Kevin Kammerdeiner, the story of a Wounded Warrior.

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Chalkperson
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Tue Jun 15, 2010 12:47 pm

TUESDAY, JUNE 15, 2010
Day 746 - Jun 14, 2010

We came home from the hospital today!! We got home late-afternoon and by the time I got Kevin all situated it was time for dinner. Breezy came over and we had apple streusel (sp) pancakes (although Kevin had choc chip pancakes) which truly did sound better than they tasted.

Anyway, and I excrement you not - Kevin already looks like one of the coneheads from SNL and it's only week 1. Every week for 2 months they will put more saline solution into the sac on the top of his head, just under his skin. If you all remember what he looked like in the beginning, imagine all that fluid being built upward on the top of his head. We thought we were going to be able to cover his head with a hat, but it's pretty clear at this point that that's not gonna happen.

This is going to be a really rough 2 months. Kevin chuckled when he first saw it today, but I feel safe in saying that he will probably refuse to go anywhere within the next couple of weeks. I know I wouldn't step foot out of the house looking like that. Call it vain, call it whatever you want, but I wouldn't do it.

I just feel so bad for him.

So, I am planning to take him to see The Karate Kid tomorrow. I figure we better go see the movie real quick or we won't be seeing it. And then there's Toy Story next week - yahoo!

And yes, I know I could be wrong - maybe it won't faze him in the least, but I want to try to get some fun in now just in case.

I also need to decide whether to throw a little birthday party for him and Breezy. Parties are not easy for him and who can say what his mindset will be in a few weeks. Then there's the question of whether or not I have the energy to put together something like that.

Oh well, I guess I'll think about it tomorrow. I'm just too tired to tonight.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu Jun 17, 2010 9:48 am

WEDNESDAY, JUNE 16, 2010
Day 747 - Jun 15, 2010

Yay! We made it to the movie! Kev did pretty well, but there were quite a few subtitles and I realized about halfway through the movie that Kevin couldn't read them. Duh! Once I did realize that he wasn't understanding, I started to lean over and read them to him. That really helped. Sometimes I am a little slow, lol.

And tonight Kevin is just frustrated and angry. He is in his room trying to turn over his mattress because his bed is just so uncomfortable. I honestly don't know why it is so flippin' hard to get a different mattress?! I just popped off another email to the case manager and here's hoping that this time - it works. I'm not holding my breath, but I am ready to just scream. Kevin, on the other hand, is screaming. He is in there screaming "HOW LONG? HOW LONG?" and he's just crying in frustration and it is really heartbreaking. This is the kind of crap that just burns me up! Seriously - how much more does the kid have to suffer?

And tomorrow we have a new aide coming. Joseph just didn't work out. It's a shame really, but it is what it is.

Ok, I just challenged Kevin to a game of Skipbo. Anything to get his mind out of his misery.

(OMG! I wrote this last night, hit the post button and walked away. I didn't realize there was an error! Sorry for alarming anyone!)
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu Jun 17, 2010 9:48 am

THURSDAY, JUNE 17, 2010
Day 748 - Jun 16, 2010

I am really sorry that I didn't check my post last night. I always do, but Kevin was impatient to get the game started to I just hit the button and walked away without looking. I went to bed after we played a few hands so I didn't see it until later today. I really am sorry for those of you that worried unnecessarily.

So anyway, the case manager is working on different avenues to get a new mattress. She called today and feels our frustration and I am trying to feel confident that it may happen soon.

She did get the reverse osmosis rolling. I talked to the water filtration guy a few times today and it appears the water softener will be here next week sometime. I don't know if I mentioned that San Antonio water is not good for burn patients to shower in. I never knew about this, but I would hazard a guess that Florida water is no better.

And poor Kevin today. His shower stall is just a small one and because he can't get his stitches wet he had to take a bath today. When sitting in his shower, the water just beats down on his head and he can't get his head or face wet. So anyway, I helped him get into the tub, which is one of those garden tubs - really deep - and that went RELATIVELY easy. BUT, getting him back up and out of it - now that was a whole different story. We both struggled and after about 10 minutes of us trying to find a way to do it, I finally just crawled into the tub and basically lifted him out by grabbing him under his arms and around his ribs. Geesh does that boy need to lose some weight.

I so hope that they remove all of his stitches tomorrow when we go to see the doctor. Not sure how many days I can lift him out of that thing.

And the new aide came today. She was a very nice older woman, but I did reiterate that we would prefer a young man. They are going to keep looking for someone in the meantime.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri Jun 18, 2010 10:28 am

FRIDAY, JUNE 18, 2010
Day 749 - Jun 17, 2010

We had a really good day today. We had to go to the hospital for a video conference with our plastic surgeon (he is actually from Maryland and comes one week a month to work on the burn patients) and then Kevin had his stitches removed. He did really well with that and then Kev wanted to go visit everyone on the burn ward. We did visit for a while and then we headed toward home.

I did learn some things today. First, Kevin will begin to have between 30 and 40 CCs of saline solution put into his expander starting next week. We will continue to do this until roughly the last week of August when we will have the plate put back in (once again - barring any infections). Kevin needs to have a CT scan done of his head pretty soon so that the plate can be ordered too. It takes about 4 weeks to have one made.

I have also decided to detox Kevin beginning Jul 7 - a day after his birthday. I am already starting the process, but Kevin will be admitted to the hospital on that day for roughly 10 days as we pull him off of the methadone. At this point, we are adding methadone, hoping to eliminate the oxycontin. Apparently there aren't as many side effects from decreasing the meth as there are from oxy. I am scared to death to do this, but I am trusting the docs on this one.

We also have a dentist appt on the 29th of this month and our team at BAMC wants Kevin to have ALL of his dental work done before this plate is put in. This will be interesting as we are having the work done at a VA clinic and we all know how slow they are. Personally, I can't see it happening and I only hope that I am proven wrong.

The thought process on this is dental work also runs the risk of infection and we want all possible infections treated before the plate is reinserted. If Kevin's new plate were to get infected, I believe he would have to wait a full year to have a third put in. That would be horrible!

