatory and after 2-3 months it was eating my stomach alive. Kevin has been on that same med for about 3 months now. I remember thinking when they started it that I was going to have to watch for signs of it bothering him, but I completely forgot about it until tonight.

What I realized was that for the few days Kevin was sick earlier last week, I was only giving him the emergent meds so that he had a better chance of keeping them down. I left this drug out. Once he felt better, I gave it to him again and he started vomiting the next morning. I didn't give it to him tonight and he feels just fine now. It could all be coincidence, but then again - this could be part of what it making him ill.

I am anxious to talk to the docs about this tomorrow.

So right now he is in his room watching Family Guy and he feels fine. I am going to sleep in the living room tonight though just in case and we'll see how he does through the night.

And on to other news...my mom went to two docs today. I don't think I mentioned it, but there was talk of her having Blood Cancer. She does not have that - YAY!! She still has to have the cyst on her kidney checked out, but we are confident that it will be fine.

And last, I had the chance to do an interview last week with a reporter from USA Today and they are running a story on Wed about Caregivers of Veterans. She is a super nice person and I look forward to her story. I wanted to give a heads up for those that may want to read it.

And now I have to 'prep' for dinner tomorrow. It's the last meal my dad will be able to eat before his surgery on Thursday so we are having the big turkey dinner - just like Thanksgiving.

Here's hoping that Kevin is well enough that we get to eat it! (because really - if he's not - I won't even be here to cook it!)

Day ???

I have taken Kevin to the hospital as he started vomiting again tonight. We are still there so i will update as soon as I can.

Mary ~ I will call you tomorrow.

Day 604 - Jan 23, 2010

There's nothing much to tell you tonight. My sister and her family made it here today and everyone came down for a nice big dinner. About 7 of us played a few hands of Uno with Kevin and let me tell you that it sure is different playing with 8 people as opposed to just the two of us. It was sure fun though!

Kevin did really well with everyone here. Sometimes he does, sometimes he doesn't, but he really did fantastic tonight. Thank goodness.

And that really sums up our day. We really just did nothing until everyone came over. Just a couple of boring folks...

Day 603 - Jan 22, 2010

Kevin, Parshall and I went to the Manatee Viewing Center today. It was a beautiful 75 degrees and sunny here so I figured today would be a good day. Unfortunately, Kevin just hated it. I guess it was just too boring for him, lol.

Here is a photo of a few of the manatees:



I suppose it is kinda boring, but something else that needs worked on is having Kevin realize that it really isn't always about him. This is not an easy thing to change because when he's miserable he makes sure everyone else is. But, I'm still going to keep working on it.

And thankfully, we both feel better today. I guess it was just a little bug. We feel better just in time too as my sister and her family will be here tomorrow. They will be staying with us for about 10 days. Breezy will also be coming next week and my brother came yesterday. If my nephew can get off work to be able to come down, the whole family will be here. I sure hope he makes it.

Day 602 - Jan 21, 2010

Kevin was still sick this morning and I was starting to second guess myself. I kept thinking that maybe it was his head and started trying to find someone to take him immediately. Sue, a great person at the VA, worked hard and finally found a neurosurgeon that would take Kevin - but not until next Wed.

This made me really sit and think about things today. Even though I still feel really crappy, I had to run to the VA pharmacy to pick up Kevin's meds and I left him home with Parshall because he was still sick. This gave me hours to think and discuss things with Mary (wonderful FRC).

So here's what I came up with:

We are not going to Texas. And we are not going to that doc on Wed. The situation is that if we go to that surgeon on Wed, we can't go to Dr H. on Feb 10. It's already been how long without any action so what's a little bit longer? I also researched Dr H. fully months ago and feel strongly that he is our best choice. The hospital he is associated with has a new neuro-science ward that focuses on brain tumors and injuries. He also works alone - no physician's assistants and no residents. He is hands on and knows his patients inside and out. This is exactly what we need. I hated new residents rolling in every few months and us having to teach them Kevin's issues all over again. I want to be able to call the doc and say 'hey - this is going on' and him know that that's not the norm and not have to run all these tests to make sure I'm telling the truth.

So I am going to just watch Kevin (just as I have been) until Feb 10. I had already talked to a previous doc and asked if I should put Kevin back on the MRSA antibiotic just in case there is an infection so he is already being treated proactively.

I know that if I do see any signs of potential problems I will call an ambulance and take him to the emergency room of Dr H's hospital (hoping he will be on call if we have to).

