Day 793 - Jul 31, 2010

We didn't do a whole lot today. We did make it for a few groceries as Breezy and Chris are coming over for dinner tomorrow night and Chris requested stuffed chicken.

So we did shoot a couple of videos tonight though. Here is the first of Kevin making lemonade:



And this one is of Kevin and I just talking. He's a little tired and you can see it by the way he can't concentrate.



And I think I am going to go scrap for a while. It's just been so long and because it's still early - I want to give it a shot!

Day 792 - Jul 30, 2010

We didn't do too much today. Kevin did have another dentist appointment and he handled it really well again today. The dentist feels we will only need to have one more appointment, although that's not set in stone. I am hoping we can get the last appt in over the next two weeks, but our schedule is almost completely full so I'm not sure it's going to work.

After discussing it with the dentist, we don't want to do any work in his mouth the week before the surgery - just to play it safe - and that really does only leave us two weeks.

So something interesting did happen last night. I mentioned that Kevin was mad at me and stomped to his room, well...he didn't call me for at least 2 hours. That's not the important part though - when he did call me and I went into his room - the words that came out of his mouth were 'I'm sorry'. It made me all teary to hear him apologizing - mainly because he doesn't usually remember things like that. Honestly, I would have never thought he would recall something 2 hours later and then for him to realize that he acted like a brat was pretty awesome too.

Ahhh...my baby is growing up. Again.

Day 791 - Jul 29. 2010

We had to go to the hospital today and have more fluid put in Kev's expander. The PA said that he doesn't feel we should put anymore fluid in and he suggested we see our neurosurgeon to make sure it's enough. I have to call Mary tomorrow about getting that facilitated, and it really does appear that everything is on target for the surgery. Matter of fact, I think the PA said the plate is already in? Not sure about that, but that would be fabulous if it is!

So in roughly 3 weeks or so - Kevin will be back on track for recovery! His plate will be back in and his therapies have already resumed so it's looking good. Really good!

And I think I am going to sign off and watch some tv. Kevin's mad at me because I told him to clean up after himself and he went stomping to his room and slammed the door. Since he isn't 'speaking' to me, now would be a good time to catch up on some of my shows, lol.

Day 790 - Jul 28, 2010

Yahoo!! Coincidentally, the tech guy came this afternoon with all of the remotes and things to help Kevin out!! I can't begin to tell you how awesome it is for both of us that he can now turn on/off his own lights and he can also adjust the speed on his fan!

Tonight, Kevin has only called me maybe 30 or 40 times!!! Double yahoo!!!!

Oh - and hilariously - they included a 'bell' of sorts and Kevin can hit a button on his remote and 'ring' for me to come running. We are both getting a kick out of it tonight, but I would guess that in about a week I am going to want to be throwing that electronic bell right down the garbage chute, lol.

And we did go for Kev's evaluation for therapy today. He did ok - not great - but ok. Truthfully, I think he expected to go in and and get down to business and he was mad that the therapist needed to talk to him and see what he could and couldn't do. He just has no tolerance for these things. I don't know if it's because his 'shortcomings' are brought out in the light for all to see or what.

But anyway, we start actual PT on Monday and we will also have the OT eval on that day as well.

Our weeks are now filled to the brim. Back to normal, I guess. And I'm not complaining as it's definitely better than him lying in bed all day long!

Day 789 - Jul 27, 2010

We really had an awesome day today!! First, Kevin, Lea and I went to the movies to see The Sorcerer's Apprentice. Kevin did really well at the movies and I think Lea had a good time too! Afterward, we went to dinner. We had went to the late movie so it was going on 7pm when we got out and we all opted to eat out as it would have been too late by the time I got home and cooked something. So we called Breezy and had her meet us at the restaurant and the four of us just had a nice, relaxing meal. (Chris was still at work so he couldn't come).

Miraculously, Kevin managed to be up and out the whole time. Yes, he was medicated, but still...he was out!

And we have some new developments:

First, we go to Kevin's first therapy appt tomorrow afternoon!! Yay, Mary! She faxed everything first thing this morning and I set up the appointment directly afterward.

Second, the iPad is being shipped to us tomorrow from Operation American Pride! I can't thank Mike and his wife enough for the doors that this will open! Karen - can your friend give you/us some guidance on the software she uses? Mike (the head of OAP) told me that the app is only $2! Is that what your friend has? Oh and Heather - thanks for the list of apps you sent too. I scoped it out a bit this evening, but need to delve further! Now hopefully, I can find that email about the little corner thingies so that it won't break...does anyone remember about it? I want to get those ordered asap!

Third, a new mattress has been ordered for Kevin and I can only hope it gets approved quickly. I am told that there is a new approval process though and it has to go to Washington DC. I worry that it will get lost up there on someone's desk, but I am going to keep my fingers crossed that it won't. I went and bought him one of those mattress toppers in the interim, but that just didn't work out. Great idea though.

