We busted out of the house today. I had a bit of cabin fever so I asked Kevin if we could go back to the Japanese Tea Garden for some more photos. He was all for it so we called Breezy and Chris and we all jumped in our cars and hooked up there.
Kevin wouldn't stick around for too many photos - he was just too busy wandering around - but I managed to get quite a few of Breezy and Chris and just a couple of Kevin.
Here they are:
We had to give it up after a while because (as you can see) Kevin was sweating pretty heavily. We all were truthfully, as it was 98 degrees here today.
Other than that, we didn't do much of anything so I am going to sign off.
Thanks everyone for all the baby well wishes! Breezy and Chris came over for dinner tonight and we all just hung out for a while.
I scrapped quite a bit today. Joseph was here so I took that time to get out the photos and paper. It's been months since I really scrapped and it felt good to get back to it.
Kevin had a good day. Now that I have put him back on that one pill, we have cut his pain meds in half again. Phew! He also slept very well last night, which was great for both of us.
Truthfully, I'm kinda tired tonight so I am just going to leave you with a layout I did today. This is one of my absolute favorite photos and it was taken by Rebecca Droke from the Pittsburgh Post Gazette at Kev's Purple Heart Ceremony. I don't typically put layouts on this blog, but I wanted to share it with Rebecca and Mike (photographer and journalist) so here it is:
I have some rather exciting news to share with everyone. Y'all might want to sit down though...
It appears that...
I am going to be a grandmother!!!
(severe heart palpitations)
Yes. My darling daughter and her boyfriend, Chris, are expecting a tiny little baby on January 16, 2011.
I took a respite care day today and went to see the OB/GYN with Brianna as Chris is still active duty and couldn't be with her. I was impressed with the doctor and both her knowledge and her demeanor. And here is a pic of the ultrasound:
The baby is only about the size of a peanut, literally, but we were able to see the heartbeat, which was wicked cool.
So I admit to being shocked. And a little sad. I know that Breezy is old enough (she is nearly 26) and can handle it all, but I feel sad that I can't be there for her like I would like to be. Normally a first grandchild would be spoiled by the grandma, but my situation isn't going to allow that. It's not like I am going to have money to buy things for the little one and I sure don't have the lifestyle that is conducive to babysitting. Kevin is still way too needy to allow me time to keep the baby at all and he sure wouldn't be able to handle any crying. That part right there makes me so sad.
But, of course, I am happy for her too. Breezy is excited (now that the shock has worn off) and she and Chris are picking names and making plans. Chris will be discharging from active duty in about 3 weeks, but will be reserves for the next 3 years.
Kevin took the news really well. When we first told him he just looked really hard at Breezy for about 30 seconds and then he burst out laughing. He thought she was joking. I had to step in and explain that it wasn't a joke and he again looked deep into her eyes for almost another minute and then said 'ok', he smiled and then he just shrugged. Hopefully the plate is back in his head with no problems before the baby is born and maybe he will get back to loving babies and children. He's going to make a good uncle if we can get back to that place.
So now Miss Brianna just needs to start feeling her own symptoms. Even before I knew she was pregnant I was peeing all the stinkin' time, I have been way more emotional lately and certain female parts of mine are just killing me! I swear - if I feel her labor pains I am going to just kick her butt all over the country!
We had a pretty decent day. I went out and about while Joseph was here, mostly just driving around.
The medication situation was taken care of so all is well on that front.
And Breezy came over for dinner tonight so we cooked cheeseburgers and hot dogs and just had a simple meal.
I called about getting that new mattress because it hasn't happened yet and tonight I noticed that Kevin is actually getting some skin breakdown on his back. In all this time, we have never had that. I sure hope they hurry with this exchange. I am just not liking this.
I also talked to the doctor today and we decided to take the one pain medication we were reducing back up to what Kevin was taking a couple of weeks ago. He's back to not sleeping at all and I have been having to give him more and more pain pills. For a while there he was sleeping pretty decently and looking over the pain pill log I can see that I have had to increase his dosage about 2-4 times more a day lately. I can't say for sure if this is the problem, but I guess we'll see soon.
And that's about it for today, so I guess I'll head to bed.
Yay! We made it to see Shrek today! Kev did pretty well throughout the whole movie, but by the time it was over he was in quite a bit of pain. Unfortunately it didn't end all night long - no matter how much medication he took. Sometimes I wonder if it's worth getting him out of the house, but I hate the thought of him being completely home-bound.
And I got a refill of Kevin's meds in the mail today and the wrong ones were sent. It looks like I get to head over to the VA clinic tomorrow and try to get the correct ones. I hope it's not a problem. We are just about out so I MUST go tomorrow - there isn't enough to make it through the next day. Luckily Joseph will be here so I won't have to drag Kevin out.
And that's pretty much it for today. Not a whole lot going on in life right now...
I went to a caregivers survey tonight and Kevin stayed with Joseph and another guy that is in training. I guess the guys had a blast. Kevin was in a great mood when I got home and he boldy told the other guy to 'get out' because he wasn't a Steelers fan. It was pretty funny.
Sadly, that's about it for today. We did nothing throughout the day. It's my goal to go to the movies though tomorrow to see Shrek 4. We are both really looking forward to it - I can only hope we actually make it to the theater.
I really don't have anything much to say tonight. We went to Sam's Club today, just for somewhere to go, and that's about it. I made a huge pan of lasagna for dinner after that and Breezy and Chris came over again. We didn't play any games today because Kevin bought the movie "Out Cold" and he was really into watching it tonight.
And that's really about it. Hopefully I have more to say tomorrow night, lol.
We had a pretty good day today. We didn't do much, but Breezy and Chris came over for dinner and we all played a long game of UNO. It was just one of those kinda relaxing days.
Due to an uneventful day, I am just going to answer some more questions.
Sue - my parents are doing well. My sister told me that Dad is having more pain in his hip area, but I guess that's to be expected. He goes back to see the Oncologist in early June so hopefully they get the chemo rolling soon. It's been six months since his last treatment ended and they need to get it going (in my eyes anyway).
Karen, you had mentioned a while back about how the body will cause pain just to get the painkillers. So true. One thing about Kevin though is that he despises taking the oxy. He always turns it away asking for Tylenol, but he can only have so much of the tylenol in a day and at times I have no choice but to give him the oxys. We did take him down to Vicodin (sp) last week, but they didn't touch the pain. I know that he needs to be detoxed, but I am waiting until after all the surgeries are done as there's no sense taking the drugs away only to give them back with each surgery.
Miss Em - you mentioned about Kevin sleeping low in the bed being the same as him being in the 'fox hole'. That is something I would never have thought of. And I'm standing here cracking the whip to get you into your craft room! LOL.
Janna - I am so sorry that you had to go through that with Zach and with his twin. I am curious if he will need future surgeries as he grows older? Or does the skin grow with him? Also, please don't feel you have to answer - I know these are personal questions and I don't want to overstep a boundary.
Paul Pomeroy - LOVE the Light Through the Veins! I googled it and caught it on YouTube. You can honestly just feel it running through your body! Thanks for that!
Justin G - I showed Kevin the picture and he knew exactly who you were. It took him a bit - I could literally see him thinking - but it did click eventually. He was pretty excited to 'see' you! I hope we get to see you soon!
I am going to skip again tonight. I haven't scrapped in months and I want to get my scraproom organized. I brought a whole bunch of my stuff back with me a couple weeks ago since we will be here so long this time.
Today we just stayed home. I cooked a big dinner and Breezy came over and ate with us. Kevin even managed to stay at the table the whole time too!
Our afternoon/evening was spent with a VA Fiduciary field rep that came to our house to go over Kevin's budget. She was a very nice woman and we had a long discussion about competency. I feel good about the bulk of it, but when she asked if he watched any news to stay informed on current events I had to say "no". Truthfully, he never watched the news before either. Gotta think about this one.
I drew the line at the photo though. She was told to take a picture of Kevin and I don't know why the financial people would need a photo of him so I did not allow it. I didn't allow it in FL either. He's not some kind of freak show and I can see absolutely no reason why they would need one. Doctors? Sure. Pencil pushers? No way.
Maybe I'm way off base here, but I just can't see it...
And Kevin came over and crawled in my bed at 5am this morning. He has not been comfortable in his bed since he got the new mattress. I called the VA yesterday to see if we could get the old one back and I can only hope they do it quickly. He really has barely slept in the last week. This new mattress is very hard and he always has indentations on his back from it. Keep your fingers crossed that it's quick, please.
