Friday, October 31, 2008

Day 153 - Oct 31, 2008

Lots of little/big things today. First, Kevin began swallowing pills today. We didn't put one thing through his feeding tube at all today. He swallowed everything. This is big, because he is now off all feeds as well, due to the fact that he eats like a horse, so in a week or so, they will probably remove his tube.

Second, Kev was able to 'walk' his wheelchair all the way to the elevators. This is a considerable distance for someone in his situation and it is just showing us exactly how strong he is.

Kevin was also able to pull himself up 5 times into a standing position while on the standing frame this afternoon. That is the piece of equipment that I have pics of him standing with the other day. They actually pulled him up halfway and made him do the rest himself. From what I hear - he was even dancing while standing. I was in a meeting today, so I missed PT. I was so bummed! I should have given his therapist my camera...

Kevin also had an EGD (don't even ask what the letters stand for cause I couldn't even tell you. I know they took the tube down his throat as far as they could) and they don't see a 'true' reason for the vomiting. It is showing that his stomach is tilted slightly and I can only assume it's due to the scar tissue in his belly, but that's not causing the vomiting. I believe they are going to run a dye test next, but the doctor feels that the issue will resolve itself once the feeding tube is removed. I sure hope that's soon. That will be yet another huge step toward total recovery.

We have also eliminated the sitter from 4-12. I was so scared to leave tonight after Kevin went to sleep, but I forced myself to. I know it's a waste as we are at my place until usually 9-10pm and the sitter just sits and watches tv while we are gone, but it's just so scary to leave him alone - even while he is sleeping. I mean, what if he wakes up and is scared? We did teach him how to use the call button, but to be honest - I am not sure he understands when to push it. It's always easy for him to do something, it's just not always easy for him to understand why I am putting my trust with the nurses and I guess time will tell. He is just progressing so much.

We sure are lucky, huh? Who woulda thought I would ever say that? Today marks the 5 month mark and I really do feel lucky. I was afraid to even wish for his personality and it's there completely and that makes all of this ok. I can deal with everything else - homelessness, paralysis, everything - as long as we can still see that goofy smile and that mischievous twinkle in his eye.

Now y'all just need to remind me of this when I am having a 'down' day, ok? LOL!

Thursday, October 30, 2008

Day 152 - Oct 30, 2008

First of all, Tracy left today. I really don't understand why her family needs her so much when really...we could use her so much more, lol.

But left, she did. We still managed to have a great day though. We were kinda lazy until this afternoon when he had all his therapies. Today we worked on transferring him from the chair to a mat. The therapists think he will be able to do this on his own once we get the vertigo taken care of, enabling him to stay at my place. That (the vertigo) in itself seems to be getting marginally better, but I am thinking that's gonna take a while for it to fully go away.

And today Kevin figured out that he can actually push and 'walk' his chair around all by himself. He wanted some candy and I told him if he could get to it, he could have it. I was not helping. He was all the way across the room (about 12 feet) so he pushed the foot rest up and shuffled with his left leg, while using his left arm to help steer that chair right to the closet (by pushing off of other objects in the room). He also tried to pull himself out of the chair to get into the candy bowl and that's when I had to step in and stop him, otherwise he would have fallen. Man, was he proud of himself! And to be honest - I was quite proud of him myself.

Then tonight, they had a small Halloween party outside were we toasted marshmallows and had S'mores with hot chocolate. Kevin and Breezy got to wear goofy masks that we picked up at the dollar store and it was fun. I really love it that they do fun things for the patients like that here. Here is a pic:

And that about sums up our day. Tomorrow Kevin is having a scope taken down to his stomach to try to figure out why he keeps vomiting. The docs finally came in this afternoon to look at the issue. Keep us in your thoughts tomorrow. I really hope they can figure it out.

Wednesday, October 29, 2008

Day 151 - Oct 29, 2008

We had an awesome day today. For the very first time in 5 months, Kevin got in a car and went for a ride. We actually went to a video store and rented movies and while on our way, he saw a Subway and nearly jumped out of his wheelchair trying to get us to stop. Obviously, that's where we went for lunch and unbelievably, he ate the whole 12" sub!

So here are a few pics of our outing:

I have to admit that I was worried that he wouldn't get in the car. It seems like sometimes he doesn't like to do things the first time around and he starts shaking really bad when we get near a parking lot (I am thinking that is PTSD). But he acted like this was something he did every single day. He just kept making the therapists turn the radio station and he was acting like a rapper and singing "yo, yo, yo" - it was hilarious! That kid will do anything to keep us laughing!

And I was told that there might be an organization that will loan a wheelchair accessible van to us and once we have that - we are cruisin'! There are so many things we can do here in Tampa and we will do them all.

Knowing that we need to really build up to all day adventures, we were in the chair 10 hours today. Actually, we went out and about in the van for about an hour and a half and then went to my room and spent the rest of the day and evening (til 10pm). We watched two of the videos we rented and visited with Chrissy and Drew too. We did have to make a quick run to the hospital for his meds at about 5pm, but we didn't even get out of the chair for it. It was like a drive-thru pharmacy, lol.

And that about sums up our day. Pretty cool, huh?

Tuesday, October 28, 2008

Day 150 - Oct 28, 2008

Kevin had a rough morning today between the vomiting and the pain. I think I jinxed us when I said it was all under control. The docs are planning to run some sort of test to see what could be causing the vomiting as there just doesn't seem to be a pattern. At first, I really thought it was from taking his meds on an empty stomach, but his stomach is never empty anymore so that's just not it.

He did get better this afternoon and we did get him up and we went down to the house for dinner. We are sorta settling into a routine for the evenings and that's kinda nice. I wish there was a way to have a routine during the day, but it is like a zoo here. It's just not possible.

I am going to cut it kinda short again tonight as Kevin is already sleeping and I want to visit with Chrissy and Drew while they are here visiting.

But before I go, someone asked for a refresher on who Joel is...he was also hurt in an attack, but I believe it was in Iraq. We met his family while in Texas and became close friends. I am excited to see what changes are in store for him too.

Oh - and one more thing...we have received quite a few boxes of goodies this week. From the yummiest choc chip cookies to a whole box of Steelers goodies to Halloween candy and so much more. Kevin is in heaven! Y'all would laugh hysterically if you could see his face when he gets gifts. Thanks everyone so very much. It makes me happy to see him happy!

Monday, October 27, 2008

Day 149 - Oct 27, 2008

I am kinda going to skip writing anything tonight. We are all exhausted and I just want to curl up with my book and then go to sleep.

Kevin did have a great day though and we had him in the chair about 8 hours today. Matter of fact, he wanted to stay at my house and not go back to the hospital tonight, but I had to talk him out of it. We will be doing that within the next couple of weeks, but I have to learn how to transfer him from his chair to a bed without a lift first. I also need to move the furniture around so that he doesn't fall out of bed and I have to find a different bed for me. If I remember correctly, burn victims can't sleep in the same bed as another person for a certain period of time. I need to check on this though...

So anyway, I will give a better update tomorrow.

Oh - and Joel did make it here safe and sound. Yay!!

Sunday, October 26, 2008

Day 148 - Oct 26, 2008

Things didn't quite work out the way we planned. Breezy is getting sick so Tracy and I didn't end up going anywhere. It was ok though, as we brought Kevin down to the house for about 4 or 5 hours today and I finally got all the boxes completely unpacked that were sent from Texas.

We first had lunch and Kevin ate 2 cheeseburgers and some fries from McDonalds and an egg salad sandwich. After that he settled in and watched the new "Hulk" movie while Tracy and I cleaned and organized.

It was a pretty good day. And I am happy to say we have had no vomiting now for two days and the pain is becoming manageable.

Tonight I am just going to answer some of the questions that have been posted or emailed to me over the last few days. Sorry it has taken so long, but things are just so hectic here.

