Saturday, January 31, 2009

Day 245 - Jan 31, 2009

This is going to be a quick post tonight as I am just exhausted. I searched all day for homes with my wonderful realtors and have a couple of homes in mind. We are going to take Kevin to see two or three tomorrow and get his two cents since it is going to be his home, lol.

Other than that, we did have some visitors tonight. My friend Sherri L from work came with her husband and daughter. It was so nice seeing her! We are going to try to get together tomorrow night for dinner maybe. Depends on what time we get home from house searching. There is some kind of football game on tomorrow night that everyone seems to be interested in, haha.

And now I am going to end for tonight. I can't report much about Kev because I didn't see him all day. He is now soundly sleeping and I am still searching for homes. We need to contract tomorrow for Monday morning's bid offering.

Friday, January 30, 2009

Day 244 - Jan 30, 2009

I am watching my son sleep in my bed tonight, trying to come to terms with who he is as opposed to who he was. I don't do this often - look back - but it's there tonight. Sometimes I think it's sad because I don't always remember who he was. I can't always recall him being able to walk. Or talk fluidly. And I don't always remember what he looked like without all the burns and droopy eyes and head scars. I know that every mother remembers her babies growing up, but it's hard for me. Do you think it's a self-preservation kind of thing? I suppose it really is a good thing to not focus on the good times from the past because it would make these bad times all the worse. But do I really want to do that? Do I HAVE to do that to continue on this journey?

It's just laying so heavy in my heart tonight. He looks so different now. So incredibly scarred. And as he is becoming more and more cognizant, he gets so frustrated when he wants to say something and can't. And he tries to get out of his chair without someone standing next to him now and he just can't do that yet either.

And I know I just need to be patient. I am quite sure he will walk again, probably with a serious limp or even having to drag that leg, but he will still be able to walk.

And he does say more and more words now, it's just such a slow process to teach him new ones.

I don't know.

I wonder if I am just sad tonight because there is absolutely no way to get the house that Kevin wants? I have tried so hard, but without help - it's just not going to happen. It kinda makes me feel like a failure as a parent that I can't get something that my son wants so badly. It was so hard having to sit down with him tonight and explain to him that it's just not going to happen. He was so disappointed. He accepted it, just like we have always accepted all of the rough spots in our lives, but the disappointment was still there in his eyes.

And to make matters worse - if I don't find another one this weekend, we may not get one at all. As we all know, the economy is affecting the mortgage industry very hard and most banks are really holding back on mortgages. My broker was able to find one that will do so (with considerable penalties because of his lack of credit), but she doesn't think the offer will be there for very long. She is seeing too many emails with banks pulling away and told me to hurry. I have been looking online for the last 6 hours for the most part and they are all starting to look the same to me. And tomorrow I will be busting my butt with our realtors going from house to house, just trying to find one. Please keep your fingers crossed that this happens.

Ok - so now that I have pulled everyone down (so sorry), I will mention some good things.

First, Kevin and Breezy were talked about on KDKA this morning because they were on the Mike and Mike show.

Kev was also 'discussed' in an article in the Chicago Tribune. Click here to read it.

We also received Kev's Solumbra clothing today. Here is a pic of him wearing one of his new outfits:

Notice the new wheelchair? We are trying to get him accustomed to a normal small one instead of that monstrous one used for guys that pretty much can't move at all. We have to do this in small doses though because there is no head support and he is used to having it. But let me tell you - he can whiz around the hallways with that little one. He is fast!

And last, but not least, here is a pic of Kevin with someone from his (our) past. One of Kevin's friends' mom and sister from his growing up years came to visit today. I could tell Kevin had to reach into his memory for it to click on who it was, but it only took seconds - maybe 10 - and he did it. It was such a wonderful visit as we miss all of our friends and family from PA. I sure with the Super Bowl was more often - then maybe we would get more company, lol. Anyway, here is Sharon and Haleigh with Kev this afternoon.

It was just so nice to visit. But, once again, I did get a bit teary as it made me realize how much I really miss home.

Oh doesn't matter... Just wipe the sweat and drive on, right?

Thursday, January 29, 2009

Day 243 - Jan 29, 2009

Kevin did phenomenal today. All day. He first went to the Mike and Mike show and had a great time. I am told that they did show Kev on tv and I know that they talked about Kevin saying he was the best Steelers fan out there, which is kinda cool! After the taping, the kids went to hobnob and they met all kinds of football players. Kevin was given a jersey and Mean Joe Green signed it right there for him. He was given another jersey from Holmes and he got more hats and a bunch of new signatures on his hats - including Jim Kelly's.

After that, the kids came home and Mike Ditka came again, along with Rocky Bleier. It was a big event here at the house and more than one person said that Kevin 'stole the show', lol. He was chanting "Steelers" and swinging his Terrible Towel. He got both Mike's and Rocky's signatures on the towel that Franco signed and he got a signed football too so it looks like we are gonna need a room in our house for SB paraphernalia alone, lol.

All in all, the kids did have a great day, but unfortunately - they didn't see one active Steeler's player. They had to come back here early to see Mike and Rocky so we are thinking the Steelers showed up later in the day at the media event. I know they are so disappointed about that, yet they are happy at who they did see and the experiences they had.

I don't have any pics of the media event because Breezy has her camera at home, but here are a couple from this afternoon. Gotta love the bling on the second one, huh?

Anyway, I don't know if there is a way to watch the Mike and Mike show online or not. Breezy was able to find an audio clip where they mention Kevin, but her email carrier holds emails for a while so I don't have access to it yet. I will post those pics and the link tomorrow night.

And to finish out the day, after all of this I figured Kev would want to go take a little rest, but no! He wanted to go eat. So we went to the Cheesecake Factory for dinner. It was really nice. It's just nice to be able to go and do things with him, kwim? Normal things. I just need him to understand that we need to remain on a McDonald's budget and not all these expensive restaurants, lol.

Ok, off to bed for me...

Wednesday, January 28, 2009

Day 242 - Jan 28, 2009

We had a very busy day today. We spent the late morning/early afternoon with 4 more football players - including Franco Harris. Here are some pics:

These guys were really great to everyone. They even brought the patients each an autographed Super Bowl hat. Kevin was pretty excited!

And y'all will have to excuse me because I don't know who these players are. I can read on Kevin's hat that one is Lydell Mitchell, but other than that - I have no clue. For those of you that do know - please put it in a comment so that I can keep a record for Kevin.

