Day 1155 - Jul 29, 2011

Kevin wasn't feeling well today. He said it was because he had to walk so much last night and it could have been. It was quite far from where they parked to the restaurant (which is one reason we have never went to the Riverwalk). I'm sure it was also loud there and when he has a real active night he doesn't usually feel up to par the next day.

So we canceled Kevin's appointments for today and hung around the house. He's feeling much better tonight and we just sat down to watch a movie.

We have no plans for the next few days so I am going to skip writing. I'll be back on Monday night. Have a great weekend!

Day 1154 - Jul 28, 2011

Today we first went to speech (which went well) and then we went to PT to see what might be going on with all of the falling. Nobody can figure it out, but I guess Kevin took a HARD fall to the ground tonight while with Johnnie. He's ok, but still...

So Kevin's fellow comrades, Kendra and Anthony, texted me this morning with the news that a SGT that Kevin deployed with was in town and they wanted to all get together. I had planned to go, but then decided to just let Johnnie take him so that the 'young'uns' could hang out. I love all these kids, but it's no fun being the mom that's in the way all the time. So for the first time, Kevin wen to the Riverwalk. I haven't ever taken him because it's such a hassle really and it's just so darn expensive too. But they all met at Dick's Last Resort and it appears Kevin had a blast:



I blurred the text the waiter wrote on the hat as it is very inappropriate for the blog. And I think the laughter on his face says it all. It just makes my heart sing to see him having so much fun and it's just so darn wonderful that I didn't have to be there, lol. I am so past the point in my life where I am going to pay people to treat me like crap. I know Dick's caters to that crowd, but it's just not for me.

And now I am totally heading to bed. I haven't slept yet since yesterday morning and my eyeballs can feel it.

Day 1153 - Jul 27, 2011

We had our last low vision appt today. The doctors both said there there is no possible way for Kevin to regain his vision as his optic nerve was destroyed either by the loss of brain or by the swelling upon impact.

We had a long discussion and they explained to me that although neurons can find another path after a trauma such as Kevin's, the optical nerve can't. There is just no way it can be repaired as it is the equivalent of a spinal cord injury - it's nerve damage, not brain damage.

So, we opted to discontinue therapy because Kevin already compensates extremely well for his visual field loss. Everyone has always been amazed that Kevin doesn't walk into things and he can play computer games with no problem seeing the full screen on is iPad.

We do know things have had to change (ie sitting at the top right of a theater), but we can handle it all with no problems.

I did ask too, if this would keep Kevin from driving if he is ever able to in the future and the doctor said that it would not. If he could ever pass the written exam, he would probably only be able to drive on back roads and never at night, but really...that's a long way down the road to worry about at this point. I just wanted to make sure though.

After his appt, we picked up Christian at daycare and Kevin had a blast helping him 'figure out' how to walk in the walker. I'm not really sure who enjoyed it more, lol.

And to end, here's a video of our little guy from a few days ago:

Day 1152 - Jul 26, 2011

Last night I told Kevin that I would be happy if I never had to watch Harry Potter again. Way too much in one week! But today we went to the final movie and Aggie - you were right - it was AWESOME!! I am so glad I watched all 20+ hours this week because I really had forgotten most of it.

So anyway, let's see...I honestly can't believe that I didn't write the other night. I pretty much fall asleep all the time while watching movies so that part wasn't surprising. But I usually wake up and then can't get back to sleep. Not that night though, obviously.

And I can't even remember what we did on Sunday to inform y'all, but yesterday Kevin had a couple of appointments. The one was with the doctor and she did check his ears. She said he did have a bit of fluid behind the one drum, but it wasn't infected. We don't think that's Kevin's problem, but we are going to try some decongestant and see if it makes a difference.

We also set up an appt with the physical therapist and we will see what we come up with on that about his stumbling and falling.

Kevin had speech yesterday too and it happened to be the therapist we had issues with. I asked Kevin to give it a shot anyway and I talked to her first and explained how things work with Kevin. She must have heard at least some of it because their appt went well. As long as they both remain open minded it should work.