And this pretty much wraps up our day. Here's hoping tomorrow is another good one!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sun Jun 20, 2010 6:42 pm

SATURDAY, JUNE 19, 2010
Day 750 - Jun 18, 2010

Kevin had yet another great day. He did sleep (his kind of sleep - not the normal kind) until almost 3pm, but since he woke up and stayed up, he has been in a great mood.

Sadly, he wouldn't allow the new aide to do anything for him, but we have a young man coming on Monday so we will see how well that works out.

Anyway, we had a nice dinner (which he sat through entirely!) and then we played a very competitive game of Skipbo. I am loving the fact that he has become quite a vindictive player. Beware Moe - he is more cutthroat than even I am, lol.

After dinner, we Skyped with everyone in Florida. I don't think I mentioned that my niece, Chrissy, is getting married tomorrow. It's heartbreaking to both Kevin and I that we aren't able to be there. Everyone is staying at the house and it's just so sad that we are missing such a large event in our family.

But, I must say that my parents look wonderful! I think they are lovin' having everyone around. Kevin got very upset when the kids were all going out for the night and he realized that he wasn't able to do it, but he rebounded after we hung up.

So directly after Skyping Kevin actually stayed in the living room and we watched "The Wizard of Oz" together. He has been out of his bed/room for hours now.

And - and get this - he did not take one dose of oxy today!!! He took Tylenol only 3 times too!

The doc mentioned yesterday that the expander may fool the brain into believing the plate is in. I thought about that the other day because with the skin taut like that it becomes hard. I didn't ask though so I'm glad the doc mentioned it. Wouldn't that be great if he was able to be up more and to not have so much pain?!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sun Jun 20, 2010 6:43 pm

SUNDAY, JUNE 20, 2010
Day 781 - Jun 18, 2010

Ahh. The wonders of technology. Today, Kevin and I attended a wedding in Florida while sitting at our dining room table in Texas. Yep. The family took a laptop, hooked it up to the internet, placed us to the right of the minister and we Skyped the whole thing. The reception too. We got to see Chrissy be given away by her 2 dads and her grandfather (my dad) and we got to see them exchange rings and we also got to see them share their first kiss as husband and wife. It really was such a lovely ceremony. After the wedding we got to see everyone eat and the first dance, the bouquet toss and the cutting of the cake. All in all, I was Skyping for 4 hours. Kevin made it through the ceremony and that's about it.

So the quality wasn't the best, and it sure wasn't the same as us being there, but it definitely beat the alternative and that was to miss it entirely. I am so glad I thought of this yesterday. We got Skype set up and everything last night, but we weren't sure if there would be internet available. Sure enough - there was. YAY!!!

And in the middle of the reception I got a phone call from someone I haven't spoken to since 2nd grade - over 30 years! Unbelievably, my best friend from back in those days found me via the internet and contacted me today. Jocelyn - it was just so wonderful catching up with you!

It's just amazing the things you can do nowadays, huh?
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Mon Jun 21, 2010 10:28 am

MONDAY, JUNE 21, 2010
Day 782 - Jun 20, 2010

Poor Kevin. Today was just one of those days when everything was completely off-kilter. No matter what he did - it was messed up. Shows he taped were screwed up or just not there, he spilled his strawberry milk twice (one time the cup went flying and completely covered the whole dining room - ack!!), the store was out of choc chip cookie dough pop tarts, his sheets keep coming undone on his bed (meaning he has to get up out of bed to fix them), he's whacked himself in the head a couple of times today and truly...I could go on and on. Personally, I was getting ready to duct tape him to his bed, lol. I was outright afraid of what was gonna happen next.

But hey - at least I won ALL 9 games of cards! YES - ALL of them!! Poor guy - he couldn't even win one hand. I did think about letting him win, but he busted me doing that once in the beginning so I won't try it again.

And that's really about it today. We ventured out to Walmart specifically for the pop tarts as Kevin takes a few bites to keep from getting sick when taking his pills. I thought about taking him to see Toy Story 3 today, but we really stay away from things like that on the weekends. Usually, we don't even leave the house on Sats and Suns due to the crowds everywhere.

So anyway, I hope all the fathers out there had a great Father's Day! And the same to the moms that have had to be the father too!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed Jun 23, 2010 12:56 pm

WEDNESDAY, JUNE 23, 2010
Day 754 - Jun 22, 2010

Today we were supposed to have fluid put into Kevin's expander, but when we got to the hospital Kevin had a slight temperature. We discussed it and decided to just wait a week as some of the stitched area looked like it could have used the extra time to heal anyway.

Kevin and I had planned to go see Toy Story 3 today after visiting the docs, but I didn't think we should go with him having a fever. We had the nurse take his temp again at the end of our session and sure enough it was normal. He had no other signs of being sick and the PA thought it might just have been the heat as it was close to 100 degrees here. Being overly cautious though, I still thought we should go home, but Kevin was adamant that we were seeing the movie.

He wore me down, so we did see it. And we both enjoyed it immensely.

That pretty much sums up our day so I am going to go and read some. Kevin is still wide awake and raring to go. I wish I had his energy...

Oh - and thanks to the anonymous person that pointed out I jumped from day 750 to day 780. It must have been a typo and I always go by the previous post to know which day it is so it would have just kept going.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu Jun 24, 2010 9:16 am

THURSDAY, JUNE 24, 2010
Day 755 - Jun 23, 2010

Today was another great day. We had a young lady come as Kevin's aide today and they hit it off as well as he did with Johnny. Johnny can only come on Mondays as he is in college so Leigha (sp) will come the other two days a week.

Anyway, I am ecstatic to say she came in the door with skater punk clothes on as well. She is from a military family too and she lived predominantly in Germany so they also had that in common.