And tomorrow both of my kids are going to the taping of a Mike and Mike Show from ESPN. I don't know anything about this show either, so if it's live - you will want to tape it from maybe 8:30 on. If it's taped for future airing - it could be on the next day. I honestly don't know, but only 2 active duty soldiers were being taken and Kevin is one of them. He may end up being on tv - who knows. After that, the kids are going to a meet & greet of sorts to hobnob with some of the NFL stars. Unfortunately - I can't go (although the only reason I would want to is to take pics, lol). Kev was only able to take one guest and I opted to let Breezy go as she is the fanatic in the family.

Once that is over, Mike Ditka will be back and he is coming down to be with Kev and some of the other guys at the Fisher House. I had to talk to Public Affairs today because there are going to be some tv crews here with him and they want to possibly have some shots of Kevin (maybe because he is from the Burgh?).

I just hope that Kev can handle all of this in one day. This would all exhaust a healthy person so I can't imagine how Kevin is going to handle it all. I guess we'll know tomorrow, huh?

Tuesday, January 27, 2009

Day 241 - Jan 27, 2009

There really isn't all that much to say tonight, but I am going to give y'all a bunch of pictures.

The first one is from yesterday when the kids met the football players I mentioned. Forgive me if the names are wrong, but the players are Ike Hilliard (TB Buccaneers), Terrell Davis (Denver Broncos), Laurent Robinson (Atlanta Falcons) and Darrelle Revis (NY Jets).

The next two are of Kevin walking around the ward today. I am told he did it much faster today and he didn't even need a break this time (although he was WIPED OUT after completing the trip)

And this one is of of us eating our dinner outside tonight. It was a balmy 70+ degrees so we dined on the patio.

This next one if of my kids making faces at me:

And last - this one if of me at the beach yesterday with my sis, Kim. We weren't able to get one pic of us together. Bummer.

And that about sums it up for today. I am going to answer a few questions though...

Long Time RN - I did order a few items from Solumbra today and I did talk to them about designing some for the 'younger' set. They promised to take it to the manufacturer. Who knows. I am just glad Kevin is able to understand now that he will have to wear these clothes if he wants to go outside. I also showed the website to our doctors today and asked if the military or VA can supply them as they are necessary for at least the next 5 years. That would be awesome!

To anonymous - the CSF issue is resolved at this point. He will need plastic surgery - more than one too. The house is still up in the air. We agreed on a price, but are having trouble getting a mortgage for a 20 year old with no credit. I can't help because I don't have a 'real' job. Pretty much stuck between a rock and a hard place. I admit that I am getting so disgusted and discouraged about it too.

I have also contacted many organizations for help and a few have said they would - and then never called me again. I believe at least one even posted here on the blog, but I guess the economy is just too bad right now.

We have also gotten a few personal donations and believe me - we appreciate it. All of the money is laying in the bank waiting for this to go through. Hopefully it will all work out. And soon. We are running out of time.

To anonymous about the 173rd reunion - it's just too early to tell as of yet. I would like to go, but we will see.

Brenda - you mentioned putting a monitor in Kevin's room to hear him if he wakes. I had to chuckle at that one. We live in a tiny little room - kinda like a hotel room. This means that he gets my bed and I get a rollaway next to it to make sure he doesn't fall out. I have to have everything ready so that I don't have to leave the room once we are alone.

Emily - neither Wed or Thurs will work for us. The kids are doing some football things and won't really be around. Can't tell you guys anymore than that yet though, lol. I will try to contact you tomorrow to see if Friday is ok for you.

And now I am going to watch tv on the computer, lol. I would do anything for a PVR so I didn't have to watch everything online...

Monday, January 26, 2009

Day 240 - Jan 26, 2009

My son took 96 steps around the ward today and I missed it! I am so dang proud of him, but I so wish I had been there! He really is just doing an amazing job of walking and I noticed his balance is becoming better and better too.

He also had some of his staples removed today. The ones that were due to his skull being replaced were taken out, but the ones around his shunt were not. I am not sure what that's about.

And he and Breezy got to meet a few football players today too. They weren't either of the teammates from the Super Bowl, but they are here to watch it. I will have to upload a picture of that tomorrow night though because Breezy took them with her camera and she went home already.

My sister and I actually took off today and went to the beach. We had a great day just lounging around and we also went to John's Pass and walked around the boardwalk shops.

I did learn of a clothing company today that blocks 97% of all UVA and UVB rays too. It's called Solumbra and a woman that I talked to at the beach had it on because she has skin cancer. She said it keeps her cool and keeps all the sun off of her - and she can even swim in it! I found the company online and dang - it is EXPENSIVE - but it's worth it to be able to take him out without him having heat stroke from all the layers they say we need. Now I can only hope that he will wear it - he's so dang particular about how he dresses...

Sunday, January 25, 2009

Day 239 - Jan 25, 2009

We had another decent day - not as good as most, but that's because Kevin just wanted to go 'home' - home being the hospital. I was able to keep him down here until after dinner, but he gave the loudest sigh of relief when he hit his hospital bed. I actually felt really bad for keeping him away for so long, but I know he needs to realize that the hospital isn't his home and that we will be leaving that environment within a few months. I was told this evening that this is actually quite normal for someone going through this to feel most safe at the hospital and that he will need to stay away often to comprehend that it isn't home.

I guess it doesn't help that this place (The Fisher House) is not a great place to have to stay either. It's not that it's not beautiful - it certainly is, but they should have put some cash into insulating the walls. You can hear EVERYTHING that goes on in this whole building from your room. Matter of fact, the two women that just arrived a couple days ago that are next door - they fight constantly! It's become a bit of a joke here, but I can't stand to hear it all night long. Kevin was so mad too as they occasionally even woke him up over the weekend. You should hear them right now screaming at each other about one of them snoring. Oh well, it's definitely better than the young couple that was here last week. You can only imagine what I was listening to then, lol!

We did get up though and go to Cracker Barrel for breakfast today and he really enjoyed that. But to be honest, we didn't really do anything else at all. We all did sleep in and it still takes quite some time to get Kevin ready to face the day so it was actually early afternoon by the time we went for breakfast, lol.

So I guess we'll see what next weekend goes like, huh...

Saturday, January 24, 2009

Day 238 - Jan 24, 2009

I am pleased to say that Kevin slept all night last night - 11 hours to be exact. I can only imagine how wonderful it was for him to have uninterrupted sleep for the first time in nearly 8 months. I will admit that he wanted to go back to the hospital the first thing this morning, but I understand because to him - that's home. However, I stood firm and told him he had to stay and he is safely sleeping once again in my bed.

Hopefully - HOPEFULLY - I can get some sleep tonight though. I just couldn't last night. Fear, I guess. Stupidly, I kept checking to see if he was breathing??!! Like he's some kind of newborn or something...

