August 16, 2012

It's been a while since I've written and mostly things have been good. I will start with the bad though, so that we can end on a good note.

Two days ago, Kevin was laying in bed and we were talking and he got this very strange look on his face. It happened twice within 2 minutes and it took me almost five minutes to figure out that Kevin was telling me his body went 'paralyzed' for about 10-15 seconds both times. I took him to BAMC and after roughly 11 hours and multiple tests - they sent us home.

Although nobody knows for sure, they agreed with my thought in that Kevin had his first seizure. Luckily they were both very mild, but still...where did these come from? Why now, after all this time?

The docs did find that Kevin must have some sort of infection though because his white blood count was high, he has blood and protein in his urine and his kidneys aren't working correctly. He also had VERY high blood pressure while there and I think it's time something is done about that as it's always just a bit high.

So we were sent home to meet with our primary care physician and now I'm trying to get him in to see someone. The VA clinics can't get us in before 6-8 weeks so I put a call in to our polytrauma doctor to see if she can either get us in to see someone or take care of figuring out the problem herself. My last resort will be to just find a non-VA doctor and take him there.

I will let you know what we find out.

Previous to all this - Kevin has been doing very well! We all went to Florida for a few days (Breezy and Christian too) and surprised everyone by just knocking on the door. They had no idea we were coming and the looks on their faces were priceless. It was a really great trip and I'm glad we went as my dad is deteriorating. It was really great seeing everyone as it's been close to a year since we have.

Kevin has also been accepted into the Wounded Warrior Project's Independence Program. They will be sending someone out to work with Kevin on becoming more independent. I don't know much more than this yet, so I'll have to come back with more info later.

And we were supposed to go back to Aspen, CO for a brain injury retreat in about 10 days, but with the seizure activity, I think I'm going to cancel our trip. I feel horrible as Challenge Aspen has already purchased our airline tickets, but Kevin's safety is much more important.

Other than this, Kevin really is doing fantastic. He is talking up a storm and learning new things daily. I am quite proud of him and can only hope whatever is going on is just a temporary thing.

And to end, here are a couple of pics of Kevin. One with my mom walking along the little boardwalk that was at the hotel we stayed in.

July 15, 2012

We had our first party at our home last night! It was a smashing success and both Kevin and I enjoyed ourselves. I think roughly 30 people showed up and it was nice to see our friends merge and get to know each other.

We still don't know too many people, but we had some of our neighbors over and some folks from the hospitals and even more amazing - my friend Karen and her husband Mark drove down from Pennsylvania earlier this week.

We are having a blast with them being here. Mark has really stepped in and done all kinds of 'manly' things that I just don't know how to do around the house. I even had him teach me how to climb up into the attic and change the air conditioner filter. Sadly, I didn't even know that needed done.

In other news, we did have an appt with the plastic surgeon at BAMC this week to discuss more surgery. Kevin's wants to have another fat graft done on his head (where they take fat from his belly and inject it over the plate in his head) and he wants to go see the surgeon in Pittsburgh that did it the last time for that.

He also wanted to have the large graft below his mouth down his neck medically tattooed to match the skin on the rest of his face, but while doing a video conference with the surgeon who did the original graft work, we all decided it wouldn't be a good move. We might be doing some more work around his eyes, but it will be a while. We haven't had major surgery in over a year (I think) and I am appreciating this time out of the hospital.

Kevin also had Botox done a couple of weeks ago; this time focusing on his wrist and fingers. The doc usually did about 11 or so small shots of Botox, but this time he did 5 'big' shots of the drug. Kevin's wrist is really turned in quite far so we are hoping this makes a hug difference to getting his arm/hand/wrist straightened and uncurled. Keep those fingers crossed!

That pretty much sums up what's been going on. To end, here is a pic of Kev and Christian. Those two have such a special bond - Christian always grabs Kevin and doesn't want to leave. Kevin is also the only person he will give an actual kiss goodbye to.

