Day 272 - Feb 27, 2009

Kevin is feeling much better today. There is still no word on what is infected, but the docs told me that his white count dropped to 15 so they are really unsure what's going on. We are still waiting on test results so maybe we will have more info soon.

Brianna was with Kevin at the hospital earlier while I ran errands and our liaison came in and informed him that he was being promoted to Specialist. She said that they were hoping to have a ceremony. That will be exciting for him - especially as he didn't even know about the last promotion.

Other than that, nothing new to report. Jodi, you asked about the cookbooks and I am not really sure. I know that Kim S. posted a comment that they can be ordered online at the benefit blog. I don't know too much about these, but I am told that there were over 350 recipes (I hope I remembered this correct - Kim, do you know?) submitted honoring many military personnel. I can't wait to see one! This was such a great idea to have a cookbook honoring families and friends that have served!

Jessica, you mentioned art or music therapy and I have never heard of either of those being done here. I will try to remember to mention them and see if they are available.

Miss Em - great idea to go buy Nerf baseball bats. I just bet we could all have a blast with those, lol!

Holee, the therapists haven't wanted to get Kevin a powerchair because they were afraid it would make him not be willing to push himself to get better. Before his cranioplasty, I agreed. Now I'm not sure, but they still don't want to get us one because they feel eventually he will be walking. I did beg for one for a while and I had been told months ago that they did decide to order us one (because I made the therapist push him up the hill from the house to the hospital and she couldn't believe how hard it was to push him), but it never showed up and no one seems to remember anything about this. That therapist has since left the VA hospital so I can't see anything happening. It would sure be nice though. He weighs more than I do and he's six feet tall. It's hard pushing dead weight up a hill!

And obviously we won't be going to the RenFest this weekend. It is going on for a few more weekends so maybe in the future. I have to find out if it's even possible to push his chair in the grass anyway. I sure hope so...

Day 271 - Feb 26, 2009

Kevin is sick again. When I went in this morning he had been vomiting since 4:30 am and was very lethargic and had horrible spasms - the same symptoms of the shunt malfunctioning. We ran a multitude of tests today and started him on an IV as he somehow got dehydrated overnight. We do believe he has an infection as his white count is 25 and it should only be between 4 and 10, but we still don't know what kind of infection he has. Please keep everything crossed that it's not either the shunt or the flap - that would be quite devastating as either one would need removed.

I think I am just going to end here as it was truly an exhausting day. I will catch up with everyone tomorrow...

Day 270 - Feb 25, 2009

Today my sister Dawn and her husband Harry came to visit for a week. They just got here tonight and haven't even been able to see Kevin yet, but tomorrow will be soon enough. It will be a nice week and I am looking forward to doing something 'fun' with them.

As for something fun - there is a Renaissance Festival this weekend and I am hoping to take Kev and Breezy there. I have to find out the hours and see if there is anything going on in the evening as I won't take Kevin into the afternoon sun. I will risk it in the evening (after all we do have the Solumbra clothing), but the clothes don't cover his face and it's completely burned too. I hope he is interested in going. We went to the one near Pittsburgh a few years ago and had a great time. Kevin was particularly interested in the daggers and swords and things, lol. Then there's Breezy and I getting our faces painted and buying fairy wings and things like that. The differences between men and women, eh?

And I did find out that a very well known bank has agreed to underwrite the mortgage so it's all just a matter of time now. PHEW! I feel this HUGE weight being lifted off my shoulders just knowing we have somewhere to go. And I do appreciate all of the kind words and emails about me feeling like a failure because we are homeless. I realistically know that it's just nothing I can change, but the feelings are still there. It's all moot now though, right? Once again - A BIG PHEW!

Day 269 - Feb 24. 2009

It was a very boring day today. Kevin is doing fine and we are somewhat settling into a routine of sorts. It's a busy one, don't get me wrong - but it's still a routine.

He did have to get up early today and have his right leg scanned to make a splint for his foot and lower leg. It kinda drags some when he is walking and a lot of times his foot will roll onto its side so we think it will be easier for him if he has a splint to keep it all straight for a while. I can't say if it will be permanent or not, it's too soon to tell, but hopefully it won't be.

We are also discussing Botox injections in his right arm. It's just not really doing anything. He barely has any control and there is no movement whatsoever in his hand. We are pretty close to the nine month mark so I am hazarding a guess that he's never going to have full use of that hand/arm. I sure hope I'm wrong though.

We are also increasing his anti-depressant. We really have just hit a very rough spot and it's hard to work through it when he can't tell us what he's feeling. I just have to guess at what could be rolling through his mind and let's face it - men and women think differently. Who knows - I could be completely off base and even introducing new depressing thoughts with each guess. I just don't know. We currently also have a female therapist and I am working on trying to change to a male. I just personally feel that a male will be able to better know what Kevin is feeling. Wish me luck on getting it changed - so far I am hitting a brick wall...

And to end this post, here is a pic of the kids at the house we are trying to buy. They were messing around, of course, lol.

Day 268 - Feb 23, 2009

Not too much happened today. We just did our normal speech, pt and ot and that's about it.

I have noticed that Kevin's head is having fluid build-up nearly every night, but it goes away once he gets in his chair. It does have to do with how flat he lays while sleeping, so when he wakes up feeling nauseous, we just have to have him sit up for a while in bed and it will go away. I guess he is going to have to take a hospital bed home with him when we do go so that he can put his head up and down on his own. I believe the VA will supply that and that sure is a huge relief!

Since I don't really have too much to say, I am just going to reply to some of the comments.

To the anonymous poster saying that Kevin needs the "drive-on rag" - sometimes I am still busy with it, lol. But rest assured - it does get passed on when I can.

Someone else asked about my mom and she is doing well. She says her broken arm doesn't really hurt much, but the leg does. I think we'll all feel better once they get down here in the nice, sunny weather, lol. No snow or ice here, that's for sure.

And my heart isn't hurting as much, but there is still a twinge there. I know that some of you think it's crazy - but I really struggle with being homeless. The not having anywhere to take my children to has been a very heavy burden for me. I have always had a home for them and it feels a bit like failure to not be able to just take care of this. I feel like I am not doing my job in providing for them - and believe me - I already know that none of this is my fault and that these are extenuating circumstances, but the thoughts are still there. Anyway, once those papers are signed, I will feel much better! I sure hope it's soon...

Day 267 - Feb 22, 2009

Man, we sure were spoiled this weekend. I'm not sure we're going to be able to handle staying in my tiny, little room every weekend from here on out, lol. I can't even begin to tell you how exciting it was for all of us. Even Kevin really appreciated being able to move around the rooms in his chair. At the Fisher House, he can only wheel into the door about 5 feet and then has to stop and either sit there or get into my bed. He just enjoyed going back and forth between the rooms whenever he wanted to. He also loved laying on the couch and watching tv. He even fell asleep there the first night and I just left him stay there.

To be honest, we didn't do anything much all weekend. The expense of the hotel was enough of a splurge so we just lounged around. We did go to the Brandon mall, which will be the mall we will frequent once we move into our home (assuming, lol) and we ate in the food court. I was so excited to see a Cheesecake Factory there so now I will only need to run about 10 minutes instead of 25. Maybe Breezy can get a job there so that we get a discount, hehe...

On that note, Brianna has decided to stay here in Florida with us and not move back to PA. She realizes that Kevin just isn't going to understand if she leaves so she is going to get a job and start over once we get into the house. She will be going home to PA for a month or so to see Alan, but that's about it. I am secretly glad because I would've really missed her.