Which bring me to my first comment - to PFC Stephen Lober - I wish I had the time to be your Pen Pal, but it's all I can do to get through my days. I can be honest and tell you that I don't have time to even watch tv and it now takes me weeks to get through a book that I would read in less than a day before. I think it's cause when I do have a bit of free time - I sleep, lol. But know that my thoughts are always with the guys and gals that are far from home. Stay safe, ok?

Oh and before I forget - someone did step in and help and my pay for the month of Sept made it to my bank account. Thank you to whomever! As y'all can see - Kevin costs a fortune to feed!

And I found out that they stripped all of Kevin's entitlements away and that's why his pay has been messed up. I am rattling cages myself about all of this because it's just not right. I know a couple of the readers here have offered to help, but I just hate to use you guys like that, so I am going to give the liaisons here a chance to make it right and if they can't - I will contact all of you. That's gonna be when 'bitch mode' kicks in and I will do everything possible to get Kevin the things that he rightly deserves.

So I am going to end here tonight. I am beat and want to go home. And Kevin is finally sleeping...

Saturday, October 25, 2008

Day 147 - Oct 25. 2008

Today was an extremely unusual day for Breezy and I. We kinda took the bulk of the day off and went to Busch Gardens. Tracy stayed with Kevin all day and from what I hear - they had a blast! But, before I get into everything about Kevin, I want to share a few BG pictures with you. We had a really great time and I think it helped us feel a little bit human for nearly a full day. This was a much needed respite as we are both feeling the pain of losing our home and I am glad Tracy was willing to give us this break. (and tomorrow Tracy and I are going to the beach and Breezy will be staying with Kevin - giving me almost a whole weekend break)

So the first pic is hilarious! The look on my face tells you that I am not much of an animal person, lol. Breezy, on the other hand has finally found a friend in Florida. Her name is Dolly, lol.

And moving on to Kevin, I guess he was in extreme mode today, lol. As a treat to the patients, the Star Wars characters came to the ward today. Kevin loved it! His eyes lit up as soon as Darth Vader came in (who was HUGE!). Kevin gave the little 'shotgun' finger salute to him and he razzed the Jedis and was truly enraptured of all the characters.

I was also told numerous times by the nurses tonight about Kevin singing and dancing in his bed while 5 nurses danced around his bed. I guess it was a heck of a party. Some of the nurses hadn't seen him in a while and were amazed at the progress he has made.

He did sit a total of 5 hours today in the chair and we are working on making it all day. We were invited to Disney World in early December for a 3 day weekend and we would like to go. I'm not sure about the whole 3 days, but even overnight would be awesome.

And I need to thank Chrissy and Drew for teaching Kevin a new quote the other day. Today, he clearly said "Hey you guys" from the movie "The Goonies". It seems like he can mimic movies and songs a lot easier than just say a word. If I am not mistaken, that's because the music and lyrics portion of the brain is located on the right side. I have heard that sometimes people can sing whole songs, but not say a word.

So here are the pictures I promised of Kevin standing up. I am giving you the play-by-play. He is wearing that 'sling' on his head to compress the fluid upwards and the first pic is him playing air guitar to an Atreyu song.

Pretty impressive, huh?

And to finish off, I wanted to let everyone know that Joel will be arriving on Monday! Finally!! It will be nice to have some friends living here and I am so glad he is well enough to finally get here! Yay!

And I know I have tons of questions that need answered, but I will get to them asap.

Friday, October 24, 2008

Day 146 - Oct 24, 2008

Things were a little bit better with the pain today, but he has vomited quite often. It's my personal belief that all of this is due to too much fluid being drained off his head too quickly. He literally went from a bulge on the top of it to it being sunken in about 3 inches or so within the last few days. The prosthetics dept also fashioned a 'sling' of sorts for the sac of CSF that is right above his left ear and that has been shrinking as well leaving a lot less fluid around his brain than he has been used to. Of course, we aren't sure about this, but it's something to consider.

I did leave the sling off today (it pushes the bulge upward forcing the fluid to move up into the recessed area and drain off) and we didn't have an episode like we did last night. I am going to hold off on using it over the weekend and see if all goes well. I will then try again on Monday and see what happens.

I am also proud to tell y'all that Kevin sat up by himself for a full 23 minutes today. Yeah! He went from 1 full minute the other day to 23 minutes today - astonishing, huh? The only thing that worries me is that he can't hold his head up at all when sitting like that or when standing. It is dropped down with him looking at his toes. It's not due to the neck muscles or anything like that, I think it's the vertigo. I'm not sure though and we are just going to have to work on that.

And yesterday he did stand up on this machine and he was able to for a full 7 minutes. He was in a lot of pain while doing it, but he managed it. I will have to wait to post those pics as I forgot to download the pictures earlier and Kev is trying to go to sleep so I don't want to get up and grab the camera and cord.

I also had a long talk with the doctor yesterday because I was concerned that we have seen no true signs of his right side working in the 5 months since the attack. He did admit to me that he feels Kevin may be hemi-paralyzed. Meaning one sided. He stressed the fact that Kev is young and has great family support, but it concerns him as well that he hasn't really moved anything yet.

So I then went to the physical therapist with the same question and she doesn't agree. She thinks he will be weak on the right side, but that he should have some movement. We did start that electro-stimulation on his shoulder (as it is pulling out of its socket) and hopefully that will make a difference.

I guess time is going to tell on this one, huh? I have to admit that there is always hope, but being realistic - the outlook isn't too great. You typically see movement within the first 6 months if you are going to see it and we are near the end of that window.

But hey - we can deal with it! As long as we have what we have mentally...what's a little bit of paralysis? Shoot - Kevin will just be racing his wheelchair around instead of a skateboard, right?

Day 145 - Oct 23, 2008

Kevin had a pretty rough night tonight. He was in so much pain that he was screaming, vomiting and thrashing about the bed. I believe he even passed out twice. It was hard - on all of us. Breezy was in shock and couldn't move. My heart was in my toes while I held his head up and Tracy just grabbed clean towels and vomit pans or whatever was needed. Chrissy and Drew were even there and they just stepped out of the room. It was horrible!

I don't even really know what happened. He was laughing and carrying on one minute and literally grabbed his head and started screaming the next. The intense pain lasted about 10 minutes and then he just lay in the darkened room for a good hour or so until we were able to get more pain meds to stay in him. I am likening the hour to a migraine, but there is no way for me to know for sure.

He finally did fall asleep and although I was going to stay the night up there, I did come home to catch some sleep. I am going to keep this post brief though as I am just exhausted.

Tomorrow I will show y'all some pics of Kevin standing up for the first time (strapped to a piece of equipment, of course). He did fantastic!

Wednesday, October 22, 2008

Day 144 - Oct 22, 2008

I'm not sure my mood is too much better, but I'm sure it will be in a couple of days. I think it's just all of the pressures combined. I know that Kevin is really doing fantastic, I do, but it's just exhausting having to do this every single day with no relief in sight.

It's also terribly frustrating to have to deal with pay issues for both Kevin and myself. His pays are terribly messed up and mine are non-existent. I have not seen one cent of the per diem for food and toiletries that I am supposed to have received since we arrived here two months ago. This would be a good time for me to say "Thank You" once again because we would be destitute without all of the help we have received. We honestly would not even be able to eat right now without the donations y'all have sent. Thank you so much!

And then I have to somehow find it in myself to accept being homeless. On Monday, all of our things will be moved into a storage facility. In all of my life I have never been in this situation. I have never not had a home. An address.

And yes, I know I have tons of friends and family members I can stay with, but it's just not the same.

And even scarier? How do you get a new home without a job? When we walk out of the hospital, how do you get a loan or rent an apartment when you don't have a job and haven't for all this time? I can assure you that landlords don't want to rent to someone without an income. And nobody will give a loan (esp in today's economy) when you haven't had your job for less than a year.