But we had a good (and busy) day. First, we went to Citrus Park Mall and ate at the food court. We then came home and took a little half hour nap and then we went to the movies again, followed by a trip to Wal-mart and then we picked up dinner and came home to eat.

The thing that was most awesome was going to WM. Kevin bought himself a watch, some sunglasses, some toiletries and a bunch of junk food, lol. Matter of fact, here is a pic my sister took with her cellphone:

I was so excited too, because he never once got tired and turned into himself like he used to. He is just doing so incredibly awesome!

I am going to hit a few questions now and then try to get some sleep. Sharon - Breezy would love to tailgate with you! Please find Moe and get her phone number. I already asked Moe to try to find you because I am sure you are heading down soon. (Thanks, Moe! I love you!!)

And to Debbie and everyone else that mentioned the game - I don't see us being able to go. I know that there are no tickets available for anyone at the hospital and they are so not in our budget. Breezy is even willing to go by herself and I honestly did look them up to purchase her one, but I just can't justify it. We don't have jobs and money is just too tight - not to mention how expensive the tickets are. I do think Breeze will just end up sitting outside the stadium and partying with all the other Steelers fans that couldn't afford it, lol. And who knows...she may even know a bunch of them!

And I have to say - I thought about how typical the male and his remote pic was, but I was not brave enough to say it, lol!

And I am going to end with a request if you don't mind. Kevin was part of a youth group when he was younger and the youth minister was very good to Kevin when there was no male influence in his life. It turns out that the youth minister has a year old baby that has cancer and is having surgery (or may have had it) this week. Could everybody keep baby Jayna in their thoughts? And my heart goes out to you and yours, Pete.

And now I am going to leave y'all with a video that this youth group made. Kevin is in the dark brown shirt with the long black hair. Thanks Nicole, for letting me know about this:

Elisha and the Bears

Friday, January 23, 2009

Day 237 - Jan 23, 2009

I am signing in a little early tonight as Kevin is ensconced in my bed at the Fisher House for the night and I don't want to make a lot of noise too late. Yay!

It was a little scary at first because he was determined to go back to the hospital and not sleep here, but I told him that there was no nurse for him because she was sent home because he was staying here. It worked, but I was really worried.

And today we had a vision test. Kevin has lost all peripheral vision on his right side in his right eye. I pretty much already knew that because he can have something sitting right next to him and he doesn't see it at all. They did tell me he isn't color blind though so we just need to teach him his colors again, I guess. Other than that, his vision is way better than mine, lol. He could see clearly down to the smallest numbers.

So now I am going to leave you all with some photos. The first is Kevin walking today. The second was just taken moments ago of him sleeping.

Thursday, January 22, 2009

Day 236 - Jan 22, 2009

Today we went to the movies and had a blast. To be honest, the movie wasn't that great (Yes Man with Jim Carey), but we still had fun. Kevin was dancing and laughing and it was just so funny. I will admit though that he wanted to leave early because he didn't really like it, but once I explained that we couldn't because three other patients went too, he was okay with it. And I am so proud to say that we only went to the bathroom one time and he 'went' within 2 minutes. No more anxiety (as you said it would be, Kristen!)

He is really doing well overall. So well that the doctors have agreed to allow him to stay overnight with me one night this weekend. I am not sure if it will be tomorrow night or the next night, but I am excited and petrified for it to happen. Lucky for me, my sister, Kim, will be here to help too. She is arriving tomorrow afternoon through Tuesday.

And I am going to just quickly answer one question and then get to bed. To the anonymous poster that asked what kwim means - it stands for 'know what I mean?'. One of those silly net things I guess, lol.

Wednesday, January 21, 2009

Day 235 - Jan 21, 2009

Nothing much happened today. Kevin was in an ok mood, but we basically stayed at the hospital for the most part. We are trying to get him to take part in activities with the other patients, but he wants nothing to do with it. He gets very upset when he doesn't do things 'right' and I am thinking that's the problem. We were playing "Shout" and because he can't really talk I think he was embarrassed. I'm not really sure though, but I am giving it my best guess. I just wish he would understand that everyone on our ward has problems...

Anyway, I am going to cut this short. Breezy just called and get this...wants to just drive past the stadium where the Super Bowl will be played. She's probably trying to devise a way to get in, lol.

Tuesday, January 20, 2009

Day 234 - Jan 20, 2009

It's kinda been a rough day. I don't know why, but I am just down today. I suppose I'm just tired, not sure.

But anyway, Kevin had an ok day. We stayed in and I cooked dinner tonight and all was good for us until we were looking at some photos I picked up today. Kevin started crying again when he saw the pic of him with Breezy and I kissing him (the one I uploaded the other day). I couldn't get him to stop and he demanded to go back to the hospital and go to bed. I took that time to follow the advice on the blog here and forced him to go into the shower room and look at himself long and hard in the full length mirror. He just cried harder, but I made him keep his eyes on himself and let it all out. We were in there a good 15 minutes or so and he did eventually slow down enough to at least hear me say that it can mostly be fixed. As mentioned here, I had him point to the areas on his face that he wants changed. He just kept circling the whole thing at first, but then I showed him that it wasn't ALL bad - just the side of his head, his ear, his eyes and his chin area need cosmetic repairs.

I wish I could say that after he cried he was fine, but it really doesn't work that way. It will take a long time for him to not be shocked and appalled when he looks in a mirror. It will also take a while to get past the 'why me?' and the 'this sucks' stage too. He will need to accept the changes in himself and I just need to keep my eye on the line between working toward that acceptance and falling into a depression. It's gonna be a tough one, that's for sure. Especially because I cry with him every time he does. I just can't imagine what it's like to 'wake up' and look nothing like yourself. I know how hard it is for me to see him too right now and I've had 8 months to adjust to the changes - he is just now starting to see them so he has a ways to go.

Anyway, here are some pics from yesterday and today. The first one is Kevin holding Breezy in a headlock earlier today. It was so hysterical, lol:

This one is Kevin standing up down at my room at the house. I still don't remember him being that tall...

And the next two are of him at Red Lobster.

Looking good, huh?

And I am going to finish up with a couple of questions. First to BigD - I sure hope your son is doing well. My nephew had leukemia years ago and he is doing so well now. Keep your chin up! That goes for you too, Petra!!

Miss Em - you asked about Kevin's candy choices, lol. He seems to love all that sour stuff. Ya know - sour gummi worms, that sour tape like stuff (like fruit by the foot) and sour patch kids. He also loves gummi bears. Truth be told - if it's edible, he likes it! LOL!