And last, all the remotes and things for his fan and lights are on the purchasing agent's desk waiting for approval. Once it's approved, I feel confident that the tech guy will be out and will get everything installed. This too, will enable Kevin to be more independent. It will also make a world of difference to my life as I won't have to get up and down a billion times a night to change his fan speeds and turn the lights on and off.

Oh and I read an article recently on different types of lip balms and it said that Chap Stick will dry your lips even more and that Burt's Bees is the best and wow! - is that true! Kevin goes through many tubes of chap stick a month and last night I had him buy BB's instead and his lips are not even chapped today - 1 day later! For the first time since his injury! Amazing!!

Oh! And before I forget (because I have been meaning to do this for weeks now)- thank you everyone for all the birthday cards and gifts for the three of us! Kevin just loves opening things (he really is like a kid in a lot of ways yet) and both Breezy and I appreciate it too!

Ok, I want to curl up with a book tonight so I will catch y'all tomorrow!

Day 788 - Jul 26, 2010

Today I left Kevin with Johnny and I went scouting therapy facilities near our house so that we can get Kevin back on schedule.

The first one I went to was very small and private. Too small. There were two people in the gym and because the room was so tiny, every word anyone said was bouncing off the walls. I am pretty sure Kevin wouldn't be able to handle it long if anyone else was there at the same time.

The second one was really large. Huge really. At first I thought it was too big and too busy, but I quickly realized that the largeness of the gym made it quiet. There were probably 15 or so people on the equipment and maybe 6 or so employees and although people were talking, you couldn't really hear anything. Unfortunately, while talking to the therapist that was giving me the tour, I got the impression that they didn't feel they could fulfill Kevin's needs. They did, however, send me to a new place right across the alley that just opened an outpatient clinic.

And this was the third place I visited. Up until recently they were an in-patient rehabilitation facility that dealt with mainly Parkinson's Disease. They just opened an outpatient clinic that handles all aspects of neurological therapies. YAHOO!!! Could we ask for anything better?

I talked to the therapist (whom I just LOVED!!) for close to a half hour and she told me all the therapies are one on one and although it's a small gym without all the bells and whistles, I still think it's the right fit for the next few months. As I mentioned, they deal solely with neuro situations so they know that it's more than just building endurance and strength - it's mostly about retraining the brain!

I left that place just so excited! I called Mary (W-FRC) right away and she will be faxing the referral first thing tomorrow (it was after hours when I called her and she was already home). As long as they take Kevin's insurance - it's a done deal!!!

So by tomorrow night...we might have therapy appointments!! How great will that be?!!!

Day 787 - Jul 25, 2010

We had a pretty lazy day today. Breezy was moving into her new apartment and I had hoped to be able to go and help out, but Kevin wasn't feeling well enough for us to go so we just stayed in all day.

We stayed in all day yesterday too, but I did manage to get Kevin out of his room long enough for him to watch a movie with me. Unfortunately, that is what seemed to cause all of his pain - him just sitting up as opposed to him lying down in bed.

Lately I have been watching movies in his room, but I have been really working on getting him out of there. Sometimes he handles it really well. Sometimes he sure doesn't.

Yesterday he didn't. He was in a pretty rough mood all night long. I didn't even get to bed until roughly 9 this morning and he was still wide awake. He did let me sleep for almost 2 hours though and I was so thankful for that because he really was agitated.

And he is still raring to go right now and I am hoping to be able to go to bed rather soon. Not sure if he'll play along, but here's hoping he will...

Day 786 - Jul 24, 2010

I am going to skip tonight. Kevin is having a really rough night and it would take me forever to type anything up. Sorry!

Day 785 - Jul 23, 2010

Thanks everyone for all the comments about the hope and the optimism that those that have been there all along had for Kevin. I can't say that I always felt the same, that's for sure.

Today we went to the dentist. I just can't reiterate enough how wonderful this guy is with Kevin. They really get along great. Matter of fact, the doctor walked us out to the car today and I snapped a pic of them hamming it up:



He did start to drill one of the really bad cavities and it is too deep for it to be filled normally. We don't think Kevin can sit there long enough to handle a root canal, so the dentist filled it with some medication that can sometimes cure the problem. He filled it temporarily and we will recheck it again in a few months to see if we need to take action or if maybe it did heal itself.

I'm not sure what's going on with me, but by the time we got home from the dentist (it is across town and it was rush hour on our way home) I was just beat. I sat down on the couch and ended up falling asleep for quite some time.

I guess I should send out a reality check and explain that it is REALLY difficult going anywhere with Kevin. It takes him a good hour and a half/two hours to get ready to go because he needs to lie down every now and again and rest. He also has a routine and we CANNOT sway from it. He will not get dressed out of order - underwear, jeans, socks, shirt, shoes, deodorant and teeth. If his jeans are in the dryer when I jump in the shower - he just sits there in his underguchies and screams my name until I get out and get his jeans. I keep trying to explain that he can put on his shirt without it affecting anything, but he just won't do it.