And Kevin just called me in his room to listen to his Zune. He has been listening to a little bit of classical music lately and he wanted me to sit and listen with him. Sometimes he will listen to it in the car too - so much better than that horrid screamo stuff, lol.
And now I want to try to finish a movie I started watching early this afternoon. Breezy and I did watch Grey's though tonight - did anyone see it? Geesh. My hurt heart.
I am going to skip writing tonight. I didn't sleep one wink last night - I just tossed and turned all night, finally giving up at about 8am or so. Tonight, I am just so exhausted.
I do want to quickly post a lovely poem that Patricia wrote to help us remember our home state of Pennsylvania (Thanks, Patricia!):
Leslie ~
For you and Kevin and Breezy...to remember the days of Pennsylvania...I wrote this, sitting at my window...thought something nice to read would bring a smile...
Sunday writes itself upon our memory.
The sky changes blue as it is a background for foliage. Dark green sets it blazing brilliant blue...near the horizon a wisp of blue gray....around clouds the soft blue of faded jeans....
Everyone is cutting grass and planting flowers and since it has rained so much, the air is filled with pungent soil, grass clippings, compost, blossoms....the woman across from me began early this morning with her plantings and now her yard is a coloring book unfolded...
Sounds of conversation follow the breeze indoors, drifts around each room, and settles like dust on counters and bedspreads...
When we were children it was a day for baseball, street kick ball, walks to the parks, sitting on stoops and backyard porches with friends, our feet up on banisters...Popsicle melted down limbs and we never minded the sticky sweetness...just laughed...remember the days when we laughed because we loved the feel of it?
Windows are open for the house to air....sweeping remnants of winter and cold away...
I just cleaned the kitchen. Clorox, Murphy's Oil Soap, dish liquid...now it smells like my home on Adams street. How our mother's habits stay with us. Maybe that is why they taught us as they did. So when we clean, and the smell of years ago is recreated, we have a moment with them.
The day's sun is drifting in time beyond the tree line and shadows spread like so many palms and fingers...
Gentle.
A simple word that releases its sigh against the coming of the week...
I ducked out for a little bit today while Joseph was here. I didn't have anything to do, so I went to the mall and just sat in the food court and talked to Moe on the phone. It's really a sad thing when there is nothing to do and no one to do it with.
But I got out, right? That's a good thing.
Other than that, we didn't do much of anything today. A couple games of cards and that's about it.
So I guess I'll answer some questions:
Janna - thanks for letting me know about the expanders. It helped that Grey's Anatomy had it on last week too, lol. Seriously though - I'm glad you mentioned how unattractive they are - I told Kevin it will just look like it did back in the beginning. He didn't seem to care, but that may change when his head actually starts growing.
And I'm so sorry - you probably told me at one time, but why did your son, Zach, have them?
(I should interject that I have retained very little from the beginning of this endeavor. If any of you told me things of your loved ones - more than likely I won't remember. Sorry.)
GrannieEv - you asked me whom the money belongs to - the VA field rep told me that the VA benefits are given to me to take care of Kevin. (although it's not my money and not one penny can be spent for my needs.) I suppose technically it is Kevin's money - he is just not allowed to touch it personally. He does get an allowance from the benefits, but even his allowance is audited as to how it's spent.
At this point, because Kevin has been declared incompetent, we have to ask for permission to buy anything major. Even to rent this apartment I had to have written permission. And they are strict about it too. Back in January I was having the fence put in and I went $4 over the limit without calling for permission first. I was at Lowe's, didn't know it would be that much, it was Jan 1 - a holiday, the installer was coming in the morning, so I just wrote the check. When I called a few days later to let them know I got screamed at and told if I did it again I would be stripped of my fiduciary duties.
Now I do understand that they need to protect the veterans from unscrupulous parents/spouses/siblings etc, but it just makes it so difficult for those of us that don't steal their kids' money.
What makes it even harder is that Kevin is far different than when we got him declared incompetent. Now he knows when he wants something and it's hard to tell him 'sorry - need permission first'. And let me tell you - he was really mad a while ago when we were picking up dinner and I only ordered for him. He asked why I didn't get anything and I told him I couldn't afford it and he pointed to himself as if to say he would buy it and I said 'no buddy, you can't buy my food'. He was furious. I have almost always paid for our meals before, but now that he's discharged from the Army he needs to start carrying himself financially. It's just hard for me - I am the type of parent that always takes care of the bill when we go out for dinner - it's just what moms do.
And I should say that I never used to tell him this stuff, I always kept the crap from him, but he is able to understand now and he should know what's going on. So he is more informed now about all matters. I am determined to get him as close to normal as I possibly can and this is a big step in that direction.
Cathy M - you asked about the pros and cons of declaring Kevin competent - we had the hearing back when Kevin was just emerging from his coma. It was necessary at that point for me to be able to make medical decisions concerning his treatments. He also would have never been able to protect himself financially or deal with any of the decisions that needed to be made on many subjects while he was hospitalized. This enabled me to fight all the battles that were necessary and make all of the decisions to protect him from anyone that he needed protection from. I was able to then take care of his bills and do his taxes, purchase the van for him and go round and round with the Army over his pay being incorrect every single month.
Now though? Now he makes most decisions himself. I discuss everything with him and treat him just like I would Breezy if I felt she wasn't making the right decision. There's guidance and there's control. I am striving for guidance.
I do think that Kevin could probably be declared competent right now, but I want to wait until the plate is put back in. He will have to go through 4 hours of psych testing for the courts and he won't be able to handle it right now. He would be in too much pain and I don't want him to go through that. A little longer won't hurt anyway.
Ok, I have rambled enough tonight so I am going to answer the rest of the questions tomorrow night.
Kevin did fantastic today. We had to wait so long to see the plastic surgeon and he really did well with the wait. Remember when he wouldn't?
So we did finally see him and it turns out that the neurosurgeon needed to be in on the conversation. They are going to let me know as soon as they figure out when the surgery will be - June or July.
They also aren't sure exactly where they are going to place the expander. They typically put it where the skin is needed, but with nothing to protect the brain they just can't do that. So they are discussing on top of his head. I am good with that. It will still allow him to sleep and he can still cover it with a hat when we go out in public.
They also plan to fix his left eye because it had too much skin put in place during the last release. They are discussing the right eye too as it's starting to pull down a little bit. He also has a lump on his right ear that is going to be removed and they are going to 'cut off' some of the deep scar tissue along his neck on both sides. Oh, and botox too in his right arm (although occupational therapy needs to be in place first).
I am not sure if they plan to do all of that at once or if some of it will wait until the following surgery. I guess we'll find out soon enough.
So all in all we were out and about for roughly 6 hours or so. We came home and Kevin rested for a few hours and then we needed to go get milk so we headed down the road again. Unfortunately, there was a wicked storm passing through and I have to say I have never seen continuous lightning before - spooky - so we just came back home without getting the milk.
And now I am really heading to bed so I will get to the guardianship questions tomorrow.
Well...Kevin didn't play along last night. As soon as I finished posting, he decided to get up and wanted to finish the puzzle. So that's what we did.
I am so happy to say that I finished the audit though! It would have been nice if I had had all the transactions from the last two years entered into Quicken - but I didn't have any of that done. That's what has taken so very long - just getting it all in there so that I could run reports.
But alas...it's done! I am so going to try to keep up with entering the data, but it's just not easy to do with this lifestyle.
Personally I am hoping to have him declared competent by the end of the year. He completely understands money and he knows what he wants to buy and what he doesn't. He also knows how much money he gets, how much he has in the bank and what his bills run. He will put things back if he thinks they are too expensive and he will call you on it if you don't give him back the right amount of change. I am proud to say that he always counts what a clerk gives him before he puts it in his wallet too. How many of us do that? LOL!
All along I have made it a point to keep him aware of his money. I have never spent anything without discussing it with him first. In my eyes - this is his money (even though the VA says it's not), so he should make the decisions.
And moving on - today we did nothing. I really am feeling crappy lately (I am assuming it's allergies - headache, coughing, congestion, etc) so I took a shower and put PJ's back on. Kevin was upset because apparently he wanted to go somewhere, but it wasn't happening. I am whooped.