Jan - you mentioned Kevin's new confidence might be keeping people from staring and I would hazard a guess that that could be part of it. He just doesn't look as sick anymore, kwim? Even his eyes are clearer, if that makes any sense.

Ok - it's off to bed for me...

Monday, January 19, 2009

Day 233 - Jan 19, 2009

We had yet another fantastic day today. First, we got up this afternoon and took a run to the Cheesecake Factory where we sat and ate a piece right there in the restaurant.

From there, we went home for a while and then we all loaded back up in the van and went out for dinner. Kevin got to choose and he picked Red Lobster. I was so nervous because it's kinda fancier and usually busy, but they were very accommodating. We sat near the back so Kevin wouldn't get bumped and let me tell ya - that boy can eat. He ate every last bite of the Ultimate Feast (shrimp scampi, butterfly shrimp, crab legs and lobster with a baked potato) and then he ate half of my chicken dinner and some of Breezy's crab legs too. He wanted me to order more crab legs, but I had to tell him no. I promised to take him to a chinese restaurant that Breeze frequents that has them 'all you can eat' for a lot less money, lol.

And something really amazing - Kevin pretty much pulls and stands up by himself now. He actually tries to push us away, but he just isn't sturdy enough to do it completely on his own yet. He is doing so well and I believe he will definitely be walking by the time we go home. Truthfully, it will probably be less than a month for him to walk alone.

And I took some pictures of us out and about today, but I left my camera in the van when Breezy dropped us off at the hospital and she took the van home with her so I guess you guys can see them tomorrow night.

In the meantime, I am calling it an early night.

Sunday, January 18, 2009

Day 232 - Jan 18, 2009

It was a very relaxing day today. We didn't do anything at all except watch a bunch of tv and movies. We were going to go to Wal-Mart, but I got too lazy and Kevin didn't really want to go either so we just stayed home instead.

I did forget to tell you guys two things that have been going on. First, Kevin has been writing his name without needing to copy it. He has even been trying to write his last name, but still has to copy it (who wouldn't, lol). We did find he is able to read for the most part, but when it's something like "raise your hand", he doesn't understand it or he just can't read it. I do know that he doesn't know his body parts for the most part, so I wonder if it's more that and not that he can't read it. He also doesn't know his letters at all so if you ask him to point at the 'A' - he can't. What he is doing is recognizing whole words. Very strange, huh? I would have thought all of that went together, not realizing you can read without knowing your alphabet.

He is also able to tell time. And even funnier - he will get on the therapists' butts when they are late. When they walk in he will look at the imaginary watch on his arm and then at the clock and then at them as if to yell at them. It is so hilarious. And who knows...maybe now he will get his whole hour of therapy instead of 30 or 40 minutes that is left by the time they get here. I think it's time for me to step up and crack the whip (so to speak).

As to the fluid on his head - today it is nearly all gone. Apparently the shunt is working very well. Now they just need to make sure it doesn't pull too much off because that can be just as bad. I think they intend to do another cat scan tomorrow so we will see.

And I can't begin to tell you how excited my kids are that Pittsburgh will be in the Super Bowl. I sure hope that the Steelers can stop by and visit, but then again Breezy would probably drop dead if Troy came in the room, lol. Oh well, we'll see...

Day 231 - Jan 17, 2009

You would not believe the things we did today. First - and this is a biggie - Kevin dressed himself COMPLETELY WITHOUT HELP!! The only thing I did to help him was to tie his shoes. I offered to do something a couple of times, only to have the hand held up in a stop motion at my face, lol. So I just backed off and cleaned his room a little bit. I was so proud of him. It took him almost a half hour and he was so exhausted by the time he was finished, but he did it! I foolishly just stood at the window and cried because I couldn't believe I was seeing him do this! It was amazing!!

After that, we went to Subway and picked up some subs and went back to the house and ate and then we loaded back up into the m-van and went to the mall. We had to return the skateboard I chose for Christmas so that Kev could pick out the one he wanted. I was really nervous because our last mall experience was horrible, but it went great today! We went straight to the skate store and Kevin picked out his board, trucks, wheels and grip tape. He was so excited to be in there - you could see it in his eyes. And I had to laugh because when the clerk had finished building it, Kevin had to inspect his work and thankfully it was fine. Kevin was so incredibly satisfied with his board that he grinned the whole time he held it in his hands.

After that, we went to the candy store and of course, he went nuts in there. We only had one little bad moment and that's because they had a mirror in there and he caught a glimpse of himself. We were able to pull him out of it within a few minutes so it was okay. I think I am going to have to show him daily what he looks like so he becomes used to it.

And then - and this is another biggie - we went up to the food court and Kevin's eyes lit up when he spied Sbarro's pizza. We ordered and I had intended to take it home, but Kev wanted to eat there. I didn't know what to do because I didn't think we were ready. I didn't have his table, I didn't bring any cups (he had never used a straw yet) and most importantly - his eating habits are still unappealing because of his burns pulling his lips down. He can't even close his mouth while chewing yet. BUT - we did it anyway. I tried to find a quiet corner so that not everyone could watch us and we found a new use for his skateboard and that's a makeshift table, lol. And suprisingly enough - he handled the straw really well and I cut his pizza into very small bites so that it wasn't so messy for him.'s a pic:

I wish y'all could have heard the sigh of contentment when he took his first bite of that pizza. It was like coming home, apparently, lol. (notice that new skateboard upside down on his lap, lol)

I am also happy to report that barely anybody stared at us today. Even with all the staples in his head. That was a nice treat!

So it was a really awesome day! Breezy and I sat and scrapbooked tonight and just relaxed and had a good time and Kevin made HUGE strides today toward going home. He definitely has to be able to handle being out in the public and he will need to be as self sufficient as he can and it looks like he will be, for the most part anyway. Who knows...maybe completely someday.

I am just so proud of him - and Breezy too! Both my kids have had to surpass major mountains in the last eight months.

Saturday, January 17, 2009

Day 230 - Jan 16, 2009

We had another good day today. We went for our first ride in the mini van and had our first experience out in the real world since the surgery. We went to the video store and spent a good hour just looking at all of the movies (where we pretty much decided that Kevin has seen EVERYTHING!) and then we went and picked up chinese for dinner. I was so happy that there was no stress at all and we really had a good time.

There really isn't a whole lot to write tonight so I am just going to throw some pictures up and call it a day.

Oh, but I did forget to tell everyone that my dear son tried to get out of bed today on his own. I had intended to eliminate the sitters pretty soon, but I guess that's not happening, lol.