Ahhh...all these things just piling up. See? It's just no wonder I am in a weird frame of mind right now...

So anyway, moving on to Kevin...his head size came down some today. The neuro docs are thinking that this may just keep on happening to him. So it's going to be normal for him to get sick and his ICP to go through the roof possibly forever. I sure hope it becomes less frequent at least. It's been every other week or so and it's hard on him each time it happens. Something that kinda scares me about it too is that it won't be as obvious whenever he has his cranioplasty. Once his titanium skull is put in place, we won't see the shunt working or not working. At that point, I will have to rely on the other symptoms - vomiting, lethargy, etc. Gosh, I hope I am on the ball enough forever to see things clearly. It would be devastating to not see these things in time.

We did get Kevin down to my house today for dinner too. He fought it at first, but then he did well. He always hams it up in front of people at the house and he had a great audience tonight, lol. Once of the local churches supplied dinner tonight.

And I know I have some questions that need addressed, but I think this post is long enough so I am going to wait until tomorrow. I do want to thank everyone for your words of encouragement though. Sometimes it's really lonely here and during those times I always turn to the comments to feel like I have friends nearby.

And I feel bad for my friend, Tracy, as she is having to deal with me like this, lol. But I'm sure I will be better tomorrow.

Oh and Chuck? Thanks for listening to me whine on the phone today. I promise our next phone call won't be so bad, lol!

Tuesday, October 21, 2008

Day 143 - Oct 21, 2008

Boy, I'm real tired of this shunt thing. Unfortunately, Kevin's head is getting bigger so the neurosurgeon will be called for tomorrow morning. I am hoping it's just another gauge issue, but who knows. Luckily it's not affecting him too terribly today. He has been carrying on like normal and he did eat 4 pieces of pizza for dinner so no problems with the appetite.

About the only thing abnormal is the fact that he took a couple of naps today and he didn't want to go to my house for dinner. We did do a CT Scan this afternoon, so he missed nearly all of his therapies, but he did still have speech and that's our favorite, lol.

I really wish that the docs in Texas had placed the shunt in a different area. Where they placed it seems to be causing problems. I guess the gauge can get turned really easily and Kev has been laying on his right side sometimes to change his position and they think that is what caused it to get turned smaller the last time. As an FYI - it is placed down low behind his right ear.

And while I was in the middle of writing this post, Kevin actually got sick and vomited. It was within minutes of him getting his meds, so I am not sure if it was the meds or one of the symptoms from ICP (intracranial pressure - or in other words - the pressure of the CSF buildup against the brain)

I just wish this could all be done with and we could just go home. I really just want everything to go back to the way it was on May 30. I don't want my son to have to go through all of this crap. I don't want my daughter to have to give up her whole life to be here with us. I don't want to have to keep every friggin bit of nursing information and at least 12 different specialists information in my head. I don't want to remember every symptom of every problem we have. Frankly, I don't even want to remember what ICP is. And I don't want to know about burns and skin grafts and bone fragments and hemi-paralysis and H.O. and loss of brain tissue and I could go flippin on and on...

Damn! I hate this stuff and I am apparently having a little pity party tonight. I think I will just sign off now before I depress all of you. Sorry for my little outburst, but I really just want all of this to be over...and I think it's hitting home that it never will be.

Monday, October 20, 2008

Day 142 - Oct 20, 2008

We had yet another great accomplishment today. While in the gym this afternoon, Kevin was able to sit up himself, without any support, for a full minute. It sounds so simple, doesn't it? But let me assure you, it is a struggle, not only for his muscles, but also for the sense of vertigo that seems to appear when he moves in a way he is unaccustomed to. Now this doesn't mean that he was able to pull himself up, it just means that while already in a sitting position, the therapists pulled away and allowed him to hold himself up. All in all though, he did sit pretty straight up for a full 25 minutes and I credit the new chair for helping him to be able to do it for this length of time already.

We love our new chair!

It has already given us so many freedoms. Tonight was the third night in a row that Kevin came to my house for dinner! (Chinese, yum!). It is my goal to have him down every night to add some normalcy to our lives. It also gets all three of us out of that hospital room, which is so needed.

And tomorrow morning, we are going to a cafe of sorts that it located in a far off section of the hospital. I guess tomorrow is 'Panera Bread' day so that will be great.

I have to say, Kevin is eating like a horse. I would say he safely passes what both Breezy and I eat combined every day now. And he is also eating everything. No soft food or even mediums any longer. I will admit that I haven't given him chips or anything like that yet, but I would bet he can handle them.

As for his sleeping habits (Kristen, I know you sorta asked about this) - he is doing somewhat ok. Last night, I think he over-tired himself because he didn't go to sleep until 2:30 am. And that was with the help of a sleep aid, pain killers and an agitation medication (not all at the same time). It was just one of those nights where he couldn't sleep at all. He has actually asked for a sleep aid every night for the last 4 or 5 nights now and when he asked tonight I had to tell him 'no'. He is starting to rely on it and he hadn't even tried to fall asleep on his own yet. I am so happy to say that he did manage to fall asleep within a half hour of me saying 'no' so I am glad I played the meanie.

So since he is sleeping, I am going to head home. For those that are local to Butler, PA - check the Butler Eagle over the next few days. They are planning to do an update on Kevin's condition for their readers.

Goodnight all!

Sunday, October 19, 2008

Day 141 - Oct 19, 2008

Another awesome day today. First Breezy came home (with Tracy too!) and Kev was really happy to see her. To see both of them really. He was, once again, in fine form all day.

As our surprise, we took him to my house and we had a nice family dinner. We had 2 stuffed chickens, mashed potatoes, garlic green beans and homemade M&M cookies. As our guests, we had my sister, Kim (who did most of the cooking = gotta love that, lol), my brother-in-law (b-i-l) Joe, my niece Chrissy, my friend Tracy, Breezy, Kevin and myself. This is Kevin's first meal cooked at home. Here are a couple of photos of all of us enjoying this wonderful dinner:

And we actually took a more formal photo of all of us too. Here it is, as well as one of just the three of us:

I must say, I think Kev will be sad to see Kim and Joe go home. He really is loving having everyone come and visit. Unfortunately though, they are leaving tomorrow afternoon.

At least Tracy is still here (and will be for 11 days - yay!). Although she claims she is filing a lawsuit because her cheeks hurt so much from laughing at Kevin's antics. He has just kept everyone laughing hysterically today. She honestly says her face hurts so much, lol.

Also, Kev did receive a call from one of the guys in Germany today. Rigney called and he emailed us some pics while we were talking to him and Kevin looked at them while Rigney told him about them. For the most part, Kev did remember most of the people. Some he would look at for a while and shake his head 'no', but each day we remember more and more so I am cool with it. And it always appears that Kev thinks about things overnight and miraculously remembers or understands by the next day. Maybe that will happen again. I must say, it was a very emotional call, on both ends. Kevin was really excited when he saw a pic of Rigney and realized he was talking to him. He was making noises and shaking his head 'yes' very strongly.

And that about sums up our day. I get to sleep in again tomorrow as my sister is coming in early. Yipee! I love to sleep, lol.

Now if only Kev would...

Saturday, October 18, 2008

Day 140 - Oct 18, 2008

Well...apparently Kevin gave some thought overnight to the lift and the new chair and decided it was ok because today he got in the chair and had a blast in the lift. Here are a few pics of the lift (using my new camera!):

And once in the chair, we made it down to my house (although we did have to go a different route - not through the parking lot, but to the front of the house) and my sis and b-i-l went to KFC and we all ate dinner together while there. I think Kev was in the chair over 3 hours today - which is awesome! We have a special treat for him tomorrow night, but I will share it with y'all then.

I am so glad that he was willing to do it after all! And recreational therapy saw him out and about today and told us that now that he is in the chair we can schedule trips. We can soon go to the movies and shopping and out to dinner and to the aquarium and a museum and so forth and so on. That is just so exciting, huh?