And my parents are going to be moving here by this summer. I am already looking at apartments for them to move into and plan to visit three of them this week. It is just so unbelievably expensive here...

And now I am going to head home for the night. Kevin is asleep and I want to hit the hay early tonight too.

Oh - and Janna - thank you so much. We just received your letter today. I wanted to read that book (The Shack), but never went out looking for it yet. The kids went to the mall and shopped for jeans this afternoon so I was able to start it. Thanks!

Day 266 - Feb 21, 2009

I am pretty much going to skip writing tonight. We are still enjoying our time at the hotel. I can't begin to tell you how awesome it is to have so much space!

Day 265 - Feb 20, 2009

This is going to be a very quick post tonight because...

At this moment the kids and I feel more normal than we have in 9 months. I splurged this weekend and we checked into the Embassy Suites because Kevin needs to understand that we will be living in more than one room. The ES has both a living room/ kitchenette/ dining room and a bedroom. The suite is about 6 times the size of my room at the Fisher House and we have a couch and a chair and a table and 2 beds and 2 tvs and...well...we almost have a home - for a whole weekend!! It is just so exciting to be able to putz around 2 rooms instead of us all having to sit on the bed together or someone sitting on the floor because there just isn't room. This really is just so nice...

Day 264 = Feb 19, 2009

So anyway, I truly believe we got a mortgage! We had a meeting at the house that we chose with the some of the VA reps and loan guarantors, as well as the company that will do the remaining adaptations and a few others. We were told that the builder's mortgage company will take it on and we will hopefully be able to move in within the next 2 months. I can't say whether Kevin will be able to at that point, but he should be able to at least stay on the weekends.

Phew! What a load off these shoulders!!

As a side note - I already purchased furniture for the house so we are mostly good to go on it. The wonderful realtors that we have been working with came across a deal where a couple of guys were selling all of the furniture they had in a model home. It is enough to fill a 4 bedroom, 3 bath home with a family room, living room, dinette and formal dining room. This includes curtains, rugs, decorations, everything! As far as I can see, the only thing we will need to buy are some extra window treatments, a washer and dryer and a bedroom suite for me (but that can wait until I have money coming in - I already have my mattress so we are good to go on that). I am sure other little things will pop up, but for now - we are pretty much set. I just hope this really is going to work. I believe it will, but there's always that niggling, little voice saying 'you haven't signed the papers yet...'.

So moving on, Kevin is doing better today. He did have some fluid build-up this morning, but it went away once we got him into the chair. I sure hope it stays gone. I worry about his attitude if we have to go in for another surgery anytime soon. He is on the verge of giving up and it scares me. I am thinking we may have to increase his anti-depressant, but I am waiting to see how he is doing next week before making a final decision on that.

And now I am going to answer a few of the questions I have in my inbox:

First, I appreciate everyone's concerns about the home. I also appreciate everyone suggesting different organizations that will build us one. The truth of the matter is, I am not willing to give up a sure thing for a possibility. I have had more than one organization say they would help in the past and then disappear. Now that we have chosen a home and even found a mortgage, I am unwilling to trust an organization to follow through. It would mean us canceling the mortgage we just got and waiting for an approval and then waiting for the home to actually be built IF we get the approval. My decision may sound crazy to some of you, but in today's economy (and with us so close to discharge) - I will take the sure thing.

It really would have been different if these organizations would have come forth months ago when I was asking for help. Frankly - it really is just too late. I had already talked to ALL of the organizations that everyone has suggested and no one was interested in helping then.

Ida - thanks for the info on MRSA. At this time they are not treating Kevin because it is colonized in his nose. I know what to look for and am keeping a close watch in the event the germs spread.

And for everyone that stressed how well Kev looks - you are all preaching to the choir, lol. I honestly don't feel Kevin can handle seeing what he looked like in the past so we can't show him how far he has come. We have also had many months to adjust to what he looks like now. He is just now seeing it. He is just now going through the loss. In time, he will accept it and by then, he will be ready for plastic surgery to fix what we can so he will go through different emotions even at that point. That will just be another hair-raising turn on the ride.

Dyan, I really laughed at the Kevinator story. I will have to tell Kevin that one tomorrow. I'm sure he will get a chuckle. For those of you that don't read the comments, the story can be accessed on day 262.

Alison - you asked about open wounds and Kevin doesn't really have any (other than the staples in his head right now). His burns are all healed so pool therapy will be good for him. Unfortunately, the pool here is being repaired so it will have to wait until we put one in at the house. It's on the list of projects.

Ok, enough for tonight. I do just want to say a big "THANK YOU" once again to everyone. It feels good to know there are people that 'have our backs' in this horrendous time and frankly - your words keep me going at the worst times.

Oh - and the internet still isn't working at the house. If you don't hear from us over the weekend - don't panic. Kevin will be staying with me so I won't be at the hospital to create a post like I am right now.

Day 263 - Feb 18, 2009

I wasn't able to post last night because the internet was down. I don't have time to post now as the day has already begun and we are too busy for me to sit down for long so I will catch everyone up tonight.

But as a one lined hooray - we got a mortgage (at least I believe so)!!!!!!

Will tell all tonight!

Day 262 - Feb 17, 2009

Kevin felt much better today - he was almost his normal self. He did pretty well in his therapies considering he just had 2 surgeries and then we brought him down to the house for dinner and part of a movie.

I will say that he is really letting his looks bother him though. Today I was doing dishes and I peeked in the dining room (where he was sitting at the table by himself) and he looked so dejected. I walked in and asked what was wrong and he was just pointing to the glass topped table. I didn't see what he was looking at until I realized that he could see his reflection in the glass and was really upset at what he was seeing.

We also Skyped with my nephew and Kevin was staring at the video of himself in the corner of the screen nearly the whole time. He is just so sad and I don't know what more to say to him to console him.

As for the meeting - so far we have two options and they are to forget the past and allow the same resident to work on Kevin or transfer to a different hospital. We have more options, but I need to sit with Mary (our wonderful Federal Recovery Coordinator) and discuss them. (I will be calling her tomorrow as I didn't have time tonight.) I am pretty much not going to think about it tonight because all of the options aren't laid out for me and I don't make decisions that way. So I will touch on this again tomorrow night or the next.

And now I am off to bed.

Day 261 - Feb 16, 2009

Kevin has been very tired today. Breezy is feeling better so she spent the day with him while I ran some errands and she told me he basically slept all day. We did get him up for dinner and then he went right back to bed and has been sleeping all evening. I am sure it's still him just recuperating from his surgeries for the week, but I do worry a bit that it could be something more.

As for the MRSA, I know he was given antibiotics after his surgery, but I am unsure about a full treatment. I will be looking into this tomorrow.

There was also a HUGE blowup this weekend about the same resident showing up to perform a tap on Kevin's head on Friday. It escalated quite a bit and I believe we are having a meeting tomorrow sometime to decide what we need to do - either leave this hospital or have a dedicated neurosurgeon that we feel comfortable with. Once again - and I have to stress it - that man is not allowed to come anywhere near my son. And I find it really sad that this battle has had to continue to this extent.

And to the anonymous poster that wants to call their congressman about any of our issues - go for it. I feel that the doctor dilemma will be taken care of - but if it will help us get a mortgage I would greatly appreciate it. As I hope everyone realizes - we don't expect a free home, we are more than willing to pay for it - we just can't even seem to be able to do that. Crazy, huh?