Anyway, here are a few pics:

The first is of the top of Kevin's head.

This one is a head on of Kevin. Normally, the side of his head would be extremely sunken in, but notice the bulge of fluid buildup.

This one is of Kevin with my niece, Chrissy:

And here's one of my baby gettin' some lovin from him mom and his sister, lol. And just so you know - he made us do this for the camera. He is just such a ham...

Thursday, January 15, 2009

Day 229 - Jan 15, 2009

Today was another good day. Kevin's appetite has returned full force and he ended up eating dinner 4 times in 3 hours. We did go down to the house for a few hours today too and it was really nice.

He did all of his therapies again and is just popping out with more and more words. He is also sitting on the end of the bed (or the edge of his chair) for minutes at a time and we are working on his balance while sitting there.

We also have him stand to transfer from bed to chair every time and I try so hard to get him to stand still for a few minutes, but he always wants to move. Take a step or two - just move. He never could stand still, lol.

And he is becoming accustomed to what he looks like, but I must say he isn't seeing the 'real' thing. His head will be extremely sunken on the left side (until we can have plastics step in and fix it), but because he has CSF built up over the flap, it almost looks normal. This is what he believes he looks like and I am going to let him believe that. I was happy to see him remove his head bandage tonight to show my sister while we were Skyping though.

We have also seen a huge increase in how much he is using his right leg now. He is even able to pull it up to put his own sneaker on and he now finds it funny to kick everyone in the butt with it when they turn around. He can definitely take a step with it, but when it comes time to put weight on it to take a step with his left leg, he does drop a few inches. It's going to take time and lots of practice to make it strong again.

We also had a visit from the attending neurosurgeon (not the young resident) this afternoon. I went in this morning and told my doctor that I was going to be calling my congressman today if the resident showed up again. Lucky for all of us the top dog came in. We are going to give it until Monday to see what happens with the CSF and if it continues to go down, we will reprogram the valve again to a lesser drainage rate. At this point I don't believe we will have another surgery, but that could change in the blink of an eye.

I think that's about it for tonight. I did take some pictures today, but frankly - I am just too lazy to download them tonight. It is now 1am and Kevin just fell asleep a few minutes ago. I want to do the same so maybe tomorrow night...

Before I forget though...Petra - are you ok? You mentioned needing extensive treatments for you health and I am just hoping you are not too sick? It's none of my business so if you don't want to answer - you don't have to...

Day 228 - Jan 14, 2009

Today was mostly a good day. Kevin is becoming more aware of everything - it's almost like he is waking up. Today we were joking about his muscles and I said something about how most people lose theirs when they've been in the hospital so long and that he's lucky that after 8 months his are still quite soldier like. He was flabbergasted. His head whipped around and his eyes bugged out. When I reconfirmed that he had been in for almost 8 months, he tried to remember it, must not have been able to and started crying. He then started trying to find out as much as he could. I told him all about being in ICU Burns for 3 months and what he was like when we got here and then he asked who all came to visit and he even kept pointing at me and it took me a while to realize that he wanted to know how long I had been here and about my job and my apartment. It was a little bit scary for a few minutes, but then he became okay with everything.

He also is really trying to talk. Matter of fact, I handed him his wallet tonight and he responded "oh, thanks" without having to think about it. We are finding some of his words are becoming automatic and that can only mean good things.

All in all it really was a good day. He did 'shut down' for a little bit though. I think because he hasn't been sleeping very well lately. He only got about 4 hours of sleep last night and I think he was just tired today. We will see what tomorrow brings.

I guess I forgot to mention that Breezy is home now. She came back on Sunday (in the midst of all the turmoil). It sure is nice to have her back! And I am quite sure she was happy to leave the foot of snow that they got the day before, lol. She actually went in to be with Kev all day while I got down to business on the house and the mortgage and did all kinds of paperwork and also cooked a nice dinner for all of us. She brought Kevin down to the house this evening and we all ate and then he and I went back to the hospital. Breeze and I are going to try to take turns doing this so that we are getting a break. It should be easier now that he is more aware.

And before I go, I do just want to let everyone know that I am fine with what everybody did to help us out over the weekend. I do appreciate all of the advice and have filed the bulk of it to be used in the future. And I honestly do know that y'all just care about us and it's a nice feeling to have everyone jump right in to help. It's almost like having an extended family.

I also want to point out that if anyone asked any questions - please ask them again. I have so much email that is uncontrollable and I don't have time to sift through the advice for the questions. Please, please just ask again.

Tuesday, January 13, 2009

Day 227 - Jan 13, 2009

Today I am not going to focus on the negatives. I will say that the young doc did come in today, but I have already taken steps to have him removed from our case.

I am, however, going to focus on what an awesome day Kevin has had. First, it appears that the shunt may be working. We did not have surgery and we are going to check the fluid buildup tomorrow before deciding on surgery for Thursday.

Kevin also was like a new person today - or should I say the Kevin of old. He was wide awake and alert all day. He did all of his therapies and laughed and carried on with everyone. He actively moved his leg and arm around repeatedly and grinned each time he did it. He asked for a drink of water instead of gatorade (all night too) - something he has not done since he was able to drink. I didn't even think he remembered there were other drinks out there, lol. He also has been trying to talk and say all kinds of new words. He pretty much was trying to repeat everything that everyone said today. He also - out of the blue - said "I love you" in a nice fluid tone - not forcing every word to come out.

He also woke up this morning and asked the nurse to put him in the shower chair (something he absolutely hates) and give him a shower. He also asked to get in his chair this afternoon and go to the house for dinner. He ate a huge plate of lasagna and half a loaf of french bread and then we watched the Spiderman movie that was sent to him for Christmas.

And I don't know if I ever mentioned that Kevin would mentally 'shut down' when too much was going on around him, but I can say that he did not do that even once today. Not once! I can't begin to tell you how often he would do that throughout the day. There is even a sign on his door that no more than two people can visit at a time because he couldn't handle it. But the more people that were in his room today - the more he showed off!

It was really an awesome day - and even Kevin realizes it!!

Monday, January 12, 2009

Day 226 - Jan 12, 2009

Oh boy. I sure opened a can of worms, didn't I?

First (before moving on to Kevin) I do want to ask that nobody take any action on our behalf. I do realize that some of you already have, and I know that everyone means well, but at this point I need to get through the days the best I can and I can't have the media or a bunch of politicians stepping in and making things even worse. And believe me - they will, no matter how good intentioned their help is. Y'all need to understand that it was my first thought to call the papers and such too, but you have to think about how the hospital is going to react. Yes, I know that Kevin will get the care he needs, but then we will be virtual pariahs and nobody will want to give us a hand for fear of the repercussions. To my way of thinking - the media is a last resort and I have yet to get to that. (but believe me when I say that when I reach that place - I won't hesitate to call EVERYONE!!)