And that's pretty much it for tonight. We only have one appointment tomorrow and then we are going to pick up our little man at daycare. Kevin and I bought him a walker today and we can't wait to see what he does with it! (and Kevin put it together pretty much all by himself!)

No idea, lol.

We have no Internet tonight so I am going to have to skip writing. Sorry - especially after last night when I totally just didn't write! I can't believe that I did that! I so fell asleep!

Day 1150 - July 24th 2011

This is Breezy. I just wanted to let everyone know that everything is okay. I woke up this morning to find the blog not written and called Mom immediately. She fell asleep watching Harry Potter and didn't realize she hadn't written. Dang you HP for giving me and I'm sure others a scare.

Day 1149 - Jul 23, 2011

Today we babysat Christian as it was Chris's birthday. Kevin and I also watched not one, but TWO, of the HP movies. I am so determined to do this for him, lol.

That's pretty much it for today. Mostly we played with the baby so I think I'll just sign off early tonight.

Day 1148 - Jul 22, 2011

I am so glad we have a doctor's appt on Monday to discuss Kevin's tendency to fall lately. Today while heading to speech therapy at the VA, Kevin nearly fell hard. I caught him from behind and a guy passing grabbed him from the front and that's the only reason he didn't land.

Truthfully, I don't even know what caused it. I wasn't looking at his feet at first, but it seemed to me like he wasn't able to lift his right leg enough and he kinda tripped over his toes. He just kept stumbling and that enabled us to help him.

I did talk to Kevin about it today though and we decided he shouldn't go anywhere by himself - no walks around the neighborhood or anything. I worry about being upstairs in my room because I probably wouldn't hear if he fell, but there's nothing I can do about it at this point. Hopefully nothing happens.

So he did well at speech. We haven't had the lady that we had problems with and he gets along well with the one he has had. He did say he wants me to stay if we ever have the other lady and I'm cool with that.

After that, we went to OT and a therapist actually designed and built a new splint for his hand while we were there. It took over two hours for our OT appointment, but it was cool watching the splint be made. They also ordered a different elbow splint and I'm hoping it helps. We will be having Botox consistently now so it should make a difference.

After being at the hospital most of the day we came home and had soup and sandwiches for dinner and then we watched Harry Potter 2. We are hoping to be able to get them all in by Monday night so we can go to see it on Tuesday (the cheap night). Kevin wouldn't have a problem, but it's hard for me to sit that long and watch so much TV - especially that many nights in a row. I'll do it though. Kevin's been very patient in waiting for me to be able to go see the final chapter of HP with him. I sure can't let him down!

Day 1147 - Jul 21, 2011

We had an appointment today with the low vision clinic. I really like this place. I left Kevin go in on his own and I think he did well. The therapist did come out after with some assumptions of Kevin's vision problems, but I jumped in to tell her that he doesn't really have these issues. The main one being that it's normal for someone like Kevin to bump into things on their blind side. Kevin doesn't do that at all. Matter of fact, when he drives the electric cart at Target he actually drives and parks like a pro - even driving in reverse.

She did say that she has witnessed Kevin turning too far to the right to be able to see that way that he is actually not seeing everything to the left. That I agree has happened, but I would have never noticed it on my own.

So she wants to use some sort of prism to help him see and I admit to not understanding this process at all. We go back next week so we'll see then.

And we did watch HP 1 tonight. We had chicken ranch pizzas tonight too and Luann - Kevin once again told me that my pizzas don't compare to yours at Allstars, lol. Maybe you'll just have to come to TX and make them here, lol.

That's pretty much it for tonight. Catch ya tomorrow!

Day 1146 - Jul 20, 2011

Today was a little bit of a slow day. We had to stick around the house most of the afternoon for a repairman. The seal came off of Kevin's shower door and water was running everywhere. We seem to have real water issues in this house :-(

After that, I had a therapy appt and Kevin had to go again and sit in the waiting room. It will be so nice when Johnnie's hours kick in next week and Kev can stay home instead of having to sit there bored for an hour.

