I think I spoke too soon about the pain level for Kevin. Last night he wanted meds about every 45-60 minutes. He called me all night long. I felt so bad because there really is only so much I can give him, but we did make it through the night in the end. He has needed quite a bit today too, but not like it was last night.
I am concerned that he does appear to be building up some fluid over the plate (which could be causing the pain), but I am hoping it will go away. The only thing is - it's getting larger, not smaller. I am going to give it until Tuesday and see what happens. The problem is that the glands that absorb the fluid were burnt too badly on Kevin causing him to not be able to reabsorb all the fluids in his head.
So the get-together is going to be on Sept 11 at the Allstars in East Brady. I would love for all of the bloggers, friends and family to come. I want it to be a surprise for Kevin so I am asking for everyone to try to be there around 7pm (Kevin and I will come around 7:15). Although the Allstars is a bar, we are going to be in the dining room so kids (or his friends that are under 21) are welcome until about 9pm. We will have appetizers and drinks are available for purchase. I will try to grab some soda or juice for the kids. Truly, I hope everyone can come. I want Kevin to be so happy to see everyone.
And I want to reiterate that we will not be going anywhere to visit anyone this trip. I know we always drove all over to see everyone, but this trip there won't be time. If you want to see us - this is probably the only way to do so. (and if we aren't at Allstars later in the evening - check the Cloud - we gotta visit Nay too)
And before I forget - Karen - you asked about the baby...all is right in Breezy's household, lol. She bought the baby a Steelers jersey this week and as far as she's concerned - nothing else is necessary. Unfortunately - Chris bought the baby a Giants jersey. Geez. You ain't catching me anywhere near that house when the two teams play each other, lol.
And now I am heading to bed. It's early, but hopefully Kevin will let me get some sleep.
So Kevin and I are going home to Pennsylvania for a short visit the week after next. I have to be in court for a guardianship review and I really have no choice but to take him with me.
I had already cleared it with the neurosurgeon and he said he sees no problem. So as long as Kev doesn't get any infections, we are good to go.
We are both pretty excited and I have to share what Kevin said this morning. I told him that we were going and his eyes lit up and I could see the wheels just churning and the next thing I know he says - clear as a bell - SURPRISE! (not a word we have ever worked on either) He wants to go home and surprise everyone so I am going to ask that if anyone sees him around town - please act surprised!
On a side note, I do plan to have a little surprise get together myself for him on Saturday the 11th. I don't know where yet or even what time, but I will let y'all know. I so hope he gets to see lots of his friends. We will only be there a few days as the trip is not really in the budget, so the get together is really going to be the only way we can see people. We won't have time to get out and about.
I just can't wait for everyone to see the change in his speaking! Today he has just repeated everything I said. It's like being with a whole new person! I really do like that he is able to repeat, but what's even better is when he comes up with words on his own - like the word "Surprise". How cool is that, huh?
And to finish this post, as well as show you guys what I mean, here is a video of Kevin singing a song to my mom. He has never been able to say the word "Grandma" until last night and this song was always a little slurred. I honestly cry every time I watch this.
We went home today! Kevin is doing fantastic. He only took one dose of Tylenol since we got home early this afternoon and he is handling the pain extremely well. I only hope it stays this way (or even gets better). No pain would be soooooo good!
And it really is unbelievable, but Kevin has probably said about 50 new words today. Clearly. A lot of them he just repeated after I said something, some of them we had to practice and a couple of them he just said on his own.
For those of you that have been reading all along, you may remember me mentioning back when he got the plate the first time that it's been known to happen where someone that can't talk at all will be able to once their plate is put in.
Kevin didn't just wake up and be able to speak fluently, but WOW! What a difference! He is able to say more words, he is also able to speak them correctly (for the most part), and even better - his thinking is clearer. You can see it in his eyes and how he reacts during activities and discussions.
Now we just need to have no infections and no 'real' fluid buildup. When checking his head tonight I noticed the does have a small amount of buildup, but I was told that can be normal for a few days. We just need it to go away over the weekend and all will be well.
Kevin is feeling much better today. He is still in pain occasionally, but he has handled it much better today than yesterday.
He did have Botox done this morning on his arm. I know Kathy in IA asked about that and it wasn't done during surgery because they didn't want any other possible sources of infection in the OR. So he had it done today, but we had to keep his arm in a sling until tonight so that it didn't slide out of the shoulder socket due to the conscious sedation.
He did get up for a bit today too. Both Lea and Johnny came to visit this afternoon and Kevin enjoyed them both being here.
And the neurosurgeon came in too and removed the drain from his head. He said that if Kevin doesn't build up with fluid, we can go home tomorrow! So far so good, but morning is hours away yet and who knows what can happen overnight.