So once we are heading out the door, it will take us close to 20 minutes to get down to the garage and in the car and ready to pull out. Most of the time, when we arrive somewhere, I get out, get his wheelchair out of the car and put together, and he just sits there - sometimes for 20 minutes or more until he feels he is ready to get out of the car. I'm really not sure what that is all about - I assume it's desensitizing after the car ride, but I'm not altogether sure. I know sometimes it's a pain issue too, but whatever it is - he almost always sits there for a long time.

It's kinda hard for me because I am one of those 'let's hurry up and git 'er done' kind of people - but phooey on me. I just stand there in the hundred degree heat next to his car door and wait for the moment he is going to open the door and get in his chair.

Once he's out of the car - I then get to grab all the crap that he accumulates any time we go somewhere. I usually have bags of groceries, his sunglasses (we can't dare leave those in the car!), he always has at least 1 drink, his hat, his cane and my purse - minimum. I honestly feel like a pack mule every time we step out the door.

So anyway, going anywhere is just hard on both of us. It's been harder since the plate was removed so hopefully things get easier once it's back in.

And now I have some good news!! Operation American Pride is going to purchase an iPad for Kevin!!!! The VA here - in conjunction with the VA in Tampa - was able to get some help from this wonderful organization. I am so excited! I will have to talk to someone with Speech Pathology and see if the app (or whatever) can be purchased by just anybody that will be able to talk for Kevin. I am just so interested to see the kind of changes this could bring to Kev. I can't wait for him to be able to go into Subway and say "I want a 6 inch BMT with provolone, toasted, with onions and lettuce and sweet onion sauce."

Now we just need to get him back to walking without his cane so that he can carry all the stuff he's going to order/buy. I always have to follow him because he only has the one arm and can't hold onto his cane and his junk too.

I feel like some good changes are on the way.

And now I really need to make hotel reservations for Moe and I. I believe we finally narrowed our destination down to Galveston. We really wanted to do South Padre Island, but I was told it's over a 5 hour drive and when you only have 2 days, it's just too much time in the car. Let's just hope I can redeem those hotel points...

Day 784 - Jul 22, 2010

I was thinking weird stuff today. I try not to do it, but sometimes it just happens.

So I was wondering...what do you think the doctors thought when Kevin was first brought in from the field? I have occasionally wondered if they thought there really was no hope for him. If they thought "Why bother? He's never gonna make it anyway."

I can say that the neurosurgeons here didn't believe he would ever wake up and that he would definitely never amount to anything, but it just makes you wonder - do surgeons HAVE to operate? Even if they don't feel it will help? Or do they get to make the choice?

I would say that it's people like Kevin that have to make these doctors feel good about their jobs. I know (especially in a war situation) that a lot of the outcomes aren't as good and I am just so thankful that they did the job - that they opened him up, dealt with all the broken bones, the internal bleeding, all of the burns and the fact that they had to cut out part of his brain.

But do you think they stood over the operating table though and said 'Well, we did the best we could so let's close him up and send him home to his family. I doubt he'll make it through the trip though".

Honestly, all of this is kinda morbid, I know...but sometimes I just can't help it. Sometimes I have to wonder what they thought. I know that I, myself, was ignorant to the realities. Truthfully, we weren't prepared for what had really happened - telling someone that their son has an open head wound can in no way prepare you for being told he had part of his brain cut out. But really - how could anyone say those words over the phone, right?

Ah well...just ignore me tonight. I honestly don't know why I think some of this stuff. I guess it's just because I do know what a miracle Kevin is and I am just so utterly thankful that the surgeons in both Afghanistan and at Ladstuhl (sp) really stepped up to the plate and did something that they probably thought wasn't going to make a darn bit of difference.

And I think tonight I just need to make a collective "Thank You" to all of the folks that helped on this journey; the doctors and surgeons, the nurses, the flight crews, the case managers and everyone else that I am just not naming, but that had a hand in keeping Kevin alive during the past 2 years!

A HUGE THANK YOU GOES OUT ACROSS THE LAND!!!!!!!!!!!!!

Day 783 - Jul 21, 2010

Today we went to the hospital for another expansion. Kevin always does really well with it and even the PA mentioned about how well he does. It's always so nice to go to the burn clinic (I mean...if you HAVE to go somewhere like that, lol) at BAMC because everyone is just so wonderful to Kevin.

After our appointment, we went to the burn ward and visited all of the nurses. Joel also had surgery today so we checked on him too. He came through it just fine. Did I mention that Joel was discharged for the first time in 2 1/2 years? Yes! They got an apartment here for the next 6 months or so and he is just ecstatic to be in a home environment.

So anyway, we are gearing up for the plate to be put back in his head. We are anticipating the surgery to take place the week of Aug 22 and everything appears (stressing that word) to be in order for it. The CT scan was done, so the new plate should be on order and our burn doc saw our neurosurgeon in the elevator today and he said all is going well.

Personally - I can't wait for this surgery to happen. And I can say with 150% surety that Kevin can't wait either!