And Barbara, you also mentioned OCD. Wow - I have to say - that has really become part of Kev's life. Matter of fact, today we wheeled him past a basket and something was at an odd angle in it and he made us stop so that he could fix it. It was somebody else's grocery basket and thankfully they were cool with it, lol. It definitely is different - he used to not care what things were like, but now everything has to be 'just right'. Hehe - I guess more of me is rubbing off on him, lol.

Also, Kevin now has two new words in his vocabulary. He learned the word "no" a couple of days ago (I just kept forgetting to mention it) and today he learned the word "love". I think I am going to stop there for a week or so and just concentrate on him being able to say them without thinking about it. Sometimes it takes minutes for the word to come out and sometimes he still just says "hi" while trying to say something else. It's all part of the process, I know, but if we can get these ones fluent, then we can move on.

And that about sums up the day today. This has been an early post because Kev is watching a movie and only talks to me on commercials, lol. And yay! Breezy is coming home tomorrow morning! Her and my friend, Tracy, are coming in together. I can't wait for Breeze to see the lift!

Friday, October 17, 2008

Day 139 - Oct 17, 2008

Today was a different kind of day. Kev wasn't in a great mood, but he was ok. We did do something new today though and I think it was kinda scary for him.

PT actually ordered a new kind of wheelchair for him that is easier to maneuver and it can also go in a van or any wheelchair accessible vehicle. Currently the one we had was this HUGE, bulky thing that had no shocks and couldn't fit in any type of vehicle. The good thing about it though was that it would lay flat and we could just put a sheet under Kevin in his bed and 3 of us could lift him slightly and kinda slide him from his bed to the flat chair.

No can do with the new chair as it doesn't lay flat and we have to use a lifting device to slowly pick him up from the bed and suspend him in midair while we slide it/him across the room, with him just hanging in this harness type thing. Once we get above the chair, we lower him into it and remove the harness.

Let me tell you - it didn't go over very well. At first, I think it might have hurt his head to be jiggled around so much. But then I think he might have been scared. I did think, after a few minutes, that he was going to be fine with it, but I was wrong. We decided to try to walk to my house and once again, we got close, but then he started shaking really badly and we couldn't get him to calm down no matter what.

I just don't know what could be the reason. I realize that it was pretty much one of the only times he was truly outside. I mean outside with no roof over his head (we did keep an umbrella above his head due to his burns). Could it be he is afraid of the outside? I mean, let's face it - he was outside in the top of the truck when the attack happened. And other than the transports to the airports, he hasn't seen the sun in nearly 5 months. I know he doesn't remember the attack, but the subconscious has a way of making itself known.

Or could it be that he just hurt really badly from the bumps? Or did the lift petrify him because he was suspended in midair? Gosh, I just don't know. And who really could be something I am not even thinking of.

So hopefully he will be willing to do it again. If he doesn't - he won't ever be able to go on trips or even come to my house. He can continue to use the other chair to go downstairs and stuff like that - but that will be it. We can only hope as I would hate to see him so restricted, kwim?

I am going to finish up with a few questions and hopefully Kevin will be asleep by the time I am done so I can go home and go to bed.

Brenda - I sincerely hope you visit when you are down this way.

Barbara - Kevin used to be on Baclafin (sp) for his spasms. I am not sure what the new one is as it's a long name, but the Baclafin worked wonders. They only discontinued it because they didn't feel he needed it anymore.

Mary - you tell Clark to keep safe when he heads back to Iraq and it's nice to hear from you and your family!

To everyone from the Army that knows Kevin - thanks for correcting me on Ortiz's last name. I had written Cortez, even though I had a feeling it was wrong. He actually came by to visit Kevin today too. Kev just perks right up when he sees him. I love it! And y'all are right - Ortiz is a great guy and his wife is awesome too!

Karl - Kevin is an even bigger pain in the butt now. I'm afraid he is being quite spoiled, lol. Stay safe, buddy!

OK - he is snoring away so off to do laundry now. I forgot that I had to do that before going to bed. Aargh...

Thursday, October 16, 2008

Day 138 - Oct 16, 2008

Today was an awesome day! First, Kevin's head is smaller that it has ever been and thankfully - there is no real pain anymore. We did start a new spasticity medication yesterday so most of those are gone now too.

We did go to the gym today and Kevin sat up (with hardly any pain) for a full 20 minutes! The last time we tried this he only made it 10 minutes and he was in pain pretty badly. We did something different today too - we bore weight on his right arm. In other words, we had him lean his body onto his right arm. He did really well with this and I even have a pic to show you (of course he was hamming it up, lol):

He sure looks great, doesn't he?

So after therapy we went back to the room and my sister and Joe were already there and Kev was so excited! I think he is loving having all of these family members around. The only person we haven't gotten here yet is my dad and he will be coming in December.

And to top the day off, Kev and myself, Kim and Joe all went to a banquet tonight. Yes - even Kevin went. It was located in the hospital and it honored the wounded heroes. Y'all just won't believe what that was like! When we got there, they put us at a head table (more because Kev's chair takes up a lot of space) and Kev was really scoping the place out. Well, this guy and his wife happened to sit down at the table with us and when he and Kevin looked at each other, Kevin's eyes lit up with recognition and I swear - the look of glee on his face made me get teary. I didn't understand what was going on at first, but when Kevin kept looking at this guy and this guy started calling Kev's name as he got up to come to us, I realized they knew each other. Apparently they were together in Germany and went on a road trip to Ramstein. I can't tell you how many emotions flit across Kevin's face at that moment, but within seconds, he sat up straighter, got that soldier glint in his eyes and shook hands with that man, Ortiz I think was his name, with such force that I truly was turning away crying.

I wish I could explain why this touched me so much, but it was like Kevin was remembering a vital part of who he was. Who he is. And from that moment on, Kevin did sit up straight - for more than 2 hours - and he shook hands with generals and allowed all types of pictures to be taken.

And let me tell ya - he ate like a horse! He ate steak and chicken and bread and potatoes and pie and a cookie and then he came back and had cheesecake too. And truthfully, he ate BBQ ribs and a cinnamon roll right before going down.

So now I am going to share two pictures with you that will show what Kevin's head looks like on the right side. Mind you, the quality of these is horrible because they were pics taken at the banquet and printed out there on an inkjet printer and I used my camera to take a pic of them. I don't have access to a scanner here. The first is Kevin with Ortiz and the second is him and I.

Before scrolling down, think about whether you can handle seeing the pics. Please remember that Kevin does not have a skull on that side and his head is sunken in at the top and he has a huge sac of CSF right above his ear. It is not easy to look at if you are not a person that can handle these kinds of things.

I have put space between my words here and the images so you don't have to see them if you choose not to. Just close your browser now.

I personally feel he looks fantastic, but I have seen him look worse. And I have also seen the looks he receives while we are out and about at the hospital.

Wednesday, October 15, 2008

Day 137 - Oct 15, 2008

Ok - so I was seriously wrong. It apparently was the gauge because his head had major CSF reduction over the night last night. I was actually quite shocked when I went in this morning - and happy too - as he is always at his best when the pressure is released.

And yes! He was in fine form all day today, lol.

I am also pleased to announce that Kevin weighed in at a whopping 123 lbs today! Yahoo! He has gained 7 pounds in the last week or so. Which shouldn't come as a surprise with all the cheesecake he is eating, lol. Not to mention McDonalds and Pizza Hut and Cinnabon...

The doctor did also prescribe a new spasticity medication. I met with him first thing this morning and it was obvious to him today that it was necessary. Hopefully this takes the rest of the pain away. We didn't need to give him any pain meds at all today because he turns them away if he can handle the pain, which makes us both happy. We sure don't want to take home any addictions.