And I wanted to save my energy because tomorrow he has doctor appts. One is the burn plastic surgeon and other is pain management. We should find out when his surgery is in June. I just hope those skin expanders don't hurt too much. Or look too bad. I am also worried about the placement. They are talking about putting them in the back of his head and I don't see how he is going to sleep if that's the case. I guess we'll find out more tomorrow...
I am going to skip tonight and go to bed early. I've been struggling with a headache the last week or so and I'm hoping if I get a good night's sleep it might just go away. Hopefully Kevin plays along...
We woke up today to a whole bunch of flooding. The whole back area of the apartment complex was under water so we opted to not go anywhere at all today. I knew a lot of the roads were probably closed too and I sure didn't want to get somewhere and maybe not be able to get back home.
It was a pretty good day though. I got my floors scrubbed and Kevin and I worked literally for hours on a puzzle I purchased the other day.
His new mattress was also delivered tonight (and roads were closed - that poor delivery guy) and although it was supposed to be longer, it's the same length. I guess I have to call the VA on Monday and get the proper bed ordered. Poor Kevin is so tall that his feet are against the foot board. It doesn't help that he sleeps low in the bed, but it's where his body is most comfortable. And I can't say much - in the beginning he used to have his feet hanging a foot over the end of the bed. You wouldn't believe how many hundreds of times I would help the nurses pull his body back up the bed to the top of the mattress. He would always scoot back down though.
And now I am heading to bed. It's been raining again for the last couple of hours so we may not be going anywhere again tomorrow. I hope we can - I really need a few groceries. I have been trying to push the fresh veggies and I am all out of them. Kevin is drinking a lot of milk again too - just like the old days - nearly a gallon a day. No wonder he weighs 192.5 now... (which, btw, we did figure out that his last weight gain was due to a new medication. He gained that last 20 pounds really fast and has gained nothing since.)
Today was a really good day. We had an appt at a small VA clinic to join up with a primary care doctor. I was very impressed with the way they asked me first if they should speak to me or to Kevin. I asked them to speak to him to try to see how he answered the questions. He did fantastic! He seems to understand the pain scale now and even told the doc that he had 'sharp' pains in his head as opposed to dull, throbbing, etc. He has never been able to describe his pain before so this is wonderfully new. She probably asked about 30 or more questions and the only one he didn't understand was 'does your chest hurt?'
I was also very impressed with him actually being honest and 'saying' he doesn't understand. It's the norm where he just goes along with what is said rather than show that he doesn't comprehend something.
So anyway, he really did well. He played his Zune for a while when I did have to go over all of his meds and he handled the whole 2 hours or so that we were there very well.
Even better, when we left he still felt well enough to want to eat a late lunch out. (he did need meds though). So we headed to a Red Robin - we had never eaten there before - and he did great for a while, but about the time the food got there he was really starting to hurt. I wasn't surprised as it had been nearly 4 hours that he had been out of bed so we just packed it all up and went home to eat.
All in all he did fantastic! I took a photo of him at Red Robin with his new phone too. I am going to end this post with it:
Today I finally broke down and allowed Kevin to purchase a new cell phone. He has wanted one for months and I just kept stalling because...really...how much does he use it, right? (other than to call me - that's constant)
When I got his phone over a year ago, I did only get the freebie one because I wasn't sure if he would even know how to use it. I was wrong on that one and I thought to myself today - why not? Sometimes when he has to figure something out, it's like more neurons finding new pathways, so he got himself one of those backflip phones and he has been running around taking pictures and videos all night. He is just so excited. Typical guy with a new toy, eh? LOL.
And today we actually left the house twice! A first since he has been out of the hospital.
I had to go to the orthodontist early this afternoon and I took Kevin with me. He did super well and everyone was so excited to meet him. I had first seen this ortho back when Kevin was in a coma. They have followed his progress so I was really glad they did get to meet him.
And then tonight he kept asking to go to the phone store so I caved. So far he has figured it all out on his own so I'm glad I took him. And to me - every little thing that makes him act like a normal 21 year old is a good thing!
I realized tonight that it had been 4 days since Kevin had gotten out of the house so I loaded him up and we went to Sonic for ice cream after dinner (maybe 3 miles away). I medicated him pretty heavily before we left so we did make it with no problems and we were able to sit there and eat for about 15 minutes before Kevin's head started hurting, meaning we needed to get back home.
After we were home for a while I needed to shave him so I lathered him all up and took my first swipe with the razor and didn't he grab his neck and start screaming! I was so panicked thinking I cut him and I was screaming 'let me see! let me see!' and I was trying to move his hand away from his neck and he flippin' burst out laughing. The little shit. I was scared to death, I tell you! I think he's been watching too much Family Guy. He has such a twisted sense of humor.
And I have been hitting the audit pretty hard because I need to have it filed within the next 11 days. I am running out of time, but it's just not easy because Kevin always requires my attention. I am close to being done though, so maybe tomorrow...
Kevin did have a better day today. Cathy M - you asked if I thought Kevin forgot seeing the photos to get through it or if he just pushes bad stuff from his mind. I truly have no idea, no way of knowing. It's my guess that he does a little of both, but there is probably more of the forgetting.
I know that last night he made me take his Zune out of his room so I lay it on the couch next to me (hence pushing the thoughts from his mind). Today he came out and actually sat in the living room for a bit and questioned why his Zune was there. All I had to do was look at him though and he remembered what happened. So I guess he is forgetting for an instant, but he pretty much remembers pretty quickly - with a look or some other trigger to make him think for a bit. (and let's be honest - don't we all forget stuff throughout the day?)
This is when it becomes another aspect of my job though and that's to keep him occupied so he doesn't focus on those crappy thoughts. Today we played Skipbo twice with Joseph and then 2 more times this evening. I also went and took a nap (!!!) this afternoon while Joseph was here and I could hear the two of them laughing just as I was drifting off. What a truly wonderful sound!
And then - Kevin called my nephew, Anthony, today. Kevin pretty much never initiates phone calls. I have no idea what prompted it today, but it sure made me smile. I just walked away and left them talk. Truthfully, I didn't even know who he called, but he told me later when I asked. (he puts his arm around an imaginary person next to him - like he would a good friend - and I know it's either Ronnie or Anthony)
Really, it was a good day for the most part. He still couldn't handle eating dinner at the table, but after playing cards, I never thought he'd be able to. It's alright though - I have gotten quite used to eating alone and I would rather do that than have him be in pain.
I hope everyone had a great Mother's Day! Ours was nice. Kevin didn't make it to the table for dinner, but Breezy, Chris, Josh and I ate and it turned out well.
And my kids got me a certificate for a hot stone massage at a spa down the road a bit. I am really looking forward to that!!
But tonight...tonight Kevin is very sad. He found some photos on his Zune from before he left for Basic Training. Photos where he was whole. Handsome. Normal.
He has mostly been crying for the last half hour or so. It's hard because there really are no words to ease his pain. Let's be honest - he has absolutely no quality of life. He is in constant pain. He is disfigured permanently. He has no friends. And he can no longer think like he used to be able to.
I'd say that pretty much sucks - no matter how much we all know that it's a miracle that he is alive.
So I have to let him cry it out of his system. I just keep going in and checking on him every 3 or 4 minutes or so and I can only hope that tomorrow he wakes up and doesn't focus on the losses. We all know what a slippery slope the road to depression is so I will have to keep my eye out once again.
If everyone can just keep their fingers crossed...
We had a better than average day today. Kevin felt good most of the day, enabling me to spend quite some time in the kitchen. I just cooked all day and loved it. Even better, Mary came over for dinner so we even had company and Kev did fantastic with that - only going to his room during dinner (which is normal). To be honest, that pretty much sums up our day.
Anita - you asked when the plate would be reinserted and if it's a sure bet for eliminating the pain and the answers follow. I believe the skin expanders will be inserted in the beginning of June and they need to be in at least 2 months. Assuming there are no infections/complications - the plate should be put back in in roughly Aug/Sept. I should say that there are no guarantees of it taking the pain away, but it definitely removed all of the issues with him being in pain just by getting up the last time. We were at the point where we could go out and about for hours at a time - even going to the Atreyu concert last fall - without any real issues. That's not to say that Kevin lived pain free - he definitely always has had pain, but I am hoping that the day comes where he is pain free. It's probably my fondest wish for him.
Even Kevin is anxiously awaiting the plate being reinserted. He asks every other day or so 'how long?'. He knows that it really is a quality of life changing event and can't wait himself.