Day 1488 - Jun 25, 2012

I know I haven't written for a couple of weeks, but there really just isn't much to say anymore. I think my posts will be fewer and farther between from here on out and I'll only come on if we are doing something fun or if my feelings just need to be vented. I will come on also if too long goes between posts and just upload some pics of the family and catch everyone up.

So anyway, Kevin went fishing with Johnnie on a trip with the rec therapist from the VA. He had a lot of fun and I guess he caught 7 fish - one of them being the largest on their boat (I think it was a 21 inch trout). This was a HUGE milestone for us as it was the very first time Kevin went somewhere overnight without me. Johnnie has been with us for about 2 years now so I think he is fully capable of handling Kevin's needs and he did well. They had a great time together and I think Kevin only called me maybe 20ish times? This is VERY GOOD for Kev. (although one of those times was when he was about a mile from the house and he called as a joke to tell me he wanted to come home, lol)

Here is a pic of the guys on the boat; Kevin, Johnny and Jose, the rec therapist:



My friend Aggie is here visiting from Ohio this week and we skipped out quite a few days too. We are having a wonderful time and I'm gonna be sad to see her go home tomorrow.

So to end here are a couple of pics. The first is little Christian. I had bought some shelves for my scraproom and he was helping me put them together. He apparently is going to be a builder of some sort because he had an absolute blast.



This one is of Kevin. I forgot to mention that we had went to an Astros game while in Houston with Impact A Hero. It was a blast - we were all in a box suite with a full meal served and Kevin really enjoyed himself.



And to end, I have to show you guys a layout I did with a photo of Kevin when he was a little boy. It's the pic you need to see - he was just so darn cute!



That's pretty much it! We've just been hanging around the house doing a whole bunch of nothing so I guess I'll catch ya next time!

Day 1475 - Jun 12, 2012

So last weekend was a very special one! Kevin, Breezy, Christian and I drove up to Houston where Kevin was inducted into the Impact A Hero Wounded Warrior's Hall of Fame! It was a most touching event and was made even more so as Joel was also inducted!

Oddly enough, the day of the gala was the fourth anniversary of Breezy and I meeting Maritza and Jose at BAMC. This made it an all the more emotional weekend as it was like we all were back together again.

So anyway, when Kevin was called the three of us went up on stage to make a speech and Breezy and I were all teary. I couldn't tell you what I said, but when they handed Kevin his crystal glass, he held it up above his head like Rocky. You can see a photo on the rolling headlines here:

Impact A Hero

And here is a photo of us with the Taveras!



It was a truly amazing night and I want to thank Dick and everyone else at IAH for inviting us!

(We were supposed to go for the whole weekend, but Kevin wasn't feeling well so we weren't able to - hopefully next year!)

Day 1463 - May 31, 2012

Today was Kevin's Alive Day! It was 4 years ago today that he was attacked; 4 years of some honestly horrific events and 4 years of some truly amazing events.

I have to admit that I have been in a pretty funky mood the last week just knowing today was coming. Sometimes it's hard to see the good because life on a day to day basis isn't very fun, but I do know how lucky we are! I do know my son is alive and I do know how far he has come!!

This has actually been a pretty good year for us in the scope of things. Kevin is truly stable now and able to travel to some fun places. Do we still have issues when traveling - sure we do, but we aren't going to let it stop us. Kevin still gets overstimulated, but it's not like it used to be. He can go for hours now and we usually just hang out in the room the whole next day.

So to name a few places, we went to LA and met some awesome folks out there, to the Grand Canyon and Last Vegas and Kevin even went snowboarding - who would have ever thought he would do something like that? I can still hear the doctor's saying that he wasn't going to live much longer. Guess we showed them, huh? LOL.

Anyway, today was not your normal day and this day will always have good meaning as well as bad now. You ask why? Well today my daughter purchased her very first home!! It's a very nice starter home not too far from her work and Christian's daycare. She got the call late last night that she was closing at noon today. We hurried up and got all their things moved to the new house tonight and didn't get home until almost 1am. We are all beat!

That being said, I am going to sign off, but before I do - I want to ask Andrew and James to continue to rest in peace. Keep watching over both Kevin and Daniel as I know you have been and I hope your families found some comfort today somewhere. Forever in our hearts!