We came home after that and Johnnie and Ness came first and then Breezy and Christian came. We all had dinner together and hung out. We were hoping to start the Harry Potter marathon, but didn't start it tonight as planned. Tomorrow night though, for sure. We want to watch them all and then go see the final film next week or so.

Day 1145 - Jul 19, 2011

We made it home! It was a very long day though (with a longer than normal layover) and the last flight was so very loud that Kevin actually became overstimulated. It was raining here in SA when we arrived so I left Kevin at the curb with the bags and went to get the car figuring it was easier than dragging all the suitcases and pushing Kevin a good half mile to the garage. The problem was that it was absolutely crazy at the airport today and there were so many cars and the noise was unbearable for me - let alone Kevin. That didn't help matters.

But, I did get him in the car and we turned everything off (he did allow the a/c on low tho) and there was no talking the whole way home. He took a bunch of Tylenol and retreated to his room, where he has pretty much stayed. Poor kid.

We only have a couple of things on the agenda tomorrow, and hopefully he feels well enough to manage them.

Day 1144 - Jul 18, 2011

I am going to skip tonight and get everything all packed up. We head home tomorrow and I want the bags ready so I don't have to do it in the morning.

Day 1143 - Jul 17, 2011

We had a really great weekend! We went to Riverfest again last night and then out to Allstars. I enjoyed sitting at one end of the bar drinking my Pepsi and watching Kevin at the other end with his friends. He was talking up a storm and from where I sat he looked so normal. So so normal.

We also got to see the fireworks! I was happy to see them and so was Kev. He video taped them on his phone and I think he already uploaded them to Facebook. We were lucky because we got to watch them with Ronnie's parents and little brother (love that family!!). Sadly, we aren't going to see Ronnie this trip because he has drill though.

Today we pretty much rested. One of my friends came and spent time with us, but we barely moved from our hotel rooms. Kevin always takes it easy after a busy day, which is completely fine with me, lol.

And tomorrow's our last day here, then it's back to Texas. I sure like the heat index here a lot better and it's most wonderful seeing all our friends and family!

Day 1141 - Jul 15, 2011

Thank you everyone for all the excitement about the stipend. I am relieved - both about it and the in home help!

I wish I had the energy to write more, but I am just not as young as Kevin and this staying out til 3am is rough on my body, lol.

He, on the other hand, had a blast and was right up front with the band dancing like a lunatic. And he really enjoyed seeing everyone - it's so good to see him smile like he does when we are home.

Anyway, I am going to sign off early and I am going to skip tomorrow night as we will be out late again. I will be back on Sunday night.

Day 1140 - Jul 14, 2011

Everybody should probably sit down for this one:

THE VA APPROVED 40 HOURS A WEEK OF PAY FOR ME!!!!!!!!!!

Yes! Totally doing the Happy Dance!!

Unbelievably, they reworked Kevin's issues and found that I do indeed qualify for the 40 hours a week stipend. AND - I will still get the 46 hours a week of in-home care!

Our most wonderful FRC, Mary, sat down with a whole room full of people and they all had a long talk about our needs - both mine and Kevin's. I think Mary got it across that I am just flat out exhausted and wrung out - both emotionally and physically.

Truly, I could never repay this woman enough for all she has done for us. She should have a tiara and a very tall pedestal. I think she already has a magic wand, lol.

Aflippinmazing though, huh?

And we had a great day in other ways today too. We had lunch and dinner with some friends - we are just making the circuit, ya know? Getting around, trying to fit everyone in. I finally talked to Moe tonight, the first time since we got here. We will be in Brady tomorrow to see the parade (in front of the ambulance garage or in that general area hopefully) and I sure hope that we get to see a bunch of other folks! After that we are going to hit Riverfest and then the Allstars and the Cloud.

We will be leaving the Family House tomorrow morning and moving to a hotel in Kittanning (all those hotel points are still coming in handy). Our doctor's visits are finished as of today so we are free to have a little fun before heading back to TX on Tuesday. I know that someone out there keeps asking how long we will be here to plan something and it really is just a short trip this time. Not to mention that I was just too unorganized and busy to put something together.