I do honestly believe (after today) that we can work out a plan of action - it just takes talking to the right staff member and using the right words. I also had some of the staff members on my side because they were seeing the things that were going on - that helped immensely. Anyway, I did this today and things are already rolling.

The head doctor of the ward is in DC tonight and he has already discussed Kevin's case with a few neurosurgeons there. He called me on his cell from DC to tell me this. I also sat down with the head neurosurgeon here and had an hour long discussion about our options. He also came in, with the company rep for the shunt, and he, himself, was able to reprogram it on the first try.

He also believes that the reprogramming isn't going to work and Kevin may be going back in for surgery in the morning. To be honest - if that happens - we will discuss it tomorrow instead of tonight. In the meantime, I have asked for this doctor to step in and to keep the young resident away. I don't feel he is capable of handling the situation and we need a more seasoned doctor. He told me that he can't do that, but we shall see about that - this is where one of those 'guns' come out. If I don't have him as our doc by morning, I will be making phone calls.

And I know some of you have talked about legal representation but I was under the impression that active duty soldiers do not have any legal options? My son is still active duty so he doesn't fall under veteran status yet and he is still considered government property. Does anyone know if this is true?

As for us moving to another hospital - there is no time for that. Any neurosurgeons would have to come here and step in. This is one of the reasons I feel trapped. Kevin probably could fly (it would be via the Army - not commercial) but we would have to be leaving in the morning. It's unfortunate that our Fed Recovery Coordinator is at a conference too, so she has not been able to help today.

But anyway, let's give it through tomorrow and see what happens. Maybe his head will shrink back down because the shunt will start working and none of this will matter. I will say that the fluid draining from his ear has almost stopped and that's a great sign.

Ok, I am so exhausted that I keep closing my eyes while thinking of what to say so I need to get to bed. I sure hope everyone understands where I am coming from...

Sunday, January 11, 2009

Day 225 - Jan 11, 2009

I wish I could say that things are getting better, but they really aren't. I feel so trapped. Trapped because I don't feel safe here and yet we really don't have anywhere else that we can go. There are only 4 polytrauma centers in the US (and most of the people here have come from one of those four because they were so bad). Yes, I know we can go to the private sector, but Kevin shouldn't be in the cold weather (and this has been verified by many docs since first mentioned to me) and most of the best neuro hospitals are in the northeast. Too cold.

I do plan to call two renowned neurosurgeons tomorrow morning and see if anyone is willing to come here and help us out. That's the only thing I know to do for sure at this point.

To be honest, I am not really up to writing much tonight because there is just so much swirling around in my head. I got into a huge fight with our surgeon today and on top of that, I found out that Kevin really isn't stable enough to be back in his room - yet ICU won't take him and oddly enough - the neurosurgery team refused to be his primary team because they don't feel he is sick enough. Pretty funny considering he is leaking CSF and blood from his ear (which btw, leaves an opening for meningitis), his head is swelled again, he needed blood and he has a small hemorrhage in his brain from surgery. Not sick at all, right?

Oh, and did I mention that nobody actually did call the company rep for the shunt that nobody knows how to work? Yeah. They decided to just keep trying to figure it out all weekend, taking numerous x-rays in the hopes that the light will turn on and then if it doesn't - we'll just call tomorrow. Assuming they can get someone, right? Hmmm. It's now been 3 days - tomorrow makes 4 - since they knew they couldn't figure out how to work it. But that's ok. He's not really sick.

I feel so much despair. And so does Kevin. He still cries every time he touches his head. He also cries every time someone comes in to do more tests or to draw blood or to take more x-rays or any of the numerous new things that are necessary. And to be frank, it's getting harder and harder for me to fake like things are going to be all right when I am just not so sure they will be...

Saturday, January 10, 2009

Day 224 - Jan 10, 2009

What a mess. Y'all can't imagine the feelings that both Kevin and I are feeling. Today has really been a terrible day.

First, it turns out that the surgery did not correct the fluid problem - at least not at this shunts flow rate. When I went in this morning, Kevin's head was quite huge again - ON TOP OF THE FLAP!! I was under the impression that no liquid would be able to escape and the flap would keep it all inside forcing the shunt to work. Obviously that's not the case. His whole face is even swollen with fluid.

Second, although the shunt is programmable - NO ONE HERE KNOWS HOW TO WORK THE FLIPPING THING!!!! Literally! The doc and a company representative tried twice today to reprogram it to a larger flow rate and it won't work. I overheard them saying that they had texted a supervisory rep and they may have to have that person fly here to show them how to work it. In the meantime, Kevin has had multiple x-rays of the shunt in the hopes that they can figure it out by looking at the films.

The docs also released us to go back upstairs to our normal room and I am so glad because...NO ONE IN ICU NOTICED THAT KEVIN NEEDED BLOOD!!! When we got back upstairs, our normal nurse was looking at his labs and called the doc immediately. The transfusion is currently on it's second unit of blood. I kept questioning all night last night why his vitals were up, but I was ignored. It turns out they were an important sign for low hemoglobin. I wish I had talked louder last night.

Needless to say, Kevin has been crying all day. He realizes that the surgery didn't fix the problems and has only created new ones. I have tried to pull his spirits up, but it's hard to when I feel the same way. He did have me lay in bed with him this afternoon and we just held each other and cried for a long time. But then, we stopped and I told him that yes, everything pretty much sucks right now, but that there is a reason he is still alive after everything he has been through. I told him that we are going to fight all these issues and then kick butt to go the hell home. He agreed, but we will just have to see if things start working out or not. If they don't, I really worry that he will give up. I have felt him wanting to all day, even after our 'talk'.

This is just so damn hard. For both of us...

Friday, January 9, 2009

Day 223 - Jan 9, 2009

Gosh, I don't even know where to start. Yes - Kevin's surgery went well - for all intents and purposes. He made it through and we had no problems with him handling the trauma.

However, we had been led to believe that Kevin's head would be symmetrical with the other side and I can't stress enough that that did not happen. He is so incredibly disfigured that we are both still reeling from his appearance.

I was lucky, because I had about 30 seconds of seeing what his head looked like before he saw me coming so I had enough time to get over the shock (just barely) and I was able to mask my thoughts. I was also lucky in that I was only allowed a minute or two with him at that point while they wheeled him into ICU and set him up. This gave me the much needed time to recoil in shock and pretty much lose it.

