April 2, 2013

I know...it's been forever since I have written!!  Things are always hectic, but running a business and taking care of Kevin are both full time jobs and trying to do both is exhausting.

Anyway, so many things to share.  First (and you might want to sit down for this one) - Kevin actually has a JOB!!  I got a call from a producer doing a PBS special and he came down for an interview.  We went to lunch at a little cafe just a few minutes from the house and I noticed how well the employees treated Kevin (apparently he eats there often with Johnnie),  As we were leaving, I asked the manager if there was anything that Kevin could do there.  She discussed it with the owner and sure enough - they had Kevin go in for an 'interview' and offered him the job.  He is working about 5 hours a week and I am so excited for him.  He is doing so well in his recovery and needs to do 'normal' things.  This is a huge step for him and I am hoping it works out long term. 

I think the most awesome thing is how well Kevin is talking.  We recently went to the BAMC Burn Unit's 10th Anniversary Event and people even commented on how well he is speaking.  New things are just popping out of his mouth all the time and it's funny because even he will be surprised that he can say something.

I really think that his talking better has a LOT to do with the WWP's (wounded warrior project) Independence Program that Kevin is partaking in.  We have a speech therapist come a couple times a week and he works with Kevin.  He has made amazing strides in the last couple of months.

Things aren't just perfect though.  We were supposed to go home to East Brady for the Easter weekend and Kevin ended up in the hospital for a few days.  It was the same as last time - intestinal blockage.  I guess we will be having this issue the rest of Kevin's life.  They told me his insides are just a mess (no surprise really) and he has so many adhesions that his intestines can have problems constantly.

Kevin is also still having 'seizures'.  The docs can't find evidence of this because they don't occur often enough to be seen on his already messed up EEG.  Obviously no brain study on Kevin is going to be normal, so the neuro-seizure specialist told me he 'assumes' they are seizures and wants to put Kevin on an anti-seizure medication.

My first instinct was 'absolutely not' as they are so altering of a person's personality.  But I recently read on article that stated that 1 in 3 epileptics die not from the seizure - but of the fall during one.  Crikes.  I called the doc right away and had them send the meds.

We haven't started them yet though. I was waiting until we came home from Pittsburgh.  I guess I should do it now...

And I think I'll end with some pics of things that we have been doing.

Here's Kevin and Johnnie with the Harlem Globetrotters:

Here is Christian at his 2nd birthday party:

And hunting eggs on Easter Sunday;

Here's Kevin goofing off with my friend, Aggie, who came down over Christmas break:

Here is a photo of Breezy and her family at Christmas:

And last, here is Christian taking a nap on uncle Kevin:

I will try so hard to come back more often.  I hope everyone is doing well!

Dec 25, 2012

I just wanted to pop on here and wish everyone a very merry Christmas!

Video of Kevin

Here's the video I mentioned in my post earlier today:

Nov 11, 2012

Happy Veteran's Day to all of our past and present military!  I sure hope everyone had a great day filled with a nice free meal somewhere!  For the first time we actually left the house on this day.  We know it's usually really busy at all the local restaurants and it was always kinda a struggle with Kevin's over-stimulation, but we rarely have that problem anymore (I know how to head it off now) and Kevin wanted to go to Olive Garden.  So we loaded up at about 5:30 and headed out.  The wait was only 30 minutes so we unbelievably got a seat at the bar and Kevin enjoyed a Bud Light while we were waiting for our table.  He thoroughly enjoyed his Sausage Rustica and I enjoyed the small bill, lol.

So I know I mentioned uploading some pics of Christian as a cowboy for Halloween.  Here are those pics:

 

 

Isn't he just the cutest little cowboy?  LOL!

I also mentioned recently that I would try to get some video of Kevin just rambling.  It's not easy to come up with things to talk about into a camera, so I just tried to be normal and have him not think about it.  I think you will all be amazed at how well he is talking now.  Thinking too.  The other day I asked him how much 10% of 1500 was and he didn't even have to think before saying 1 -5 - 0.  He's not good at saying one hundred fifty, but he can say the numbers out in a row.