Now I will say this - we do have a broker that is still working on finding us funding. I can only hope that it works out. And I realize that an apartment is a possibility in desperate measures, but believe me - it won't be tailored to Kevin's needs. It would take a lot of money to make it work for him and I am just not willing to spend money on something that Kevin doesn't own.

In the interim, I am just going to stop busting my butt on this. I am nearly killing myself over it and I just can't continue at this rate. I am not saying I will not still work at getting this house, but I can't continue to put the hours in that I have been - on top of taking care of Kevin (and Breezy too). My heart has been hurting and if I don't stop I won't be around much longer.

So, maybe things will just work out. Maybe Kevin's shunt will work from this day forward for the rest of his life and maybe we will have a home to go home to in a month or so and maybe some sort of home based job that has VERY flexible hours will land in my lap and maybe all of my family and friends will move to Florida.

Wouldn't life be great if all of those maybes would occur?

Day 260 - Feb 15, 2009

Kevin has finally been released to go back to his room. YAY!! It has been very rough being in ICU as it is so loud and it's impossible to sleep there. But - we are back "home" now so things should get better.

It has been rough too in that the shunt quit working three times this week. Kevin has hit a very depressed state because he is realizing exactly how much this whole thing just sucks. Both last night and tonight he has just lay in bed and sobbed "Why? Why? Why?". We had a long talk about things tonight and he basically told me that he hates it in the hospital (I can so understand that one!). I told him I am working on it, but am struggling with the home situation. He also knows that even when we do get a home he can't just check out and it will take time to be able to go home and stay home. I know it will start with just the weekends and I can only hope that he understands that when the time comes.

And it turns out that Kevin tested positive for MRSA this week. It's colonized in his nose, but now we have to wear gowns and things when we are with him. We made it all these months without it - bummer. I guess it was inevitable though as nearly everyone on the ward has it and Kev has started socializing with the other patients. Matter of fact, he played Wii bowling last week with one of the other patients and he had a blast. I left while he played because he needs to realize that there will be times when Breeze or I just won't be there. I really wish I could've seen him play though...

Day 259 - Feb 14, 2009

Kevin is still in ICU and we are hoping to go back up to his room tomorrow sometime. He is struggling today because he is so frustrated and mad and sad and disgusted because we really have had a terrible week. I feel his pain and let me tell you - it is so hard keeping a smile on my face and telling him that everything will be ok when I feel exactly as he does.

And now I am once again going to cut this short. I have slept in the chair the last few nights and I need to get some sleep. I trust the sitter that is with Kevin tonight so I felt I could come home for at least a few hours of rest. She will call me if anything goes wrong...

Day 258 - Feb 13, 2009

I'm not going to be able to write tonight because Kevin's shunt still isn't working and he is still in ICU. I need to get back up to the hospital and spend the night again. Breezy is sick and we can't have her near Kevin so I have been on my own with Kev this week.

Gotta run!

Day 257 - Feb 12, 2009

Kevin had another surgery today to revise the shunt once again. I guess it was clogged. I am a little bit worried today because he still hasn't awakened from it and he always bounces back much faster than this, but I'm sure he will be fine tomorrow. I sure hope so anyway.

I have to head back up to the hospital as soon as I can grab a quick bite to eat so I need to cut this one short.

Day 256 - Feb 11, 2009

Here we go again. The shunt quit working. This is the fifth time it has stopped working in 6 months. I kinda thought so yesterday because he slept all day, but his head wasn't getting any fluid on it. It's there today though. Matter of fact, the fluid buildup has nearly doubled in the last 4 hours. He fell asleep at my house and I am just waiting for him to awaken enough that we can go back to the hospital. At this point, he keeps waking up to vomit and the bed is just soaked in sweat. He doesn't have the energy to stand up and get into his chair though so we will just have to wait. I do have permission to keep him here all night if it ends up that he has to - so we'll see. I would personally feel better up at the hospital, but I suppose it's something I am going to have to get used to.

I am still very frustrated on the home situation too, but I really don't have the energy to get into it. I have to be honest - I am the most exhausted I have ever been in my life. I can totally handle the situation with Kevin - it's been 256 days after all, but I can't handle so much of my time needing to do all the rest of the stuff. I hate begging for help to get a mortgage. I shouldn't have to spend countless hours a week on the phone with brokers and bankers and organizations and everyone else I have to talk to. I shouldn't have to worry about FL not registering the van because our insurance is still addressed in PA. (and yes - I am driving an unregistered van - but hey - it is insured anyway ;-) )

I am just honestly so flippin tired. I feel defeated by everything that life is throwing at me and I just want to run away...

Day 255 - Feb 10, 2009

Kevin hasn't been feeling well today. He slept all day long, only waking up for maybe 2 full hours total. Breezy was with him and called me because she could tell something was wrong, so I went up and had the docs come in. They are waiting until tomorrow to draw blood and just see how he's feeling. Hopefully it's just a little bug.

Other than that, nothing much happened. I am spending hours a day on the phone trying to get this house. To be honest, I am just so tired and ready to just give up and live in the van. It honestly shouldn't be this hard to buy a place to live.

Oh well. I don't even have the energy to vent about this so I think I will just hit the hay.

Here's to hoping Kev feels better tomorrow!

Day 254 - Feb 9, 2009

Kevin is still doing well and I am glad to say that most of the spasms have went away. He is still having a few, but that's the norm for him.

He did really well in physical therapy today too, but he is getting tired very quickly. I am assuming that it's because he just had surgery two days ago though.

And it looks like we are going to have to cut his hair. We had come so far in covering some of those scars, but they only shaved half his head for surgery and now everyone is commenting on it. It is making Kevin very self-conscious and he is pulling into himself every time someone says something. I know he is also very upset that he has even more staples in his head as he sees himself even more scarred now. It's hard for me because I honestly don't know what to say to him to make this better. I guess there really isn't anything more I can say - he is just going to have to accept it.

As for Long Time RN asking about the reason the shunt failed - they really didn't tell me. They just said it malfunctioned and they have no idea how often it could happen. I know in the past that they told me that the part of Kevin's brain that was damaged is breaking off in small particles and can clog the shunt sometimes. They didn't mention that this time, but there was a whole lot of screaming going on because they sent the resident that I don't trust to deal with us. I really don't understand how in America you are free to choose your doctors, but our own wounded warriors are not. The very guys and gals that fight for our freedom are not free to choose their doctors. It honestly makes no sense to me.

So anyway, Breezy is going in in the morning to be with Kev and I plan to call my congressman. I didn't want to do it today in front of Kev so tomorrow it is. It just really isn't fair. Why should we have to have someone that we just don't trust?

Day 253 - Feb 8, 2009

Kevin is doing very well since his surgery. We are back up on the fifth floor and everything seems to be ok, with the exception of non-stop muscle spasms. I will have to talk to the docs about that tomorrow morning. This is one of the first signs of shunt malfunction, but it usually goes away immediately after surgery. I am just not sure why it's still happening.

I did get to see the CT Scan results yesterday. It's just amazing the change in his brain. Even though nearly all of the left side was damaged beyond repair, it's still interesting to see how it spread itself out to the new plate in his head. Last month's scan (before surgery) showed the left side being 'pushed in' significantly by the amount of fluid collected against it. I find it interesting that a part of the brain with no function can make such a difference when allowed to be 'free flowing' as opposed to being compressed. I can only guess that it also affects the right side? Not really sure though.

And that is about it for tonight. I am hoping Kevin gets to come down to the house again tomorrow night, but we'll see. He is back to his normal self so it's possible...