On a side note - we are working on taking him off the methadone. We are down to 2 pills a day now instead of the 4 1/2 he was on when we came home from the hospital. It sounds crazy to take him off of pain killers when he is in so much pain, but I'm not sure they are making any kind of difference. It really does appear to be an up/down issue and when we have taken him off the other 2 1/2 pills (slowly done) it has made no difference to the amount of other pain meds he takes. It is such a goal of mine to get him off all this crap.
We also took him off of one of his nausea medications when we got home and oddly enough - he hasn't been nauseous hardly at all and even stranger - he doesn't need the house to be frigid any longer. Yahoo! I was freezing all the time because he wanted it to be 65 degrees. Now it's a nice 72-75, depending on the day.
And now I want to wish all of the mothers out there - Happy Mother's Day!!! Tomorrow I am stuffing a turkey and having a big meal with Kevin, Breezy, Breezy's boyfriend and he also brought another soldier with him for the weekend so it's going to be a nice 'family' dinner. I so hope Kevin can handle it - at least for tomorrow...
We had a decent day today. We had to run down to BAMC to pick up some meds and that was a bit rough, but we did manage.
Tracey from Pgh - you asked what is causing the pain now that the plate is out and there really is no way to be sure, but I believe it is fluid movement. Before Kevin's hair grew in, when he would sit up in bed you could see fluid moving around in the sunken area of his head - where the plate should be. Someone told me once that they read of another person in this situation and this person claimed that the pressure in his head was the most intense pain he ever felt when he would move around.
I remember that we were very limited before the plate was put in the first time too. He was always in pain and the least little bump in the road or any fast movement would cause extreme pain. It's not to say that he wasn't in pain after the plate was put in, but it was nowhere near as debilitating as it is now.
Now, we can barely get out of the house. Some days, Kevin can't even get out of bed. Matter of fact, he now only takes a shower every other day because it hurts him so much to get up. Like I said the other day too, he usually can't even sit through dinner.
We did play 3 games of Skipbo tonight though. Short ones, but we still made it the whole way through.
And I don't think I mentioned that the President signed the bill! Thank you to whomever posted it in the comments area and thanks also to Anna who sent me a link to the video. I am posting it below in case anyone wants to watch it:
I had the pleasure of meeting Ted and Sara Wade when I went to DC back in the fall. They are wonderful people and I'm so glad they were able to be there. I sure appreciate everyone that worked on this!
Kevin has had a couple of rough days. Yesterday we went out for a bit and Kevin was hurting so badly that I had to pull over numerous times and just sit there while he controlled the pain - or at least tried to. It's hard because we never know when it's going to hit. Sometimes we can be out and about for an hour or two and sometimes we can't even make it five minutes down the road.
Today I managed to get Kevin out of his room to eat dinner with Breezy and I. That was about it though. We tried to play Skipbo, but Kevin only made it about 7 minutes or so and then he had to get back to bed.
I just can't wait to get that plate put back in so we can resume our lives. It's just so hard watching him be sick and in pain all the time.
And that's really about it. It's hard sometimes to come up with things to say because we don't go anywhere or do anything. This is why the posts have been on the short side - which unfortunately, is exactly how it's going to be again tonight.
I think I am just going to skip tonight. I really just don't have the energy to post anything as Kevin has been running me ragged all night. Catch ya tomorrow...
We had a much better day today. Kevin got up and around and we went to this new grocery store that we just found. It was huge and had all kinds of things that I have never seen before. We were probably there about an hour and a half and Kevin did pretty well. He (of course) stayed in the electronics department and I was gaga in the pasta aisle. Has anybody ever heard of chocolate pasta? Yep! I couldn't believe it. I bought some to make dessert over the weekend so I'll let you know how it tastes.
He was hurting when we got home so he did lay down for a bit, but then he got back up and actually managed to sit at the table and play a game of Skipbo with Breezy and I. He also ate dinner with us, which was really amazing.
After dinner we all called Moe and sang Happy Birthday and then Kevin just went to his room, Breezy did the dishes and I actually talked to Moe for a long while.
All in all, it was a pretty good day. I always like it when Kevin gets up and does thing with me/us. And he is really hooked on Skipbo right now - which is great. Anything to make him think!
Kevin barely got out of bed today. He did take a shower and that's about it.
I am just going to answer a few questions/comments and then try to get to bed. I can hear Kevin sleeping so I want to get some zzzzz's myself.
GrannieEv - I signed up for that survey weeks ago and have already been contacted about possibly taking part in one of the discussion groups. They are dated later this month so we will see if I get to participate. Thanks for letting me know about it!
Anita and everyone else - I know that you all tell me that I need to take care of myself, but it's really just not that easy. I made a goal to get my sense of self back this year and here it is - May 4 (Happy Birthday, MOE!!! - it's the first BD I missed - I'll try make it up to you though!)...Anyway...here it is May 4 and I haven't done one thing (that I can recall anyway). As for my blood pressure and/or seeing a doctor - not going to happen unless this bill goes through and I get medical coverage. We all know that the doctor's bill never stops at just seeing the doctor - there's always blood tests and work ups and yada yada. Totally not in my budget.
Janna - after Sept sounds perfect for a visit. Once Kevin has the plate back in he should be able to handle company a little bit easier. Good luck with the move!
Bryan Ott - 270 days after the President signs it? Holy crap! I am so not political and can't even begin to understand why it would take that long to take action. That's 9 months away!! Does it just take this long to figure out how to make the bill work? Or is that going to just add even more time before we are able to buy groceries and pay our bills? Also, you mentioned "You will get what the CNA's get for the hours the VA determines you provide Kevin with care". Hmmm...a little humor here - I know our CNA got $10 an hour. Since both you/Chris and I work 24 hours a day, 7 days a week, what do you think the odds are that we really get paid $7200 a month? Bwaahaaha! I think I can guarantee that's not happening, lol! (and say 'hi' to Chris and JT)
Cathy M - I don't know about our aide doing any type of 'therapy' work, but I did call our case manager at the VA here in SA today and told her that there really is no way that Kevin is going to be able to 'go' to any therapy. We are really going to have to have therapists come into the home and even then I'm not really sure he can handle it. He has just slid so far backward in this regard...
And now I am heading to bed. He has been sleeping the whole time I have been typing away so maybe it will be a good night...
I made it home safe and sound. No speeding tickets either - which is pretty good for this lead foot.
So I got home and had dinner with the kids, we unloaded the car and then Kevin and I played Skipbo for quite some time. Now I told him that I just have to get some sleep and we'll see what happens. Breezy said he didn't call her on the phone one time last night. She was so scared when she woke up and realized it that she ran to his room to check on him. He was just snoring away. It sure would be wonderful if it happened again tonight - I am still just so tired.
And on that note, I am going to bail on you guys again and go to bed.
I am pretty much going to skip writing tonight. I drove 13 hours today - made it all the way to Lake Charles, Louisiana and I have about 5 more hours to go tomorrow. I am tired though.
Kevin is doing remarkably well. He only called me a couple of times today and I am really proud of him. He has made such great improvements on the separation thing. I am thinking that maybe Breezy can watch Kevin one weekend every 2-3 months? I have 14 more free hotel nights (thanks to the last time we were in Texas and stayed in that hotel for two months) and I would love to see Louisiana - it's always been a dream vacation to me - and it's really not far from SA.
I made it safe and sound to my mom and dad's house (our house too) and got the car all loaded and packed to leave in the morning. It is so nice being with my parents, but wow - has my dad lost a lot of weight. I worry so...and really hate being away...
So they are hoping to come visit us soon and I hope they can. I'm not sure when dad starts his next round of chemo so I guess we need to wait and see about that.
And after reading last night's post again - did anyone catch that I spelled brakes wrong? Geez...I must have been more tired than I thought, lol.
Ok, I am signing off early and getting to bed. I have a long couple days ahead of me...
I was on the phone most of the day with the VA and various case managers. It turns out that we are only getting 15 hours of the aide a week like I had originally posted. I guess I have 30 6-hour days of respite care available in case of an emergency (or if I want to go on vacation or for whatever reason) and someone assumed that I wanted to use 2 days a week of that, giving me 25 hours. I'm not really sure who made that assumption, but I sure don't want to use emergency days up. With my dad being sick, it would be irresponsible of me.