We also had a guy come today to discuss technological aids to assist Kevin in being more independent. He is going to request (from the VA) that Kevin get a remote that will control all of the lights and fans in his domain. Man, that will save me about 200 (not an exaggeration) trips a night into his room to adjust his fan and turn on/off the lights. We also discussed an iPad and that excites me more than anything. One of the nurses had one when we were in the hospital the last time and as soon as I saw it I knew it would actually be perfect for Kevin. He has a laptop now, but it's too bulky for him to move around by himself with one arm/hand. The iPad is super lightweight and it's not bulky at all. He also can't spell or type so browsing the internet doesn't work for him unless I am sitting there with him. He can also lift it to his face so that he can see things clearly as he does have an issue with that on his laptop. He enjoys playing games and the guy watched Kevin zooming around his phone to get to the different apps so he was just as excited about it for Kevin as I was. I so hope that happens. Kevin would truly be so ecstatic! Some of those apps would really help him learn and he could also work on his hand/eye coordination. The guy also mentioned that speech pathologists have apps for it to help with speaking so that Kevin could use it when he needed to say something that he couldn't voice. Wouldn't that just be so awesome for him?

So other than that, we did nothing today so I am going to sign off and continue scrapping. I hope Kevin goes to sleep soon...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sun Jun 27, 2010 1:00 pm

SUNDAY, JUNE 27, 2010
Day 758 - Jun 26, 2010

We had a super fantastic day today! One of Kevin's Army buddies from Afghanistan came in for the weekend to visit all of the "Herd" members at BAMC.

Anyway, Justin came over and he and Kevin just hit it off so well. They actually went for a drive together for quite a while - I was sooooo excited!!! - and then they came home and the five of us had dinner together (Breezy and Chris were here too).

After dinner (which, btw, Kevin sat through and ate plenty of!!) we all played a healthy game of Uno and then Justin had to go hook up with some of the other guys.

It was just so wonderful! Kevin did so well for HOURS and it really just made me so dang happy!

Truthfully, Kevin has been doing better now that we upped the methadone. He rarely takes any oxy and we only take Tylenol a few times a day now too. It could in part be the skin expander making his skin taut, but really...who knows and who cares. Whatever is doing it - I am liking it that Kevin isn't hurting as much and is starting to be able to do more.

I am really just so excited! I feel like things just might be getting better for Kevin (and in turn, me). We need it to. We have both just been snapping at each other and feeling sorry for ourselves and just all out feeling like crap. It's not the nature of our personalities so we really need to see a change.

Let's just hope I feel this way tomorrow because I am getting really tired of feeling down in the dumps...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Mon Jun 28, 2010 9:38 am

MONDAY, JUNE 28, 2010
Day 759 - Jun 27, 2010

We had a very boring day today. We ran a couple errands and then came home and did nothing.

Kevin's having a rough night though. It's strange, but sometimes he will sleep and in the next second be screaming "MOM" and by the time I get to him he is back to sleep. He just woke up and screamed "Hellllloooo" and is already snoring again. He must be dreaming maybe? He has nights like this where he does it all night long. Tonight is one of those nights. About four times now he has screamed "HOT" and when I get to him he is sleeping with his comforter pulled up to his chin. Go figure.

And that's about it so I am going to read a while. I want to go to sleep, but there's no sense trying yet. Hopefully Kev will fall into a deep sleep soon. It's pretty early though, so I doubt it...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Tue Jun 29, 2010 9:43 am

TUESDAY, JUNE 29, 2010
Day 760 - Jun 28, 2010

We went to see the movie "Grown Ups" today. We actually tried to go on Friday, but the theater was packed (even in the middle of the afternoon) so we didn't even bother to go in.

But today we finally made it. We have been waiting a while for the arrival of this movie and I think we both expected more. Don't get me wrong, we really did enjoy it, but we thought it would be a little bit funnier.

So anyway, Johnny met us there and the three of us watched it. After this we went home, Kevin was a bit overstimulated, so I got him situated in his room and I left and met Breezy for a bit.

To Martha K and Tracey from PGH - I couldn't agree more with your comments today.

I am realizing that I can't continue 24/7 like this. I really need to try to leave while the aides are here - and NOT run errands the whole time. I need some 'me' time because I really am getting depressed. I think I am actually to the point that I need a little 'medicinal' help, but I don't exactly know how to go about getting it. I am going to talk to Mary (Wonderful FRC) about this tomorrow.

I also talked to Breezy on Friday about giving me a weekend soon. I'm not sure how to fit it in with the stuff that needs to happen over the next month or so, but if I don't get away soon I am going to crack. My chest has been hurting, my teeth are constantly clenched (even during sleep) and I am crying an awful lot lately. I really am not a crier. And I usually can at least fake like all is well, but really - I am just not feelin' it lately.

So, a change needs to be made. Now I just need to figure out how to fix it and force myself to do it. It's always so easy to put my needs aside as Kevin just requires so much on a day to day basis (or should I say minute by minute basis?) and I really am too tired to worry about myself.

I just need to do it though. So maybe this week I will finally go for that massage the kids got me for Mother's Day...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed Jun 30, 2010 11:56 am

WEDNESDAY, JUNE 30, 2010
Day 761 - Jun 29, 2010

Thanks everyone for the continued support. I will figure it out and maybe next week I can try to get a little break - this week is just too busy with appointments.

And speaking of appointments, today we took Kevin to the VA dentist's office. I had been told that we needed to have all of his teeth fixed before we got the plate put in so we went for our initial consult today. I am not sure exactly how many cavities Kevin does have, but we are going to begin filling them on Friday.

I have to say, a few weeks ago when this appointment was scheduled, I was so sure it was going to be just horrible. Back then though, Kevin could barely get out of bed and it was just unimaginable to me that we could make the drive - more or less make it through the visit.

But Kevin did FANTASTIC today!! We got there and he was super patient while waiting to go in. Then he hit it off well with the dentist and his assistant and he managed to get x-rays done AND a cleaning! He was just such a trooper and I was so proud of him.

So we go back on Friday and they are planning to at least get one tooth filled. I feel so much better about getting all of this done now. And I have to give credit where credit is due - this VA dental clinic is WONDERFUL!!

So that's pretty much it for today. I am going to try to get some sleep. Kevin has been dreaming (or whatever) pretty badly the last few nights and so far so good for tonight. He has been snoring for 20 minutes now and he hasn't awakened once yet.