They called me in and I dried my eyes and plastered a smile on and when I got in there Kevin just kept rubbing the area and looking at me like 'what have they done to me?'. I acted like it was no big deal, but I could clearly see that he was just as upset as I was (and he is going by touch - he has yet to SEE it). So I did end up sitting down with him and telling him that yes, it didn't turn out like we thought it would, but that his hair would grow over it and hide most of it.

But I did cry. I cried a lot last night. And Kevin pulled into himself, which is what he does when he is hurting.

You see, not only is his head sunken in about an inch, creating a large indentation, but one ear is almost an inch below the other and it sticks way out. These are things that should have been fixed then during surgery and I felt like we pulled in to a butcher shop and told them to do whatever. I am so seriously disappointed. One, in the doctors' performances and two, in my decision to have the surgery here. I made a HUGE mistake.

So today I did send a pic of Kevin to our Federal Recovery Coordinator, Mary. She will be 'with us' for the rest of our lives to help us along with Kevin's needs (and she is so wonderful!!). So she took the pic and showed the neurosurgeons at BAMC and left me a VM that states that they all agree that they will not allow Kevin to look like this forever. We are going to call in plastic surgeons and see what kind of repair work can be done.

This was the first moment of relief I have felt since I first set eyes on my son yesterday evening.

And I do want to add that I know the important thing is that Kevin came through the surgery just fine, but it still is a shock to see something that should have been fixed look worse than when it went in for the job.

And now I do need to head back up to the hospital. We are still in ICU because Kev does have some fluid on his brain. They are hoping it is just from the surgery and not the continuation of our fluid problem. We will know tomorrow, I guess...

Thursday, January 8, 2009

Quick Surgical Update

Kevin is getting his head all closed up as I type. I was told that the surgery went well. It took about 3 1/2 hours and they did the shunt first and placed the flap next. His flap didn't quite fit right, but they shaved it until it was correct.

Gotta make some phone calls. Keep those fingers crossed that this fixes the fluid issue...

Wednesday, January 7, 2009

Day 221 - Jan 7, 2009

Kevin was pretty quiet today. I think he is a little nervous about the surgery and I know he is very upset about having to go down to ICU. I don't remember how much I told you guys from when we were down there the last time, but at one point he was going to the bathroom and the nurse came in to give him meds. Because he was busy, he held up his hand telling her to give him a few minutes. She went out and told the doc that he wasn't ready and the docs went nuts and started making phone calls. Remember I said they were all mad because he didn't belong there? Well, at that moment they were screaming into the phone to someone that Kevin is not an ICU patient - he is a psychiatric patient because he is refusing his meds! They were so loud that Breezy and Kevin heard him and I can't imagine how it feels to hear someone talking about you and saying that you belong in the psych ward.

That whole ICU experience was horrible and when I told Kev we would be down there for the weekend he was so mad he wouldn't even talk to me or Tracy. He was fuming! I did my best to make him feel better about it, but no go.

But I think he is excited to have his head fixed too. He rubbed it each time someone came in to the room today as if to say 'see it now cause it's gone tomorrow'. I am anxious to see what he looks like too. It's been seven months of seeing the disfigurement and it's become natural to us.

And that pretty much sums up our day. He wasn't well enough to do much today either so we stayed at the hospital all day and just lounged. So I guess we just need to keep everything crossed for tomorrow and somehow I will let y'all know what happens. Look at the comments as that may be how it goes for a while anyway.

And if I may - please keep Andrew's Aunt Jodi in your thoughts too. She is having minor surgery tomorrow as well and she needs extra good health vibes sent her way also...Good Luck, Jodi!!!

Tuesday, January 6, 2009

Day 220 - Jan 6, 2009

Ronnie left today. He and Kevin had a great time together and I could really tell how much Kev responded to the 'guy' talk. Ronnie went in this morning and spent the whole day up there and I stayed away to give them time to themselves and I guess Kevin had a truly great day. The nurse couldn't believe how well he did with all of his therapies and everything.

And I got a chuckle out of his physical therapist asking him if he would walk today and he held up two of his fingers as if to say he won't attempt it until his surgery is done in two days. I told him that he wasn't going to be able to just get up the next day and walk and he basically told me that he could and would. Knowing him - he probably will.

So not much else happened. And before I end, someone asked if I could post a quick message on the day of Kevin's surgery to let y'all know what happened and I will do it as quickly as I can. It means me leaving the hospital so I can't guarantee it. I will just have to see how things go.

And for a Breezy update - she is having a good time being home, but she did get sick. I guess she just can't handle those cold winters anymore, lol. Love ya, Breeze!! And we sure miss you!!

Monday, January 5, 2009

Day 219 - Jan 5, 2009

My mom and dad left today, but Ronnie and Tracy are still here. We had a kinda lazy day truthfully. Ronnie stayed with Kevin all afternoon and I took a nap, which was super wonderful. And even Kev didn't get dressed or anything until like 5pm today. At that time we just brought him down for dinner and then we watched a little bit of TV and took him back up to the hospital at 9pm.

I am getting even more nervous the closer we get to Thursday. I am just not sure how this is supposed to work. From what I am gathering (and nobody has explained the surgery yet - even though I have been asking for two months now) they are planning to change the shunt first and drain all the excess fluid off and then put the flap back. I don't know why, but it just scares me that this isn't really a 'fix' for the issue, it's just a 'we aren't really sure what to do so let's try this' situation. I guess I am most scared that it won't work and I am just not sure what would be the next step. I mean, do they teach me how to drain his head every day or what? And before I forget - someone did ask if it has become less painful and yes, it has. He rarely cries now and will often just hum the "Subway, eat fresh" song, lol.

I am going to just quickly answer a few questions now:

Kathy - you asked if Kevin has therapy daily and he has speech and OT M-F and PT every day of the week.

Petra - I am really sorry that happened to your M-I-L. I do agree that arrogance in a doctor is often dangerous. The doc we had this weekend made a comment to me that I had to work really hard to not say something back to him. He was tapping Kev and the fluid was moving pretty quickly and we always pull off all that we can while it's flowing. He told me he was going to stop and I told him to keep going while he could and he said "I do have other patients to see too. You aren't my only one, ya know". I couldn't believe it. So I guess it's normal to do a half job on patients if you can't fit everyone into your schedule. Pretty sad, huh? I wonder if he would have put the flap back and not bothered to staple his head shut due to time constraints? (sarcasm)

Someone asked about their air miles and I have never used either Fisher House or Make-a-Wish. I am not sure how that would work so let me know if you can donate to our family as help is no longer available for my family to come down. The one organization that has helped us out in the past is Operation First Response. For anyone else, I will check into donating to them. Even if it's not for our family - I am sure they will find a use for them.