Day 252 - Feb 7, 2009

Well folks, no sooner had I pushed the 'publish post' button last night than Kevin got sicker than a dog. I had to almost lift him out of bed myself and rush him back up to the hospital. Remember how I said I hoped I realized when his shunt would quit working? Well, last night was the test. It did quit and it took me a few minutes to figure out what was going on, but I did eventually get it. I already knew by his symptoms before we even left for the hospital and since this is the 4th time in roughly 6 months that it has quit - I think it's safe to say that this will be a large part of our lives forever.

So, Kevin has already had emergency surgery today to actually fix and reposition the shunt. He is doing very well already, but I will still be spending the night up there with him. I just came home now to grab a shower since I have been up since yesterday morning and at the hospital since about 2:30 this morning. I am eating a bowl of soup as I write this and then I need to head back up, so I am going to cut this one very short.

I will say this, as I sat in the surgical waiting room earlier today, I realized that no matter how much better Kevin gets, someone will always have to live with him, someone will always have to keep watch for this shunt thing. I think I knew it, but I was just so hopeful that he could lead a more normal life. And, I will admit, I was hopeful that I could too.

Day 251 - Feb 6, 2009

I am just so happy that Kevin has truly adjusted to not being at the hospital on the weekends. It is so nice to just have him get into bed and go to sleep like it's his own bed. Right now he is just sawing logs like there's no tomorrow, lol.

As for the house situation - I am feeling good about that at the moment. I don't want to say anything yet about it, but hope is in sight. I am just afraid to be too hopeful so I will wait to see what happens. Everyone keep it all crossed for this, otherwise I really don't know where we'll go. (I will keep the DAV in my thoughts too. I didn't realize they could help like that - thanks to whoever you are.)

And I have had a few comments about me complaining about the general. Yes, Holee - I do agree he deserves respect and frankly, as I mentioned yesterday - I do respect the service he gave for his country. But respect goes two ways and it's apparent that there is no respect for his fellow men and women coming from him. Otherwise we would not all have to go without so that he gets whatever he wants when he wants it. And to the anonymous poster that asked if it's official policy that the staff does what he wants - I hear quite often that the orders are handed down from above so I can't say for sure. I do know that tensions have been high since he got here a few months ago and people are afraid for their jobs. It's just such a shame all around - and it's also so aggravating.

I was also asked if there is a pool here - I heard a while ago that there was, but haven't seen it and no one has mentioned pool therapy to us. I will have to try to remember and ask about that on Monday. (the operative word being "try" as I am such an idiot anymore, lol)

Well, there are some logs that need sawed by me so I am heading off to bed!

Day 250 - Feb 5, 2009

I just have to bitch about something for a few minutes. Two things actually. First, the nurses forgot to give Kevin his medicines tonight. He is to get 3 meds at 5pm and I had left because my brother was coming and needed picked up at the train station. So we got back after 6pm and picked Kevin up to go to dinner and I never once thought to ask if he had his meds. It wasn't until we got back at 9pm that the nurse came running in asking if I gave them to him. Why would I have given them to him if we left more than an hour after he should've gotten them? I just assumed that they already did so. And then - to top it off - when they did give them to him, they almost gave him a double dose of the one pill. This is happening constantly because the pill needs cut in half and the nurses just aren't doing it. This is truly just one of the reasons I just can't leave him alone here. I have to be on my guard constantly and I think that's a shame. I honestly can't even leave for a quick trip downtown. Grrr...

The second thing is something that has really been bothering all of us on the 5th floor. I will probably make some people mad venting about this, but it's really just not fair. The problem is that we have a general being treated here. I am not complaining about that as a whole. What I am complaining about is how all of the other 14 patients and their families have to go without because the general wants this or the general wants that. For example - we have a family room where we go to socialize and where we have recreational therapy (patients watch movies, play games together, have parties, etc). We are no longer allowed to use that room for anything if the general is in his room because he is next door and he can hear the noise. So now, all 14 other patients have to try to fit into this tiny room to have our therapies and we don't all fit. Now nobody is going to any of the events anymore. I think it's just so sad that everyone on the floor is penalized because someone high ranking - that demands it all - is in our midst. There are so many other issues concerning him too. If we are in the middle of any therapies or activities and the G wants the therapist - they immediately have to leave us and go tend to him - it doesn't matter if it's our scheduled time or not. If we have our shower at a certain time and he wants to take one - tough on us. I could honestly just go on and on...

It just makes me so mad. I don't think it's fair that one person can wreak so much havoc on everyone around them. And understand - I give him high regard for the service he had given us - but he is no better than my son, or the guy in the next room or the woman in the next. So why are we all paying the price? Why not move him to a different room instead?

Ok, enough venting for the night. (but it still makes me mad)

So (other than my venting) we had a great day today. Kevin worked so hard on his therapies that I was amazed. We are focusing on him being able to stand up without the use of his arms. In other words, we need to strengthen those legs and the butt muscles. We are also working on his balance. So far he has none. If you have him stand still he would fall over without someone there to hold him. (and Jodi - he is just about 6' tall - I am 5'2" and Breezy is under 5')

And did everyone notice that he had jeans on in the videos? Yesterday was the first time that he put on a pair of jeans. I got all teary eyed seeing him look nearly normal for the first time in a year)

He is also doing very well with speech. He is trying to say everything now. Things are getting easier for him to say and I notice more automatic words just coming out. He really does try so hard and truthfully, we have seen amazing improvement on this. We still have a long way to go - but what do we have but time, right?

And as I mentioned - my brother came today. Kevin was utterly so excited to see him. I kept telling him that "Unc" was coming, but Kevin doesn't remember who people are by names. He only remembers by seeing photos or them in person. Kev's eyes just lit right up when he saw him getting into the m-van. And after we all (Chrissy too) went to dinner and Kev and I went back to the hospital, I asked him if he was excited that Matt was here and he nodded his head so hard I thought his neck was gonna snap, lol. It sure was nice to see them play off each other just like they used to too.

And that about sums up my post tonight. I do want to say to all of my friends that I haven't talked to in a long time - be patient. I am on the phone constantly with banks and organizations just working on this house thing. There is no time in the day for me to talk just for fun. Hopefully that will change soon as it's exhausting.

And to MaryAnn - you asked if our addresses were right for donations and you can do that (they are) or you can send directly to the benefit account we have set up for Kevin. I think I was supposed to put that address here on the blog, but I forgot. I'm sorry. I will do that as soon as I finish this post (look down the right side somewhere). Also, the Paypal address is correct, but they charge a fee for every donation so it really is best to go another route.

Again, I do want to thank everyone for all of the help - especially financial. We honestly could not be here with Kev without all of the donations. For this - I will never forget what everyone has done for us. NEVER.

Thanks again!

Day 249 - Feb 4, 2009

We had a really good day today. I stuffed a small turkey for dinner and we just vegged again. I spent a lot of time on the phone trying to find some help with the house situation throughout the day and Kevin and I played a game of Skipbo too. We honestly are trying to take it easier while at the house because we all need to start getting accustomed to a normal home environment.

As for Kevin, I don't think I told you guys, but he is able to do addition and subtraction with ease. Even larger numbers. It's just amazing to watch him do it. I like it that he can write the numbers too - granted it's not the neatest - but it never was, lol. And besides that - he now has to write with his left hand - that has to be hard too.

And now (because I know y'all are waiting for it, hehe) here are some videos of Kevin. I had to retake them today because yesterday's file just wouldn't upload. Too big, I think. So now it's in 3 different parts. Expect to see more quite often.