And my mom and Dawn left today to go home. It was a very nice visit. And tomorrow my sister, Kim, and her husband, Joe, are coming down. They will be here for 4 days. This will cover the time that Breezy was away. She is coming home (to Tampa) on Sunday.

I am going to hit some of the emails and then pop off to bed...

Pam - you mentioned seeing Moe talking to another couple about Kevin while at work. I just have to say - MOE - I LOVE YA!!! (and you too, Pam!) I honestly just couldn't handle all of this without you! You have helped me so much - first by raising money so that we can afford to stay here with Kev - and second, by just dealing with all of the caring people out there that have no way to find out information other than through you. I truly thank you so very much! And thanks for mentioning it, Pam. I sometimes forget all that goes on up there as I am just so focused down here.

And speaking of money - I want to mention a cookbook that the committee is putting together. I am going to just forget that it benefits us while I mention it (because that is still a bitter pill for me to swallow), but I just love cookbooks and always buy one when I see them for sale. I like it that it's ending up being about all of our servicemen and women. From what I was told, people are putting "In Memory Of" and "In Honor Of" and their loved ones' names with their submitted recipes. I think that is a great testament to our military personnel. Anyway, for more information on submitting recipes, please visit

Ronnie - please see someone that would have Breezy's phone number. Or drop yours in a post here. I am thinking I can get your airfare down here paid as it would benefit Kevin to see you. There are organizations that will help the wounded soldiers recuperate in any way they can and this would be good for him. We showed him your picture today and he was shaking his head and laughing because he remembered you.

Mel - we did receive the CDs. We listen to at least one every day (which kills me, lol)

Cathy M - I can't say there's anything that I need right now, but those that know me know that I would never ask anyway, lol. I am very curious as to what Holee knows

Holee...did you honestly think I wouldn't hear that whisper? Hehe...

Tuesday, October 14, 2008

Day 136 - Oct 14, 2008

Well, I think I was wrong. Kevin's head did come down a tiny little bit overnight so it really might have just been a gauge issue. I am keeping my fingers crossed on it.

I noticed today too, that all of his pain isn't just from his head. If you remember, they took him off of the spasticity medication and he has been having a TON of spasms and shakes in his right arm and leg. Every time he does spasm, he moans so it might be that as well. I will hit the doc with that one in the morning as that doc was out for the weekend and through tomorrow.

This is going to be a very short post as I am just so tired. I do want to thank everyone for keeping my dad in your thoughts too. He is home now - Breezy went and picked him up at the hospital and took him out for dinner.

Oh and Brenda - the package arrived today! Thanks so much!

I will catch up with y'all tomorrow night.

Monday, October 13, 2008

Day 135 - Oct 13, 2008

Hmmm...I am a little disappointed today. The neurosurgeon came and said that the gauge on the shunt just got misaligned and that's what caused the buildup of CSF. He did use the magnet to put it back to where it needs to be and he felt there was a difference after only 30 minutes, but I don't see any difference at all and it's been 13 hours since he left.

He is planning to come back in the morning to check it again and I am thinking he will test further then. Who knows...maybe I will come in tomorrow and it will be smaller and I will have been wrong, but I really don't think it's a gauge issue. And poor Kev is still in some pain. Sometimes he will just move and grab his head. I can only assume it's kinda like a migraine.

Other than that, it was a quiet day today. My mom and sister took off with my niece and went to the beach. And sadly, my dad ended up in the hospital in PA today. And my mom is here which makes it even worse. He is going to be ok, he just needs a stress test in the morning after having some chest pains today. My mom isn't going home until Wed afternoon, so my other sister is having to take care of everything on the home front.

So I am going to hit some of the questions y'all have asked.

Brenda - no box yet. I think things may end up in the mail room here at the hospital for a day or two. Let me know if you get a delivery confirmation and we will test that theory out.

Sgt G - the camera you sent arrived! Guys, this man and his wife sent me a new digital camera so that there are no blurry smiling pics any more. It has some kind of smile shutter and it also handles the blurries (I know - that's not a word, lol). And it came at a great time because Breezy took my camera home with her. Now I just need to figure out how to use it...

Jessica - although I am not 100% sure, I do believe the reason he can't sit long is because he has to rebuild all of those muscles from them not being used at all for months. We have been trying to strengthen them, but it's hard because when something like this shunt thing happens - we have to start all over again because we go days without being in the chair. And thanks for the link of the bullrider story. It was so understandable.

Kristen - tell Travis "hi" and that someday he will be able to go to the VA hospital in Butler to visit. I feel bad because there has been no time for me to call you guys at work and I miss our chats! Hell - I just miss all of you so much! I know you guys all read the blog so here is a personal "HELLO" to my girls at work!!

And that also applies to other friends from work (Cheryl, Susan, Jen, etc). Thanks to everyone for your continued support.

Jenna - that is very interesting about shunts having problems if a person is healing too quickly. I wonder if that could be our problem? And thank your husband for him thinking that the other families here may fuel themselves with the progress Kevin has been making. That puts a new spin on things.

So there we are. A few less emails in my inbox. And hopefully tomorrow is a better day.

Sunday, October 12, 2008

Day 134 - Oct 12, 2008

Another not so good day today. Although the results aren't back yet, it appears Kevin's shunt has quit working again. His head is much larger and he wasn't his normal happy self today. He is also in pain and that's not something we see often either. I just had to dose him up with some more pain pills in the hopes that he will feel better enough to go to sleep. I feel so bad for him!

Frankly, I am just getting very frustrated by this shunt business! Why can't things just work for once, kwim? I have already accepted that this has happened to him, to us really, but geez - cut us a friggin break already!! Grrrr. Man, I just don't understand life sometimes!

And really, I feel even guilty for griping about his shunt problem when there are people here in such a worse place than we are. Sometimes I hide in my room because it's hard to be with the others because Kev is doing so well. They always ask about him and they are always so excited about the things he says and does, but it's always hard when I ask about their guys and get their responses. One woman has been here 9 months with her son and she is happy because he opened his eyes for the first time a few weeks ago. 9 months of nothing. Gosh, Kev was in his coma for 6 weeks and I was devastated - I can't imagine 9 months. It's just so sad that these kinds of injuries occur. And they aren't all war injuries either. We have snowboarding accidents, helicopter crashes, car accidents, one guy fell off a roof - there are all kinds of causes here.

I will say one thing though - they have all said that an open head wound is the best kind to have. Those TBIs are typically in one area of the brain. Closed head wounds have the brain bounce around, crashing from one side of the skull to the other, causing multiple brain trauma areas - and those are the guys that aren't seeing major improvements. They are the ones that make my heart bleed. It's just so sad...

Wow. This is one depressing post, huh?

So I will end with one good little part of the day (to make us all feel better) - Kevin is eating like a horse. I am very afraid that it won't be long until he is back to what he was before he left for the Army. Back then, when he wanted peanut butter sandwiches, he would literally use a whole loaf of bread and 1/2 of a large jar of JIF peanut butter. I could barely afford to feed him back then and it looks like it's heading back that way, lol. But I'll take it - I really will!!

Saturday, October 11, 2008

Day 133 - Oct 11, 2008

Not a whole lot happened today. Kevin did wolfe (sp) down a whole cheeseburger from McDonalds for dinner and it was just so nice to see. I love watching his tongue and facial muscles get stronger every day.

I am also very excited because Kevin opted to go to a pizza/football party today. They have events every day here for the patients on 5 North, but Kev never wants to go. Today I mentioned it and he was nodding yes and got that excited little gleam in his eyes. It probably has to do with the pizza more than the football - but I am just not sure, lol. I will say this - he CLEARLY says Steelers now. And he also says THANKS clearly. It took him a long time to get the "S" down pat on the end of 'thanks'. But he did it, and I am so proud of him!