And now I am going to sign off early, but I am going to leave you with some photos of Kevin from today:
Oh...and to anon...yes - we did get the package of Airborne goodies! Kevin opened it yesterday and immediately put on one of the shirts. His jaw just dropped when he got the box and saw the hat, then the shirts and the buttons. Thank you so much, Butch!
Ok, I am going to head home and pick up the house a little bit, then watch a movie and go to bed early.
So today I was on the phone in the little anteroom that leads into Kevin's hospital room and I heard Kev ring the bell for the nurse. I heard Sue say 'what do you need Kev?" and then he replied (and you might want to sit down for this) "I WANT A PAIN PILL PLEASE"!!! Say what?! When did Kevin become able to string 6 words together without even one nudge from me?
I had my friend hold on and I went out to the nurse's station and I said "Sue - did Kevin just say a whole sentence to you?" and she was already exclaiming to everyone that he had and all the nurses and everyone were just clapping and so excited. When I told them I hadn't even said it first for him to repeat and he just completely said it on his own we were all beside ourselves in excitement! Holy crap!
This plate is gonna make such a difference!!
I thought this yesterday because when Kevin was just back from ICU and still pretty much sleeping, just out of the blue he said "I want strawberry milk". Up until then he had never said the word "want" without a nudge of some sort - usually me saying the whole word a couple of times to get him to say it.
So then tonight my friend Mary Jo facebooked me and said that Kev needed to practice saying her name. Well the first time I said say "Mary Jo" he did. So we called her and he said "HI MARY JO" right off the bat and then she put her little boy Mathew on and Kevin said "HI MATHEW".
I'm tellin' ya - this boy is gonna talk someday. Sooner than I originally thought too.
And today we took off the bandages. I took a couple of photos with my phone, but they are blurry so I will try to get some more tomorrow. To be honest, Kevin is in a lot of pain and not up for pictures. For some reason, the neurosurgeon took away the IV pain meds this morning and he is suffering. I talked to the doc about getting him back on something, but the order was written for Morphine once every two hours. Morphine only lasts about 15 minutes so Kevin is really hurting. I don't think the surgeon realizes that Kevin has quite the tolerance for narcotics as he's been on them for 2 years or so.
Anyway, he looks pretty good, but I will admit that I thought it would be better. He still has that indent where it was the last time - it's just not as pronounced. I am going to wait and see if there is still some swelling that may change the appearance after it goes down, but the neurosurgeon already discussed taking fat from Kevin's belly and injecting it into that area. Geez.
I was under the impression that the plastics guy was going in at the end of the surgery and cleaning his appearance up, but that didn't happen. Maybe I was mistaken in thinking that? I don't know...but I really wanted near perfection and we didn't get it. Maybe I just expect too much...
But I guess it really doesn't matter what I think. It's all about what Kevin feels and so far I think he is happy with it. I am hoping he feels better tomorrow and can get up and really take a good look at himself.
And now I am going to bed. I came home early last night and dropped my head on my pillow immediately. I barely remember even getting into bed and I slept hard until 10:00 this morning. YAY!!
I am going to post tonight's entry early so I can go home and sleep all night tonight.
So...they took Kevin about 8am this morning and in roughly an hour the nurse came in and told me that they couldn't put the plate in his head because it appeared that Kevin had an infection around the expander.
I was so upset. I couldn't even make one phone call because I was truly devastated. So I just curled up on my cot and tried to pretend that I didn't hear what I had just heard. Mostly, I just cried.
I did understand that it was necessary to keep the plate infection free so we sure didn't want to implant it in an already infected area, but @#$@&!!
So as I was lying here the plastic surgeon came in - the one that was worried about the infection. He told me that there was some funky fluid that had white particles floating around in it and it made everyone just stop.
Lucky for us - all of the surgeons really wanted to make this work for Kevin so both plastics and neuro had a hand in taking the fluid to the lab and getting it tested right then and there for infection.
At this point, Kevin was already sewn back up and in recovery since they only removed the expander.
Again, lucky for us, after a half hour or more, the lab determined that the fluid was infection free so the neurosurgeon ran back upstairs and took Kevin back to the OR where he completed the initial surgery putting the plate back into Kevin's head.
What a morning, huh?
So Kevin was in ICU for a bit and they moved him back to his regular room a couple of hours after the surgery was complete. He has since taken some pain meds and has been sleeping for hours. I made a bunch of phone calls and Breezy is on her way with some soup from Panera Bread for dinner and I am hoping he will eat a little bit at some point tonight. This has become our traditional after surgery meal. We always have Broccoli and Cheese Soup with a baguette.
And something interesting happened today too. The neurosurgeon brought us the model of Kevin's head. It is an exact replica - size and shape - of what Kevin looks like under all that skin. Here are some photos:
So can y'all imagine the questions this is gonna raise at airport security?