The first is of Kevin standing up:



This one is him walking (Thank you Betzida, for taking the video of all 3 of us):



And last we have Kev whipping around in his chair like there's no tomorrow. This is the normal Kevin - the one we expect to see riding his chair down a hill with no brakes like he used to do on his skateboard, lol:



Amazing, huh?

And I just LOVE this smaller chair. It is so much easier to get around in. And he fits under the tables to eat his meals with us and he can also get around himself (obviously) so that I am not killing myself pushing him all the time.

And I am going to finish tonight with a request for everyone to keep my Mom in your thoughts. Some of you know that they live back in PA and the weather has been kinda icy up there. Well, the other day she fell and broke her arm and then she turned around today and fell and broke her leg. As far as I know - she has never had a broken bone and now she has two at one time - and from different accidents to boot! How much you wanna bet that they end up moving down here soon?

Day 248 - Feb 3, 2009

I am just too tired to write tonight - sorry everyone. I just really need to get some sleep.

BUT...

I do have a surprise for all of you! I purchased a cheap video camera at Wally World and shot some footage tonight. I am uploading to YouTube right now, but it's taking forever so I will add it to tomorrow night's post.

Day 247 - Feb 2, 2009

Well, it turns out that Kevin did see some of the game. He woke up shortly after I left and watched it with the nurse. I am told he was just swinging that new SB Terrible Towel that was sent to him, lol! I wish I'd have been there.

He had a pretty good day today too. Nothing really new happened, but it was a good day. We did grab movies tonight and pretty much just lounged around.

And I didn't hear his cough or anything today so it must have just been a yucky day for him yesterday. Phew!

I am just going to hit a few more of the comments/questions.

Someone asked if he was gaining weight and he actually has lost a few pounds lately. Just a few - nothing to be worried about - but he really hasn't been eating as much lately.

Gina - thank you and your sister for getting copies of the paper for us. I was told today that the VA will be sending pics of Kevin from the media event to the Pittsburgh media channels. Can't say they'll use them, but you never know.

Linda from FC - thanks for letting us know about Stephen K. I did hear from him last week and knew he got hit hard - but I didn't realize how hard. I hope he is doing ok?

To everyone concerned about the VA loans - I did call them directly again and they assured me that they do not actually give out loans - they only insure that the loans will get paid if Kev would default. Now to me, that's a no-brainer to give the loan to someone like Kev - but the banks just aren't doing that. We did agree on a price with the builder of the home we chose yesterday and now it's up to the bank to agree or disagree to take us on. We have tried numerous banks and there is only one that is giving us a 'maybe' so we shall see. I wish I could say I felt good about this, but unfortunately - I don't. Things like this don't usually work out for us so it will be a miracle if it does.

Jenna - we did try USAA and it's a no-go. We haven't tried the Pentagon FCU, but I will call them if our broker can't get it to go through.

So we have to laugh when we say this - but we do own the mini-van, lol. We can always live in it...

Day 246 - Feb 1, 2009

Way to go, Steelers, huh? I admit that I am not a real football fan, but even I was grinning during that last homerun (haha - gotcha!), touchdown during the last seconds of the game.

Unfortunately, Kevin missed the whole game. We went looking at houses today and by the time we went back to his hospital room - he was exhausted. To be honest, he wasn't feeling real well and he has a slight cough by this evening. I will be keeping an eye on him over the next day or so. But anyway, he turned the tv off right about the time the game started.

We did manage to find a house today. Now we need to check on the financing end. I appreciate all of the advice everyone has given. If things don't work out, I will check on the other options. I also can totally relate to the anger some of you are feeling. It's very frustrating to be told you are going to get help and that you won't end up homeless and then you see that everything that was said was all lies. And it's sad too. People that promised to help us are hiding from us now (won't return phone calls or emails, etc)

Anyway, maybe it will all work out. It would sure be nice to not have to worry about all of this too.

And now I am going to answer some of the comments/questions. First, Gina - thanks for sending that link of Kevin being in the Arizona papers. Here it is for those that don't read the comments to my posts:

The Arizona Republic

And that would be great if you could send at least one copy! We would've never known about this if it weren't for you!

I also want to change my email address for those that want to write to me. It is now going to be lesliekamm@live.com My gmail account is getting a lot of spam lately and I don't have time to weed it all out. Anyone may write to me there, but please don't expect a response. Time is so limited for us.

Mel - thanks so much for getting the clip of the Mike and Mike show! (and thanks for the offer you made recently, but we just can't do that. We appreciate it though!)

Kathye - thank you also for the link of a different clothing company!

Tina D - we were told that the VA doesn't actually give the loan - they just guarantee it. A bank needs to give one first and that's where we are having trouble. I will be double checking this tomorrow though.

Anonymous - you asked if the asymmetry of Kevin's head is resolving and no, it's not. It's just the camera angles and also the camera being more forgiving sometimes.

OK, there are more, but I am days behind and right now - I am beat. I will answer some more tomorrow night.

Day 245 - Jan 31, 2009

This is going to be a quick post tonight as I am just exhausted. I searched all day for homes with my wonderful realtors and have a couple of homes in mind. We are going to take Kevin to see two or three tomorrow and get his two cents since it is going to be his home, lol.

Other than that, we did have some visitors tonight. My friend Sherri L from work came with her husband and daughter. It was so nice seeing her! We are going to try to get together tomorrow night for dinner maybe. Depends on what time we get home from house searching. There is some kind of football game on tomorrow night that everyone seems to be interested in, haha.

And now I am going to end for tonight. I can't report much about Kev because I didn't see him all day. He is now soundly sleeping and I am still searching for homes. We need to contract tomorrow for Monday morning's bid offering.

Day 244 - Jan 30, 2009

I am watching my son sleep in my bed tonight, trying to come to terms with who he is as opposed to who he was. I don't do this often - look back - but it's there tonight. Sometimes I think it's sad because I don't always remember who he was. I can't always recall him being able to walk. Or talk fluidly. And I don't always remember what he looked like without all the burns and droopy eyes and head scars. I know that every mother remembers her babies growing up, but it's hard for me. Do you think it's a self-preservation kind of thing? I suppose it really is a good thing to not focus on the good times from the past because it would make these bad times all the worse. But do I really want to do that? Do I HAVE to do that to continue on this journey?

It's just laying so heavy in my heart tonight. He looks so different now. So incredibly scarred. And as he is becoming more and more cognizant, he gets so frustrated when he wants to say something and can't. And he tries to get out of his chair without someone standing next to him now and he just can't do that yet either.

And I know I just need to be patient. I am quite sure he will walk again, probably with a serious limp or even having to drag that leg, but he will still be able to walk.

And he does say more and more words now, it's just such a slow process to teach him new ones.

I don't know.

I wonder if I am just sad tonight because there is absolutely no way to get the house that Kevin wants? I have tried so hard, but without help - it's just not going to happen. It kinda makes me feel like a failure as a parent that I can't get something that my son wants so badly. It was so hard having to sit down with him tonight and explain to him that it's just not going to happen. He was so disappointed. He accepted it, just like we have always accepted all of the rough spots in our lives, but the disappointment was still there in his eyes.

And to make matters worse - if I don't find another one this weekend, we may not get one at all. As we all know, the economy is affecting the mortgage industry very hard and most banks are really holding back on mortgages. My broker was able to find one that will do so (with considerable penalties because of his lack of credit), but she doesn't think the offer will be there for very long. She is seeing too many emails with banks pulling away and told me to hurry. I have been looking online for the last 6 hours for the most part and they are all starting to look the same to me. And tomorrow I will be busting my butt with our realtors going from house to house, just trying to find one. Please keep your fingers crossed that this happens.