One other thing that is really cool is that we have been Skyping with our friends and family now. If you don't know what Skype is - it's a video conferencing program that allows you to talk for free over the internet. It also allows you to see the person you are talking to, as long as they have a webcam. It's a fun little application!

So this kinda sums up the day. I had planned to go to the casino last night, but Kevin actually woke up before I got out of the room and didn't go back to sleep until almost 1am. I NEVER leave before he goes to sleep, so we just didn't make it to the Hard Rock last night. BUT - we're goin' now! So toodaloo everybody!

Friday, October 10, 2008

Day 132 - Oct 10, 2008

Today Kevin was very excited to have an egg and cheese biscuit from McDonalds! And here is the evidence (and yes, Liz - he always was a ham!):

Mr K is quite the hungry man! He also had 2 slices of pizza (he calls it "za" and he specifically asked for it - it took me a while to get that one) for dinner tonight and cheesecake a few different times throughout the day, lol.

We are also working toward getting Kev to sit up on his own more so that we can go out and do things in the Tampa area. Today we took him to the gym and lay him on a hard surface. We then sat him up with his feet actually touching the floor and his back was against a physical therapist so that he could 'hold Kev up'. We did something like this once before, but he was on his soft bed and didn't work too well. Anyway, it was very painful for Kev, but he managed to do it for 10 minutes straight. Our goal is 15 minutes pain free by the end of the next two weeks.

After that, Kev and I went outside for a while and then we went shopping. We bought gummi worms and Yahtzee. He picked the game and told me he remembered how to play so we will see this weekend. I am also very happy to say that when we got up to the counter, Kev put everything up and then paid the man with my debit card without any prodding. He even went to sign the slip, but I had to tell him it was my card and he couldn't. I don't know if he remembers now how to do it from his past or if he learned how the other day when we went shopping. He was always a fast learner if it was hands on so there is no way for me to tell.

I also want to say, I really like this hospital. I know that usually VA hospitals have a very bad reputation, but this place is really wonderful for someone like Kevin. I know that I haven't really had any experience in the rehab setting, but I like the stimulation and the ability to go do things. I am hoping to have him be able to be in the chair long enough to go to my house and have me stuff a chicken, roast it and then eat there. I am hoping to do that within 3 weeks or so. I think it will do him a world of good to eat dinner 'out'. We need to wait on his new chair before we can go though as the one he uses now doesn't handle the bumps very well.

So I am going to touch on the few questions that need answered and then take my mom and sis to the casino. I always feel bad when people visit because I can't really go do anything. I felt most bad for Joyce as I didn't even really get to see her at all. It was just bad timing, I guess. But I love ya, Joyce!

Anyway, Becky - we did get the pics of Wayne! Wow - he looks great. Kevin just held the pic up to his face and had a funny grin. He also 'says' he remembers him.

Debbie - I would send any packages to Kevin himself. The hospital is very good at getting the packages and mail to the patients. And besides - he loves getting things, lol. Just today, Philip from England (?) sent Kev some chocolates in a basket - oh my - you shoulda seen his face, lol. And then he wrapped his arm around it and tried to hide it so he didn't have to share. It was so funny!

Lisa - you asked where Breezy's favorite place to shop is? Hehe. If it has a cash register - it's her favorite, lol. Seriously though - I guess American Eagle. Or Wal-Mart.

OK, perfect timing - Kev is just drifting off so I am going to head out. Wish me luck. I can hear those penny slots calling my name (yep - I am cheap.)

Thursday, October 9, 2008

Day 131 - Oct 9, 2008

My mom and my sister, Dawn, came today to spend a few days. It's such a big help because Breezy is in PA for a week or so. And we went and had a nice dinner tonight, which was great. And Kev made out because he got more cheesecake, lol.

So...let's see...Kevin was fitted again for his helmet. Once it's complete, he can get up on the parallel bars and walk (with the help of a brace for his right arm and leg). He will actually have to wear this any time he goes anywhere or does anything. It's just to protect his brain as he has no skull on his left side to do the job. To give y'all an idea of what it's gonna look like, here are some pictures. Mind you, this is just a soft template, but you will get the gist. Oh - and Kev is being a smartass in these pics. In the first one he was pretending to be scared and in the second he was acting like he was Joe Cool. He is such a dweeb, lol.

If you notice in the second one, you can see the top of his new arm brace. His right arm is perpetually curled up to his neck in a spasm. It won't even straighten out at all - even with applied pressure. So we have a new brace that has a gauge on it that you turn to force it over a long time span to straighten out. It's actually pretty cool that something like this can be done, but it does bother Kevin to wear it for too long. We started out with an hour today and want to get up to overnight.

And I am pleased to tell you that Kevin has already graduated to regular meals. No more soft solids. Yeah - 2 days and he is already eating so much food. Obviously we can't give him chips or anything like that, but he gets a normal tray now. I do have to cut all of his food up, but he is doing so well!

I did learn something today too. I figured Kevin had a lot of problems with his lips because they had to grow back, but that's not the real reason. It turns out that it's because his neck was so badly burned. Just like his eyes, as it is healing it is getting tight. And as it tightens, it is pulling his lower lip down and down causing it to be dropped from his mouth. It looks like he will need surgery to correct that. I am hoping they can do it when they do the lower lid release. Every time he goes under I get physically sick. I hate it!

And to end out the night, here is a pic of Kev pretending to be asleep. He does it to see how much he can get away with, lol.

And while I am thinking about it - I want to thank everyone again!! We really appreciate all of the support that y'all have given us. We have received so many beautiful gifts - like the quilt that so many people from all over the US made together (started by Holee) and the other blankets and CDs and learning toys and two Terrible Towels (which you have to see Kevin swinging around like he is at a game and he is chanting "Steelers, Steelers, Steelers", lol) If I can figure out how to get a video of it - I will post it. It's just so funny! But I digress - I do want to thank everyone. Even the financial support has made it possible for us to be here. I gotta say - we really just couldn't do this without all of you.

I thank each and every one of you from the very bottom of my heart. Our hearts, really, as Kev and Breezy would say the same.

Once again, a HUGE THANK YOU!

Wednesday, October 8, 2008

Day 130 - Oct 8, 2008

I can say this much - Kevin will talk again! I am sitting here now (this post is going to span all day) with the speech pathologist and Kevin was able to say "Steelers" almost clearly. (Yes! Can you believe he can't say "MOM", but he can say "Steelers"? Where is the justice in that, I ask?!! lol)

He is also able to play tic tac toe and is able to write his name (albeit sloppily, but still...) He also knows what year it is, and he was able to choose his birthday, but he does still think he is 19 years old. That's ok because he had a birthday while he was still in his coma so I am assuming that is natural.

He also had Pizza Hut pizza today and did fantastic with it! He was so happy! He ate about 1 and 1/2 pieces.

It was a very hectic day, but it was just normal busy so it was ok. We both managed to take a little nap this afternoon though, which was really nice.

So I am going to just answer a few questions because there really isn't much to say today.

Holee - Sew Much Comfort has already altered some clothing for Kevin. We just can't wear anything for long yet because it bothers him. We already have some skin breakdown on his right elbow from his compression garments so we are holding off on any other articles of clothing at this point.

DeeZee - Kevin was given the alternate of wearing his PT clothes instead of his uniform as of yesterday (when I pitched my fit), but as mentioned above - we are still planning to hold off for a while.

Steve - I have intended to call you since yesterday, but time is just so hard to find right now. I do have your number and will try as soon as I have a chance.

Pam - shoot! Kevin isn't tired from trying to keep up with me - I'm tired from trying to keep up with him, lol!

Barbara - I just ordered "My Stroke of Insight" from Amazon. That looks like a fascinating read! I just can't even fathom being intelligent enough to realize you are having a stoke and remembering all of what you went through well enough to write a book about it eight years later. Unbelievable! (I guess this explains why I am not a brain scientist, huh? LOL)

Cory - I am sure Kev would love video of you guys skateboarding. Send it along!