We also have an 'emergency' of sorts going on right now. Breezy took her car to have her breaks fixed because she was tapping the floor every time she needed to use them. It turns out that - because the car sat in PA for a year or so (without being run at all) - the whole underside is nothing but rust. The mechanic she took it to said he wouldn't want his sister getting in it so I am flying to FL tomorrow to bring the other car to TX. It is just not in our budget to buy anything right now and besides that - she hasn't worked long enough (post Kevin's injury) to get a loan. So I leave in the morning, spend one evening with my parents and then drive 17 hours back to Texas. I'm not afraid of driving by myself, but I do wish I had someone to ride with me. I know how tired I am and that is the only thing that worries me.
But it is what it is. And this will enable me to get a bunch of things that we need from the house.
So Joseph, the aide, will come and sit with Kevin tomorrow until Breezy can get here after work. She will stay with Kevin the rest of the weekend. Joseph did come today again, but Kevin was pretty mad all day. He wants to go home to FL and assures me that he can handle the car ride, but we all know he can't. Besides that, I don't think he can even handle the flight. He can barely sit up in bed without screaming in pain. Can you imagine take off and landings? No way.
And now I really need to get to bed. I will say that I slept like a rock last night. It was just so wonderful! I sure hope I can do it again tonight...
Thanks to everyone for their support and kind words. I can't even begin to explain how the comments keep me going sometimes. When I hit a low, I just hear your words and it prods me into 'wiping the sweat and driving on' (in the words of a member of The Herd).
So an aide came today. Now you just can't imagine how excited Kevin was when he showed up with a Steelers tattoo on his arm and a Steelers bag with his tricks of the trade inside. You should have seen Kevin's grin, lol.
And they did hit it off pretty well. Kevin actually got up and gave him a tour of the apartment and then they watched some TV together (Spaceballs, I think). They discussed music and it was nice to see Kevin up and about for a while. I was really happy to see the guy not minding that Kevin needed quiet and to lay down for a while too.
After he left, Kevin took a nap for an hour or so and we decided to go to the mall. I am struggling to find things to do with him that are really close by. Tomorrow, I plan to scope the area out once the aide gets here. I am told he will be here 25 hours a week and that is even better than I thought. I DO plan to get out and do things at least twice a week - even if it is only an hour. It is one of my goals to get Kevin as independent as I possibly can. I am hoping just having a 30 year old male around may help as well, but I am going to truly leave the apt as much as I think Kevin can handle (or maybe even nap? Egads!).
And now I am seriously going to bed. I can only hope Kevin will allow me to get some sleep. My eyeballs hurt and I have this thumping headache tonight, which is very unusual for me. I can only assume it's because I am working my butt off trying to get an audit done for both the court system and the VA. I have been entering transactions into Quicken for days now and I am nowhere near done. Maybe having the aide here will help me complete it. Truly - I just need some uninterrupted time to get it done...
Today we actually made it to the movie - YAY! It was a pretty decent movie and we both really enjoyed it.
That's pretty much it for today though. We really didn't do much else.
This would be my normal post of the day. Sounds pretty boring and easy, huh?
I had a long talk though with one of my friends today - someone that I haven't spoken to in many, many months because there is just no time for me to be on the phone with my friends/family. She told me that although she knows the reality of the situation - I am painting too rosy of a picture and others are not seeing it clearly. I am letting people believe that we have 'boring' days when truthfully, our boring is nothing like your boring. I am letting my friends/family/readers think that we are living some kind of wonderful life when you couldn't be farther from the truth.
I never really thought about it that way. Mainly because, in order for me not to have a nervous breakdown about how horrible our lives really are, I NEED to stay positive. I HAVE to end the day thinking of the half hour or so of good moments we had. Yes, the HALF HOUR or so of good moments.
You see, when I say we had a good day, in truth that just means that for 30 minutes (or whatever short amount of time) of the day Kevin and I were normal - your normal - not ours.
This, my friends, is what I could be writing. What REALLY happened today:
I finally fell into bed at about 5:30am. Kevin just doesn't sleep and although I try to stay up with him, I just couldn't stay awake any longer. And I wish I could just fall asleep immediately - you would think I could, but I never can and many nights I don't sleep at all.
I lay there thinking about my parents and my dad's cancer, about money and how I am going to survive if this bill doesn't go through quickly, about how much I miss my friends and the ability to just jump in the car and go somewhere. I toss and turn trying to find ways to help Kevin get better faster. Or even to get better at all. I cry because I don't want my son to go through what he is going through. I hate that he is in CONSTANT pain - and it never goes away (there are just varying degrees of it). I think of Breezy and how devastating this was for her and how many days she can't bring herself to smile - even with all of the positives in her life right now. I think about how people assume they know what we are going through, but really have no idea. I sometimes am too angry to sleep - not at Kevin - never at Kevin - but at the system and my constant need to fight for everything.
All of this - and it's still technically the night before my day even begins.
So I did probably fall asleep somewhere between 6 and 6:30 and I got my first phone call at 7:13. It was Kevin. He needed his fan turned to speed 1. I zombied it to his room and took care of it and crawled back into bed. I got more phone calls at 8:26, 9:15, 9:42 and 10:28 - none of these Kevin. This was a good day as sometimes it rings non-stop.
I did just stay up with the 10:28 call and started the day. Kevin was up - I don't know if he ever went to sleep or not - probably not. Since he heard me - the MOMs began. To throw some hilarity into this situation - here is what Kevin is like:
Sadly, it really is a lot like this.
So we were going to go to the movie and I got Kevin up and moving. He went into his closet to pick his clothes and I jumped into the shower. Within 4 minutes he was screaming in pain so bad that I could hear him over my running water. So I jumped out to get him some pain pills and then I jumped back in, finished conditioning my hair and got out and dressed.
At this point, I didn't figure we were going to the movie. We needed to leave in 30 minutes to get there comfortably and Kevin takes A LONG TIME to go anywhere. The movie theater is 15 minutes away and we need to leave 60 minutes before the movie starts.
So he lay in the dark in his room and after 30 minutes the pills still didn't help his pain at which time I gave him some Tylenol to help the oxy's along. It was already time to leave. About 20 minutes later, Kev managed to get up and get ready to go. It still took him another 20 minutes to dress and brush his teeth and by the time we made it to the car the movie was going to start in 20 minutes. He still wanted to try to go because it had been 3 days since he left the house and he was going stir crazy, so we ventured out.
I only had to pull over 1 time due to his nausea and since we have these tablets that dissolve under his tongue to combat that, we popped one in and away we went. He was still sick, but we made it without any vomit. Huge sigh of relief.
I dropped him off at the curb and went to park. He was still only halfway to the door by the time I was done and I ran past him to get the tickets. I also went to the counter to get his ice cream and drink. By this time he made it in and I pointed him toward theater 17. As I juggled everything, we finally managed to get to the right theater and it only took about 6 minutes or so to walk there - roughly 150 steps. Do I complain? NO. I just patiently walk beside him. I am so proud that my son CAN walk to the theater by himself. A miracle - and we all know it!
(he moves much slower without the plate)
Once we got in, we have to go all the way to the top and we have to sit at the right of the theater. If we aren't at the top and to the right, Kevin can't see the whole screen. Losing half of his vision has created a whole bunch of situations that you wouldn't normally think about.
(and thank goodness there are always so many previews! by the time we got situated the movie was just starting!)
After the movie, we got back in the car. We took more pain pills and headed to Walmart. Kevin stayed in the car because he was too sick to get out, but he demanded ice cream - our whole reason to be at WM. He wanted more at the theater, but we just can't afford it at those prices.
So we did get home without mishap and Kevin immediately went to his room. The MOMs are still continuing and will until I drop into bed. We got supper and Kevin actually was able to stay at the table long enough to eat it. He usually can't sit that long and he ends up eating an hour later in his bed (after his head has stopped hurting so much). I should also mention that I can't cook anything that requires me to stand at the stove. Kevin needs me constantly and I would burn it all if I had to stir anything all the time.
So I guess I just wanted everyone to realize that although I say our day was great and/or boring - it's in our way, not yours. I grab hold of small bits of the day and try to focus on them so that I can get out of bed the next day. Those moments are something precious to remember. It's either that or I can repeatedly think of all the MOMs and the suppositories and the crying and need for so many medications and the screaming in pain and the ball and chain keeping us in the house and Kevin's inability to talk and really - I could go on an on.