Day 782 - Jul 20, 2010

I had to leave Kevin with Lea today as I had an orthodontist appointment. He did really well with her (from what I gathered) so I took the time to get a much needed haircut too.

Tonight though, Kevin is a little restless. I always wish I knew why he felt this way sometimes. He keeps calling me in his room and then he doesn't have anything to say or anything he needs. He's just frustrated and I assume he wishes he could just fall asleep. I sure wish he could too.

That's pretty much it today, so I am going to sign off and try to get some sleep too.

Day 781 - Jul 19, 2010

Today was a pretty good day. Johnny came and spent the afternoon with Kevin. I cooked dinner and Mary popped over with some paperwork so she ate with us and then Kevin and I played a few games of cards.

Another one of those days where there really isn't much to say.

Michelle Long - we really wanted to come to Riverfest so bad. Kevin asked me numerous times if we could go and I knew it just wasn't possible without the plate in his head. I seriously hope we can be there next year - maybe, just maybe - things will have settled down medically by then.

You also asked about Kevin sleeping through the night - no, it's not really happening. He does sleep some mornings, but even that is sporadic. He is doing better about calling me on the phone once I go to bed, however. Some nights, I just tell him I am going to sleep and I don't hear a peep. Some nights, he calls me 20 times or more. Most nights, he calls maybe 5 or 6 times. It still takes forever for me to be able to go to my room though. It's like a child where they stall and stall because they don't want to go to sleep.

I do try to be understanding about it and I will say he doesn't do it on purpose though. I know that Kevin can't think ahead so he won't realize he needs something until his eyes light on it or something pops in his head. It's just frustrating for me because sometimes I just can't keep my eyes open another minute and when I am calling it quits for the night - he is frantically trying to get all his ducks in a row. It's why I try to stay awake until he goes to sleep, but unfortunately - it has caught up to me and I am just too tired to do it every night anymore.

But, no matter what - he is doing more and more awesome every day. Cognitively he has made such great strides and he is really talking more and more. He's quite the miracle, my boy is...

Day 780 - Jul 18, 2010

There's not a whole lot to report tonight. We had a somewhat lazy day. I did have to run to the grocery store for a few things, but Kevin sat in the car while I ran in real quick. He does this sometimes if he just doesn't feel like fighting the crowds.

Other than that, we came home and Breezy came over for dinner. We all played some cards - it has been weeks since we have done that - and then Kevin went to his room.

Pretty boring, huh?

Day 779 - Jul 17, 2010

We had a much better day today. Kevin felt well enough to go out and about so we went to the mall and returned a few things that didn't fit him. We never try on things at the store as it's too difficult so we just guess and come home and hope it all fits.

Amazingly enough - we were at the mall for hours. It wasn't too busy and Kevin was just in the mood to browse, I guess. One thing he did buy was a pair of slippers. It's always so hard for him to walk barefooted as he really needs his brace, so now he can just put his brace in his slipper. Up until tonight he has always kept his sneakers on all day and night (until he knew he was down for the night). This will make such a difference.

And thanks to those that suggested yesterday's pain may have been due to the weather. I forgot about that being a factor sometimes and although we didn't have any storms at our home, it doesn't mean there weren't any in the area. I will try to remember this in the future.

And before I forget - Flee - you mentioned a video type monitor that would let me know if Kev was talking in his sleep or was really awake sometimes and I love that idea. I did mention it to the techno guy that was here recently to find things that might help Kevin along, but I don't know if he put it in the proposal for the VA or not. I hope so.

GrannieEv - thanks for the info for the google group. I need to check on how those work. I am assuming it's a newsgroup of sorts?

Anyway, it's off to my room as Kevin just might be down for the count!

Day 778 - Jul 16, 2010

Today was a very rough day. For some strange reason Kevin was in A LOT of pain today. I would say he asked for pain meds pretty much every two hours. We didn't even make it to the dentist. We got up and got all ready, got in the car, started driving and we were only down the road maybe a mile and I knew we weren't going to make it. Every bump was excruciating and there was no way we were going to be able to drive a half hour. So we turned around and went back home.

Kevin pretty much stayed in bed all day. We have days like this - I just wish I could figure out some sort of pattern. Like why does this happen occasionally? Even now he is in his room moaning in pain. It's just so strange...

And that's really about it. I need to finish making my macaroni salad for dinner tomorrow night so I am going to sign off. (Aunt Mona - this is your wonderful recipe - YUM!). It's always better once it's been in the fridge for a while so I always make it the day before!

Day 777 - Jul 15, 2010

Today we had a nice visit from the head of the Polytrauma center here at the VA. Mary, our wonderful FRC, came as well.

It was mostly a visit to just have him get a feel for Kevin's needs and to see how he is progressing. We also came up with a tentative therapy plan and we can only hope it comes to fruition. I really like this guy and I really want to be able to work with the VA, but they really need to walk the walk and not just talk the talk.