And that's about it for tonight. I need to go finish the laundry as somehow we forgot to pack Kevin's jeans? Don't ask me - they were in the pile, but they aren't in the suitcase. He has shorts and one pair of jeans, so I washed everything before heading to the other hotel. Now I have to finish the laundry and pack everything up.

40 hours a week!!!!!!!!!!!! Yippee!!!!!!!!!!!!!!!

Day 1139 - Jul 13, 2011

What a day. I spent 5 hours on the phone - I received 48 phone calls alone this afternoon. This is what most days are like. I added it up last week from just my cell phone minutes and I am on the phone an average of 3 hours per day. Some days it's only 1 and some days it's like 8. And some phone calls are with folks you like talking to, and some are not. Sadly, I have to admit - most are not.

So anyway, Kevin had his appointments with the docs and therapists today. We sure love these folks! Kevin just has so much fun with everyone at the office.

While there each time, he gets these 3D photos taken and Kev pulled out his cell phone and snapped a pic of the screen. These pics are so cool:



And Kevin showed amazing business acumen tonight. We went to a Chinese place that is literally right behind the family house for dinner (and they remembered us from last time!). While we were eating Kevin couldn't believe that no one else was in the restaurant (although to be fair it was close to 9pm). He was so upset that he went outside and took a photo of the place and then asked me to post it on the blog so that we could advertise for them. ALL OF THIS WAS HIS IDEA!!! So, here is the pic Kevin took with his phone. If anyone's ever in Oakland - stop in. This place is on Semple St., just off of Forbes Ave.



Kevin isn't usually all that sympathetic to other people's needs so it amazed me that he thought about this. Good job, Kevin!

Day 1138 - July 12, 2011

We made it. It's been a long and exhausting day, but we are finally here. I hate the fact that there are no direct flights between SA and Pittsburgh anymore because it just takes so much longer and it takes so much more work to get Kevin from one end of an airport to another to catch a connecting flight. Really, it's just so hard to do.

We also had an incident on the final flight. While getting off the plane, Kevin actually fell backward. I was behind him so I stopped the total fall (with the help of the stewardess who grabbed him from the front and pulled him back upright). He still fell most of the way though because he weighs considerably more than I do and he's much taller. He is ok though - no worries there.

He never really used to fall much, but lately it's been happening all the time. I don't know if he's got something going on or if the Bioness is making his leg act differently or what. I will have to call a doctor when we get home and see what they think. Breezy pointed out that it really could be the new brace and she could be right. It sends an electric jolt with each step (when he wears it or when he's in 'training' mode) so it could be 'awakening' his brain enough to make his leg act wonky occasionally. I just don't know.

And I want to send a huge THANK YOU to our wonderful FRC, Mary! She left a voicemail stating that we have been approved for 46 hours a week of help in the home. They are also working on the care-giving thing, but I do know that (for the most part) that is a DC thing, not a local thing.

One step at a time though, right?

Still though...I may actually get some sleep soon!!! Or maybe I can get my haircut? I have been cutting my own bangs for so long, but really need a true haircut...

Day 1137 - Jul 11, 2011

Kevin flew through his Botox like nothing! He only had pain with one poke of the needle (out of eight, I think) and that was the one at the base of the thumb. Both the doc and I were so excited because now we can finally get on a schedule do this every three months.

How far he's come, once again, huh? A year ago he would have never done the Botox without anesthesia. Obviously it was due to his cognitive issues and not pain though. I just wonder if that means his arm/hand will never really function being that he has absolutely no feeling in it.

Honestly, I just don't think it ever will gain anything. The thing I hope for now is just for it to be able to hang straight down and I would love to see his hand opened instead of always being curled into a tight fist.

Other than this, I spent a lot of time on the phone getting things taken care of. I am serious about requiring more home health and I spent hours on the phone today with various people discussing the caregiver's bill. What I learned is that it doesn't matter how much home health you have - it goes solely on the injuries and more importantly - the VA is ignoring those that have cognitive issues as opposed to physical issues. I can't imagine this is what Congress had in mind so if you feel up to it - send letters!

And now I am heading to bed. Everything is all packed and we are ready to go in the morning.