Which brings me to why I feel confident doing this. Kevin isn't showing any signs of infection. I check his temp often and there is never even a low grade fever. If he had problems with the fluid buildup, he would be lethargic (nearly non-responsive), his leg would be shaking uncontrollably and he would be vomiting constantly (which btw stopped this afternoon and he is back to eating and drinking normally so I assume it was a bug - now if I could just get over it). I can also say with extreme sureness that he most definitely would not be talking better than ever. His cognitive state would have been sliding backward - not forging ahead.

I do know that I might be wrong. Heck the whole thing is a crap shoot as really - no one knows how to really fix things with Kevin because what he has come through is a miracle. So I am going to roll the dice and hopefully win the game. If I'm wrong, the guilt will eat me alive so please keep your fingers crossed that I'm right.

Day 601 - Jan 20, 2010

Today was not a good day. Kevin was up ALL NIGHT sicker than a dog. He vomited all night and has been sick all day today as well. At first, I was worried about it being his head, but then I started feeling nauseous and I felt almost as bad most of the day. It still might be his head, but it could just be a bug too. Hopefully he feels better tomorrow. Hopefully we both feel better tomorrow.

As for his head, we still haven't heard from a neurosurgeon here. I thought we would today, but no go. I think I might just get on the phone myself tomorrow and see if I can find someone. I'm just scared of getting some quack that doesn't know how to handle his issues.

And to Jo and Jessica - I really like the idea of the electric toothbrush. I will look around Ebay after I finish posting this. And Jo - I just did a layout the other night of Levi when we went to Busch Gardens (you can see it at my scrap blog link in the right column). Tell my buddy I love him! And I love you too!

And I think I will head to bed myself. I 'slept' (and that term is used VERY loosely) in Kevin's room last night as he was so sick so I am pretty tired (but what else is new, eh?)

Day 600 - Jan 19, 2010

Today we managed to get Kevin into the dentist. Let me just say that he was not a happy camper. They took him for X-rays and I looked in the window of the door and could see he was just livid. To be honest, I don't know how I even got him to go. He refused for almost 2 hours to even get out of bed because he just was not going.

He did finally go (after so much prodding and bribing), but he absolutely refused to brush his teeth or wear deodorant. I was like "WHAT?" He is so good with his toiletry habits that I couldn't believe it. This just shows you how mad he was that he had to go to the dentist.

So anyway, no abscess. He does have 12 (YES - TWELVE!!!!) cavities though! I am sure some of it is his eating habits, but I don't know if the blast had anything to do with it too. I remember in the beginning his teeth had turned a dark grey color. They did eventually go back to a shade of white, but I do wonder if damage had been done.

So now he refuses to get them filled. We are going to go outside of the VA as he will need to be put to sleep for this and I can only hope he will let me take him. Once all of that is done, we are discussing braces for his teeth. This will be down the road a bit though; once we get everything else taken care of.

I also called Maxim today and set them straight. And I want to say 'thanks' for all the ideas for a companion for Kevin. With everything else going on for the next couple of weeks, I am going to wait and see what Maxim can do. Once we get through my dad's surgery and all of the company, I will sit down and make some phone calls.

And now I am going to leave you with some photos that Ronnie just emailed me from when the boys went over to St Pete for the afternoon last Saturday.

This is my favorite! What a great picture, huh?


This is Kev and Chrissy (my niece) at The Columbia Restaurant on The Pier. She works there and the boys went there to visit her.


And this last one is Kevin in his new recliner. He sits in it quite often and I am so glad. I just hated him always laying in bed all the time!

Day 599 - Jan 18, 2010

I was very disappointed tonight. I think I told y'all a while ago that Maxim had found us a young guy that was going to come and play video games with Kevin and take him to do 'guy' things. Things that a normal 21 year old would do.

Well geez. Tonight was going to be the first night that this young man was to come and I spent the whole weekend building Kevin up for this only to find that the guy that showed up tonight was a 47 year old man that didn't even know what an XBox was or even what UNO was. SAY WHAT?!!

I mean seriously?! I even talked to the guy at Maxim today and they told me he was a little older than Kevin and that I should keep an open mind. An open mind? HA! He's older than me! Kevin was so bummed out and I can only hope that I was able to hide my feelings. What a waste of time. What a waste of priming Kevin to be ready for this. Now Kevin won't be as open to it the next time. And I'm just curious how long this is going to take. It took them months to find this 'young' guy!

This was just so disappointing. And truthfully, I don't really like being put into a position where I have to tell someone to leave and not come back.