But let's not, ok? Let's just say that we went to the movies today and it was a great day. We had ice cream and popcorn and sodas and for ninety whole minutes we were mostly able to forget what happened...
We didn't really do much today. The home health company came out to get us admitted into their system and it looks like they are also going to hire someone Kevin's ageish that has some of the same likes/dislikes. In the interim, they are going to just send someone else out and it appears it will be for about 15 hours a week. This is a good amount for now as Kevin really doesn't feel well enough to go do much. I am going to strive toward getting out for at least half of that time each week too. It's the only way to keep going forward on the separation anxiety thing.
My main goal though would be for this person to take Kevin out and do things, as well as play games and do other things with him at home. Like I've mentioned before - just someone to be his 'friend'. I sure hope this company is better at hiring than the last company, lol.
And I know my posts have been short lately, but there really isn't much to say. Kevin is very limited in the amount of time he can stay out of bed, so our lives are pretty boring right now. We are hoping to make it to the movies tomorrow...wish us luck...
We had another really good day today. Kevin actually got up and played Skipbo with Breezy and Chris first and then I joined after I came home from my little ride around the area. I am actually going to skip writing much tonight, but I will leave you with this video of us playing cards. Kevin was in fine form, lol. Truthfully though - he couldn't comprehend this game back in Oct when we tried it, but tonight he creamed us both games. And we didn't even go easy on him!!
Hey Moe! I hope you're up for some 'kill your neighbor Skipbo' when you come to visit - we can't have him winning like this!
Today was really a great day. Kevin felt well enough to head to Target shopping (I had to return a blender that when I opened it was used and dirty - yuk!) and he did fantastic the whole time. I was very proud of him because he wanted a slushee and I made him get it himself so he wheeled up to the counter, pointed at the picture and paid for it. I really need to get back to cognitive therapy and pushing him to do more, he just hasn't felt well enough for me to really push him lately.
After we got home we had a nice family dinner with Breezy and Chris. They are coming again tomorrow and I am hoping that I can get away for a little bit. It's been a while since I have been apart from Kevin and I need to break away for an hour or two to recharge.
And tonight I have been watching "America's Best Dance Crew" and it just reminded me of when Kevin was really young and he was break dancing in the talent show at his elementary school. I sure wish I had filmed that event. He was so dang adorable and so dang talented. (remember that, Breezy?)
And now I think I will head to bed. Before I forget - Grant - I don't know if we will be in East Brady for Riverfest or not. Kevin will be having surgery I think in June and again in August so I'm just not sure about us traveling in July. We'll see though.
We tried to go to the movies again today, but Kevin got too sick about a mile from the apartment so we just turned around and came home. Kevin lay down for a while and then was able to get up and we headed out to Subway because he was 'in dire need of' a sub. It really amazes me that he doesn't look like a sub by now, lol. He is really quite addicted to Subway.
One good thing is that he allowed me to drive around looking for one. We knew there was one about 5 miles in one direction, but we really hadn't driven much in the other direction. So we did drive around for a little while and we finally found one.
I really do need to just get out there and drive, but unfortunately Kevin can't handle being out and about long. I am told we are finally getting an aide to help me out, but from what I understand it's only for 6 hours a week. That's not going to really give me much time to do anything, but it's going to have to do for now.
And to those that let me know about the caregivers bill passing, thank you! Tom asked how I feel about it and the word that came to immediate mind was 'RELIEF'!! I sure hope the President signs that baby and fast! I just want to get this thumb looked at, although I'm sure it's too late to fix it completely. I also can't complain about having an income either. It will be nice not to have to lay awake worrying about the financial future.
And Anita - yes, we knew that a Toy Story 3 was in the making. Kevin can't wait for it to come to the theater. And we were headed to see How To Train Your Dragon today - glad you liked it. Oh - and we always go to do everything at 'off' times. There would be no way during any of the normal busy times. Not for movies, restaurants, or anything else.
And to Barbara Burke - thanks for letting me know about being able to call 911 when the elevator is down. I hope we don't ever need to do it, but at least I have the knowledge if it ever is necessary.
And now I need to end this thing. There is a howling wind out there and there are tornado warnings so I better post quickly just in case...
We had an exceptionally lazy day today. We did nothing. We went nowhere and had a simple dinner of egg salad sandwiches. It was just gray and overcast out there (couldn't even see one meteor last night, bummer!) and it really affected our moods. It's ok though, we all need a slow day sometimes.
On this note, I am just going to go watch some tv. I know I have been writing less and less, but there really isn't a whole lot to say right now.
Before I go though, Jessica - I am very sorry to hear about your grandad passing away. My thoughts are with you!
We had a pretty good day today. We didn't go anywhere, but we invited Mary, our wonderful FRC, over for dinner and it was a really nice evening. Kevin enjoys seeing her (as do I) and he did well for a while, but he did spend the bulk of the night in his room - like usual. He really just can't handle the talking for very long again. For me though - it was great! It's a very rare thing where I get to have a conversation and food all in one. Our lives really are very quiet.
And I didn't hear anything from the apt complex today. Tomorrow, I hope, although I'm not holding my breath.
So now I am going to sign off and watch the meteor shower. I hope it's visible from our balcony...
The elevator was fixed by the time we got up this morning, but I still called to set up a 'contingency' plan. I really liked the idea that if the thing is broken, we can stay at a local hotel because there is absolutely no way that Kevin is going to HAVE to walk up those four flights of stairs again.
Unfortunately, the manager didn't return my call today. I am giving her a couple of days because who knows...maybe she's off sick or something, but if nothing is done by Thursday or Friday, I will most certainly call that advocacy group.
So we did have a doctor's appointment and we did go and all is well with Kevin. We are going to keep playing with his meds trying to get his pain more managed and also trying to eliminate the amount of pills he still takes every day. We have to do it slow though so time will tell.
And we did visit the ward today too. We miss everyone. It's like living with a bunch of people and then moving away (which I guess really is what we did, lol). It was funny because Kevin went right to his room (he has almost always been in 403) and was shocked that someone else was in there. I think he thought it would be saved for him, hehe.
Up until today I have felt this apartment was just perfect for us. But today? TODAY - the elevator malfunctioned!!! Now let me tell you that our apartment is on the fourth floor and you guessed it - Kevin had to walk up all four flights of stairs! I am spitting nails!
First let me preface this by saying that we had went to the movies today to see Alice in Wonderland and Kevin did pretty well until the end. I think it was just because he was sitting for so long, but regardless - he was hurting pretty bad by the time it was over.
So we headed home, but he was so nauseous that we had to keep stopping and it was all I could do to get him out of the car and into his wheelchair to come up to the apartment. Then we get into the elevator area and Kevin hit the button and nothing. So he hit it again and still nothing. We waited, thinking maybe someone was holding it, but really, it just wasn't moving at all.
Now you had to know that I got on the phone and called maintenance, but I had to leave a message and by then people were walking past us and everyone was telling us that it was broken down. In about five or ten minutes someone from the apartment complex called me back and told me that they were sending someone to help get him upstairs, but no one ever came.
It took Kevin AN HOUR to climb those four flights of stairs. He had to rest 10-20 minutes in between each flight and he was so sick by the time we got to our apartment! I AM LIVID!!!
Worse - I was informed that the elevators have broken down four times in the last six/seven months and the one time it was 13 days before it was fixed! Say WHAT?!!
Don't you think that the office people would have told me that knowing Kevin was in a wheelchair and sick?
I am furious! I can't even begin to tell you how mad I am. Why wouldn't they tell me? And now what am I going to do? Are we supposed to stay here risking Kevin having to do this gosh knows how many times over the next year? I already looked all night at houses for rent and once again - there just isn't much out there that fulfills all of his needs. And frankly, I am just too damn tired to move all this stuff by myself again.
Man, I am really PISSED OFF! Kevin has a doctor's appointment tomorrow and I don't know whether to cancel it now or wait and see what tomorrow brings. Especially because I am wound so tight I probably won't sleep a wink. It's already almost 3am and I am still blowing steam from my ears!
Geez! Why can't something - just one flippin' little thing - go right for once?
Unbelievably, Kevin has been sitting in the living room all night watching tv/movies. We sat and watched Horton Hears A Who, then Rat Race (a fav or ours) and now he is flipping channels. Actually, it appears we have landed on The Mighty Ducks.
So we didn't really do anything today. We never left the house, both of us just vegging around. It was a really nice day so I turned off the air and threw all the windows up. I made some chocolate chip cookies for dessert and Kevin is munching on those right now.