Ok - so now that I have pulled everyone down (so sorry), I will mention some good things.

First, Kevin and Breezy were talked about on KDKA this morning because they were on the Mike and Mike show.

Kev was also 'discussed' in an article in the Chicago Tribune. Click here to read it.

We also received Kev's Solumbra clothing today. Here is a pic of him wearing one of his new outfits:



Notice the new wheelchair? We are trying to get him accustomed to a normal small one instead of that monstrous one used for guys that pretty much can't move at all. We have to do this in small doses though because there is no head support and he is used to having it. But let me tell you - he can whiz around the hallways with that little one. He is fast!

And last, but not least, here is a pic of Kevin with someone from his (our) past. One of Kevin's friends' mom and sister from his growing up years came to visit today. I could tell Kevin had to reach into his memory for it to click on who it was, but it only took seconds - maybe 10 - and he did it. It was such a wonderful visit as we miss all of our friends and family from PA. I sure with the Super Bowl was more often - then maybe we would get more company, lol. Anyway, here is Sharon and Haleigh with Kev this afternoon.



It was just so nice to visit. But, once again, I did get a bit teary as it made me realize how much I really miss home.

Oh well...it doesn't matter... Just wipe the sweat and drive on, right?

Day 243 - Jan 29, 2009

Kevin did phenomenal today. All day. He first went to the Mike and Mike show and had a great time. I am told that they did show Kev on tv and I know that they talked about Kevin saying he was the best Steelers fan out there, which is kinda cool! After the taping, the kids went to hobnob and they met all kinds of football players. Kevin was given a jersey and Mean Joe Green signed it right there for him. He was given another jersey from Holmes and he got more hats and a bunch of new signatures on his hats - including Jim Kelly's.

After that, the kids came home and Mike Ditka came again, along with Rocky Bleier. It was a big event here at the house and more than one person said that Kevin 'stole the show', lol. He was chanting "Steelers" and swinging his Terrible Towel. He got both Mike's and Rocky's signatures on the towel that Franco signed and he got a signed football too so it looks like we are gonna need a room in our house for SB paraphernalia alone, lol.

All in all, the kids did have a great day, but unfortunately - they didn't see one active Steeler's player. They had to come back here early to see Mike and Rocky so we are thinking the Steelers showed up later in the day at the media event. I know they are so disappointed about that, yet they are happy at who they did see and the experiences they had.

I don't have any pics of the media event because Breezy has her camera at home, but here are a couple from this afternoon. Gotta love the bling on the second one, huh?





Anyway, I don't know if there is a way to watch the Mike and Mike show online or not. Breezy was able to find an audio clip where they mention Kevin, but her email carrier holds emails for a while so I don't have access to it yet. I will post those pics and the link tomorrow night.

And to finish out the day, after all of this I figured Kev would want to go take a little rest, but no! He wanted to go eat. So we went to the Cheesecake Factory for dinner. It was really nice. It's just nice to be able to go and do things with him, kwim? Normal things. I just need him to understand that we need to remain on a McDonald's budget and not all these expensive restaurants, lol.

Ok, off to bed for me...

Day 242 - Jan 28, 2009

We had a very busy day today. We spent the late morning/early afternoon with 4 more football players - including Franco Harris. Here are some pics:









These guys were really great to everyone. They even brought the patients each an autographed Super Bowl hat. Kevin was pretty excited!

And y'all will have to excuse me because I don't know who these players are. I can read on Kevin's hat that one is Lydell Mitchell, but other than that - I have no clue. For those of you that do know - please put it in a comment so that I can keep a record for Kevin.

And tomorrow both of my kids are going to the taping of a Mike and Mike Show from ESPN. I don't know anything about this show either, so if it's live - you will want to tape it from maybe 8:30 on. If it's taped for future airing - it could be on the next day. I honestly don't know, but only 2 active duty soldiers were being taken and Kevin is one of them. He may end up being on tv - who knows. After that, the kids are going to a meet & greet of sorts to hobnob with some of the NFL stars. Unfortunately - I can't go (although the only reason I would want to is to take pics, lol). Kev was only able to take one guest and I opted to let Breezy go as she is the fanatic in the family.

Once that is over, Mike Ditka will be back and he is coming down to be with Kev and some of the other guys at the Fisher House. I had to talk to Public Affairs today because there are going to be some tv crews here with him and they want to possibly have some shots of Kevin (maybe because he is from the Burgh?).

I just hope that Kev can handle all of this in one day. This would all exhaust a healthy person so I can't imagine how Kevin is going to handle it all. I guess we'll know tomorrow, huh?

Day 241 - Jan 27, 2009

There really isn't all that much to say tonight, but I am going to give y'all a bunch of pictures.

The first one is from yesterday when the kids met the football players I mentioned. Forgive me if the names are wrong, but the players are Ike Hilliard (TB Buccaneers), Terrell Davis (Denver Broncos), Laurent Robinson (Atlanta Falcons) and Darrelle Revis (NY Jets).



The next two are of Kevin walking around the ward today. I am told he did it much faster today and he didn't even need a break this time (although he was WIPED OUT after completing the trip)





And this one is of of us eating our dinner outside tonight. It was a balmy 70+ degrees so we dined on the patio.



This next one if of my kids making faces at me:



And last - this one if of me at the beach yesterday with my sis, Kim. We weren't able to get one pic of us together. Bummer.



And that about sums it up for today. I am going to answer a few questions though...

Long Time RN - I did order a few items from Solumbra today and I did talk to them about designing some for the 'younger' set. They promised to take it to the manufacturer. Who knows. I am just glad Kevin is able to understand now that he will have to wear these clothes if he wants to go outside. I also showed the website to our doctors today and asked if the military or VA can supply them as they are necessary for at least the next 5 years. That would be awesome!

To anonymous - the CSF issue is resolved at this point. He will need plastic surgery - more than one too. The house is still up in the air. We agreed on a price, but are having trouble getting a mortgage for a 20 year old with no credit. I can't help because I don't have a 'real' job. Pretty much stuck between a rock and a hard place. I admit that I am getting so disgusted and discouraged about it too.

I have also contacted many organizations for help and a few have said they would - and then never called me again. I believe at least one even posted here on the blog, but I guess the economy is just too bad right now.

We have also gotten a few personal donations and believe me - we appreciate it. All of the money is laying in the bank waiting for this to go through. Hopefully it will all work out. And soon. We are running out of time.

To anonymous about the 173rd reunion - it's just too early to tell as of yet. I would like to go, but we will see.

Brenda - you mentioned putting a monitor in Kevin's room to hear him if he wakes. I had to chuckle at that one. We live in a tiny little room - kinda like a hotel room. This means that he gets my bed and I get a rollaway next to it to make sure he doesn't fall out. I have to have everything ready so that I don't have to leave the room once we are alone.

Emily - neither Wed or Thurs will work for us. The kids are doing some football things and won't really be around. Can't tell you guys anymore than that yet though, lol. I will try to contact you tomorrow to see if Friday is ok for you.

And now I am going to watch tv on the computer, lol. I would do anything for a PVR so I didn't have to watch everything online...

Day 240 - Jan 26, 2009

My son took 96 steps around the ward today and I missed it! I am so dang proud of him, but I so wish I had been there! He really is just doing an amazing job of walking and I noticed his balance is becoming better and better too.