Well, it looks like I need to make a phone call tomorrow and let Maxim know that I want a skater punk that plays Halo! I really don't know how I can be any more clear than I already have been. I guess I'll have to talk S L O W E R. (Yep - a little bit of sarcasm)

And I can hear Kevin in there snoring so I am going to bed too.

Day 598 - Jan 17, 2010

Kevin and I didn't really do anything today so I am just going to skip writing tonight.

I do want to quickly say that I have been reading all of the comments about the videos to Kevin and he is getting a real kick out it. I promise to do this more often!

Day 597 - Jan 16, 2010

So I am dumb and just figured out that this computer has some great video software. I really don't know why I didn't think of this before, but I had Kevin sit down tonight and we recorded a couple of videos.

Here is the first one and it is of him counting to five. He can actually count to 15, but it takes some prodding and he wanted to only do the fluid numbers:



I can't even begin to tell you how many tries it took for us to get this right. Kevin had to approve the videos and he expects perfection, lol.

This next one is of us showing you some of the words Kev can say. Let me just say that this one will really show his funny personality!



Can you all tell how far he has come cognitively? Today we were coming home from dropping Ronnie off at the airport (BUMMER!) and Kevin was reading all of the "OPEN" signs he saw on the expressway. It's the first time that Kevin has ever read out loud. I almost cried, lol.

Today the boys went swimming. It has been warmer here the last few days so I turned the heater on for the pool about 3 days ago to get it warm enough for them to swim.

And now I am going to leave you with some pics of them in the pool. It's a sure thing that we are going to miss Ronnie!

Day 596 - Jan 15, 2010

I am feeling a little bit better than last night. It's just going to all work out the way it should, I guess.

So we couldn't get a neurosurgeon to see him today. To be honest, we can't get him in before Wednesday (and even that's not a sure thing). Because we wouldn't even be able to get a flight from the VA before Monday, we are just going to stay here and see what we can find out. If they can't get us in Wed or Thurs, then I will make alternate arrangements.

I will say that Kevin's face is getting a little bit swollen, but he has no other signs of ICP (intercranial pressure). My mom wondered if he might have an abscessed tooth and I have to admit it's a possibility. He hasn't seen a dentist since being wounded and they say IED blasts have a definite effect on teeth. I'm not sure though if that would have anything to do with the fluid buildup though.

I guess we'll see how the weekend goes. If something really bad happens, I do have the option of taking him to the emergency room. It's just that right now the two doctors at Tampa General that aren't on vacation are the two doctors from the VA. Let's just all keep our fingers crossed as I will probably drive him to Sarasota before I will let either of those two touch Kevin.

So to some great stuff - Kevin and Ronnie have been wandering around the world. Ok, that may be an exaggeration, but they have been heading out every day and doing 'things'. Yesterday they went to dinner together at Olive Garden and today they drove over to St Pete to The Pier to see my niece, Chrissy. They also went to dinner tonight too and I can't tell you how awesome it was to see the boys go out and do fun things. I so wish Ronnie lived here! Kevin has been having such a blast and it's going to be so sad to take Ronnie back to the airport tomorrow evening.

But, we have no choice. Tomorrow he has to go home...

Day 595 - Jan 14, 2010

Well, we didn't really learn much today. The doc here called the new neurosurgeon we were supposed to see in Feb, but he never returned the call. In the interim, Dr T from Texas, called and told us that if we can't get seen immediately by a neurosurgeon here in FL we need to be on a plane ASAP.

So Sue, one of the wonderful people at the VA, got on the horn and faxed all of Kevin's records to a different doctor here at Tampa General and we are waiting to see if he will take Kevin on.

It would be different if his issues were simple, but goodness knows - they most definitely are not.

So I feel like I am being torn in two. I know you all think I am a strong person, but I am sitting here with tears running down my face just wondering what the heck I'm supposed to do. My parents told me just to go. Just take Kevin and get this fixed. And of course I want to. BUT like I said last night - it's just not that easy.

Just the thought of losing my dad sends me into a tailspin and thinking that I might not even be here is ripping me apart.

I know, that in reality, I will have no choice but to take care of my baby. No matter what, I know this. But damnit! I really just want this to end. I want Kevin well. I want my dad well. And I want my mom well. That's really all I want in the world.

Can somebody please PLEASE make this happen?!!!