"Excuse me ma'am...why do you have a skull in your suitcase?"
Well we are all settled into the hospital. Kevin's surgery is first case in the morning and I am estimating him leaving his room around 7am or so. The surgeon said he should be done around noon with the cranioplasty, but I don't know if the Botox is following or if they are doing it at the same time. We shall see, I guess.
So they tell me the plate is beautiful. This one was built to replace the fatty tissue and muscle that was lost when Kev landed on his head - it's what should have been done the first time at the VA in FL and all of this is because it wasn't done right back then. I am so anxious to see what he looks like after the surgery.
Kevin is skeptical. He doesn't believe it will look as good as they say because he thought that the last time. It's amazing that he can remember that - but not what he wants to tell me if I take my time getting to his room. So strange, huh?
So anyway, it's like a family reunion here, lol. Everyone is so excited to have Kevin back at BAMC and they are all coming in and visiting and playing quick games with him on his iPad. He is just lapping it all up. It makes me happy ;-)
And now I am going to sign off and read while the lights are allowed on. I will post as soon as I can after his surgery and let y'all know how it went. Wish us luck!
Well, we are all ready to head to the hospital tomorrow. Everything is all packed and we are both emotionally psyched for it.
As for today, I didn't do anything, but Breezy and Kevin went to Walmart after dinner. Mary Neal - I had to laugh at your comment because you have it all wrong - if you ask anyone that knows me they will tell you that I DESPISE shopping! Kevin, on the other hand absolutely loves it!
I was so glad to just be able to stay home for a bit and get the kitchen cleaned uninterrupted.
So anyway, that's really about all I have to say tonight. It was a nice, boring weekend - exactly what was needed before major surgery and a gosh knows how long hospital stay...
We had a very interesting day today. First, Kevin had another fantastic therapy session. While there I asked the therapists to help me work on Kevin being able to say "I want..." It's my goal to start introducing more sentences as opposed to single words to ask for things. So now he has to say "I want strawberry milk" or "I want lemonade". So far, so good, but I still have to usually nudge him with the beginning sounds.
After we got home we had a film crew come to tape an interview with myself followed by some interaction between Kev and I. If I remember correctly it is going to be used in front of Congress and will be submitted to the media, hopefully garnering interest in the issue of caregiving. The folks that came were all so nice and Kevin did really well with them - showing off all his gadgets - especially his iPad!
And then tonight Kevin actually sat in the living room with me and watched not one, but TWO movies! We watched "She's Out of My League" first because I noticed his friend Grant said he liked it on Facebook one day and then Kevin had taped "Stomp the Yard" and we watched that one next. I figured if Grant liked the first movie, Kevin would like it too and he did! (thanks Grant!!) Kevin really loved all the Pittsburgh stuff in the movie too (it was filmed there). He was so excited to see PNC Park and the Pens playing. It was just a little taste of home for both of us really.
And now the boy is trying to get settled. I am hoping for a very lazy weekend as it will be rough once he's in the hospital. I know I will be staying there Monday night with him, but even if I come home at night the rest of the time he is inpatient - the days are just so long.
So anyway, here's to doing nothing the next two days!
What a horrid day. You just can't believe how bad it was and I'm not going to focus on all of it and explain each disgusting detail, but I will tell you how it ended.
We went to return movies at the family center and then went to the store to pick up milk and stuff. Johnny went with us and he was to leave at 10pm. So we got back to the apartment right at 10:00 and I put the key in the lock to unlock the door and it wouldn't turn. Well...that's not true...it would turn, but only as if to lock the door. It would not UNLOCK it at all!
So I called the emergency maintenance line for the apt complex and I also called Breezy to have her come over too. I had a bad feeling because the elevator was down over the weekend again and when I called on Sunday night (after Moe and I got here) I got no response. When I called the office on Monday morning, they seemed shocked that no one called me back the night before. I did wait a few minutes tonight, but when they didn't call back, I did decide to have Breezy run over with her key (she lives a half hour away). Thank goodness I did too because nobody has ever called me yet - 5 hours later (and I did call and leave more messages - none of them friendly!).
I just don't know what's going on here, and frankly - I don't care. There is just no excuse. What is the sense in having an emergency line if no one is manning it?
Now tomorrow is a really busy day for us, but I have got to find the time to go to the office and make sure they understand that this was the last straw for us. There are just too many situations here - heck, the elevator has been down 3 times in the 4 months we have been here alone. Totally unacceptable!
And you know what? They are just going to have to pay Johnny's wages as he was an hour late getting out of here and I don't think Kevin should have to foot the bill.
I am still pretty mad! Hopefully I can sleep though as that's where I am going right now.