Day 1460 - May 28, 2012

I just want to quickly come on and wish everyone a wonderful Memorial Day! A special salute goes out to Andrew and James and their families for their ultimate sacrifice. You will forever be in our hearts!

Also thank you to all our past and present military personnel. Life would not be as it is for America if it weren't for each of you!

Day 1453 - May 21, 2012

We had a fantastic few days this past week! We went to Las Vegas and the Grand Canyon, along with Kev's best friend Ronnie and his girl Marissa and even Moe came along too! This trip was my Christmas present to Kevin and we were supposed to go Jan 4th, but then Kevin's grandma was sick so we postponed it. We decided to wait until Ronnie graduated from college and the weather was nicer. I'm glad we made the decision back then as Louise did pass away.

Putting that sadness aside, we had a really great week! We only went for a few days, with one of them spent in Arizona at the GC! None of us have ever been there and it was so impressive to see in real life. I hope to go back someday and really spend some time there - a few hours just wasn't enough.

So here are some pics and videos:

This first one is of the kids while we were hanging out at the pool one evening. We stayed at the Golden Nugget on Fremont St as opposed to being on the strip. The strip is just too big and too busy. We liked the slower atmosphere down here and the price couldn't be beat - $35 a night!!


Here also is a video of Kevin coming down the waterslide. It was encased in a tank of sharks - they all loved it!

Always joking around!

Here the kids are riding the gondola at the Venetian Hotel. We only went up to the strip for a few hours one afternoon. It was just too much walking/pushing Kevin.

Us just goofing off.

The next day we drove the 4+ hours to the South Rim of the Grand Canyon.

(Kevin was teasing me because I was too scared to let him get close. I kept holding him back afraid he would fall over - like I'm gonna be able to hold him back, right?)









I wanted to stay so badly to see the sunset, but the kids were hungry so I didn't get to. Next time...

Then on the day we left we were down on Fremont St and there was a charity event there. We got to meet the original Bo Duke (I thought Moe was gonna just die, lol. If she coulda, she woulda brought that man home with her, hehe) and we also got to meet Erik Estrada from Chips. There were a bunch of others there, but these two guys were awesome with Kevin!






And to end here is a video of the Kevin, Ronnie and Moe zip lining over Fremont St. They loved it!!



We had a great time - most importantly because we got to see our friends! I think we both needed that more than anything!!

Day 1446 - May 14, 2012

We had a pretty crappy week! Christian brought something home from daycare last weekend and after he went and passed it on to Breezy, she passed it on to me and then from me it lovingly went to Kevin. It had to be some kind of stomach bug, but it sure has taken days to get better. I know I am still having bouts of a queasy stomach and Kev has mentioned it too so hopefully it leaves us pretty darn quickly. We did go to dinner tonight down at Tony Roma's on the Riverwalk. I still can't eat too much and Kevin didn't eat as much as he normally would have either, but we still had a good time. We had to at least get out of the house for a while. There really isn't anything else to say because we both pretty much puked and slept all week. The first time we even left the house in days was last night when I put us both in the car and went for a drive. I think we both had a touch of cabin fever so I wanted to blow the cobwebs out. I guess I'll just talk to everyone next week. I hope everyone had a great Mother's Day!

Day 1440 - May 8, 2012

Thanks to everyone for all the comments and emails. I am feeling better, mostly because my friend Beverly came for a few days for a visit. We had some girl time; even going out to a nice dinner and down to the Riverwalk for a bit. I think that's part of my problem - I was always a very social person before all this happened and I don't have any friends here. There's just nobody to go do anything with so I just stay home with Kevin all the time. Anyway, things are going better so we'll just move on. Janet - I know you asked about Christian and he is doing somewhat better. They did find that his body isn't creating certain anti-bodies so they gave him a special vaccine. I would love to say he hasn't been sick since, but last weekend he was running a temp of over 105. The ER (like always) has no idea why so they just send him home with an antibiotic. Kevin is doing phenomenally well. He is saying well over a thousand words and is even spitting out some sentences. I love it when he just says things on his own; more often than not he's having to think it through before getting the words out - which is really a good thing. Anyway, I will write more next week as it's late and I want to get some sleep.