I do understand now why the people in Tampa say it is a good thing for these TBI patients to be near a polytrauma VA. Those VA hospitals have the funding necessary to do what is best for these types of patients. Other VAs around the country do not. Personally I think there is something way wrong with that picture. It shouldn't matter if you want to live in Washington or Connecticut. If you are a vet - you shouldn't have to go without just because you don't live in the right place.

Of course I could just go on and on about this, but what's the sense, right?

So we had a new development in the aide area. Johnny is now going to come two days a week (instead of 1 and Lea will come 1 instead of 2) and one of them is going to be on Thursday nights. He was here from 6-11 tonight and it was great! I went out for a bit and then came home and watched tv - UNINTERRUPTED!!!! Holy crap! It was so nice.

Nights are always the hardest as Kevin is settling in and needing me the most. This was a really nice break and I look forward to next week already, lol.

And Scott was released from the hospital today. Shocking, huh? I am nervous for my sister, but there's really nothing I can do. He is remembering more and he is able to walk (his pelvis was not broken - thank goodness!), but he is still very confused and wakes up screaming at times in both confusion and fear. Poor kid. I wish I was there, but I will just have to support them via the phone, I guess.

And that pretty much sums up our day today. I am going to leave you with a photo of Kevin and my mom from Christmas time (I think). It's a pic of Kevin in his coon skin hat that he got at The Alamo last fall. I used an action (just learning about these) to make it look like an old time black and white photo and I just love it like this. Cool, huh?

Day 776 - Jul 14, 2010

There is just no possible way to sum up how today was. Too many things going on in too many different directions.

First - and all importantly - Scott is doing a little bit better (Lorraine - he is from the Indiana, PA area). I am gathering that he still has serious short term memory loss (he asks every couple of minutes where he is and what happened), but I am really hoping the bulk of it is the narcotics talking. I might be wrong, so my next hope is that this aspect goes away over the next few weeks.

They are discussing surgery on his collarbone, and I think they will come to a decision tomorrow. Other than this, he is feeling better and they are discussing sending him home in a few days. I personally think that's a bit premature because he has to keep food down and he has been unable to. He started to be nauseous often times throughout the day today too.

They also aren't allowing him up out of bed yet because they are not 100% sure his pelvis isn't broken. I would also think a collapsed lung and broken ribs might make a difference?

I guess we'll see. I just can't see discussing sending someone home if you aren't even sure if bones are broken yet? Hmmm...

Anyway, thanks everyone for your kind words!

So we had to go to the hospital today and have fluid put in Kevin's expander. This was the first time he had any discomfort, but it only lasted a short while. It wasn't when they filled it either, it was when we got to the car. He's fine now though, so I'm not worrying.

And I'm concerned about my dad. My mom was telling me he didn't feel well today and he is having some real problems with his feet, palms and the inside of his mouth burning. The chemo they have him on is really intense and the doctor warned of these side effects. I just don't like it. I just don't like that I can't even be there to help Mom out and to just be there to see with my own eyes. I also don't like that he was already sleeping by the time I called tonight. Here's hoping he is feeling better tomorrow.

And for some actual good news...Moe is coming Aug 11-16th!!!!! Yay!!! I have decided to wait and take my weekend away when she comes because it will be so much more fun with a friend. I mean...I like myself and all...but it's hard to have a good time on vacation by yourself, lol! So let's all keep everything crossed that we can that nothing goes wrong!

Ok, I am going to try to get some sleep. I couldn't at all last night and it's unfortunate because Kevin actually slept all night long. Not one phone call from him. Maybe he will again tonight, eh?

Day 775 - Jul 13, 2010

I can't believe I am going to do this, but I am going to skip again. My nephew, Scott, was in a severe car accident today and I have been my sister's point of contact all evening/night as I know the most about brain trauma.

Yes, my nephew has a TBI. For a while there, we were very concerned as he had total amnesia, but he is slowly coming around. He does have a mild TBI though and they will need to do cognitive testing down the road to see about any potential brain damage.

He also has a broken collar bone, 3 broken ribs, a collapsed lung, a contusion on his spine and they think his pelvis is broken too. This is all they have found so far and hopefully that ends up being it.

So anyway, we are fine, but if you could keep Scotty in your thoughts tonight that would be great! He's hurting pretty bad and I would really appreciate it. Thanks!

Day 774 - Jul 12, 2010

I thought yesterday was me just trying to recover from getting everything all prepped for the party, but apparently I was getting a bit sick. I barely got out of bed today. I just feel horrible. Johnny came and I slept almost the whole 5 hours. I did get up and make french toast/bacon for dinner for us, did the dishes and then I hit the couch. Kevin is being decent about calling me - it's maybe half of what he normally does and I think it's because he knows I just don't feel good.

As you can tell, I can't even make this post flow as my brain is lagging. I think I will just skip again tonight. Hopefully I feel better tomorrow.

Day 773 - Jul 11, 2010

We had the most laziest of days today. I was just so beat from getting everything ready for the party that I pretty much did nothing today to recover, lol. So I took care of Kevin's needs, but truly - nothing else.