Oh please, please, please let him sleep all night long!!!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri Jul 02, 2010 10:45 am

FRIDAY, JULY 2, 2010
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!!!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sat Jul 03, 2010 12:55 pm

SATURDAY, JULY 3, 2010
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...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Mon Jul 05, 2010 12:56 pm

MONDAY, JULY 5, 2010
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.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Tue Jul 06, 2010 10:46 am

TUESDAY, JULY 6, 2010
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...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed Jul 07, 2010 10:04 am

WEDNESDAY, JULY 7, 2010
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!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri Jul 09, 2010 1:26 am

FRIDAY, JULY 9, 2010
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!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed Jul 14, 2010 10:00 am

WEDNESDAY, JULY 14, 2010
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!
Poor Leslie, she never gets a break, I chatted with Werner about Kevin and Leslie at the Meet Up, we only hear of fatalities in our two Wars, never the wounded, there are thousands and thousands of wounded Vet's, I feel it an honor that I know Kevin, Breezy and Leslie, what an incredible family, and, they are always in my thoughts, there is not much to add to her posts as all we can do is read the and marvel at Leslie's strength and dedication, I have never known anyone that comes close to them in terms of dealing with the challenges of life, we have been trying to meet up for the last eighteen months but something always comes up and our plans have to change, but, they all know about CMG and those of you that read her daily blog, she and I thank you from the bottom of our hearts, it means a great deal to us all...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu Jul 15, 2010 10:40 am

THURSDAY, JULY 15, 2010
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?
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri Jul 16, 2010 9:59 am

FRIDAY, JULY 16, 2010
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
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sat Jul 17, 2010 12:41 pm

SATURDAY, JULY 17, 2010
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!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sun Jul 18, 2010 12:47 pm

SUNDAY, JULY 18, 2010
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!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Tue Jul 20, 2010 9:31 am

TUESDAY, JULY 20, 2010
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...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed Jul 21, 2010 10:37 am

WEDNESDAY, JULY 21, 2010
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.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu Jul 22, 2010 8:25 am

THURSDAY, JULY 22, 2010
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!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri Jul 23, 2010 9:52 am

FRIDAY, JULY 23, 2010
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!!!!!!!!!!!!!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sat Jul 24, 2010 1:51 pm

SATURDAY, JULY 24, 2010
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...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Mon Jul 26, 2010 2:06 pm

MONDAY, JULY 26, 2010
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...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Tue Jul 27, 2010 9:25 am

TUESDAY, JULY 27, 2010
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?!!!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed Jul 28, 2010 9:26 am

WEDNESDAY, JULY 28, 2010
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!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu Jul 29, 2010 2:49 pm

THURSDAY, JULY 29, 2010
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!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri Jul 30, 2010 10:57 am

FRIDAY, JULY 30, 2010
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.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sat Jul 31, 2010 2:04 pm

SATURDAY, JULY 31, 2010
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.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Tue Aug 03, 2010 12:31 am

MONDAY, AUGUST 2, 2010
Day 794 - Aug 1, 2010

We had a pretty nice day today. Breezy and Chris came over for dinner - it's been quite a while since they did that as they were packing and moving and couldn't get away.

We are having a bit of a jealousy issue though. A couple of weeks ago Kevin got very angry at me because the background on my computer was of just Breezy. He was upset because he wasn't in the photo.

Then today he was angry because I was mainly talking to her at the dinner table and he got up and went to his room - slamming the door of course.

I'm not really sure where this is all coming from lately. I suppose it could be because I rarely leave him and Breezy hasn't been coming over as much. I really need to get out more and I am hoping to work on it some tomorrow. Johnny will be here and I am going to send him and Kevin out. Kevin has agreed to go (amazing!!) and now I just need to think of a place to send them. It can't be far as Johnny hasn't went anywhere with Kevin yet so hopefully I will come up with something asap.

It could also be that he can't really 'join' in on the conversation too. I don't know...I just hope this all goes away soon. Not liking the angry fits...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Tue Aug 03, 2010 11:11 am

TUESDAY, AUGUST 3, 2010
Day 795 - Aug 2, 2010

Today was a really good day. Kevin went to his first 'real' physical therapy appt and he rocked it!! We were doing PT and then OT back to back so we opted for 1/2 hour sessions to make sure he could handle it and he REALLY rocked it!

For all you Atreyu fans out there - they are jammin to it in the background. Kevin is able to bring his music in and listen to it while working out.

So after PT, he went into a room and had an OT evaluation done. Everything is on target for that to start on Wed and I was very excited to see that while they are doing PT/OT - they also do a form of cognitive therapy. They did some cognitive testing while we were doing the OT eval.

I can't stress how excited I was to see that Kevin was able to write two words today from memory - cat and dog!! He has only been able to write Mom and Kevin without any help before and I couldn't believe my eyes when he pulled it out of his memory! The therapist was just as excited saying 'it's all in there - it just needs to be pulled back out!

Woohoo!!!!!!!!!!!!

So before we even left for PT/OT, the speech pathologist from the VA called me today and had an opening to come to the house and work with Kevin. She actually beat us here as his other therapies ran over a bit (he didn't want to leave!) so our time was limited, but she got some of the generalities out of the way. She is going to come once a week for now and when our schedule gets a bit lighter (after the surgery), we will probably end up going where we go for the other therapies. This way he can have 3 days a week instead of 1. We just don't have time now though with the skin expander and dentist appointments.

And then tonight Johnny also came. He and Kevin did end up going down the road, but only to McDonalds. It was ok as it was the first time and I am thinking that they will probably go out and about all the time now that the first time has occurred.

So they weren't gone long and then ended up just coming home to eat and then they went into Kevin's room to watch a movie. It wasn't too long later that I heard Kevin snoring and I so wasn't surprised! Kevin had had a really busy day so far and had to be exhausted.