Day 1136 - Jul 10, 2011

Today was a slow day. I made bread dough to make elephant ears for dinner and that's pretty much it. Kevin and Johnnie played quite a while on the Kinect and I made a phone call to my friend Valerie and then scrapped for a little bit.

Tomorrow Kevin is having a Botox treatment done and it will be the first time that he won't be put to sleep for it. They tell me it's quite painful, but we decided to give it a shot and see how Kevin handles it. Since he has less feeling in his right side, it may not bother him too much. I sure hope not anyway.

Other than that, I got everything complete for our trip to Pittsburgh on Tuesday. All car and hotel reservations, I called the TSA and made arrangement for some help with Kevin and I started putting together a schedule of who we can see and when. This trip is kinda short and we definitely won't be able to see everyone this time around. We will be at Riverfest over the weekend though so we hope to see the locals.

Hallie - are you going to be there?
Lorraine - what about you?

So anyway, wish us luck tomorrow. I so want this to work out because I don't want to have to give Kevin anesthesia every 3 months to have Botox...

Day 1135 - Jul 9, 2011

I think I am just going to take the night off. It's already almost 5am and I want to try to get some sleep. I do have some photos of our little guy and one of Kevin's new ring though. His Army ring never made it back from Afghanistan along with all his movies and Xbox games so he bought himself a new one.

Day 1134 - Jul 8, 2011

I quit today. I found out that the caregiver folks were going to give me 25 hours a week pay originally, but changed their minds and dropped it down to 20 hours.

That's it. I'm done.

I called the doctor tonight and told her that that is the equivalent of paying me for 2.8 hours a day and the VA now needs to pay someone else to come into our home for the other 21.2 hours to supervise Kevin.

Frankly, I love my son and would put in the 153 hours I do (the full week minus the 15 hours that Johnnie's here) for the full 40 hours pay, but I don't feel it's right for the VA to take advantage of people that are doing their job like I am - and for next to nothing!

I know full well how much a facility costs and let me tell you - the full time pay is WAY less than putting Kevin in a facility.

I just don't know what else to do. I am just so fed up of being broke, of being tired, of being sick and of being disrespected.

Understand too that I don't expect to get rich taking care of my son, but I sure shouldn't have to worry about having money to get glasses that are so desperately needed and having the cash to go to the dentist which is also so desperately needed and to be able to get a break and go away once in a while - with or without Kevin. Let's not forget about food and shampoo and haircuts and all those other little goodies.

I am just done. I talked to Kevin about this tonight because he saw me crying the whole way home from the hospital and he was upset. I explained what's going on and he knows that I will not be his full time caregiver any longer.

Mary - can you make sure that someone is at our home on Wed the 20th (the day after we get back from Pittsburgh) at 7am to begin caring for Kevin? I would really appreciate it. We will be at BAMC on Monday for Kevin to have another Botox treatment so I will stop in and talk to you about this then.

Day 1133 - Jul 7, 2011

I am going to skip tonight and just head to bed. It's been a tiring day.

Day 1132 - Jul 6, 2011

Today was Kevin's birthday and we kept the day free of any appointments and lounged around (sorta anyway - we decided to cancel 2 events). We did go out to dinner at a nice Italian place called Zio's - Kevin's choice. The food was really good and we had a good time. Johnnie, Breezy and Christian went with us so it was fun.

Before I forget, someone asked me to see the photo of the family that was at the end of the video I had made of Kevin's journey. Here it is (and 2 others):







My mom took this while she was here for the Butler Eagle (hometown newspaper) that ran an article on Kevin's Alive Day. I didn't really mention it because you have to pay to read on their site. It was nice though.

That's it for today so I am going to sign off and head to bed.

Day 1131 - Jul 5, 2011

Something happened at speech therapy today and it gives me cause for concern. I don't know if you all remember me saying that I was upset with the speech therapist that spent time with Kevin while he was in patient at the VA a few months back when Moe came to visit. She was one of those that just can't see outside the box and she mentioned that Kevin really won't get much better than what he is now because he's already 3 years post injury. It made me mad then, but I am looking past it because she's who's been assigned to Kevin and we have to give it a try.