I did, however, take a look at the camera. We took a bunch of pics of the baby, Aurora, but only 1 of Kevin. I am just shaking my head in shame, hehe. Really, we were all just talking and no one was even thinking about the camera.

So anyway, here are some photos of the last few weeks:

This first one is Kevin blowing out his birthday cake candle. You know I had to buy one of those ones that keeps relighting, right? LOL!



As you can see, Kevin was in bed by the time we had cake. He did make it through eating dinner, but he went to his room pretty quickly after that. I wish he could handle noise/people better, but he just can't.

Oh - and I am proud to report that Kevin remembered how to blow out the candles. He couldn't do it last year - even when we tried to show him.

This next one is Pam and Aurora:



These next few are of Breezy and I that day we went to the Riverwalk:





And this last one is Kevin on his birthday at Dave & Buster's.



Other than this, I don't really have anything to say so I guess I'll sign off...

Day 772 - Jul 10, 2010

We had such a great time today. The party was very small as we know Kevin can't handle a lot of noise, but it was still really nice. Pam (our most favorite therapist) came and Maritza, Jose and Joel came and baby Aurora came with her parents, Jennifer and Luis.

I am going to sign off early though as I am just beat. I haven't looked at the camera yet, but I am hoping there are some shots I can show you tomorrow. Not sure though, we were all too busy gabbing to take many photos.

Day 771 - Jul 9, 2010

Today was such a hectic day. Kevin had a dentist appointment first and he did so well, once again. The dentist filled another two teeth with just Novocaine. He is thinking that the next tooth may need a root canal though and we are both unsure about what to do there. He's not sure Kevin can handle sitting there that long, especially as he has to keep still and he has to keep his mouth wide open the whole time. Right now, the dentist lets Kevin move around as needed. We have decided to just see what happens next week and go from there. Who knows...maybe he won't need it after all.

After that, we came home and there was a ton of stuff to do to get ready for the party tomorrow. I decorated a cake for both of the kids and Lea and I worked like a couple of crazy women cleaning this place from top to bottom. That girl is just such a sweetheart! I try to not have her help me too much with cleaning as I prefer her to be here for Kevin, but there was no way I could have gotten all of this done without her help. and it worked out anyway as Kevin just wanted to be left alone when we came home from the dentist anyway.

So Breezy went to the ob/gyn yesterday and they moved her due date from Jan 16 to Jan 12. The doc told her that the baby is about 3 inches long now and he/she looks to be quite healthy. We also have some new sonograms to show you:

In this first one, the baby just happened to turn and look directly into the camera. I know it's kinda hard to see these things, but the white markings are the baby's face (eyes, nose, etc).


This one's just a side view of the whole baby.



Breezy told me she watched the baby rub it's face with both hands and move all around. I sure wish I could have seen it, but we were at the hospital at the same time that she was at the docs. Next time, hopefully.

And now it's off to watch some tv.

Day 770 - Jul 8, 2010

Today we went back to the hospital to have more fluid put in Kevin's tissue expander. I am so very happy to tell you that there was no sickness following the event. Thank goodness!! I kinda figured last week it was more the CT scan and I have some folks looking into whether they used contrast the last few times he's had them. The PA today felt that maybe he was having a reaction to it and I totally agree. I would guess that it's either that or a fluid issue from him laying flat on the table and then sitting up suddenly.

And I just have to say that I really appreciate having good docs and PAs that know their patient inside and out. Kevin was really struggling to get on the bed far enough for the PA to be able to inject him while standing on the opposite side of the bed and the PA questioned why Kevin was struggling so much. He remembered that Kevin got around a lot better months ago and we had a long discussion about it. When we finished the injection, he called a doctor and they discussed therapy there at BAMC.

I believe I will be getting a call within the next week for Kevin to go to the Center for the Intrepid for therapy. I have to remember to talk to Mary about whether this is TBI therapy or plain OT and PT. I am just glad that Kevin is feeling well enough now to get out of the house and go to therapy. I doubt he will be able to go for hours like we were getting up to in Tampa, but at least we are going to get rolling again.

So anyway, on the way home from the hospital we stopped at Walmart and Kevin bought himself some new skateboard XBox 360 game. I hope he actually plays it. Maybe he and Lea or he and Johnny can get to it soon. He really just needs to practice with that one handed controller and I'm quite sure he will be great at it if he would.

And that pretty much sums up our day. We both took a nap this evening so I didn't even get to call my parents tonight. Sorry Mom and Dad. Will catch you tomorrow!

Day 769 - Jul 7, 2010

I am going to have to skip tonight as I have a ton of paperwork to do. Catch y'all tomorrow...

Day 768 - Jul 6, 2010

Kevin's birthday was a smashing success! The three of us (Breezy too) went to Dave and Buster's and we had a great time!! I think we were there almost four hours and Kevin had so much fun! He was even dancing to a Lady Gaga song in the parking lot when we were leaving and it was hilarious! I so wished I had the video camera with me...