Day 594 - Jan 13, 2010

Well, I got some very upsetting news today. Remember how we went for some tests and found there is some fluid buildup on Kevin's head? Well, one of the docs from the VA hospital called tonight and told me that we need to get to Texas pretty quickly. I think he said that the fluid is inside the plate, not outside like we were originally told. Frankly, I was in shock and didn't really hear much after he said that we needed to go back to TX.

So I guess they all had a conference today - the docs here and the docs there - and that's what they decided.

The problem is that it is not just that easy to leave right now. My WHOLE family is coming in a week or so for my dad's surgery and with Mom possibly having cancer too, it's just not a good time.

But what choice do I have?

I did tell the doc everything tonight and he agreed to call the neurosurgeon we have an appt with on Feb 10. I am hoping that a call from another doc will spur him to get us in early. It's really our only alternative.

And on that note, I am going to quit early tonight. Tracy is leaving early in the morning and we are trying to get everything packed and ready to go.

Day 593 - Jan 12, 2010

Kevin was in a much better mood today - MOST of the time. He and Ronnie went for a couple of walks and then I took them to the mall and dropped them off for a bit. After that we went to Target and then came home and the boys watched a movie while Tracy and I got through organizing more of the den.

I had hoped to go to the Manatee Viewing Center today, but we didn't make it there. Maybe tomorrow. I just want to do something fun while Tracy and Ronnie are here.

And speaking of Ronnie, it's so wonderful to hear Kevin say "Hey Ron" when he wants Ronnie's attention. He can't say Ronnie, but he can say Ron pretty clearly. It's almost like...for one second in time...Kevin is normal. Just talking to his friend. KWIM?

And unfortunately, I am not feeling too good again - I so hope it's just today. I just feel so tired and I can barely keep my eyes open. Tracy went outside to talk on the phone at about 9pm and I crawled in bed for just a second and took an hour long nap. I really should have just stayed in bed, but I hadn't written the blog yet and I knew we needed to get through some more of the piled up mail in the den.

Oh and before I forget - thanks for all the emails and comments about "South Pacific". I was referring to the stage production. I had hoped that Tracy and I could get a night out and it was playing tonight and tomorrow night here in Tampa, but it's not looking like it's going to happen. Bummer.

And before I sign off, to anonymous with the grandson that has MRSA - I am so glad he made it home from the hospital! And yes - that MRSA is some nasty stuff! I hope it's the last of it for both of us! Kevin just finished his antibiotic on Friday. He took it for almost four months.

Day 592 - Jan 11, 2009

Well, Ronnie got here this morning. Unfortunately Kevin has not been in a good mood at all today. I think he might have been tired because he was up all night so excited that Ronnie was coming. I don't know. I just know that he spent the whole afternoon and night in his room by himself. He didn't come out, not even one time.

Very disappointing. And I feel bad for Ronnie. Hopefully things are better tomorrow.

So obviously we didn't do anything today. I am going to sign off though because Tracy and I are each sitting here trying to figure out our accounting software. I got Quicken on Ebay so that I can keep Kevin's budget in order, she got Peachtree for work.

Before I go, an anonymous poster asked that I keep her 1 year old grandson in my thoughts because the baby is in Children's Hospital in Pittsburgh for MRSA. Can I ask that everyone keep the little one in their thoughts?

Day 591 - Jan 10, 2010

I am going to write early tonight because Kevin, Tracy and I are going to rent a movie and watch it.

We didn't really do much. Tracy got here and my whole family came down and we stuffed a turkey and had all the trimmings.

After that, Kev and Tracy went for a walk and Kevin tired Tracy out, lol. I stayed home. It's just too cold out there for me! Right now it's only 36 degrees out and I even turned the pool on for the night because I heard on the news that pool pipes are bursting all over Florida.

So I am going to leave you guys with a couple of photos of Kevin and one of the cat.

This first one is of Kevin and the cat sleeping. You will notice that Kevin's eyes are still a little bit open sometimes when he sleeps. Not always, but sometimes.


I named this one home therapy. This is Kevin pulling Michael around by the back of his wheelchair. Good exercise, huh? LOL!



And this is just a close up I got of the cat when it was waiting at the door to come in. Kevin wanted me to post this one because it's one of his favs.



And now we are going to watch said movie. We have to decide which one first though...

Day 590 - Jan 9, 2010

I feel so much better today. Parshall came because her car broke down on Thursday and she couldn't come that day. It made it nice because I was able to get some much needed mail opened and I made a huge dent into getting the den organized. It still needs so much more work, but I am getting there.