Well, they don't want me to be in the room while he has therapy so I ran some errands today and when I got back Kevin was livid. It was like revisiting the past - a year or more ago - when he wouldn't talk or do anything when he was angry. I haven't seen this side of him in a VERY long time, but today he was demanding that I cancel ALL his therapy appointments and his Botox treatment and everything else - even the trip to Pittsburgh!

By this time he was in OT and he wouldn't even speak to that therapist and he didn't even really want her touching him. I excused myself and went and called the Speech therapist to find out what had happened. She didn't really say much other than he was good for the first 20 mins and when he couldn't figure out what they wanted from him he got upset. He told me they wouldn't let it go and move on, but she said she tried and he just wouldn't try anything else. Frankly, I believe Kevin. He just doesn't get upset unless there's a real reason and I am guessing she was forcing something he just couldn't handle.

When I kinda called her on it she told me that sometimes he is just going to have to accept things and try over and over and over again to do things he can't do. I don't think I agree. I understand completely trying to teach something repeatedly, but if someone is getting agitated - move on! Change tactics for goodness sakes! After 3 years of living this life - if there is something that upsets him - find something that makes him feel good. You don't need to hammer it home that he can't do it. Why honestly would you need to do that?

Ack! I don't think this is going to work, but when Kevin and I went for a walk tonight we discussed how he has to go back on Thursday and I talked him into going. I didn't let on that my heart is heavy with dread - I just spewed all kind of crap about her learning how to work with him, blah blah blah.

Honestly though - I didn't like her attitude back then and I am still not liking it now. I am trying though. Real hard...

Day 1130 - Jul 4, 2011

I hope everyone had a great 4th of July! We didn't do anything. There are no fireworks here due to the drought so there was nowhere to go and nothing to do. It was ok with both of us though because our schedule has gotten pretty rough lately.

We did have a couple of nice dinners over the weekend, but I miss having a grill. What I wouldn't do to be able to grill out as opposed to roasting. Oh well...

So Kevin got one of those Xbox Kinects for Christmas and he refused to even play with it until yesterday. We finally got Kevin to agree to let Johnnie hook it up and 6 months later - Kevin played. Now he's hooked! We are having so much fun with it and it is GREAT therapy for Kevin. Between this and playing the Wii at the VA - who knows how far he'll go.

I have some videos to show of him doing these things, but I'll have to upload them tomorrow. Right now, I'm going to bed. We have another busy week ahead of us and then we head back to Pittsburgh next week. I still haven't made all of our arrangements yet either...

Day 1127 - Jul 1, 2011

I am going to take the weekend off. We don't really have plans, but tomorrow is Breezy's birthday, Wednesday is Kevin's and we are just going to relax and celebrate. I'll be back on Monday night.

Have a great 4th of July everyone!!

Day 1126 - Jun 30, 2011

Kev and I had a very long day today. We started with another Bioness appt and we think that it's programmed correctly this time. We have to start out slowly because with each step it sends an electric shock to Kevin's muscles and it's quite exhausting for him, but we did do about 15 full minutes of walking today.

After this we grabbed a 20 min lunch in the cafeteria and then headed to speech therapy. That lasted another hour plus and then I walked Kevin down to PT. Unfortunately, the physical therapist didn't show up for her appt, but we did end up talking with a hand therapist instead. While there they decided to order a Bioness brace for his arm/hand as well. It's the only hope we really have of ever getting it to work.

And to end our time at the VA, we popped in to see the podiatrist as well. I am guessing he didn't get all of the ingrown nail because he is now seeping blood around it. We waited in his office for a while to see if an actual doctor could look at it, but nobody was able to. They are going to call tomorrow and see when they can get us in.

After all of our appts, we went home and I made a few phone calls and then Johnny and Ness came and we all went to go to see The Transformers. The first theater we went to was pretty much sold out so we opted to go to a larger theater and take our chances there. We were able to get tickets, but boy was it packed! And let me just say - hilarious movie! The whole theater was laughing hysterically.

That pretty much sums up our day so I guess I'll try to get some sleep.