Kevin has been sleeping for hours already. We completely wiped him out today. First his therapists worked him really hard (their words) because they feel he can do it. I was happy because he only called me one time to come back and explain what he was trying to say - they are starting to understand him and how he communicates - and I just really want him to be more independent. I am thinking that soon I will be able to try dropping him off and going somewhere while he has therapy. Of course, we may end up starting over once the plate is put in as we don't know how long it will be before he can go back to therapy, but we'll see.
But anyway, after we left therapy we went and had a quick bite to eat. We really had to eat quickly though because we decided to see a movie and it was starting in an hour. Traffic here in SA is always an issue so we needed extra time to get there as it was the 5:00 showing. We made it just in time though and I got Kevin all situated and run back and get his snacks and still got to see a few of the previews.
Did you all know there is a Jackass 3D coming out? Yikes! Can't stand that stuff, but Kevin loves it. Looks like he and Johnny will have to see this one on their own.
After all that, I was too tired and wanted to go home. I needed to grab a few groceries, but opted to wait until tomorrow. Kevin wanted to go shopping, but I held firm and we just went home. He fell asleep pretty quickly after we got here and has been sleeping since. Poor kid.
And now I think I am going to try to get some sleep. Might as well take advantage, right?
Today the speech pathologist from the VA came to our house for a session and it went so wonderfully. Kevin just did so well. She was doing word pairs (salt & ______, cat & ______) and Kevin got most of them without needing any help. She was also giving him instructions (touch your ear, point to the door) and he was able to do more of that than he could do previously. I was just so impressed at the gains he has made. It is so thrilling to hear him say words that no one has ever worked with him on.
It reminded me of the day last week (I don't think I mentioned this - sorry if I did) when we were driving down the road and he looked down at the clock and said "three o'clock". Now he knows his numbers and says them no problem, but we have never even tried to get him to say "o'clock". It just came out on it's own and we are seeing more and more of that lately. Exciting, huh? I told him tonight that I expect he will be talking pretty well within the next couple of years.
So we also discussed apps for aiding him in talking and today we downloaded one that looks good so far. It doesn't allow for customization though so I emailed the developer and asked if that option was going to be available in the near future. The problem with most of these apps is that you need to know how to read and type fluently and Kevin is just not there yet. He is reading fairly well, but he can't seem to spell - only recognize words. It makes it difficult at this point, but I feel sure as time goes by it will get easier for him.
So I am going to answer a few more questions as I am still so far behind:
To anon that asked if they have ever prescribed a sleeping pill to knock Kevin out - the answer is no. I don't really want him becoming dependent on any more drugs anyway, but the main thing is that they mostly make you groggy and unfocused the next day. We have enough trouble with his thought process and I would rather stay up all night that have him even more messed up.
It's not to say that he has never had any sleeping pills - we did use them a few times at the VA in FL, but they didn't always work for him anyway. Some nights it made things worse and he was wound tighter than tight.
Janna - I am hoping the nauseousness goes away when the plate is put in, but I am not holding my breath. It's a common symptom of TBI so it may be here to stay. Poor Zach (and you!) - I am so glad that things are better now!
Karen - how is your mom doing? And I would appreciate it very much if you could find out if that app Glenda uses has some sort of 'try before you buy' option. I just worry with him not being able to read/type as mush as necessary. If you don't have the time, don't worry about it - I will do it when we get out of the hospital.
Chalkie and Carol - Kevin is ADDICTED to that Fruit Ninja game you sent him! He and Lea played it for over an hour today and they were laughing and having a blast! I owe you an email and will try to get to it soon! Hope Carol feels well!
Hallie - Kevin isn't allowed to get on a skateboard until his plate is put in. We can't have him falling while his brain is unprotected, but once it's in - I suspect he and Johnny will hit a skate park as soon as they can, lol. And how is your husband doing? And one more question - you mentioned a Marcy - does she work at Kittanning hospital? I know a few Marcys that used to hang out at the store, but only one that works in radiology at ACH. If it's her - tell her 'hi' back! Or even if it's not tell that person 'hi' too, lol. But you'll have to email me her last name as I just am not sure who else it could be.
Ok, I have a few more, but will wait for another night.
Ahhh...vacation was nice! We really had a good time in Galveston and we both look forward to the next time Moe gets to come. Unfortunately, she had to go home today, but she does get another week's vaca before the end of the year. I think we will just end up sticking around home then though as the holidays will be close.
Obviously we don't really have many pics (1 to be exact) of us together on vacation, but here is one that a stranger took at Moody Gardens:
So I talked to the neurosurgeon today and it looks like Kevin's surgery is scheduled for next Tuesday. YAY!! We are trying to figure out when to fit in all the pre-op tests now as no appointment had been made and both our schedules and the surgeon's are filled up. I guess I can move things around on our end, and I guess he will have to too.
Kev had therapy today too and did really well. He is having a blast with the therapists there and they seem to play off of his jokes pretty well too. I like how they work with him on speech and cognitive function at the same time they are stretching him and having him peddle the bike.