Anyway, the video has taken 6 hours already to upload (and I fell asleep in the middle of waiting so my post is a day late) and it's still not done.  I will come back and post a link to the video as soon as I can.

Nov 1, 2012

Well I haven't seen Kevin this excited in a very long time!  Tonight he (unbelievably) tried something new - he went to a Spurs game.  He has NEVER been interested in basketball, but when I suggested he and Johnnie go, he said "ok".  Believe me when I say I jumped right to the Ticketmaster website because I can hardly ever get that kid out of his bed.  He just has no desire to do anything.

BUT - he did go tonight and had a fabulous time!  He came home just about stumbling all over these new words trying to tell me they were tied until the last 5 seconds and the Spurs took it home.

To add to it, he got 2 coupons for free Big Macs and a t-shirt.  He loves his Big Macs so he was really happy about that too, lol.  He even took a pic of the coupons with his phone and texted it to me!

In other news, Kevin had Botox recently and we had to go today and have his splint reworked.  He is making gains on getting his hand opened a little bit.  It's always been pretty clenched, but it's actually loosely turned in most of the time now. 

We also had our second session of laser hair removal today.  That is very painful to watch him have done.  He is just jerking all over - I am guessing it must sting pretty badly because Kevin doesn't usually feel pain too much.

So we have company right now.  We met a woman named Opal when we were staying at The Family House in Pittsburgh last year.  She came down on Tuesday to stay for a week and we are having a great time.  Kevin is enjoying harassing her, for sure, lol.  We actually went out for dinner and shopping tonight while the boys went to the game and that was really nice for me!

And that's about it.  Once I get the Halloween pics downloaded. I'll post them.  Christian sure was a cute little cowboy!

Oct 21, 2012

Breezy was here last night and lectured me because it's been so long since I wrote for you guys.  I am really sorry, but I have just been dealing with the loss of my father.  I am still struggling for the most part, but I am functioning.  I am now to the point where I don't even cry every day.  I just really miss his voice and his sense of humor.  Every day I called and asked 'how are you feeling?' and he would always respond 'miserable'.  It was a private joke between us because I would lovingly start lecturing him that attitude is half the battle and if he would just say 'great' he might actually FEEL great!  We always laughed about it and I just miss hearing the word 'miserable'.

I also just feel horrible that I didn't call him the night before.  I usually did every night and got sidetracked and didn't call that night.  It makes me mad at myself because I, more than anyone, know that every day could be the last you see the one you love.  Please remember those words (I'm speaking to myself too!).  We all treat life so cavalierly and we really shouldn't.  Geez!  I won't repeat - you've all heard me say it so many times, but just remember to hug and kiss the ones you love and make sure they know you love them.  My dad did know it.  He knew I loved him and I try very hard to think of that rather than the fact that I didn't call him that night.  

So we haven't really been doing too much, but we did go to the Botanical Gardens here in SA a couple of weeks ago.  Here are some photos:

It was really hot that day so we could only stay a couple of hours.  Kevin was a real trooper, but he doesn't do well in the extreme heat.

And speaking of Kevin, he is doing very well.  I will have to take some video of him soon so that y'all can see how well he is talking.  We had company last weekend and the person hadn't seen Kevin in such a long time.  They couldn't believe how far he has come.  We are just so lucky, aren't we?

He is still having 'spells' though and I guess I should just ignore them.  Nobody else is doing anything about them so maybe I'm overreacting?  I don't know, but there's not really anything more I can do by myself so I'll just let it go for a little bit and see if they become worse.

I did get him weaned off of the anti-inflammatory meds.  I just started slowly thinking that if he was screaming in pain I would put the dose back to what it was.  He is doing well and I can only hope it stays that way.