We did opt to go after 5pm so that Breezy could go and it was still slow there so we were ok on the over-stimulation front.

And I don't think I mentioned it, but Kevin's Zune died about a month or so ago. He has been totally lost without it so Breezy and I went in together and got him a new one. He was ecstatic! I think he has called me into his room about 6 times tonight and just held up his Zune and emphatically said "THANK YOU!!"

So I spent a couple of hours tonight trying to get songs loaded on it and luckily I even found that game that he always used to play. I feel pretty confident that this will keep him entertained during all the dental appts he has coming up, lol.

Also, Kevin was supposed to check in to the hospital tomorrow to begin detoxing, but I have decided to wait a bit. I just feel we need a break as he is finally feeling well enough to get out of bed and do things. I don't know when for sure we will admit him and begin the process, but it will be within the next few months.

And that's pretty much it. Here's hoping tomorrow is another great day!

Day 767 - Jul 5, 2010

Today Breezy and I busted loose. She had the day off from work so we met up and went downtown to the Riverwalk. There was supposed to be some kind of craft show, but after an hour of walking around we saw nothing. Since we had both been to the Riverwalk before, we opted to get out of the city and go for dinner somewhere. We had such a nice leisurely time and I really enjoyed being with just her. We don't get to be together often without the demands of Kevin.

After that, I came home and was just so tired that I ended up taking a nap until almost 11pm. I have no idea what that was all about, but Kevin even got up and took care of whatever he needed. I vaguely remember hearing him get his meds for tomorrow as he has one of those pill strips that holds his morning, afternoon, evening and night pills. He carries it in his pocket and takes his own pills. So anyway, he swapped it out after he took his 9pm meds.

And tomorrow is Kevin's birthday. Happy Birthday, Buddy!! Technically though, it's today as it's after midnight and Kevin made sure I came into his room on the dot and sang him "Happy Birthday", lol.

I feel kinda bad because we aren't really doing anything tomorrow, but we are having a very small get-together on Saturday for both him and Breezy. Really, it's just an excuse to have some friends over for dinner, lol.

And I had planned to take him to see "Killers" at the movies tomorrow - but dangit! It's gone! There really isn't anything else he would want to see so I will have to try to think of something else. I just don't know what. Maybe Dave and Buster's again. He did really enjoy that...

Day 766 - Jul 4, 2010

Today didn't turn out like I had hoped. First, we went to an outlet mall because Kevin wanted to buy some more jeans. We made it there, only to have found the Zoo York store had closed down since we were there last. We made the best of it and went to another of his favs, but he was trying to tell me something about sneakers and I couldn't understand. I guessed everything that I could think of, but I didn't hit the mark.

So Kevin got mad and we had to leave. When he gets frustrated, that's it - he goes to the car and we have to go home. So we drove the whole way up there only to leave within 10 minutes. Grrrr!

After that we came home and Kevin rested for a while and we attempted to go to see some fireworks. That didn't work either. We drove about a half hour to get there and ended up being in traffic (like normal because everyone is going to the same park) and after another 25 minutes or so of barely moving an inch, Kevin demanded we go home.

Truthfully, it made me mad. And then it made me sad. I do understand that he can't help his impatience somewhat, and I do understand his over-stimulation, but what in the heck is the difference between sitting in a car and sitting at home? Frankly, I am getting a little tired of life passing us by because he just won't even try. The first minute that something doesn't go his way - we have to go home. It is so damn frustrating. And really - it's just so sad for both us.

I talked to Mary about the fact that we haven't had any therapies yet and she told me to give her a week to see if the VA was going to get things started. It has been 6 months since Kevin had any therapy and we need to get rolling. I want behavioral therapy, I want cognitive therapy, I want PT, OT and speech. Kevin has slid so far backward since coming here and it's truly heartbreaking to see all the progress we made go down the drain.

As for the therapies - the behavioral therapy will make such a difference to how Kevin does handle things when they don't go his way. It will also help me to better know how to handle his tyrannical moods. The cognitive therapy will make a heck of a difference to how he thinks and comprehends. PT - I watched a video last night that I shot from the end of last year and Kevin was walking almost normal. Now? He is barely able to walk. He shuffles along and relies on the cane completely - whereas before, he was barely using his cane. He is MUCH slower now and I think it is truly sad. OT? We were supposed to have a botox treatment during the last surgery but couldn't because no OT was on board. Now speech - the therapist did come to our house a few weeks ago and she at least did call on Friday to set up an appt - that's a start I guess. But I just don't understand why it has taken 3 months to get this started. When the docs came to our house in the beginning of April they said they would get on it. SO WHERE THE HELL ARE THE THERAPISTS?????????????????

I don't know. It just makes me wonder where we could possibly go that Kevin could have EVERYTHING he needs. A group of great doctors AND all the therapies and special aides to help him have some sort of decent life.