And now I am going to leave you with a few more photos. You will just love the one, hehe.
This one is of Kevin, Chris and Breezy:
This is me and the kids with Moe:
And this one is of Kevin messin' around sticking his butt out and both Breezy and Moe made like they were going to grab him. It was just so hilarious!
Today we went out to dinner for both Mary's birthday and Johnny's birthday. We went to a restaurant called "The Magic Time Machine". It was such a cool place - the atmosphere was so totally awesome - but unfortunately Kevin was just miserable. Here...you can see...just look at his face in this picture:
(L to R - me, Chris, Breezy, Moe, Mary, Johnny and Kevin. Excuse the horrible scan too, my good scanner is in FL and this one was made for documents, not photos)
After just a short while, Kev decided he wanted to go home so Johnny offered to take him and they went out, jumped in Johnny's car and away they went. It was kinda nice seeing Kevin drive off with a friend, almost like the old days, but I would have preferred for him to stay and eat with us.
But, the rest of us stayed and Woody and Indiana Jones sang to Mary for her birthday. It was so funny! Here is a pic of Mary blowing out her candles.
We really had a good time as the conversation just flowed effortlessly. The characters were fun and rowdy and the decor really was intriguing. The food wasn't the best, but we were able to look past that as we all drank our Harry Potter bubbling drinks.
I just hope that we get back to the point where Kevin can enjoy himself. He rarely does anymore.
So as you all know, tomorrow Moe and I are going to Galveston for the weekend. I am really excited and I am so happy to report that Kevin is cool with it finally. He was upset because he wants to go away somewhere too - he wants to have fun - so I told him that once he is feeling better after his surgery and after detox we will go and do just that. He's just not ready, although he doesn't realize it.
So anyway, after much deliberation, I have decided to not write the blog this weekend. I hope everyone does something fun and I will catch y'all Monday night.
Yay! Moe is here! Her flight got in on time this morning and we just gabbed all day.
Kevin was supposed to go to therapy today, but he wasn't feeling well (he was in a lot of pain today) so we just stayed home and he barely got out of bed. I hate to say it, but in a way I was glad (not that he was in pain - just that we didn't have to go today). It was going to be a tight stretch to get dinner done if we had went to therapy.
And Mike and Cat came for said dinner and we had a great time. They were both such great people! It's strange to have another East Bradyite here in San Antonio, right?
So I know this post is out of whack, but I am exhausted. I didn't sleep at all last night and it has caught up to me. Moe's been sleeping about an hour already, but Kev is still raring to go. I am hoping to hit somewhere in the middle real quick - you know...that place where you are just almost sleeping, but not quite? Maybe Kevin will be cool with that. I don't know though. He is still in quite a bit of pain so we'll see. He didn't even eat dinner and he loves stuffing!
So I would like to ask a favor of sorts - one of the guys from the hospital in Tampa, Anthony, is in a tough spot. He had surgery and subsequently got a pretty bad infection...could y'all keep him in your thoughts? The next 72 hours are the most critical and I feel confident that he will be just fine, but still...it would be appreciated.
Today I had to leave Kevin with Lea and go to a meeting about his CRSC - some sort of combat pay. Unfortunately we need all these papers that are gosh knows where and in what pile at the house in FL. The guy told me there is no time limit and that's a good thing as we won't be back to FL for quite some time yet.
So Kevin introduced Lea to the movie "Airheads" - one of those movies Kev watches over and over. I guess they watched it while I was gone and I'm sure that made Kevin happy. He likes watching movies with both Lea and Johnny - he is such a movie buff.
I made Dirt (a dessert) after I got home for our dinner tomorrow night. We are actually having company. One of Moe's friends from East Brady lives only a few miles away so both Mike and his wife Cat are coming for dinner. I have never met Mike, but I had met some of his family before. I am looking forward to meeting new people.
I want to get to a few more comments tonight. There is still quite a pile in my email.
To anon that sent the handwriting websites - THANK YOU! So cool!
Jessica - you asked if Kev still vomits a lot from the CSF and the answer is 'sometimes'. We go through spurts where he will vomit many times over a couple of days and then he won't again for a month or two. We never know when it's coming or what triggers it. We have pills that we stick under his tongue that will help with it, but he has to take them before it gets too bad. I always hate when I am sleeping and he gets sick because I don't get to him fast enough to help out. It's the reason we need a large capacity washer/dryer - I launder a lot of bedding!
Janna - were your son's expanders as large as Kevin's? Wow, huh? I had no idea what to expect with these things, but it sure is huge on top of his head! The PA was just saying last time we saw him too that he is glad Kevin didn't have any pain. He said some folks get severe headaches, but Kevin pretty much always has that so there would be no difference.