Ok, off to bed for me...

Sunday, January 4, 2009

Day 218 - Jan 4, 2009

I am going to skip on writing tonight because I am just exhausted. I also have to have my parents at the airport very early tomorrow morning so it will be another long day tomorrow.

We didn't really do anything today anyway, we just watched a lot of movies. We had a different neurosurgeon over the weekend and he didn't like to take the time to tap him enough every day. This meant that Kev was more lethargic over the weekend. But we made it through and tomorrow is a new day...

Saturday, January 3, 2009

Day 217 - Jan 3, 2009

We had another really good day today. We did try to take Kevin to the movies, but it didn't work out. We did pay and get our popcorn and sour gummi worms and we even got situated in the handicap area. But it was less than 2 minutes before he started to get ill. He wanted to move to the last row because we were just too close to the screen, but obviously that's not possible in a stadium style seating theater. So he and I left and we had everyone else stay and watch the movie and we just came back later to pick them up.

After that we went to the house to show my parents and Ronnie. Tracy had already seen it the first time around. The realtor met us there so we all got to go in and I am so happy that Kevin still loves it. Still keeping our fingers crossed on this one.

Other than that - it was just an all around busy day. We are tapping his head twice a day now; once in the morning and once at night and that takes quite a few minutes each time (nearly an hour - sometimes more). And with all the company - we are just BUSY!

And on that note - I am heading to bed.

Friday, January 2, 2009

Day 216 - Jan 2, 2009

We had another great day today. One of Kev's best friends, Ronnie, came to visit for the next four days and Kevin was really excited to see him. He was in a great mood again all day and I can only hope that this attitude keeps going.

We need it to because I was told today that if Kevin would have kept going like he had been a month or more ago he would already be walking. I sure have seen improvements in his standing up and I believe it's because he has to to get out bed now (one of the reasons I went to them the other day and told them not to fix the lift). So now we need to concentrate on walking and just the ability to stand up tall. I believe we will see an improvement on this once his head is fixed and he doesn't have all that extra weight on one side of his head.

And speaking of that - Kev's surgery is scheduled for Thursday - first case. I am guessing the flap arrived today and now we need to sterilize it. I am also guessing that there wasn't an operating room open until Thursday or we would probably go sooner. Kevin seems a little relieved to be getting this fixed, as I'm sure he is. I think we will really see a difference in his self-esteem and they say that mostly you see a difference in how well/fast they rehabilitate afterward.

Which also reminds me, a few of you have asked about what will happen if this surgery doesn't fix the problem. I have to admit that I have been concerned myself. They tell me that, for the most part, it usually fixes all problems because it's the norm to have your 'skull' there. However, it is not a definite. They are discussing changing the shunt to a low compliance one (meaning it will take less pressure on the brain to make it flow) while having him already under anesthesia (the shunt is on the opposite side of his head though so he will have incisions then on both sides). I did ask what they will do if this doesn't fix it and I am getting no answers. I am guessing that they just don't know yet.

One thing that we did discuss tonight was the fact that Kevin has tiny air bubbles in his CSF. To be honest - I never gave it a thought that there shouldn't be air bubbles around his brain. This is something that I am going to have to research I guess because the neurosurgeons don't have a clue why he has them.

Well, I need to get to bed. Tracy is also coming tomorrow (talk about a full house!) and I need to run to the airport in the morning.

Day 215 - Jan 1, 2009

Yesterday was not the normal day. I have been watching Kevin's determination and attitude decline over the last couple of weeks and I really didn't know what to do. I have tried cajoling, bribing, threatening, you name it. Each and every day has been a struggle to get him to do anything. There has basically been no therapy at all lately because he won't do anything. He has been declining meds, refusing showers and baths and it takes hours to get him out of bed and some days he just won't get out no matter what we do.

So yesterday, I had had enough. I had just came back from Subway and Kevin had eaten and when the nurses came in - he wouldn't take a shower. He was fine with everything just a minute before (when he wanted to do something), but all of a sudden he was not interested. Well, I snapped. I yelled at him and told him that enough was enough. I was not sticking around (yeah right) if he wasn't going to work at getting better. I asked him if he wanted to stay in the hospital forever and he said "yes". I told him then fine - you can do it alone because I'm not sticking around for that. I then told him that he was going to get a taste of what it's like to be alone so that he could decide what he wanted and I grabbed my purse, ushered my parents out the door, kissed him goodbye and told him I would see him tomorrow. This was at 12:30 yesterday afternoon.

You have no idea how hard it was to walk out and leave him in that hospital by himself. And all day long I had such a heavy heart because I didn't know if he was like that because of the brain damage or because he was just giving up like I thought. But I did it. I stayed away all day because this was my last resort to get him out of this funk I believe he is in.

Now I will admit two things. One - I did call so many times it was pathetic. And two - I actually did cave and go back late last night, but he was already sleeping. I left him snoring and returned home to worry the night away. I just second guessed myself all night long and felt like a horrible parent for doing what I did.

BUT, I am so happy to report that Kevin was a changed man today. After we discussed things this morning, we agreed to work hard together so that we could go home. He then took a shower using the chair instead of the shower bed (a first) and he joked and carried on all day. We were able to leave the lights on for the most part and he watched tv quite a bit. We also got out of bed - not once - but twice today and we went for a ride to look at the house again and then we had a nice dinner. It was an amazing transformation!!

He also stood up with complete ease 4 times today and just stood there for a while while we were transferring him to and from bed. I actually think he can do it himself for the most part and when I told him that I thought I was more in the way and that he could do it better himself, he nodded his head. I had to explain to him that we can't risk him falling yet. Once his flap is back in, we can though. He chuckled over that, I guess cause it sounds like I said it's ok for him to drop to the floor once his head is fixed.

Oh well. It sure was a wonderful day with my wonderful son!

And speaking of a wonderful day - I will say that other than my heavy heart, we did have a great day out yesterday. We went to St Pete to see Chrissy (my niece) and we ended up going on a dolphin watching cruise. We then went to Treasure Island and drove up the coast to Clearwater. It was a sunny 77 degrees and we couldn't have picked a better day. And it was nice because neither of my parents have ever went on any kind of cruise like that and we were all so excited to see the dolphins. Matter of fact - here are a few pics:

And to end, here are some pics of the new van (and look closely at the house across the street in the 2nd picture - hint, hint - hehe):