And you know what else? It would be really great if I didn't have to bang my head against the wall to get all of these things. I'm getting really tired of always having to fight the system for his needs. Why can't people just DO what they say they are going to. Life would be so much simpler.

Day 765 - Jul 3, 2010

I am just going to skip tonight. Breezy and Chris were here until 1am and I am just tired so I am going to try to get to bed. Kevin is having another one of those nights where he is dreaming so I'm not sure I will get any rest, but I would like to try.

I hope everyone has a great 4th of July!!

Day 764 - Jul 2, 2010

Sorry about the videos being marked private. I have no idea how that happened, but I fixed them earlier this afternoon.

So today we went to the dentist office and I was just so proud of Kevin! Back when we went to the dentist in Tampa, we knew Kevin was going to need sedated to have all of his cavities filled. We ended up coming here before I could find a dentist there that was able to provide IV sedation.

While visiting the dentist here though (who, btw, it so wonderful with Kevin!), we decided to try to just use Novocaine and see how he handled it. We had planned to just do one tiny filling today, but he did so well that they ended up filling another cavity! Truly - Kev was awesome! He has just come so far in the last few months! And the dentist here is a comedian just like Kev and the two play off each other so very well. It was really just such a calm and soothing experience. I hope it continues to be this way. The cavities are only getting bigger from here on out so they will take longer to fill. BUT - I have faith in the two of them and feel it will all go fine.

When we left the dentist we were going to go and visit Breezy at work, but it was raining so badly that we just went home. I was soaked from getting Kevin and his wheelchair into the car (even though a very nice man helped me) and I didn't think Breezy's work would appreciate a couple of drowned rats visiting, lol. So I didn't get to see my daughter on her birthday, but she is coming over tomorrow for her birthday dinner. The girl chose stromboli and I have to admit I am looking forward to eating it too, lol.

And now I am going to try to find a weekend vacation spot that is within driving distance of SA. Anybody local know of anywhere? It looks like I'm going alone so it needs to be a safe place. I am toying with Corpus Christi before the oil reaches it. I am hoping to go two weeks from today, but who really knows if that date will work out. I am not really looking for crowds so I'm not sure if the beach is the best place...

Day 763 - Jul 1, 2010

Today was quite the day. We took Kevin to have fluid injected into his skin expander and he did very well with that. Matter of fact, here are a couple videos of it happening. I warn you now, if you are squeamish - these may not be for you.





After this, we had to go and have a CT scan done of Kevin's head so that the new plate can be built. It took a while because this plate will be built correctly - making it appear that Kevin has the tissue/muscle that is actually missing from the left side of his head. The last one wasn't designed to be uniform with the right side of his head causing us to need the plastic surgery to correct his appearance.

So that is when the problem started. As they were wheeling Kevin out of CT, he was nauseous. We grabbed a puke bowl and waited a few minutes but then Kevin wanted to go home. So I wheeled him out and left him in front of the hospital while I went to get the car. By the time I got back to him, he was white as a ghost and sweat was just running down his face. His clothes were completely soaked and stuck to him and he was so sick.

I wanted to take him back in to the hospital but he refused. I managed to somehow get him into the car and I just pulled away and parked in the first spot I could find. We just sat there for 45 minutes while Kevin puked his guts out.

He stopped sweating and a small amount of color returned to his face and he told me to get home. We left and he did puke a couple more times on the way. Let me tell you, it's not easy trying to pull over in traffic while holding a puke bowl up to the face of the person sitting next to you.

But we did make it home and it took Kevin about a half hour to work up the energy to go from his wheelchair to his bed, but once he was in bed - he slept for 3 hours. Truthfully, at this point I was starting to panic.

I didn't panic prior to this because Kevin has actually had this same response the last 2 times he has had a CT scan. I don't know if it's the fluid movement going from laying flat on the table to upright in the chair or if it could be the radiation? I don't know. I probably should call someone tomorrow, but I'm not quite sure who to call.

So anyway, after sleeping like the dead for the three hours, he did finally wake up and was completely fine. I was on the verge of calling the ER when I finally heard "MOMMM". Phew! I can't tell you how happy I was to hear that word!

Oh and I have to tell you - at one point I walked in to check on him and he had the biggest smile on his face while he was sleeping. He must have been having a really great dream, lol. It sure was a sight for sore eyes - I haven't seen that sweet and innocent smile in a very long time. Mostly now it's that quirky grin, lol.

And now, before I sign off - I want to wish my baby girl a HAPPY BIRTHDAY!!!

Day 762 - Jun 30, 2010

Today I left Kevin with Lea and did some 'hurricane readiness' shopping. I had to buy water and flashlights and candles and all that good kind of stuff.

As an FYI - if I don't post over the next few days it could be because the electric is off. I don't really know how this is going to affect us, but I just want to throw it out there in case. This way no one will worry.

So anyway, other than this we didn't really do anything today. I think I am going to just sign off and watch tonight's episode of Top Chef.

Jodi - good luck tomorrow!