So Kevin is now talking on the phone to Tracy and has been for a good hour or so. It enabled me to get all of this post done uninterrupted! YAY! He is doing so much better with his talking, isn't he? He did pretty well with the word lemonade the other night - and so far he is remembering it more often that not!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu Aug 05, 2010 9:56 am

THURSDAY, AUGUST 5, 2010
Day 797 - Aug 4, 2010

It has been a really rough couple of days. Kevin must have hurt himself a little bit at therapy the other day (or at least used muscles that haven't been used in a long time) and he has been in a lot of pain since Monday night. I am medicating him pretty constantly and it's still been very difficult to get through the days.

Poor Lea. She came yesterday and after literally being on the phone for 5 hours straight, I opted to get out for a little bit. Actually, while I was talking to one group of people on the phone I mentioned how I hadn't even been able to get the massage that the kids gifted me for Mother's Day. So that's what I did yesterday. I FINALLY went for the massage!

But anyway, Lea even texted me and while I was gone and was shocked at how needy Kevin was. She met me downstairs at the car because I went for groceries after the my spa appt and I grabbed her by the shoulders and said "WELCOME TO MY WORLD, LOL!!!!" Oddly enough - he is usually pretty good while Lea and Johnny are here. They usually sit and watch tv or something like that and that was apparently not happening yesterday! She was seeing how Kevin is all the time with me.

So anyway, he was medicated enough to still go to therapy today, but I had them take it easy on him. No bike, just some stretching.

And for some GREAT news!!! IT CAME!!!!!!!!!!!!!!!!!!

Yes, the iPad came!! We got it yesterday and I spent some time getting everything all set up. He can now watch movies via netflix, go on Facebook, check his email (I had to set up a new one so if you are his friend and would like to email him - message him on Facebook), he can go to his MySpace page and so far I downloaded iSpeak. I still have to delve into that one app to help him talk, but I want to make sure it will work as it's $200 and I don't want to buy it if I don't think he is really going to use it. It's just going to be a matter of finding the right one for him.

Now the iSpeak will work, kinda. It's a $1.99 app where you type something and push a button and it will say the words. The only problem is that he can't type (yet). I need to go in and type a bunch of things and then he can just click on them when he needs to, but I haven't had time to do that yet.

And I am going to sign off with a couple of photos of Kevin going to therapy today with his new iPad in hand! That carrying case rocks and Kev is just so excited! Once again - thanks Operation American Pride!!!!!
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri Aug 06, 2010 10:20 am

FRIDAY, AUGUST 6, 2010
Day 798 - Aug 5, 2010

Today was a decent day. Breezy came over for dinner and then when Johnny got here Breezy and I went to the family center on post to return some movies that we got last week.

We stopped at Target on the way home and I bought some workbooks for Kevin to help him learn to write. Up until now he refused to do them as they are for kindergarten age children, but we had a long talk yesterday on the way to therapy and I told him that after watching him write cat and dog, we really needed to work on this. I explained that he really does have to start over just like when he was a small child. He finally agreed. I have tried to do this quite a few times, but because the books are not age appropriate he was having none of it.

I also purchased a couple of 'I Spy' books. I toyed with a "Where's Waldo" book, but I knew it would just be too much yet. Kevin was really excited to see these I Spy books. He loves stuff like that and dove right in after Johnny left. Matter of fact, here is a photo of him working on one of the puzzles. What a look of concentration, huh?

We also taught Johnny to play Skipbo tonight. I talked to him some about him helping me to get Kevin out of bed. I think it's great that he will watch movies and things with Kevin, but I really want Kevin up doing activities as opposed to lying down all the time. I feel confident that things will change after the plate is back in, but I want to start trying to break the habit of him being in bed constantly now so that it's easier when his head is fixed in a couple of weeks.

We gotta start somewhere, right?
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sat Aug 07, 2010 3:07 pm

SATURDAY, AUGUST 7, 2010
Day 799 - Aug 6, 2010

Today Kevin and I went to the VA hospital here in SA to meet some of the heads of the polytrauma center. They are in the process of building a new state of the art facility and we wanted to get together and discuss some of the problems that we had at the VA hospital in FL so that they can try to make sure those things don't happen here. I also wanted them to meet Kevin because reading about him could never clearly give the picture of how far he has come.

We had a really good meeting. I wish I could just go blindly forth and feel secure at a VA hospital, but unfortunately I can't. I don't feel it's any one person's fault, but the experience in FL and the constant red tape just holds me back a bit.

However, I am open minded and I am willing to give it a chance. I really do like the people that I met today and I am excited to tell you that some things happened right on the spot. For example - a new wheelchair was ordered for Kevin. The one he has currently really doesn't work for him anymore as his body shape and size has changed. They also ordered us two cushions for his wheelchair as the one he has now has been flat for over a year. It wouldn't stay inflated due to multiple leaks. And I am excited to say that they are planning to put a one-handed brake on the new chair as opposed to him having to reach across and struggle a bit to get the right brake on. They also spent some time teaching me how to repair parts of his chair. I have been doing simple tasks, but needed more guidance and they supplied it today.

So I am REALLY behind in answering questions, but I am only going to get to a few today. This post is already long, but I need to get started on this.

Ida - you asked if that was a Toe-Off brace on Kevin's right leg? Hehe. I had no idea, but I googled it and and yes - that's exactly what it is. He can't (or shouldn't anyway) walk without it as his foot turns in and under. I left a post on your blog about how happy I am that things are getting better for you! Yay!

Miss Em - thanks first for the shopping cart link. I got one and it has helped immensely!

Mary Neal - it's possible that some of Kevin's pain is from his teeth, but there's no way to really know. I am anxious (and so hopeful) to see if the bulk of the pain goes away once the plate is in. Gosh I hope so. I will mention that the reason some of his pain went away wasn't because he started seeing the dentist - it was because I added another dose of methadone to his daily cocktail.

Tina and the anon person - got the iBallz in the mail today. Wonderful gadget, huh? Kev is in his room playing on his iPad right now. He LOVES that thing!

Ok - I know there are tons more questions, but this is a pretty long post. I will try to get to the rest over the weekend.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Mon Aug 09, 2010 10:20 am

MONDAY, AUGUST 9, 2010
Day 801 - Aug 8, 2010

I am assuming that Kevin has a bit of a stomach bug. No sooner had I posted last night than he started vomiting. He had been feeling better today, but only til after dinner. He got sick once again after eating. He's been ok since then so hopefully he makes it through the night just fine.