Day whatever, Apr 29, 2012

Sometimes you forget, ya know? I mean sometimes you're all caught up in the daily junk that is what we call life that you forget something that changed it all. We have just been so busy; I am really struggling to take care of Kevin and have a little something for me - my business. But tonight I had a few extra minutes and thought to myself 'let's start unpacking all those boxes in the office - you know the ones full of paperwork and mail from the last 4 years?'. So I started going through box after box and opening letter after letter, rereading card after card. I came across notes on how to do certain projects at Armstrong Cable when I worked there, Kevin's enlistment papers, I found so many cards and letters from people through the years and notebook after notebook filled with notes about Kevin for about the first year of this journey. Like the day he had his stroke and what we were going to do about the meningitis. Then there was the 'list of surgeries'. That flat out made me laugh because there were only about 12 on there. There was also a ridiculously long list of medications and on and on. I was doing well really. At this point anyway. Kinda chuckling at some of the stupid things I wrote. And smiling at some of the letters we received. I was thinking about how much more I know now than I did then. But then I opened this folder and staring back at me was my son, Kevin. In a nice, big 8x10 photo. From before. When he was normal. When life was normal. IT'S TIMES LIKE THIS THAT I FLIPPIN' HATE WHAT HAPPENED TO US!!!!!!!!!! Don't get me wrong - of course I am so happy that we have what we have. Kevin is doing unbelievably well, but damnit - why still does it have to be this way? Why couldn't he have just lost a toe or something dumb like that? Why can't he still be in the Army (or slinging burgers at McDonalds - I don't care)? Why can't I have a normal 8 hour a day job instead of a 24 hour one? Why can't we be near our friends? And family? Why can't Breezy be making almost double what she's making now because she had a GREAT job in PA with GREAT benefits! And we won't even discuss how I would be making at least triple what I do now and I sure wouldn't have to have 'inspectors' come to my home to make sure I'm doing it right. Then there's all the damn doctor's appointments. It is frickin relentless! We are both just so tired of it all that I haven't even called the therapist to resume work on his hand since we came home from Colorado. You know what I'd like? JUST ONE MONTH OF NO HOSPITALS OR DOCTOR'S OFFICES!!!!!!!!!!!! That's all - just 30 flippin days. It is really too much to ask for? And lawyers - PLEASE dispose of the need for any of them. It is ridiculous how they get tens of thousands of dollars a year from Kevin! Talk about raping an incompetent person; the court system surely does that! Ack! It really is just too much to bear sometimes. I usually do so well; mainly because I am kept too busy to think much about it, but tonight - seeing that picture just slammed a fist into my heart. It killed me to remember the boy I had before, the life ALL OF US had before. If I could only turn back time...

Day 1427 - Apr 24, 2012

I can't believe I forgot to write again! My mom called me earlier and asked where my post was - yikes! (got your email too, Opal!) Honestly, part of it is that we are just living our lives now. Nothing majorly exciting going on at all. We mostly took it easy this week so there isn't much to report. I do have some pics though! I picked Christian up at daycare one day and the field out front was in full bloom. The one of Kevin is in our backyard. He was standing next to the neighbor's fence.

Other than this, I just don't have anything to talk about so I guess I'll catch ya next week.

Day 1419 - Apr 16, 2012

So to finish out some pics and videos of our wonderful week in Aspen, here are 2 videos of Kevin climbing the rock wall.  Unbelievably, Kevin pulled himself up the wall with his one arm.  He now weighs about 217 pounds, add to that all the gear, and he amazed me that he could do it!

The first video is long because it's all but the last darn seconds of him climbing the wall.  My finger slipped and turned it off just as he was ringing the bell, but I quickly got it going again.  You gotta love his new quote right at the end after ringing the bell, lol.






Piece of cake, right?  He sounded like he was dying, lol.