I did want to mention something. A few of you were surprised that Kevin could hook his XBox up so I figured I needed to clarify that Kevin pretty much knows what's going on around him at all times. He knows how to run every electronic device out there, he knows how to get around the stores by himself and also how to pay for things using his debit card. We are making great strides in the talking department and he was able to tell me where he was in Target the other day when I called him (sorta, lol. He told me 'bananas' so I went to the front where the fruit was, but he was actually in the freezer aisle that had a picture of bananas on the endcap. It's a start though, right?). So he showers himself and does everything - the only thing I have to do is help him with his deodorant. He understands what he wants AND what he doesn't. He knows his meds better than anyone - not the names of them - but the pills and the doses. He is reading more and more and he can do addition and subtraction very easily (even large numbers). He knows almost every movie within three seconds of viewing it and often uses them to communicate things that I just can't understand the normal way (charades). All in all, he has really come a LONG way cognitively in the last six months or so.
This is not to say that he is recovered by any means. We have many more years of therapy ahead of us, but he really has made wonderful improvements.
And to wrap things up, Miss Em - you asked about my parents and they are doing well. Dad is getting stronger every day and will be starting another round of chemo shortly. I don't know if I mentioned it, but they moved into our home in FL so that it doesn't stay empty for a year. It's already been empty so much over the last year and I hated to leave it that way. It will also help us cover the expense of running two homes.
And Mel - I will tell Maritza 'hi' next time I see her! Should be this week one day.
And for those grapeseed oil users - can you buy it anywhere or only in specialty shops?
Not much happened today so I am just going to skip writing and scrap for a bit. It's been a while since I have done so and I am itching to get back to it. I sure hope Kevin will 'let' me...
There isn't a whole lot to talk about today. About the only thing we did was go to Target for some groceries and then I just built a tv stand and put together the vacuum cleaner. Pretty exciting, huh? LOL.
I do want to say 'what a relief that we aren't home-bound though, huh?'. Man, was I scared about that possibility.
So I am just going to answer some of the questions that I haven't gotten to in a while.
GrannieEv - thanks for the info on the Lions Clubs. I had never even thought of that. Lucky for us, the VA did bring him a bed and after the docs came the other day they are even sending a better/bigger one.
Karen - I am anxious to try that Kettle Corn recipe. I am trying to decide on using ghee or oil though. Just never heard of ghee before...
Anita - yes, Kevin listened to screamo before he left for the Army. His favorite band even back then was Atreyu - totally can't understand a word they say, lol.
Jenna, thanks for the info about hyperbaric treatments. Unfortunately, Kevin would never lay in one of those chambers for an hour or more. I am anxious to keep researching it though. It's still so new and you never know what they will find and about the only thing I can say is that you never know what Kevin will do years from now. He has really just come so far, but if he thinks something is weird, he's just not going to do it.
If I have missed any questions, please re-post them. I have them all cleared out of my inbox, but sometimes I delete by accident.
So yesterday was a bit rough. Kevin never really does well with change and he fought against everything at the apartment. Nothing was right as far as he was concerned. It really was a horrendous night and I am so glad that it's over.
Today was much better. Once he gave it a chance, he saw that things are not as bad as he thought. Granted, the bed they brought really isn't going to work, but he has no choice but to sleep in it until a replacement can be brought. And he really is seeing that it's nice to be able to sleep without constant interruptions and to just get back to being more independent.
As for the doctor, the therapist and the case managers that came today - I was very impressed. They really looked over the apartment and gave me some insight into things with TBI patients and they also discussed possible therapies and other services available to Kevin. I really liked each and every one of them and felt that we will have a good 'working' relationship.
And Kevin decided tonight that we were going to the mall. I had planned to stay in as it was his first day home and it was rainy and yucky out there. But he was adamant that we go shopping to buy a belt (his old one won't go around his waist anymore). So we loaded up and headed 4 miles down the road to the mall. He did fantastic. He picked out some new clothes, sunglasses, a hat and a wallet at Pac-Sun. It was just so nice to do 'normal' things with him again. And he did so well in the car - even listening to the dreaded screamo music.
I really needed to run to Walmart after the mall for milk and things, but I could tell Kevin was getting too tired so we just went home. Not surprisingly, he went to bed immediately for a little nap.
After that, he just organized his closet. I am not buying dressers, we are totally using our closets for everything and since he has to have everything in it's proper place, he spent some time getting it just right. I noticed he also hooked up his XBox.
It's amazing when you think about it, isn't it? The kid almost completely understands what's going on around him and he can do so many things we never thought he'd be able to do. I told the docs today that I expect Kevin to be somewhere in the 90 percentile recovered when this is all over. It's going to be years down the road, and it's going to be a rough road too, but I do feel he can pretty much be his old self someday. He's already made great strides toward that goal...
And I am going to leave you with two photos from the other day. The first is me and Martiza and the second is Kevin doing rabbit ears to one of the therapists. I don't think she ever knew that he was doing it. It was so funny!
Unbelievable! Kevin did fantastic today on the drive to the apartment!!! I was so scared because when I got to the hospital he was so sick. He was sitting in the dark with his puke bowl on his stomach and I was so sure we weren't going. But we gave him some under-the-tongue nausea medication and within a half hour he was raring to go.
So we loaded him up and away we went. Before we left, we also gave him some anti-vertigo meds and some pain pills and he had no issues whatsoever. I have to admit that I was really surprised.
And another thing that really surprised me is that the TBI doctor and therapists from the VA here in SA are going to make a house call on Thursday. Yep - they are coming to our home to visit with Kevin and get to see what he's like in his own environment. They wanted to originally keep us in the hospital another day and meet us there, but they changed their minds and felt it would be best to see him at home.
I am also happy to say that the bed and rails were brought over and installed today. Kevin was not too happy to see the hospital bed in his room, but he must sleep with his head elevated so it's something he will have to adjust to. I don't think he remembers that it hurt him to lay in the normal bed at the FH.
We didn't get to go to the apartment today because there wasn't an extra therapist to be able to go with us. It was a real bummer because Kevin was in the best mood I have seen him in in weeks. We got up and went to lunch and we sat in the waiting room with Maritza and Joel for almost a half an hour and he was just so much happier today (for the most part) than I have seen him in a long time. Maybe it's the anti-depressants? Who knows...I just hope he's like this tomorrow because we are scheduled to go at 1pm.
And yay - Kevin got his PICC line removed today! It's been giving him a lot of problems and if we would have had a choice we would have removed it days ago, but it's literally impossible to get blood any other way. So we kept it in until all his cultures came back clear. Yep - KEVIN IS INFECTION FREE!!!! (As of today anyway.)
And this is pretty much it for today. I've got to get to bed here pretty quickly because Kevin's hospital bed is being delivered first thing in the morning. Hopefully I can sleep...it really doesn't come easily...
There really isn't anything to write tonight. We didn't do anything today - Kevin didn't even get up to go down to lunch so it was a pretty boring day.
If I'm correct, tomorrow we are planning to take a run to the apartment with Kevin and a therapist. We just need to see if he can handle the ride and what kind of aids we need (railings, etc). Wish us luck because I really don't think he is going to be able to handle it at all. I truly hope I'm wrong...
We did have a nice dinner tonight. Breezy and Chris came over and we got Kevin over to the FH. It was made even better because no one was around at all so it was ultra quiet. It was just a nice couple of hours.
Unfortunately, Kevin got sick afterward and vomited everything all back up. I wish this nausea/vomiting thing would go away. It's so hard to watch him constantly go through it. Even if we could get back to where it was just once every couple of weeks or so, that would be good.
And I'm still really worried about him handling the drive to the apt. We are anticipating a Wed discharge and I'm just not sure. There's no bed yet either, so he may be in the hospital longer.
And now I'm going to leave you with a somewhat blurry photo that was taken today while we were all hanging out in the waiting room. Obviously it's Kev, Joel and Maritza in the middle and the volunteer Alicia, who considers herself Kevin's 'Mexican Grandma' and her granddaughter on the ends. Kevin is only able to visit for about 5 minutes before he gets overstimulated, but he always has so much fun with Maritza and Joel. Alicia is a bonus too. So anyway, here it is:
Kevin is doing a bit better. I think it's in part because we are fixing his anti-depressants. Somehow the dosage got changed and we are working on getting it back up to to what he normally took. I attribute the reduction into causing him to be impossible to be around and into his feeling absolutely horrible. I have been so worried because I could see him sliding backward to where he was last summer/fall.