Mel and Brian - thanks for sending the 'screamo' CDs. I know Kev will love them - but I sure won't!! LOL!

So here we 130! Wow, huh? Who would have thought we would make it this far...and have made such GREAT strides!

Tuesday, October 7, 2008

Day 129 - Oct 7, 2008

Well...thank you all for standing behind me. I actually woke up just as mad as when I went to bed last night. I came to the hospital earlier than normal today and took care of business. I first went to our head nurse and talked with her about what the nurse said to Kevin yesterday. I am leaving it in her capable hands as there's really not much I can do myself.

I then went to a different captain (it turns out yesterday's captain was actually a sgt major - I am so dumb about this stuff) about the uniform issue. She told me that it was not a mandatory thing for all of the patients in our ward (but it is on the other wards). She said that nobody ever said it was mandatory so a Staff Sgt was kind enough to reprint a copy of the letter that was included with all of the uniforms. That letter said that all patients MUST wear their uniforms from 0730-1600 hours. She was just as upset as I was and said she would take care of it. I am also going to leave this one in her capable hands.

To be honest though, it just doesn't matter to me what some high ranking official wants. If I feel Kevin is healthy enough for it, by all means I will stand aside. After all - he is Airborne and he is proud of it!! But while he's not healthy enough - I will stand between him and any potential problem or harm. And this could cause harm.

So now I have to move on (because I really don't have time to dwell on this kind of stuff) and tell you some GREAT news!

Kevin took his "swallow study test" today and passed with flying colors!! If you aren't familiar with this - it means that he can eat all day, every day now! There is no need for our speech pathologist to be there. So he got his first lunch tray today and I missed it! Breezy got to feed him and he had meatloaf and mashed potatoes. Breezy said he was so excited! I guess he wolfed it all down, lol.

Dinner wasn't so good. I have to tell you - I have no idea what that stuff was, but Kevin was brave enough to try it. Y'all woulda laughed. He put it in his mouth and immediately stuck his tongue out for me to scrape the food off. We were all laughing so hard, lol.

OK, I need to cut this short tonight. Breezy is going home tomorrow to PA for a week or so and I want to go say goodbye tonight. I know I am behind again on answering questions, but I will try to tomorrow night.

Monday, October 6, 2008

Day 128 - Oct 6, 2008

It was a struggle on so many levels today. Kevin is doing well, but he was tired and cranky all day. First, because they came and cut his hair and he didn't want it cut. That was done before I even got there today. Military regulation? I have no idea!

Next, we had a VERY young nurse talking to Breezy (in front of Kevin) about how she doesn't feel Kevin needs a sitter. She kept telling Kevin "You are a grown man! You don't need someone in here with you all the time!" Well...yeah...he is a grown man...with friggin brain damage!! Hello!! Now he doesn't want anyone in there all day and I am just curious how she thinks he is going to notify a nurse when he needs something? I mean...can he yell "NURSE"? Can he hit the call button? Uhhh...another no. Can he get out of bed and walk to the nurses station? Hell no! Although he would probably try and therein lies another problem that requires a sitter. I mean, just what does she think is gonna happen when he slides out of bed trying to get help and hits his head? He has no skull for goodness sake! Grrrr...

Next - and get this - someone in the military has decided that all of the patients need to be in uniform from 0730 - 1600 hours each and every day. HA! You know what I think? Whoever made that decision should get their ass to the hospital and dress all these guys. I mean, let's face it - none of these guys/girls can dress themselves. And in Kevin's case, the left side of his head is huge and he is burned all over his body. He already wears compression garments and you want him to be in uniform? And just how much time do they think we have? Geez, it takes hours to shower him, cover his body in lotion for his burns and then put all his garments on. Mind you - those things are TIGHT! And hot! And itchy! And they are very hard to pull up! And now I am supposed to put his uniform on? I THINK NOT!

So I told the captain that it just isn't happening! I don't care if the president himself comes to visit! Matter of fact - bring him on! Let him come and dress him for goodness sake!

That is just ridiculous! He's a patient in a hospital - not stationed somewhere ready and able! Gosh - this just burns me! Believe me - I support the military! I do! But get friggin real! Somebody just isn't using his or her head!

Damn! Now I am mad all over again! What a crappy day! There were so many other things that happened today, but I am just going to go to bed. I am not fit company tonight and I am probably already in trouble for posting my anger at some idiot commanding officer.

So ignore me. Ignore this post. I probably shouldn't even click the 'publish' button, but I'm going to. This is my journal and this is how I feel.

Sunday, October 5, 2008

Day 127 - Oct 5, 2008

Today was a very uneventful day. Kevin was in a decent mood, but not as good as yesterday. Today he just wanted to watch TV all day. I did make him get in the chair and go outside because I think it's important to get fresh air every day, but let me tell ya - he didn't want to.

I honestly think those days where he is carrying on and joking all day suck all his energy out. He is always very tired after one of those days.

And the poor thing just can't get comfortable tonight. I just had them give him some anti-agitation medication to get him to stop tossing and turning. Sometimes I can just put lotion all over his body (for his burns) and that will settle him down, but not tonight. It's just so hard to see him like that.

So Holee asked what it's like for Kev to get mail in his room and he actually gets mail already. They are very good at delivering it right to him. And he LOVES getting stuff. It probably breaks up his day, kwim?

And Holee - Breezy is at the game tonight and she doesn't even have her own Terrible Towel with her! She really got a kick out of your statement though.

Whitney - we do pick up our mail at the front desk of the hotel. Well...Breezy does, lol. And I can't really think of anything that would make things more comfortable. Thanks though!

Brenda - thank you so much for ordering those things for Kevin. I haven't even went to the website yet - there just hasn't been time. And mints sound yummy! I love those things!

Michele - on day 118, you mentioned about being able to understand your m-i-l when she only used the word "one" for everything after her stroke. I completely understand that! Although Kevin mostly only says "hi", we do understand nearly everything he is trying to say. It's in his inflection and his hand movements and sometimes even by the look on his face. I am glad we have gotten to this stage because it was so frustrating in the beginning when he had things to say and we just didn't understand.

And to Jodi - we are working on a family photo. We actually did take one last night, but Kevin grabbed the camera out of our hands to see it and it was the first time he has seen himself since the attack. He was very upset. The first thing he did was touch the left side of his head. We were trying to 'hide' that part with my face, but the beginning of the bulge was showing. And because we had all the lights on, the redness on his face was very bright (it is muted in all the pics taken with my phone). I just never thought about him wanting to see the pics as he hasn't before now, but again, I have to realize how different he is each and every day. And it's ok - because he is going to have to know what he looks like eventually anyway.

But now I just can't bring myself to post that photo. I need Kevin to be more comfortable with it before I can do it. And that will come with time and me taking more pictures. I can remember what I thought when I first saw him (and I do realize that was a lot worse than what it's like now), but it still has to be hard to see how different you really look from the last time you looked in a mirror.

Which adds another dimension to this ordeal - depression. We were lucky before as he hasn't seemed to have any of those symptoms, but seeing what he looks like could change all of that. I sure hope not, but rest assured - I will be on top of it!

Saturday, October 4, 2008

Day 126 - Oct 4, 2008

Kevin was in fine form all day today - which we love. It's always a great day when you are laughing throughout most of it.

Breezy spent some time this morning with Kevin teaching him how to write his name. I had planned to learn to write with my left hand along with Kevin, but this is something that Breeze can do while she is with him as she is left-handed. He actually is doing pretty well for having to start all over again. She is a very patient teacher and probably gets more excited than he does, lol.