And here is the final photo of our trip.  It's Kevin receiving a medal for a job well done.

A big thanks need to go out to the VA for putting such a wonderful trip together for these guys/gals.  It was a great week full of fun and camaraderie and I hope very much that Kevin will go back next year!

And on to the real world - not too much happened this week for us.  Kevin's taking it easy while his toe heals from the toenail removal.  He's wearing a walking boot which tends to slip off rather easily so we aren't doing too much.  I don't really know how long he'll have to wear it, but hopefully he can put his sneakers on soon.

That's pretty much it so I'll catch y'all next week!

Day 1412 - Apr 9, 2012

I hope everyone had a great Easter!  I ended up keeping Christian all night as he is very sick again.  His whole mouth is full of blisters (something contagious from daycare)  and he has not been able to eat or drink for days.  He's been pretty miserable, but this morning he woke up and had no fever so I made him not 1, not 2, but THREE scrambled eggs for breakfast!!  He's on the mend.

So we did manage to get just a couple good pics of him yesterday.  Breezy brought some bubbles up and we played outside for just a bit:

And here he is finally sleeping at about 2am.  The doc suggested we give him some Benadryl to help him sleep and I gave it to him at about 1am.  He was just playing away in Uncle Kevin's room with one of Kevin's stuffed angry birds animals and he just set it aside, laid down and in one second was sound asleep.  This was the first respite the child had for two days - poor thing!

But back to Kevin - I have more photos and videos of our fantastic trip to the Winter Sports Clinic.  Here is the gondola that we went up the mountain in in the town of Aspen (pic taken from inside so excuse the glare).  It was one of the day trips:

And once we near the top of the mountain we got to ride in a snow cat to the very top of the mountain.  It was a very bumpy ride and Kevin didn't want to get out so I snapped a pic of him still inside.

And the view from the top:

So the next day Kevin went snowboarding again, this time with his new buddy, Tim.  Tim was a great instructor and the two of them hit it off wonderfully!  Here are some pics and video:

This is Tim clobbering Kevin, lol.  What fun they had!!

Rene' - here's one for you!  It's Kevin with Sarah and Ted!

And here's some video of Kevin and Tim snowboarding:





Ok, I think this post is long enough too. I will come back next Sunday with the rest of our fabulous trip!

I do want to quickly say that we finally got in to see the podiatrist on Friday. Kevin's ingrown toenail was very infected and I asked them to just remove the nail. This was the third time it's gotten infected and with his weakness in his right leg/foot, I can't see it getting better for good. This will take care of it once and for all!

It's obvious Kevin had a great trip, right? YAY!!!

Day 1404 - Apr 1, 2012

Well we really had a great week!  Yes, I can be honest and say that Kevin didn't want to go when it came down to it and the first few days we were there he said he'd never go back, but by the end of the week he was having a good time and he started telling folks he would be back next year!

Y'all would have been really proud of him!  I try so hard to keep Kevin active and entertained, but he generally just doesn't want to do much of anything.  But he did agree to take part in the activities this last week and it all started with some snowmobiling!  (Oh - and he picked up MANY new words and phrases while we were there!!)

First though, here is a pic of Kevin in this huge chair that he just HAD to climb on, lol (some guy walking by helped me lift him up onto the chair as Kevin was struggling to do it himself):

And now here are some snowmobiling pics:

This next photo is of Kevin with Jose', the rec therapist from the VA hospital here in SA.

As you might have noticed, we tied Kevin onto the snowmobile as there were so many bumps and with his right side being weak, we didn't think he could hold himself on it.  They are hoping that he can drive one solo next year too, but we'll see. 

The next day Kevin got to snowboard!  I wish I could say he had a great time, but he didn't.  Unfortunately we were given an instructor that just didn't understand the needs of someone like Kevin.  He just kept saying that snowboarders were lazy and he kept putting Kevin down.  I was keeping my mouth shut, but Jose' actually saw it too and he made sure that Kevin had a different instructor for the other two days he got to board.

Honestly, Kevin actually quit after this day and turned in his boots and his board.  He just wanted to go home.  It took everything I had to get him interested enough to try again.