If you remember then, that was when he was running away and although I never mentioned it on the blog, he became suicidal after a while. I could see him heading back to that time and I have been a nervous wreck.
But he's doing better anyway. We still have to increase one more time and then we will be back to where we were. I am hoping the increase happens tomorrow because I know they take a while to fully work and so far he still has no desire to 'go home' to the apartment. He really wants to just stay in the hospital until the plate is put back in his head.
And today I finally made it to Pac-Sun to get the kid some new clothes. I got like 8 hours of sleep last night and hit the mall before heading back to the hospital. There is a mall just 4 miles or so from the apartment (I slept there on the couch last night - HEAVEN!). So anyway, he now has some jeans that fit better and I am proud to say that I picked more clothes that he liked than he didn't, lol.
Ok, now I need to get some bills paid and then head to bed. I already made stuffed pork chops that I am going to bake tomorrow for dinner at the FH. Hopefully I can get Kevin to come over to eat...
I hate to do this again so soon, but I am going to skip writing again tonight. I am just so tired and I want to finish the laundry and get to bed. I even left Kevin a little early tonight because I am just flat out exhausted.
I finally got some pictures of Kevin to show you guys. He really doesn't like anyone seeing his head anymore, but he actually agreed today. I think it was because we had a distinguished visitor at BAMC today. Here is a photo:
I am sure I am the only person out there in America that had no idea who the Vice President was, but I learned it today. It's actually quite sad that I didn't know, but it just goes to show how sheltered our lives are nowadays (not that I was ever a very political person). So anyway, obviously this is VP Biden and his wife. I don't know the first thing about his politics, but they were both very nice to Kevin and I and it made Kevin smile to get a visit from the VP of the good ol' USA.
And I have to admit to really liking his medical aids too. We had such a nice chat with them. I admit though, that I could never live in such a circus. So many secret service agents and just people everywhere. CRAZY!
So anyway, we also had an ophthalmology appointment today as Kevin has been trying to get me to understand that there is obviously a change in his vision. The language/understanding barrier is doing a number on us for this - I just can't get what he is saying because he doesn't understand what blurry, double vision, or any of the other possibilities mean. They did tell me he has 20/50 eyesight though and I need to find out what it was the last time he saw the eye doctor. I thought (understanding he has no peripheral vision on the right) his eyesight was 20/20. I so hope he isn't losing his sense of sight.
And now I am going to end with a couple more photos and a video of Kevin doing the 'robot' dance, lol.
Kevin did better for the most part today, although we did have a bout where he was in extreme pain. We are really playing with his meds though as he is just on way too many. We are at the point now where we are just battling side effects with more meds and that doesn't really work for me (or him I would bet).
We had gotten away from needing many breakthrough pain pills over the last few days too, but we were back to it today. It got better once we gave him an allergy pill that we removed yesterday - seems like that might be a problem.
And tonight Kevin came over to the FH for a couple of hours. Not until 9pm though and only then because I didn't do laundry last night (went to apt instead) and he needed clean clothes. So we came over for a bit and watched some TV. At least I got him out of the hospital. They are discussing discharging him sometime in the middle of next week. We'll see though - he's gotta be a little more stable than he is right now first.
Before I forget - I updated our address at the side of the page. This will be our address for roughly the next year.
And to end tonight's post - today...I got my braces off! Seventeen (yes - 17!!!) months later than they were supposed to be removed. I just could never get to the orthodontist to get them tightened and stuff so I went to one here and just had him remove them. I admit that they should have gotten tightened a few more times and then removed, but what if Kevin is home-bound? I will not be able to leave the house if that's the case. Nope. I just had them taken off.
Aaahhh...what a wonderful smooth feeling...and now I won't get caught eating popcorn...or chewing gum...or eating pizza crust...or biting into an apple...or even red licorice...
I hope everyone had a great Easter! I did end up cooking a little ham I bought for dinner and Kevin and I ate in solitude. There was no one at the FH today, which was much needed after the night we had last night.
Kevin ended up needing another PICC line inserted - even though he has a blood infection. They tried 15 times to get an IV in and to get blood. Sonar was used, even anesthesiology tried - no one can get anything. It's not due to dehydration (Kevin probably drinks more than any of us out there), it's due to medications and just over-use. His veins have probably been poked a thousand times in the last two years. So out of desperation that is what they had to do - reinsert it.
They called me back to the hospital to do this at 2:30 this morning (I was still at Walmart) and they didn't end up actually doing the procedure until until almost 3:00 this afternoon. I guess no one wanted to come in on a holiday? So I have to ask - why did I have to sit there for 12 hours waiting to sign consent forms? Yep - I have to admit that it made me mad. Honestly, I could have cared less if someone didn't want to come in until the afternoon - just don't make it where I get no sleep while waiting to sign forms because it's just so important that I come 'right now'.
Oh well, what's done is done, but this is the second night this week that I got not one wink of sleep. I am just so tired. Truthfully, I should be at Walmart finishing the shopping that I cut short last night and then unloading at the apartment. I also need to wash all the new dishes, pots & pans, silverware, etc, but frankly - I am just too dang tired to drive anywhere tonight.
Kevin is doing better. We actually went to the FH for over 4 hours today! I cooked dinner and we ate together and he did pretty well. There was another wounded soldier there and Kevin pulled out a few of the coins he got from some of the visiting generals and was showing them off. He probably has about 50 or so at home in FL and he loves to look through them.
Tonight though we are having some issues getting blood. We always do, but they just can't get any at all tonight. Most of the times it takes about 10 pokes, but it's just not happening tonight.
So I am going to quit and head to Walmart for another round of shopping. I did get the keys today and got the car fully unloaded, but it's time to load 'er up again.
Kevin is doing much better - better than he has in weeks, truth be told. He got up and walked around a lot today and he didn't need any pain meds until 5pm - that in itself is miraculous! He doesn't seem to be as dizzy and he was barely nauseous today so that was pretty wonderful too. I am thinking that maybe the acupuncture combined with the two new meds he's on (one for the vertigo and one that has been found to help with PTSD) may just have done the trick. We'll see...I so hope he's just as good (or even better) tomorrow. I would really like to get him over to the FH for a bit.
And tomorrow I have to go early in the morning to get the keys to the apartment. It's times like this that I wish I had help. It's going to be really rough having to carry everything from the car up to the apartment myself. Thank goodness there's an elevator, but it's still going to be a lot of work - many, many trips over the next week. I have to go shopping every night after leaving the hospital too to buy everything we need. Have I ever told you that I absolutely HATE shopping? Kevin loves it, but I despise it. I sure wish he could do that part of it, lol.
Oh well, it's necessary and there's no sense whining about it, I guess. And I have to admit to looking forward to being in one place for a long while - I just wish it could have been where my parents are. They are discussing coming for a visit once dad feels well enough and gets through another round of chemo. It'll be a little while for sure though...
Ok, it turns out that Kevin's Picc Line has become infected. They will be removing it within the next few minutes so hopefully all will be well shortly. I am not sure how it will be treated, but I guess we'll see.
Kevin's fever broke and he is doing much better. They are still trying to figure out what is going on and so far I only know that his CT Scan came back fine, as did his urinalysis. I am still waiting on the doc to come in and go over all the other tests with me.
I wish this was an April Fool's Day joke, but it's not. Kevin became very ill a few hours ago. He is running a temp of roughly 104 and it just keeps going up. They are in the process of gathering ice packs to put on him and hopefully that brings his fever down. He did get Tylenol about 2 hours ago, but that didn't help at all.
I don't know what tonight is going to entail so I wanted to write really quickly just in case. I will update as I can.
This blog is dedicated to my son, Kevin, who was critically wounded in Afghanistan on May 31, 2008. My daughter, Brianna, and I left our homes and our lives to be by his side from that day forward.
Here is where you will learn of all of our accomplishments as well as the trials of his recovery of such serious injuries.
Although we have come through the acute stage of his burns, we are now focusing on the rehab for his brain injury. For those of you unaware, Kevin has lost nearly 85% of the function of the left side of his brain, causing him to not be able to do much (yet) with his right side and he can only say a few words so far. He also has to learn to write and he needs to remember everything in his past life.
Basically, we have 'started over'.
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