Less than 2 weeks to go!
Cathy M - I'm all for Kevin and I gaining independence from each other as well. I am quite sure that it will happen in the long run, it's just going to take some major adjustments on both our parts - more his though. If he could just get to the medically stable point we would just be so damn happy. So much more can be done to help him once he is stable.
Janet - we got the little emotion magnets in the mail! Those are just so cute, lol! Kevin really got a kick out of some of the faces, hehe. I am also thinking we have one of those sound machines here somewhere from 'the quilt lady' that comes to BAMC once a month. Wonderful woman! I will have to dig it out. I tried it right after we got it, but he didn't want the noise in his room. He's changed though in the last 6 months though so maybe he will be able to handle it.
Mike and Rebecca from the Post Gazette - thanks so much for the e-card! Hilarious! I miss you guys! Why don't you talk your bosses into letting you guys come to SA? LOL!
Allrighty then...Moe is texting me while waiting for her 6am flight. Yippeeeee!!! I need to give her a call and then try to get some sleep. Kevin's still wide awake though so I doubt it's gonna happen...
If you can believe it - today Kevin and Johnny left and went to a skate shoppe! Yep - they left me all alone here for a couple of hours and they went shopping. I could almost here this sigh of 'all is right in the world' when Kevin walked in the door with a new skateboard. Yes, yes - I know - he can't even ride it, but it is the one thing that he is most in tune with. The one thing that he NEEDS to have near him. I foolishly left his other ones in FL so he hasn't had one in his possession since we got here in Feb. Poor kid.
BUT - all is well now. And who knows...maybe it will get him working at PT and OT all the more with the goal of being able to ride it someday.
(oh and I already took a picture of it, emailed it to him and it's now his background on his iPad. You shoulda seen his face when I surprised him with that!).
So I got to stay home ALL ALONE!! Yipee!! I scrubbed the kitchen down and then prepped some snacks/lunch for the next couple of days and then called my parents and actually had an uninterrupted phone call with them. Amazing. I still can't believe he went and I am going to try to push Kevin to get out with Johnny every Monday. I know they are both anxious for the movie "The Expendables" and I think that's on next week's agenda.
And don't you think it's just a miracle that Kevin can go shopping kinda by himself? I mean, he knows how to use his debit card and everything. I am allowed to give him a monthly allowance out of his VA benefits and he does really well with it. Obviously we don't really do much so there isn't a whole lot of money spent each month, but it still just makes me so happy that he CAN go shopping and he CAN use his own debit card.
Ok, I need to get Kevin's bank accounts reconciled so I am going to sign off. Before I go though, to the anon person that asked about shirt sizes - we are both mediums.
And technically - it's only 1 1/2 days before Moe gets here. And Moe? Don't let me back out of vacation. I am having a little bit of anxiety at times about leaving him. I know Breezy can handle it, but still...
Oh shoot - and speaking of Breezy - I have had a few phone calls lately and everyone wants pictures of the preggo girl, lol. Here she is:
She is somewhere around 4 1/2 months pregnant. She thinks she felt the baby move last week one day, but now she is questioning it. She just went to the ob/gyn on Thursday and the baby's heartbeat is really strong. The doc also told her the baby is about 10 inches long and it's head is the size of a walnut.
I am still having all of her symptoms. I have been nauseous for a while now (I even threw up last week after eating pizza), I am constantly peeing and oh the heartburn! I have not had heartburn since I was pregnant with Kevin. I ONLY get heartburn when I AM pregnant. Totally not right for me to be having a sympathy pregnancy. I'm tellin' ya - if I feel even one tiny contraction...
I am assuming that Kevin has a bit of a stomach bug. No sooner had I posted last night than he started vomiting. He had been feeling better today, but only til after dinner. He got sick once again after eating. He's been ok since then so hopefully he makes it through the night just fine.
I am going to just answer some more of the comments/questions:
To anon who asked if Kevin still has "airborne pride" - there isn't really a way for me to know. He doesn't really talk about it and as for him not wearing any 173rd clothing - it's because we just don't have anything like that. There are probably places on post near BAMC to buy clothing with the emblem on it, but I would have no idea where.
Anita - you asked if Kevin cleans up well and puts things away in an organized fashion. Oh my. He has EXTREME OCD. First let me say that he doesn't like to clean, hence all the arguing, but according to Kevin, it's my job to make sure everything is in it's perfect place. I have been making him do more and more, but you wouldn't believe how organized things are for him. His shoes have to be perfectly straight. His clothes have to be folded a certain way. His juice has to be in the same place in the fridge. The velcro on his brace has to aligned just so - no overlap anywhere. His remotes have to be lined up exactly the same every night. There can be NO crumbs or dirt on the floors (did I ever tell you that I used to have to clean the aisles at Walmart as we walked down them?). And things are organized by color most of the time (you should see him eat M&Ms - totally piles them up by color and eats one color at a time). I could go on and on here, but I think you get the picture.