There is one little video here of Kevin boarding by himself that day though.  I had to beg the guy to let him try on his own.  I don't think the instructor realized that the 100+ falls were mostly his fault as he was running next to Kevin and couldn't keep up with him so he was pulling him down.  Ack!  It doesn't matter, but it was just so frustrating at the time:






And some pics:

 I just can't believe that my son was actually on a snowboard!! 

This is the bottom half of the bunny slope that Kevin boarded down.

Ok, so I think I am going to have to come back and finish up with more videos and photos another day this week.  I am uploading a video and it still has over an hour to go, so I think I'll end here - halfway through the week and get the rest either later this week or next Sunday; depending on what our schedule ends up being like.

And I'm sorry, but I am not editing these photos yet.  I'm too tired, lol.

Day 1397 - Mar 25, 2012

Boots.  Check.  Gloves.  Check.  Coat.  Check.

Guess what Kevin is doing this week?  Kevin will be SNOWBOARDING!!!

Yes, we are in Aspen, Colorado for the whole week for the VA Winter Sports Clinic for paralyzed veterans.  This is the first time that Kevin agreed to do something with the other vets and I am hoping that the camaraderie will instill a desire to do more with them - maybe the paralympics (sp) or something like that.  He needs a goal - something to work toward and if anything is going to inspire him - this is it.

Anyway...we flew in yesterday and although I was expecting snow everywhere - there is none at all until you get up the mountain (I believe it's being 'made' because nearly every other mountain is dry).  Personally - I am really happy with the 65 degree temps as I am quite spoiled now and don't do well in the cold, lol.

So today we just registered for the event and then Kevin was fitted for snowboarding boots. We aren't sure how it's going to work because he will be boarding without his brace -  it just wouldn't go into the boot at all.  I made the decision to just let him go without it because I am thinking that the boots are sturdy enough to keep his foot correct.  Keep your fingers crossed anyway.

So tomorrow Kev will be snowmobiling first and then maybe doing some rock wall climbing.  There are MANY events here for these guys/gals and I have to say - everyone is so nice!  I think there are over 300 disabled veterans and I believe over 700 volunteers.

What's been really great is having folks come up to me that read my blog and meeting others that I know of throughout the brain injury world.  I am excited that there is a TBI group meeting on Tuesday night too and I think it will be fantastic to get to know some of these folks even better.  It really is a small world.

And speaking of a small world - Kevin and I met a man last night that is our old neighbor's brother-in-law from East Brady!  Joy - it was great meeting Kevin!!  And what are the odds, eh?

And to finish - I want to thank Rene and MOAA for all of the ski gear and other necessities for both Kevin and myself (love you, Rene!!!) and I also want to thank Rosie at Help Our Wounded for the hotel room and food.  This trip wouldn't be possible without your help!!

There should be LOTS of pictures next week!

Day 1390 - Mar 18, 2012

Well Kevin is just hanging out with all kinds of famous people lately!  We had to go to the docs at BAMC one day this past week and guess who was there visiting?  Some of you ladies are just gonna swoon...

Yep - JR Martinez was there and what an absolutely awesome guy!  He came through BAMC years ago and feels it's home - just like we do.  (for those of you that don't know who he is, he is a wounded soldier and he was the winner on Dancing with the Stars last year).

Other than this, it was kinda a slow week.  If I remember correctly we only had the one docs appt - which in itself is news, right?  LOL.

I do have some video here of Kevin and Johnnie skating on the back porch though:



Other than this, I don't really have anything to say, but since it's been a long time since I posted some pics of our little guy Christian, I am going to leave you with some of those.  To give you an update on him, we came back from LA and he was walking all over the place.  He is still sick ALL THE TIME and he has an appt with a hematologist this week.  We really need to try to figure out what is wrong with him and get him well.  Here's hoping the specialist can figure it out.  He also has a MRI scheduled and a bunch of other tests.  Keep your fingers crossed that we find the answer soon.  He's just too darn cute to be sick all the time.

He's getting so big, isn't he?