We also had an appt with Urology because Kevin has some trouble starting to urinate.  After doing some testing the urologist told me it is just the effects of the meds he's on and that he has no problems at all in this department.  What a relief!  One department down - 6 million to go! (ok - that is a slight exaggeration, lol)

And now I am off to get some scrapping done.  It's going to be a lazy Sunday...

Sept 12, 2012

Sadly, my father passed away this morning at about 1am. My mother called me at about 7am yesterday and told me that while he was already in the hospital for 23 hour observation with a UTI, he had had a seizure and he was pretty much in a vegetative state. They didn't expect him to live even until she could get there - about a half hour drive - but they put him on forced oxygen and that kept his body alive until we could all get there. Kevin, Breezy, Christian and I all caught a flight at noon and my brother, sister and nephew all flew down from Pennsylvania a few hours later.

It was very difficult to see my dad like this. It was so unexpected. Yes, he was dying of cancer and yes, we all knew he would be going soon. But we really thought we had a little bit longer - at least enough time to really see the end is near. We were so hopeful that he would make it through the holidays.

I do suppose that this is better than the alternative. He has been suffering and we knew it would probably only get worse, but it still really hurts.

It was also so hard to first say your goodbyes and then to actually 'help' someone you love die. After fighting everyone and everything to keep Kevin alive, it just didn't make sense to me to remove the oxygen from someone that just looked like Kevin did in the beginning. I just kept saying that he'll be fine - I mean...just look at Kevin, right?

But, my family did decide to remove the oxygen shortly after midnight and although I tried so hard to stay in the room and watch him take his last breath, I just couldn't do it. As soon as the nurse came in and removed the mask, I started crying and just had to leave the room. Kevin stayed though to the very end. After a short while Breezy came out and told me that Kevin was just sobbing and for the first time I said to myself that he is on his own - I couldn't be there to protect him from this.

So my dearest father died very peacefully, breathing one second, just not the next. There was no gasping for breath like we had been warned so I must believe that my father really wasn't there mentally and I must believe that this what was best for him.

And my message to everyone out there - hug the ones you love and make sure they hear the words as well. You really just never know when it will be the last time you see them.

To my daddy - I couldn't have loved you any more than I did. I couldn't have had a better father. And I am so proud to have been your daughter. I love you!

Sept 8, 2012

So Kevin ended up in the hospital last weekend for intestinal blockage. He had another one of those 'spells' (the docs don't want to label them seizures anymore) and shortly after he was vomiting pretty badly and had extreme abdominal pain.

I thought it was best to just have him taken by ambulance as he could barely stand up so I called and off we went. We stayed until Sunday and they informed us that Kevin was dehydrated just a little so they pumped him full of fluids and his bowels let loose. No procedure needed - YAY!

I had trouble understanding how he was dehydrated though as he drinks so much water! I guess with his burns it's just not enough so he has doubled up on his intake and he pretty much quit the Mountain Dew. So far we haven't needed any suppositories all week so maybe the added water will make a difference!

So the VA really can't get us in until October. I struggle with this because to me it's just not acceptable to have someone with Kevin's injuries have to wait 2 months for appts. Maybe I'm being irrational? I just think seizures (or spells) are pretty important with Kevin's loss of brain so we have decided to just go to BAMC for all neurologicial issues. They also set the ball in motion to have the infection figured out so we went back to BAMC this week to see the nephrologist.

Nephrology informed me that Kevin has had these issues for 2 years now, but apparently I was left out of the loop. They want me to take Kev off the anti-inflammatory meds so that his kidneys can get back to working properly. I really don't know what to do as he needs the pain meds and I really don't want him back on narcotics. I feel like there's just no way to win in this situation. Is it worth getting his kidneys back into shape, but he be screaming in pain? Which is the worst issue really?

So it's been a rough week. I just can't stop crying b/c I really thought we were past all this. I thought we were in the clear and it became apparent to me that we will never really be out of the woods. I guess I should have known, but he was doing so darn well!!!