He also had some of his staples removed today. The ones that were due to his skull being replaced were taken out, but the ones around his shunt were not. I am not sure what that's about.

And he and Breezy got to meet a few football players today too. They weren't either of the teammates from the Super Bowl, but they are here to watch it. I will have to upload a picture of that tomorrow night though because Breezy took them with her camera and she went home already.

My sister and I actually took off today and went to the beach. We had a great day just lounging around and we also went to John's Pass and walked around the boardwalk shops.

I did learn of a clothing company today that blocks 97% of all UVA and UVB rays too. It's called Solumbra and a woman that I talked to at the beach had it on because she has skin cancer. She said it keeps her cool and keeps all the sun off of her - and she can even swim in it! I found the company online and dang - it is EXPENSIVE - but it's worth it to be able to take him out without him having heat stroke from all the layers they say we need. Now I can only hope that he will wear it - he's so dang particular about how he dresses...

Day 239 - Jan 25, 2009

We had another decent day - not as good as most, but that's because Kevin just wanted to go 'home' - home being the hospital. I was able to keep him down here until after dinner, but he gave the loudest sigh of relief when he hit his hospital bed. I actually felt really bad for keeping him away for so long, but I know he needs to realize that the hospital isn't his home and that we will be leaving that environment within a few months. I was told this evening that this is actually quite normal for someone going through this to feel most safe at the hospital and that he will need to stay away often to comprehend that it isn't home.

I guess it doesn't help that this place (The Fisher House) is not a great place to have to stay either. It's not that it's not beautiful - it certainly is, but they should have put some cash into insulating the walls. You can hear EVERYTHING that goes on in this whole building from your room. Matter of fact, the two women that just arrived a couple days ago that are next door - they fight constantly! It's become a bit of a joke here, but I can't stand to hear it all night long. Kevin was so mad too as they occasionally even woke him up over the weekend. You should hear them right now screaming at each other about one of them snoring. Oh well, it's definitely better than the young couple that was here last week. You can only imagine what I was listening to then, lol!

We did get up though and go to Cracker Barrel for breakfast today and he really enjoyed that. But to be honest, we didn't really do anything else at all. We all did sleep in and it still takes quite some time to get Kevin ready to face the day so it was actually early afternoon by the time we went for breakfast, lol.

So I guess we'll see what next weekend goes like, huh...

Day 238 - Jan 24, 2009

I am pleased to say that Kevin slept all night last night - 11 hours to be exact. I can only imagine how wonderful it was for him to have uninterrupted sleep for the first time in nearly 8 months. I will admit that he wanted to go back to the hospital the first thing this morning, but I understand because to him - that's home. However, I stood firm and told him he had to stay and he is safely sleeping once again in my bed.

Hopefully - HOPEFULLY - I can get some sleep tonight though. I just couldn't last night. Fear, I guess. Stupidly, I kept checking to see if he was breathing??!! Like he's some kind of newborn or something...

But we had a good (and busy) day. First, we went to Citrus Park Mall and ate at the food court. We then came home and took a little half hour nap and then we went to the movies again, followed by a trip to Wal-mart and then we picked up dinner and came home to eat.

The thing that was most awesome was going to WM. Kevin bought himself a watch, some sunglasses, some toiletries and a bunch of junk food, lol. Matter of fact, here is a pic my sister took with her cellphone:



I was so excited too, because he never once got tired and turned into himself like he used to. He is just doing so incredibly awesome!

I am going to hit a few questions now and then try to get some sleep. Sharon - Breezy would love to tailgate with you! Please find Moe and get her phone number. I already asked Moe to try to find you because I am sure you are heading down soon. (Thanks, Moe! I love you!!)

And to Debbie and everyone else that mentioned the game - I don't see us being able to go. I know that there are no tickets available for anyone at the hospital and they are so not in our budget. Breezy is even willing to go by herself and I honestly did look them up to purchase her one, but I just can't justify it. We don't have jobs and money is just too tight - not to mention how expensive the tickets are. I do think Breeze will just end up sitting outside the stadium and partying with all the other Steelers fans that couldn't afford it, lol. And who knows...she may even know a bunch of them!

And I have to say - I thought about how typical the male and his remote pic was, but I was not brave enough to say it, lol!

And I am going to end with a request if you don't mind. Kevin was part of a youth group when he was younger and the youth minister was very good to Kevin when there was no male influence in his life. It turns out that the youth minister has a year old baby that has cancer and is having surgery (or may have had it) this week. Could everybody keep baby Jayna in their thoughts? And my heart goes out to you and yours, Pete.

And now I am going to leave y'all with a video that this youth group made. Kevin is in the dark brown shirt with the long black hair. Thanks Nicole, for letting me know about this:

Elisha and the Bears

Day 237 - Jan 23, 2009

I am signing in a little early tonight as Kevin is ensconced in my bed at the Fisher House for the night and I don't want to make a lot of noise too late. Yay!

It was a little scary at first because he was determined to go back to the hospital and not sleep here, but I told him that there was no nurse for him because she was sent home because he was staying here. It worked, but I was really worried.

And today we had a vision test. Kevin has lost all peripheral vision on his right side in his right eye. I pretty much already knew that because he can have something sitting right next to him and he doesn't see it at all. They did tell me he isn't color blind though so we just need to teach him his colors again, I guess. Other than that, his vision is way better than mine, lol. He could see clearly down to the smallest numbers.

So now I am going to leave you all with some photos. The first is Kevin walking today. The second was just taken moments ago of him sleeping.

Day 236 - Jan 22, 2009

Today we went to the movies and had a blast. To be honest, the movie wasn't that great (Yes Man with Jim Carey), but we still had fun. Kevin was dancing and laughing and it was just so funny. I will admit though that he wanted to leave early because he didn't really like it, but once I explained that we couldn't because three other patients went too, he was okay with it. And I am so proud to say that we only went to the bathroom one time and he 'went' within 2 minutes. No more anxiety (as you said it would be, Kristen!)

He is really doing well overall. So well that the doctors have agreed to allow him to stay overnight with me one night this weekend. I am not sure if it will be tomorrow night or the next night, but I am excited and petrified for it to happen. Lucky for me, my sister, Kim, will be here to help too. She is arriving tomorrow afternoon through Tuesday.

And I am going to just quickly answer one question and then get to bed. To the anonymous poster that asked what kwim means - it stands for 'know what I mean?'. One of those silly net things I guess, lol.

Day 235 - Jan 21, 2009

Nothing much happened today. Kevin was in an ok mood, but we basically stayed at the hospital for the most part. We are trying to get him to take part in activities with the other patients, but he wants nothing to do with it. He gets very upset when he doesn't do things 'right' and I am thinking that's the problem. We were playing "Shout" and because he can't really talk I think he was embarrassed. I'm not really sure though, but I am giving it my best guess. I just wish he would understand that everyone on our ward has problems...

Anyway, I am going to cut this short. Breezy just called and get this...wants to just drive past the stadium where the Super Bowl will be played. She's probably trying to devise a way to get in, lol.

Day 234 - Jan 20, 2009

It's kinda been a rough day. I don't know why, but I am just down today. I suppose I'm just tired, not sure.