I am going to just answer some more of the comments/questions:

To anon who asked if Kevin still has "airborne pride" - there isn't really a way for me to know. He doesn't really talk about it and as for him not wearing any 173rd clothing - it's because we just don't have anything like that. There are probably places on post near BAMC to buy clothing with the emblem on it, but I would have no idea where.

Anita - you asked if Kevin cleans up well and puts things away in an organized fashion. Oh my. He has EXTREME OCD. First let me say that he doesn't like to clean, hence all the arguing, but according to Kevin, it's my job to make sure everything is in it's perfect place. I have been making him do more and more, but you wouldn't believe how organized things are for him. His shoes have to be perfectly straight. His clothes have to be folded a certain way. His juice has to be in the same place in the fridge. The velcro on his brace has to aligned just so - no overlap anywhere. His remotes have to be lined up exactly the same every night. There can be NO crumbs or dirt on the floors (did I ever tell you that I used to have to clean the aisles at Walmart as we walked down them?). And things are organized by color most of the time (you should see him eat M&Ms - totally piles them up by color and eats one color at a time). I could go on and on here, but I think you get the picture.

Long-time RN - you asked if the moving traffic and all the visual stimulation of buildings passing by etc causes Kevin to need to sit in the car once we arrive somewhere. I can only assume so. He had gotten better about this before the plate was removed so I am hoping things go back to being better once that plate is put back in.

As for him closing his eyes while in the car - he can't really close them anymore. He is going to need surgery again on both eyes as his facial burns are still healing and pulling. He does try to do it though when he is really over-stimulated. He learned a long time ago to kinda roll his eyes back into his head to he can't see things.

GrannieEv - I would love it if you could arrange some samples of those essential oils! I sometimes burn candles in his room, but it's more just to freshen the smell as he keeps it all closed up all the time. If this works to help him sleep better, I will be a customer for life!

Ok - there are still more questions, but I am going to try to get some sleep. Like I mentioned, it was a rough night last night.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Tue Aug 10, 2010 11:07 am

TUESDAY, AUGUST 10, 2010
Day 802 - Aug 9, 2010

If you can believe it - today Kevin and Johnny left and went to a skate shoppe! Yep - they left me all alone here for a couple of hours and they went shopping. I could almost here this sigh of 'all is right in the world' when Kevin walked in the door with a new skateboard. Yes, yes - I know - he can't even ride it, but it is the one thing that he is most in tune with. The one thing that he NEEDS to have near him. I foolishly left his other ones in FL so he hasn't had one in his possession since we got here in Feb. Poor kid.

BUT - all is well now. And who knows...maybe it will get him working at PT and OT all the more with the goal of being able to ride it someday.

(oh and I already took a picture of it, emailed it to him and it's now his background on his iPad. You shoulda seen his face when I surprised him with that!).

So I got to stay home ALL ALONE!! Yipee!! I scrubbed the kitchen down and then prepped some snacks/lunch for the next couple of days and then called my parents and actually had an uninterrupted phone call with them. Amazing. I still can't believe he went and I am going to try to push Kevin to get out with Johnny every Monday. I know they are both anxious for the movie "The Expendables" and I think that's on next week's agenda.

And don't you think it's just a miracle that Kevin can go shopping kinda by himself? I mean, he knows how to use his debit card and everything. I am allowed to give him a monthly allowance out of his VA benefits and he does really well with it. Obviously we don't really do much so there isn't a whole lot of money spent each month, but it still just makes me so happy that he CAN go shopping and he CAN use his own debit card.

Ok, I need to get Kevin's bank accounts reconciled so I am going to sign off. Before I go though, to the anon person that asked about shirt sizes - we are both mediums.

And technically - it's only 1 1/2 days before Moe gets here. And Moe? Don't let me back out of vacation. I am having a little bit of anxiety at times about leaving him. I know Breezy can handle it, but still...

Oh shoot - and speaking of Breezy - I have had a few phone calls lately and everyone wants pictures of the preggo girl, lol. Here she is:
Screen shot 2010-08-10 at 11.33.06 AM.png
Screen shot 2010-08-10 at 11.33.06 AM.png (92.71 KiB) Viewed 9869 times
She is somewhere around 4 1/2 months pregnant. She thinks she felt the baby move last week one day, but now she is questioning it. She just went to the ob/gyn on Thursday and the baby's heartbeat is really strong. The doc also told her the baby is about 10 inches long and it's head is the size of a walnut.

I am still having all of her symptoms. I have been nauseous for a while now (I even threw up last week after eating pizza), I am constantly peeing and oh the heartburn! I have not had heartburn since I was pregnant with Kevin. I ONLY get heartburn when I AM pregnant. Totally not right for me to be having a sympathy pregnancy. I'm tellin' ya - if I feel even one tiny contraction...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed Aug 11, 2010 9:23 am

WEDNESDAY, AUGUST 11, 2010
Day 803 - Aug 10, 2010

Today I had to leave Kevin with Lea and go to a meeting about his CRSC - some sort of combat pay. Unfortunately we need all these papers that are gosh knows where and in what pile at the house in FL. The guy told me there is no time limit and that's a good thing as we won't be back to FL for quite some time yet.

So Kevin introduced Lea to the movie "Airheads" - one of those movies Kev watches over and over. I guess they watched it while I was gone and I'm sure that made Kevin happy. He likes watching movies with both Lea and Johnny - he is such a movie buff.

I made Dirt (a dessert) after I got home for our dinner tomorrow night. We are actually having company. One of Moe's friends from East Brady lives only a few miles away so both Mike and his wife Cat are coming for dinner. I have never met Mike, but I had met some of his family before. I am looking forward to meeting new people.

I want to get to a few more comments tonight. There is still quite a pile in my email.

To anon that sent the handwriting websites - THANK YOU! So cool!