Long-time RN - you asked if the moving traffic and all the visual stimulation of buildings passing by etc causes Kevin to need to sit in the car once we arrive somewhere. I can only assume so. He had gotten better about this before the plate was removed so I am hoping things go back to being better once that plate is put back in.
As for him closing his eyes while in the car - he can't really close them anymore. He is going to need surgery again on both eyes as his facial burns are still healing and pulling. He does try to do it though when he is really over-stimulated. He learned a long time ago to kinda roll his eyes back into his head to he can't see things.
GrannieEv - I would love it if you could arrange some samples of those essential oils! I sometimes burn candles in his room, but it's more just to freshen the smell as he keeps it all closed up all the time. If this works to help him sleep better, I will be a customer for life!
Ok - there are still more questions, but I am going to try to get some sleep. Like I mentioned, it was a rough night last night.
Today Kevin and I went to the VA hospital here in SA to meet some of the heads of the polytrauma center. They are in the process of building a new state of the art facility and we wanted to get together and discuss some of the problems that we had at the VA hospital in FL so that they can try to make sure those things don't happen here. I also wanted them to meet Kevin because reading about him could never clearly give the picture of how far he has come.
We had a really good meeting. I wish I could just go blindly forth and feel secure at a VA hospital, but unfortunately I can't. I don't feel it's any one person's fault, but the experience in FL and the constant red tape just holds me back a bit.
However, I am open minded and I am willing to give it a chance. I really do like the people that I met today and I am excited to tell you that some things happened right on the spot. For example - a new wheelchair was ordered for Kevin. The one he has currently really doesn't work for him anymore as his body shape and size has changed. They also ordered us two cushions for his wheelchair as the one he has now has been flat for over a year. It wouldn't stay inflated due to multiple leaks. And I am excited to say that they are planning to put a one-handed brake on the new chair as opposed to him having to reach across and struggle a bit to get the right brake on. They also spent some time teaching me how to repair parts of his chair. I have been doing simple tasks, but needed more guidance and they supplied it today.
So I am REALLY behind in answering questions, but I am only going to get to a few today. This post is already long, but I need to get started on this.
Ida - you asked if that was a Toe-Off brace on Kevin's right leg? Hehe. I had no idea, but I googled it and and yes - that's exactly what it is. He can't (or shouldn't anyway) walk without it as his foot turns in and under. I left a post on your blog about how happy I am that things are getting better for you! Yay!
Miss Em - thanks first for the shopping cart link. I got one and it has helped immensely!
Mary Neal - it's possible that some of Kevin's pain is from his teeth, but there's no way to really know. I am anxious (and so hopeful) to see if the bulk of the pain goes away once the plate is in. Gosh I hope so. I will mention that the reason some of his pain went away wasn't because he started seeing the dentist - it was because I added another dose of methadone to his daily cocktail.
Tina and the anon person - got the iBallz in the mail today. Wonderful gadget, huh? Kev is in his room playing on his iPad right now. He LOVES that thing!
Ok - I know there are tons more questions, but this is a pretty long post. I will try to get to the rest over the weekend.
Today was a decent day. Breezy came over for dinner and then when Johnny got here Breezy and I went to the family center on post to return some movies that we got last week.
We stopped at Target on the way home and I bought some workbooks for Kevin to help him learn to write. Up until now he refused to do them as they are for kindergarten age children, but we had a long talk yesterday on the way to therapy and I told him that after watching him write cat and dog, we really needed to work on this. I explained that he really does have to start over just like when he was a small child. He finally agreed. I have tried to do this quite a few times, but because the books are not age appropriate he was having none of it.
I also purchased a couple of 'I Spy' books. I toyed with a "Where's Waldo" book, but I knew it would just be too much yet. Kevin was really excited to see these I Spy books. He loves stuff like that and dove right in after Johnny left. Matter of fact, here is a photo of him working on one of the puzzles. What a look of concentration, huh?
We also taught Johnny to play Skipbo tonight. I talked to him some about him helping me to get Kevin out of bed. I think it's great that he will watch movies and things with Kevin, but I really want Kevin up doing activities as opposed to lying down all the time. I feel confident that things will change after the plate is back in, but I want to start trying to break the habit of him being in bed constantly now so that it's easier when his head is fixed in a couple of weeks.
It has been a really rough couple of days. Kevin must have hurt himself a little bit at therapy the other day (or at least used muscles that haven't been used in a long time) and he has been in a lot of pain since Monday night. I am medicating him pretty constantly and it's still been very difficult to get through the days.