And I messed up the day - Tracy is coming tomorrow, not today. Today my nephew Scott came though. I think he is planning to get a job and stay here, which will be great help for my mom and dad.

And I also scrapped all night tonight. Kevin has only called me a few times and I managed to get 4 layouts done. In one night even! It's early too, so I think I am going to continue scrapping. I haven't felt up to it due to being sick and I set a goal for myself to do a minimum of 2 layouts a week in 2010. I am now caught up (pretty bad that the first week of the year I failed at my goal, huh? LOL)! I think my creativity is back because Josh got my stereo hooked up up here and I can finally listen to music!

OH! I almost forgot! Kevin went for 3 walks around the block all by himself today! (and yes - it's frigid here! It gave me an excuse to make Hot Cocoa though - which I bought forgetting that I now live in Florida!). He was so excited and I was so proud of him. At first, I watched him as far as I could out the window, but he has made such great strides that I believe he can be trusted to go around the back end block. There's basically no traffic back there so I felt safe letting him go.

Oh - and I decided to not make any decisions this week about detox and OT and just enjoy the fact that Ronnie will be here with Kevin and Tracy will be here to help me get things in order. It's gonna be a mini working vacation.

So I will leave you with a question: Has anyone seen the Broadway show South Pacific? I would love some reviews...

Day 589 - Jan 8, 2010

We went to the VA again today to discuss the pain issues and when to begin detoxing Kevin. I guess I am a little confused because the last time we were there we were told that the docs would use Suboxone to detox Kevin as it takes away all of the symptoms of withdrawal, but then today we were told that only extreme addicts that are to the point of robbing people to get their drugs can get the Suboxone from the VA. Say what? I think that is just nuts! Once again, I think this system is totally messed up. You've got these guys and girls being wounded in combat, needing narcotics to handle the pain that their injuries cause and they can't get help with drug rehab? Yet some junkie that is wielding a gun to get his fix can? I honestly just don't understand this!

So I guess I need to figure out what to do on this one. I just wish something could be easy. It seems to be a foreign concept though, huh?

And although I am feeling better, I still don't feel super great. I took a four hour nap (and so did Kevin) after coming home from the VA today and you would think that that would keep me up all night, but I am still so tired. My mom tells me that it's because I'm run down and I suppose she's right.

And speaking of my mom, she now needs to go to the doctor because they found a tumor. I think my family is falling apart. I already told her that she's not allowed to have cancer because we already have enough on our plates. She goes to the docs on Monday so please keep her in your thoughts as well.

And since Kevin is already sleeping again too, I am going to bed.

Day 588 - Jan 7, 2010

I feel much better today. Still not up to par completely, but way better than yesterday.

We did take Kevin to the VA today, but it didn't go over too well. He was in a lot of pain while trying the brace on and they want him to go back to OT before attempting this again. I have to give this some thought because it means we go back up to 4 days a week of therapy. I am really just not sure what to do because the occupational therapist that we were going to told us that the therapy really hadn't been making any difference. Yet when they turned the e-stem on, I watched his hand begin to open.

I just really don't know which way to go. I think I want to talk to the therapists at BAMC before making any decision. They were the ones that worked with him last and they may be more in-tune with the reality of the situation.

And Tracy is coming on Saturday - what a surprise! It's good timing because Kevin will be busy with Ronnie and Tracy and I can get the rest of this house in order.

Poor Tracy and Ronnie. Wait til they see that it is freezing here! It's definitely not vacation weather. We are wearing sweatshirts and winter coats! Yuk!

And now I am going to leave y'all with some photos of Kevin today. The first three are him at physical therapy. The last one is him sitting on the floor checking out his MySpace page. (oh - and if anyone local to Pittsburgh recognizes the therapist - that's where she's from!)

Day 587 - Jan 6, 2010

I still feel really crappy. I didn't even get dressed today. I had Parshall take Kevin to therapy and although he was a little upset about it, he went. Such a far cry from a few months ago when he would NEVER do something he didn't want to do.

Other than that - nothing. I haven't moved from my spot on the couch and Kevin has pretty much just lay in his room all night. I ordered him a pizza for dinner - thank goodness they deliver around here - so at least he had something to eat. I feel kinda bad that I don't have the energy to get up and play some games with him or something, but I just don't.

And I think I am just going to end here and go back to bed. Hopefully my chest doesn't hurt as bad tomorrow because we have an appt at the VA to have Kevin's arm sized for the robotic arm brace that will do electronic stimulation and range of motion. It's our only shot at getting that arm to work. I just need to feel well enough to get us there. It is always so time consuming going there and it tires me out just thinking about it...