Jessica - you asked if Kev still vomits a lot from the CSF and the answer is 'sometimes'. We go through spurts where he will vomit many times over a couple of days and then he won't again for a month or two. We never know when it's coming or what triggers it. We have pills that we stick under his tongue that will help with it, but he has to take them before it gets too bad. I always hate when I am sleeping and he gets sick because I don't get to him fast enough to help out. It's the reason we need a large capacity washer/dryer - I launder a lot of bedding!

Janna - were your son's expanders as large as Kevin's? Wow, huh? I had no idea what to expect with these things, but it sure is huge on top of his head! The PA was just saying last time we saw him too that he is glad Kevin didn't have any pain. He said some folks get severe headaches, but Kevin pretty much always has that so there would be no difference.

Less than 2 weeks to go!

Cathy M - I'm all for Kevin and I gaining independence from each other as well. I am quite sure that it will happen in the long run, it's just going to take some major adjustments on both our parts - more his though. If he could just get to the medically stable point we would just be so damn happy. So much more can be done to help him once he is stable.

Janet - we got the little emotion magnets in the mail! Those are just so cute, lol! Kevin really got a kick out of some of the faces, hehe. I am also thinking we have one of those sound machines here somewhere from 'the quilt lady' that comes to BAMC once a month. Wonderful woman! I will have to dig it out. I tried it right after we got it, but he didn't want the noise in his room. He's changed though in the last 6 months though so maybe he will be able to handle it.

Mike and Rebecca from the Post Gazette - thanks so much for the e-card! Hilarious! I miss you guys! Why don't you talk your bosses into letting you guys come to SA? LOL!

Allrighty then...Moe is texting me while waiting for her 6am flight. Yippeeeee!!! I need to give her a call and then try to get some sleep. Kevin's still wide awake though so I doubt it's gonna happen...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu Aug 12, 2010 9:15 am

THURSDAY, AUGUST 12, 2010
Day 804 - Aug 11, 2010

Yay! Moe is here! Her flight got in on time this morning and we just gabbed all day.

Kevin was supposed to go to therapy today, but he wasn't feeling well (he was in a lot of pain today) so we just stayed home and he barely got out of bed. I hate to say it, but in a way I was glad (not that he was in pain - just that we didn't have to go today). It was going to be a tight stretch to get dinner done if we had went to therapy.

And Mike and Cat came for said dinner and we had a great time. They were both such great people! It's strange to have another East Bradyite here in San Antonio, right?

So I know this post is out of whack, but I am exhausted. I didn't sleep at all last night and it has caught up to me. Moe's been sleeping about an hour already, but Kev is still raring to go. I am hoping to hit somewhere in the middle real quick - you know...that place where you are just almost sleeping, but not quite? Maybe Kevin will be cool with that. I don't know though. He is still in quite a bit of pain so we'll see. He didn't even eat dinner and he loves stuffing!

So I would like to ask a favor of sorts - one of the guys from the hospital in Tampa, Anthony, is in a tough spot. He had surgery and subsequently got a pretty bad infection...could y'all keep him in your thoughts? The next 72 hours are the most critical and I feel confident that he will be just fine, but still...it would be appreciated.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Wed Aug 18, 2010 11:12 am

WEDNESDAY, AUGUST 18, 2010
Day 810 - Aug 17, 2010

Today the speech pathologist from the VA came to our house for a session and it went so wonderfully. Kevin just did so well. She was doing word pairs (salt & ______, cat & ______) and Kevin got most of them without needing any help. She was also giving him instructions (touch your ear, point to the door) and he was able to do more of that than he could do previously. I was just so impressed at the gains he has made. It is so thrilling to hear him say words that no one has ever worked with him on.

It reminded me of the day last week (I don't think I mentioned this - sorry if I did) when we were driving down the road and he looked down at the clock and said "three o'clock". Now he knows his numbers and says them no problem, but we have never even tried to get him to say "o'clock". It just came out on it's own and we are seeing more and more of that lately. Exciting, huh? I told him tonight that I expect he will be talking pretty well within the next couple of years.

So we also discussed apps for aiding him in talking and today we downloaded one that looks good so far. It doesn't allow for customization though so I emailed the developer and asked if that option was going to be available in the near future. The problem with most of these apps is that you need to know how to read and type fluently and Kevin is just not there yet. He is reading fairly well, but he can't seem to spell - only recognize words. It makes it difficult at this point, but I feel sure as time goes by it will get easier for him.

So I am going to answer a few more questions as I am still so far behind:

To anon that asked if they have ever prescribed a sleeping pill to knock Kevin out - the answer is no. I don't really want him becoming dependent on any more drugs anyway, but the main thing is that they mostly make you groggy and unfocused the next day. We have enough trouble with his thought process and I would rather stay up all night that have him even more messed up.

It's not to say that he has never had any sleeping pills - we did use them a few times at the VA in FL, but they didn't always work for him anyway. Some nights it made things worse and he was wound tighter than tight.

Janna - I am hoping the nauseousness goes away when the plate is put in, but I am not holding my breath. It's a common symptom of TBI so it may be here to stay. Poor Zach (and you!) - I am so glad that things are better now!

Karen - how is your mom doing? And I would appreciate it very much if you could find out if that app Glenda uses has some sort of 'try before you buy' option. I just worry with him not being able to read/type as mush as necessary. If you don't have the time, don't worry about it - I will do it when we get out of the hospital.

Chalkie and Carol - Kevin is ADDICTED to that Fruit Ninja game you sent him! He and Lea played it for over an hour today and they were laughing and having a blast! I owe you an email and will try to get to it soon! Hope Carol feels well!

Hallie - Kevin isn't allowed to get on a skateboard until his plate is put in. We can't have him falling while his brain is unprotected, but once it's in - I suspect he and Johnny will hit a skate park as soon as they can, lol. And how is your husband doing? And one more question - you mentioned a Marcy - does she work at Kittanning hospital? I know a few Marcys that used to hang out at the store, but only one that works in radiology at ACH. If it's her - tell her 'hi' back! Or even if it's not tell that person 'hi' too, lol. But you'll have to email me her last name as I just am not sure who else it could be.