Poor Lea. She came yesterday and after literally being on the phone for 5 hours straight, I opted to get out for a little bit. Actually, while I was talking to one group of people on the phone I mentioned how I hadn't even been able to get the massage that the kids gifted me for Mother's Day. So that's what I did yesterday. I FINALLY went for the massage!
But anyway, Lea even texted me and while I was gone and was shocked at how needy Kevin was. She met me downstairs at the car because I went for groceries after the my spa appt and I grabbed her by the shoulders and said "WELCOME TO MY WORLD, LOL!!!!" Oddly enough - he is usually pretty good while Lea and Johnny are here. They usually sit and watch tv or something like that and that was apparently not happening yesterday! She was seeing how Kevin is all the time with me.
So anyway, he was medicated enough to still go to therapy today, but I had them take it easy on him. No bike, just some stretching.
And for some GREAT news!!! IT CAME!!!!!!!!!!!!!!!!!!
Yes, the iPad came!! We got it yesterday and I spent some time getting everything all set up. He can now watch movies via netflix, go on Facebook, check his email (I had to set up a new one so if you are his friend and would like to email him - message him on Facebook), he can go to his MySpace page and so far I downloaded iSpeak. I still have to delve into that one app to help him talk, but I want to make sure it will work as it's $200 and I don't want to buy it if I don't think he is really going to use it. It's just going to be a matter of finding the right one for him.
Now the iSpeak will work, kinda. It's a $1.99 app where you type something and push a button and it will say the words. The only problem is that he can't type (yet). I need to go in and type a bunch of things and then he can just click on them when he needs to, but I haven't had time to do that yet.
And I am going to sign off with a couple of photos of Kevin going to therapy today with his new iPad in hand! That carrying case rocks and Kev is just so excited! Once again - thanks Operation American Pride!!!!!
Today was a really good day. Kevin went to his first 'real' physical therapy appt and he rocked it!! We were doing PT and then OT back to back so we opted for 1/2 hour sessions to make sure he could handle it and he REALLY rocked it!
Check out this little video of him on the bike:
For all you Atreyu fans out there - they are jammin to it in the background. Kevin is able to bring his music in and listen to it while working out.
So after PT, he went into a room and had an OT evaluation done. Everything is on target for that to start on Wed and I was very excited to see that while they are doing PT/OT - they also do a form of cognitive therapy. They did some cognitive testing while we were doing the OT eval.
I can't stress how excited I was to see that Kevin was able to write two words today from memory - cat and dog!! He has only been able to write Mom and Kevin without any help before and I couldn't believe my eyes when he pulled it out of his memory! The therapist was just as excited saying 'it's all in there - it just needs to be pulled back out!
So before we even left for PT/OT, the speech pathologist from the VA called me today and had an opening to come to the house and work with Kevin. She actually beat us here as his other therapies ran over a bit (he didn't want to leave!) so our time was limited, but she got some of the generalities out of the way. She is going to come once a week for now and when our schedule gets a bit lighter (after the surgery), we will probably end up going where we go for the other therapies. This way he can have 3 days a week instead of 1. We just don't have time now though with the skin expander and dentist appointments.
And then tonight Johnny also came. He and Kevin did end up going down the road, but only to McDonalds. It was ok as it was the first time and I am thinking that they will probably go out and about all the time now that the first time has occurred.
So they weren't gone long and then ended up just coming home to eat and then they went into Kevin's room to watch a movie. It wasn't too long later that I heard Kevin snoring and I so wasn't surprised! Kevin had had a really busy day so far and had to be exhausted.
So Kevin is now talking on the phone to Tracy and has been for a good hour or so. It enabled me to get all of this post done uninterrupted! YAY! He is doing so much better with his talking, isn't he? He did pretty well with the word lemonade the other night - and so far he is remembering it more often that not!
We had a pretty nice day today. Breezy and Chris came over for dinner - it's been quite a while since they did that as they were packing and moving and couldn't get away.
We are having a bit of a jealousy issue though. A couple of weeks ago Kevin got very angry at me because the background on my computer was of just Breezy. He was upset because he wasn't in the photo.
Then today he was angry because I was mainly talking to her at the dinner table and he got up and went to his room - slamming the door of course.
I'm not really sure where this is all coming from lately. I suppose it could be because I rarely leave him and Breezy hasn't been coming over as much. I really need to get out more and I am hoping to work on it some tomorrow. Johnny will be here and I am going to send him and Kevin out. Kevin has agreed to go (amazing!!) and now I just need to think of a place to send them. It can't be far as Johnny hasn't went anywhere with Kevin yet so hopefully I will come up with something asap.
It could also be that he can't really 'join' in on the conversation too. I don't know...I just hope this all goes away soon. Not liking the angry fits...
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'.
Email us at firstname.lastname@example.org, but please understand that there is very little time for responses. We wish we could email everyone a reply, but it's just not going to happen.
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