Which brings us to some great news! Kevin can read!! Today we were listening to my IPOD while on our walk and Kev grabbed it out of my hand and scrolled through and picked an Atreyu song. Atreyu is a heavy metal band and I must have downloaded it for Kevin a while ago and forgot. I was shocked. I thought it might just been a fluke so tonight I had him scroll through and find some different bands. He got each one right. I am so dang happy! I was so afraid about this because I can't see how anybody can get by without the ability to read. I mean, you can't find your seat on a plane or read road signs or order from a menu or anything (and I'm sure these aren't the most important things, but they are all I could think of right now, lol).

Kevin also sneezed for the first time today. He was actually scared - he didn't understand what had happened. We had to chuckle at the look on his face and it was a good thing we did, because it made him realize that it was an ok thing to do.

It's so weird being where he is, kwim? I mean, here he is reading - but he doesn't know what a sneeze is. He can do so many 'adult' things, yet not understand other things that you learn as a toddler. It's hard sometimes because we just assume he is normal and just can't talk or move his right side. And each time he shows us something he doesn't understand, surprisingly, it comes as a shock. We then have to sit back and put our own heads into the right place. We have to remember that a month ago he did nothing but look at the ceiling.

Here's another instance that happened just today. We went to the store here in the hospital to buy an electric razor. We shopped all over every aisle and Kevin knew exactly what he was doing - he even went nuts in the candy aisle like normal. He wanted all these candy bars that I knew he couldn't handle yet, but I talked him down to M&Ms, figuring I could melt them slightly in the microwave. So he also picked out some pudding packs and we got to the front of the store where he put everything up on the counter from his lap. He did so well - he always did like to shop, lol. But then came paying for it. Kevin had no idea what that meant. He just sat there with a confused look on his face when I told him to use my debit card or he could use the cash in his wallet. He just had no concept whatsoever. Yes - it's not a big deal. And it will all probably come back in time - but here I am thinking this is a near normal trip to the store. The only difference is that Kev is strapped in a wheelchair and can't speak. But it's not - and that's what I need to keep reminding myself, I guess.

BUT - I am still fine with all of this. I really am. I am just so happy that he is where he is that it just makes me smile. I can't wait to see where we are in another month.

And speaking of another month - Maritza called and said they may be coming later this month. It will sure be nice to see a friendly face on a daily basis! I know I am struggling with loneliness here and I can tell you it's also hard on Breezy. She had all kind of new friends in TX, but there is no one her age here.

Oh well...we're tough - we'll make it!

Friday, October 3, 2008

Day 125 - Oct 3, 2008

It was a good day today. Not too much happened really. We did have some broccoli and cheese soup and cheesecake (surprise, lol) for lunch, but other than that it was a normal day. We did get in the chair, but he was pretty tired so he didn't do too well in it. He hadn't been in it in days so it was understandable.

I am just going to answer some of the questions that y'all have been writing for the last week. I am way behind in answering due to his surgery so bear with me.

Liz - Kevin would love an Army fleece! And I sympathize with you on being in ICU Peds for that long with your baby. I hope all is well now?

Grant (and everyone else) - if you write Kevin a letter, I will definitely read it to him. Send pics of yourself too. He doesn't seem to remember names, but the pics will help.

Holee - Kevin is holding a towel in his right hand because his hand is in a constant spasm (curled into a fist). This keeps his fingers open for a short period of time, allowing some range of potential motion.

Monica - are you sure Jon wants to play Kevin on the XBox? LOL - I'm sure Kevin will kick his butt again someday.

Actually, I think I got all the questions. It turns out most of the emails are the food possibilities you all sent us, lol. So...I guess I'll sign off for the night! And what an early night it is, huh?

Thursday, October 2, 2008

Day 124 - Oct 2, 2008

Today wasn't quite as good as yesterday, but it wasn't too bad of a day. His head does seem to be a little bit bigger, and we did go for another CT scan, but we don't have the results from this yet. They may have to tap his head again tomorrow and drain more fluid - we aren't sure yet.

He is also running a low-grade temp - hopefully it's not working up to an infection.

We are also having an issue with him vomiting nearly every morning after his 9am meds. The docs and I went over all of the meds that he is getting at that time of the day and we have decided to wean him off 3 of them. They are his spasticity, seizure and H.O. (bone growth is his right hip) meds. I am concerned a little bit about all 3 of them being removed, but they assure me that the amounts he was getting were such low doses that it shouldn't matter. I have to admit - I am most scared of the seizure medication being removed. We have not had any and I don't want him to.

So Kev was pretty lethargic this morning and that is typically caused from the CSF not draining and the CSF building back up in his head causing pressure on his brain. It scared me because we just fixed his shunt and it may mean that it's still not working.

He did get better this afternoon though and at one point he even grabbed his toothbrush and used it as a microphone and sang "Bennie and the Jets", lol. It was hilarious. And believe it or not, we could even tell what he was singing.

Chrissy and Drew came today also and we all sang "Happy Birthday" to Chrissy. Kevin sang too and it was a nice 'family' moment. Maybe the next birthday Kev can have cake!

So I have some pictures. The first one is Kevin drinking some Gatorade. We chuckled over his pinkie sticking up like he is at a high society tea or something, but it's actually because it had been splinted for so long that it won't bend now. We are working on that.

This next picture would be my favorite if it wasn't so blurry. I love to see him smile and I am so disappointed that it is blurry. I have been using my phone to take these pics as Breezy had my camera and that's why the quality isn't the best. (of course the blurriness is human error, lol - we were laughing at something he did so I wasn't still enough for a clear shot)

That pretty much sums up the day so I am going to sign off. Kev just fell asleep and I want to head home.

Wednesday, October 1, 2008

Day 123 - Oct 1, 2008

Well, you wouldn't even know that the last few days even happened if you were to see Kevin today. It's just amazing, really. And he hasn't even had one tiny bit of pain medication today. He has two incisions, one in his head and one in his belly and only made a grimace when someone touched the one on his belly to roll him over. That's it - it's like nothing happened. We are even back up in his old room - no more ICU.

So to start the day, he woke up this morning and seemed fine. I was concerned because his head had actually gotten bigger through the night so the neurosurgeon came in and adjusted the flow on the shunt. As time progressed, the size hasn't gotten any larger and it is actually starting to decrease as of this evening.

The most awesome thing though - Kevin spoke some words today. He has been back to his own funny self and he has been just blurting out words all day. Unfortunately he doesn't seem to be able to repeat the words yet, but if he can say them once or twice, eventually he will say them naturally. (right?)

So let's see, first he said "what?" after he snorted at me and I razzed him for making noises at me. He rolled his hand up and said "what?" to make it appear that he didn't hear or see anything. Trying to make me look like I am hearing things. The little shit.

Then I told him I was gonna kiss him if he didn't say a word and he was laughing and pulling back and he said "NO" plain as day. Breeze and I got him to repeat that one once, but he won't say it anymore. I gotta say - the look on his face was priceless. He was shocked that he said it.

He also told Breezy to "Stop" when she was doing something to make him laugh. I wasn't there for that one, but he did repeat it tonight, just not nearly as clear I guess.

I am very excited by these things. I can't wait til tomorrow to see what Kathryn, our speech pathologist has to say. I really think that as the size of his head is reduced, he will be able to say more and more.

I also have to admit that he is addicted to cheesecake from The Cheesecake Factory. I had to run to the mall tonight to get my phone fixed and mentioned I would get him some. His eyes lit right up and I had to read him all of the flavors and he picked out 2. Turtle and Peanut Butter Chocolate Chip Cookie Dough. I sure hope Kathryn allows him to eat tomorrow. He will be pretty upset if not...

So there you are. My own personal superhero! Actually, I am pretty lucky because both of my kids are superheroes. Maybe I'll buy them capes for Halloween, lol.

And speaking of Halloween, Breezy and I stopped at the Dollar Store tonight and bought him all kinds of decorations for his room. I even bought him a mask so that we could trick or treat in the hospital, lol. Hmmm...I wonder if I can get him to say "trick or treat"...