Ok, I have a few more, but will wait for another night.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Thu Aug 19, 2010 9:28 am

THURSDAY, AUGUST 19, 2010
Day 811 - Aug 18, 2010

Kevin has been sleeping for hours already. We completely wiped him out today. First his therapists worked him really hard (their words) because they feel he can do it. I was happy because he only called me one time to come back and explain what he was trying to say - they are starting to understand him and how he communicates - and I just really want him to be more independent. I am thinking that soon I will be able to try dropping him off and going somewhere while he has therapy. Of course, we may end up starting over once the plate is put in as we don't know how long it will be before he can go back to therapy, but we'll see.

But anyway, after we left therapy we went and had a quick bite to eat. We really had to eat quickly though because we decided to see a movie and it was starting in an hour. Traffic here in SA is always an issue so we needed extra time to get there as it was the 5:00 showing. We made it just in time though and I got Kevin all situated and run back and get his snacks and still got to see a few of the previews.

Did you all know there is a Jackass 3D coming out? Yikes! Can't stand that stuff, but Kevin loves it. Looks like he and Johnny will have to see this one on their own.

After all that, I was too tired and wanted to go home. I needed to grab a few groceries, but opted to wait until tomorrow. Kevin wanted to go shopping, but I held firm and we just went home. He fell asleep pretty quickly after we got here and has been sleeping since. Poor kid.

And now I think I am going to try to get some sleep. Might as well take advantage, right?
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Fri Aug 20, 2010 10:47 am

FRIDAY, AUGUST 20, 2010
Day 812 - Aug 19, 2010

What a horrid day. You just can't believe how bad it was and I'm not going to focus on all of it and explain each disgusting detail, but I will tell you how it ended.

We went to return movies at the family center and then went to the store to pick up milk and stuff. Johnny went with us and he was to leave at 10pm. So we got back to the apartment right at 10:00 and I put the key in the lock to unlock the door and it wouldn't turn. Well...that's not true...it would turn, but only as if to lock the door. It would not UNLOCK it at all!

So I called the emergency maintenance line for the apt complex and I also called Breezy to have her come over too. I had a bad feeling because the elevator was down over the weekend again and when I called on Sunday night (after Moe and I got here) I got no response. When I called the office on Monday morning, they seemed shocked that no one called me back the night before. I did wait a few minutes tonight, but when they didn't call back, I did decide to have Breezy run over with her key (she lives a half hour away). Thank goodness I did too because nobody has ever called me yet - 5 hours later (and I did call and leave more messages - none of them friendly!).

I just don't know what's going on here, and frankly - I don't care. There is just no excuse. What is the sense in having an emergency line if no one is manning it?

Now tomorrow is a really busy day for us, but I have got to find the time to go to the office and make sure they understand that this was the last straw for us. There are just too many situations here - heck, the elevator has been down 3 times in the 4 months we have been here alone. Totally unacceptable!

And you know what? They are just going to have to pay Johnny's wages as he was an hour late getting out of here and I don't think Kevin should have to foot the bill.

I am still pretty mad! Hopefully I can sleep though as that's where I am going right now.
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Chalkperson » Sat Aug 21, 2010 1:57 pm

SATURDAY, AUGUST 21, 2010
Day 813 - Aug 20, 2010

We had a very interesting day today. First, Kevin had another fantastic therapy session. While there I asked the therapists to help me work on Kevin being able to say "I want..." It's my goal to start introducing more sentences as opposed to single words to ask for things. So now he has to say "I want strawberry milk" or "I want lemonade". So far, so good, but I still have to usually nudge him with the beginning sounds.

After we got home we had a film crew come to tape an interview with myself followed by some interaction between Kev and I. If I remember correctly it is going to be used in front of Congress and will be submitted to the media, hopefully garnering interest in the issue of caregiving. The folks that came were all so nice and Kevin did really well with them - showing off all his gadgets - especially his iPad!

And then tonight Kevin actually sat in the living room with me and watched not one, but TWO movies! We watched "She's Out of My League" first because I noticed his friend Grant said he liked it on Facebook one day and then Kevin had taped "Stomp the Yard" and we watched that one next. I figured if Grant liked the first movie, Kevin would like it too and he did! (thanks Grant!!) Kevin really loved all the Pittsburgh stuff in the movie too (it was filmed there). He was so excited to see PNC Park and the Pens playing. It was just a little taste of home for both of us really.

And now the boy is trying to get settled. I am hoping for a very lazy weekend as it will be rough once he's in the hospital. I know I will be staying there Monday night with him, but even if I come home at night the rest of the time he is inpatient - the days are just so long.

So anyway, here's to doing nothing the next two days!
As you can see from the passage in Bold, Leslie is receiving recognition for her incredible work looking after Kevin, there is a Bill going thru Congress that would pay the Mothers/Family Members who look after Quadraplegic Wounded Warriors like Kevin a wage for doing so, at present they get nothing, even though they give up their Jobs/Life/Friends to look after their sons, in fact she is not even allowed to spend one cent of Kevin's money on herself, (not even a haircut)...Leslie has been quite vocal on this issue and is very highly regarded by the sponsors of the Bill, I feel honored to be her friend and i'm so proud of her...
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Mark Harwood » Mon Aug 23, 2010 5:46 am

"...Mothers/Family Members who look after Quadraplegic Wounded Warriors like Kevin...at present...get nothing..."

Good grief.
"I did it for the music."
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Re: Updates on Kevin, CMG'S Wounded Warrior...

Post by Donald Isler » Mon Aug 23, 2010 10:35 am

Twenty years ago I met an Israeli veteran of the 1982 war in Lebanon. He had lost an arm and 75% of his vision in the war. He had previously played guitar, but you need two hands for that, so he was studying left hand repertoire for the piano at a program I was also attending. When I visited him a month or two later in Israel I discovered that, as a severly wounded veteran, his country had given him a very nice apartment to live in, and even a car for others to drive him around in. Mentally he was fine, so he did not have many of the problems Kevin and his mother are facing. But if tiny Israel, population 7.3 million, can do so much for its veterans, wouldn't you think America could do at least as much for our veterans and their families?
Donald Isler

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