Day 586 - Jan 5, 2010

We both thought the movie was really cute. Kevin laughed quite a few times and truthfully, so did I. A worth-see if you like those kind of movies.

I really haven't been feeling well today. Neither Kevin nor Parshall woke me up until almost 2:30 this afternoon and I still didn't want to get out of bed. I also took a nap after we came home from the movie and am actually ready to get to bed now.

On that note, that's what I think I am going to do. Kevin hasn't called my name in about an hour so I might just be able to sleep.

Day 585 - Jan 4, 2010

Did you ever just have one of those uber-productive days? My mom and I got so much done today. We will be having a lot of company this month so we really need to get this house in order. Kevin's best friend, Ronnie, will be coming down on Monday for a week and my whole family will be coming down toward the end of the month for my dad's surgery. Breezy will also be coming then.

So anyway, Kevin allowed Parshall to take him to therapy again and my mom and I stayed home and got the tree taken down and all of the spare bedrooms completely cleaned, organized and ready. I also cooked a nice big meal and even made cupcakes for dessert.

And the best part of all of it - I never left the house today. I just LOVE days like this.

So Kevin was very excited because he learned a few more words today. He learned orange, corn, car, boring and butter. He is really picking up a lot of words, but the problem is getting them to stick. Learning to say them when he needs to. It's something to work on and it's something we always DO work on. We'll get there. I know we will.

And tomorrow we plan to go to the movies. This is the one area where Kevin is still child-like. We are going to see Alvin & the Chipmunks. He just LOVES animated kiddie movies. I do too, but I'm a woman and we like stuff like this, lol. Previous to Kev being wounded, I couldn't pay him to see anything like this. So anyway, that's on the list of fun things to do for tomorrow. Here's hoping it's a good movie!

Day 584 - Jan 3, 2010

We had a pretty good day today. Kevin and I had to run to Lowe's again and get the fencing for the other side of the yard. I had not intended to fence in the side on the road, but after seeing what a difference it makes I knew it would benefit us.

After that we went and purchased a recliner so that I can get him out of his bed. He lays in bed probably 3/4 of the day and I want him to understand that that just isn't the way it is supposed to be. I sure hope this helps. He picked out the one he liked so it should have some effect on his wanting to make the change from bed to chair.

After that we went to my parents' house and visited with them for a while. It was a nice visit - Kevin was in a good mood the whole time, but we couldn't get him to play any games, which was a bummer.

And I had a chance to read the article in the PPG today and it is wonderful! You can all read it here:

Pittsburgh Post Gazette

That Mike is just a fantastic writer. Just as much as Rebecca is a fabulous photographer. What a good team, huh?

And I think I am going to get some scrapbooking in tonight so I will catch y'all tomorrow.

Day 583 - Jan 2, 2010

Today my niece Chrissy and her boyfriend Josh came over and spent the day. Josh got all of my stereos and other electronics fixed and hooked up and it's just such a good feeling having all of that stuff taken care of. Between Josh and our handyman, things are really starting to take shape in the house. It's about time, right?

And Kevin was in a pretty good mood all day too. He was out of his room more than he was in, which was such a treat.

Oh and before I forget - those local to Pittsburgh may want to pick up the Post Gazette tomorrow. I believe my dear Kevin will be on the front page. Mike has written another article on how far Kevin has come in the past 6 months since he and Rebecca have seen him.

I have to tell you that Mike and Rebecca are truly such wonderful people. Out of this horrific experience came the chance to get to know so many new people and I am so happy to consider these two as true friends.

And speaking of Rebecca - check out this link:

2009 Year In Pictures

The photo of Kevin and Breezy has made it as one of the favored images of 2009. (It's my fav too so I can understand this, lol). Anyway, if you click on it you can hear Rebecca talk about taking the photo.

And I will post a link tomorrow so that we can see what the article is all about. I am anxious to see it.

And in other news, I might have had a light bulb moment today. Granted the light bulb might be blown, but we shall see, lol. So anyway, it has been cold here a lot the last couple of weeks. Kevin has also had a lot of pain in his head the last few weeks. I wonder if the two are connected? I think I need to really start paying attention to the weather and to the air conditioner. This may not be it at all, but it's worth looking into.

And now I am going to watch an episode of Cold Case. I just love that show!

Day 582 - Jan 1, 2010

We didn't really do anything at all today so I am just going to skip writing tonight.