But anyway, Kevin had an ok day. We stayed in and I cooked dinner tonight and all was good for us until we were looking at some photos I picked up today. Kevin started crying again when he saw the pic of him with Breezy and I kissing him (the one I uploaded the other day). I couldn't get him to stop and he demanded to go back to the hospital and go to bed. I took that time to follow the advice on the blog here and forced him to go into the shower room and look at himself long and hard in the full length mirror. He just cried harder, but I made him keep his eyes on himself and let it all out. We were in there a good 15 minutes or so and he did eventually slow down enough to at least hear me say that it can mostly be fixed. As mentioned here, I had him point to the areas on his face that he wants changed. He just kept circling the whole thing at first, but then I showed him that it wasn't ALL bad - just the side of his head, his ear, his eyes and his chin area need cosmetic repairs.

I wish I could say that after he cried he was fine, but it really doesn't work that way. It will take a long time for him to not be shocked and appalled when he looks in a mirror. It will also take a while to get past the 'why me?' and the 'this sucks' stage too. He will need to accept the changes in himself and I just need to keep my eye on the line between working toward that acceptance and falling into a depression. It's gonna be a tough one, that's for sure. Especially because I cry with him every time he does. I just can't imagine what it's like to 'wake up' and look nothing like yourself. I know how hard it is for me to see him too right now and I've had 8 months to adjust to the changes - he is just now starting to see them so he has a ways to go.

Anyway, here are some pics from yesterday and today. The first one is Kevin holding Breezy in a headlock earlier today. It was so hysterical, lol:



This one is Kevin standing up down at my room at the house. I still don't remember him being that tall...



And the next two are of him at Red Lobster.





Looking good, huh?

And I am going to finish up with a couple of questions. First to BigD - I sure hope your son is doing well. My nephew had leukemia years ago and he is doing so well now. Keep your chin up! That goes for you too, Petra!!

Miss Em - you asked about Kevin's candy choices, lol. He seems to love all that sour stuff. Ya know - sour gummi worms, that sour tape like stuff (like fruit by the foot) and sour patch kids. He also loves gummi bears. Truth be told - if it's edible, he likes it! LOL!

Jan - you mentioned Kevin's new confidence might be keeping people from staring and I would hazard a guess that that could be part of it. He just doesn't look as sick anymore, kwim? Even his eyes are clearer, if that makes any sense.

Ok - it's off to bed for me...

Day 233 - Jan 19, 2009

We had yet another fantastic day today. First, we got up this afternoon and took a run to the Cheesecake Factory where we sat and ate a piece right there in the restaurant.

From there, we went home for a while and then we all loaded back up in the van and went out for dinner. Kevin got to choose and he picked Red Lobster. I was so nervous because it's kinda fancier and usually busy, but they were very accommodating. We sat near the back so Kevin wouldn't get bumped and let me tell ya - that boy can eat. He ate every last bite of the Ultimate Feast (shrimp scampi, butterfly shrimp, crab legs and lobster with a baked potato) and then he ate half of my chicken dinner and some of Breezy's crab legs too. He wanted me to order more crab legs, but I had to tell him no. I promised to take him to a chinese restaurant that Breeze frequents that has them 'all you can eat' for a lot less money, lol.

And something really amazing - Kevin pretty much pulls and stands up by himself now. He actually tries to push us away, but he just isn't sturdy enough to do it completely on his own yet. He is doing so well and I believe he will definitely be walking by the time we go home. Truthfully, it will probably be less than a month for him to walk alone.

And I took some pictures of us out and about today, but I left my camera in the van when Breezy dropped us off at the hospital and she took the van home with her so I guess you guys can see them tomorrow night.

In the meantime, I am calling it an early night.

Day 232 - Jan 18, 2009

It was a very relaxing day today. We didn't do anything at all except watch a bunch of tv and movies. We were going to go to Wal-Mart, but I got too lazy and Kevin didn't really want to go either so we just stayed home instead.

I did forget to tell you guys two things that have been going on. First, Kevin has been writing his name without needing to copy it. He has even been trying to write his last name, but still has to copy it (who wouldn't, lol). We did find he is able to read for the most part, but when it's something like "raise your hand", he doesn't understand it or he just can't read it. I do know that he doesn't know his body parts for the most part, so I wonder if it's more that and not that he can't read it. He also doesn't know his letters at all so if you ask him to point at the 'A' - he can't. What he is doing is recognizing whole words. Very strange, huh? I would have thought all of that went together, not realizing you can read without knowing your alphabet.

He is also able to tell time. And even funnier - he will get on the therapists' butts when they are late. When they walk in he will look at the imaginary watch on his arm and then at the clock and then at them as if to yell at them. It is so hilarious. And who knows...maybe now he will get his whole hour of therapy instead of 30 or 40 minutes that is left by the time they get here. I think it's time for me to step up and crack the whip (so to speak).

As to the fluid on his head - today it is nearly all gone. Apparently the shunt is working very well. Now they just need to make sure it doesn't pull too much off because that can be just as bad. I think they intend to do another cat scan tomorrow so we will see.

And I can't begin to tell you how excited my kids are that Pittsburgh will be in the Super Bowl. I sure hope that the Steelers can stop by and visit, but then again Breezy would probably drop dead if Troy came in the room, lol. Oh well, we'll see...

Day 231 - Jan 17, 2009

You would not believe the things we did today. First - and this is a biggie - Kevin dressed himself COMPLETELY WITHOUT HELP!! The only thing I did to help him was to tie his shoes. I offered to do something a couple of times, only to have the hand held up in a stop motion at my face, lol. So I just backed off and cleaned his room a little bit. I was so proud of him. It took him almost a half hour and he was so exhausted by the time he was finished, but he did it! I foolishly just stood at the window and cried because I couldn't believe I was seeing him do this! It was amazing!!

After that, we went to Subway and picked up some subs and went back to the house and ate and then we loaded back up into the m-van and went to the mall. We had to return the skateboard I chose for Christmas so that Kev could pick out the one he wanted. I was really nervous because our last mall experience was horrible, but it went great today! We went straight to the skate store and Kevin picked out his board, trucks, wheels and grip tape. He was so excited to be in there - you could see it in his eyes. And I had to laugh because when the clerk had finished building it, Kevin had to inspect his work and thankfully it was fine. Kevin was so incredibly satisfied with his board that he grinned the whole time he held it in his hands.

After that, we went to the candy store and of course, he went nuts in there. We only had one little bad moment and that's because they had a mirror in there and he caught a glimpse of himself. We were able to pull him out of it within a few minutes so it was okay. I think I am going to have to show him daily what he looks like so he becomes used to it.

And then - and this is another biggie - we went up to the food court and Kevin's eyes lit up when he spied Sbarro's pizza. We ordered and I had intended to take it home, but Kev wanted to eat there. I didn't know what to do because I didn't think we were ready. I didn't have his table, I didn't bring any cups (he had never used a straw yet) and most importantly - his eating habits are still unappealing because of his burns pulling his lips down. He can't even close his mouth while chewing yet. BUT - we did it anyway. I tried to find a quiet corner so that not everyone could watch us and we found a new use for his skateboard and that's a makeshift table, lol. And suprisingly enough - he handled the straw really well and I cut his pizza into very small bites so that it wasn't so messy for him. And...well...here's a pic:



I wish y'all could have heard the sigh of contentment when he took his first bite of that pizza. It was like coming home, apparently, lol. (notice that new skateboard upside down on his lap, lol)

I am also happy to report that barely anybody stared at us today. Even with all the staples in his head. That was a nice treat!

So it was a really awesome day! Breezy and I sat and scrapbooked tonight and just relaxed and had a good time and Kevin made HUGE strides today toward going home. He definitely has to be able to handle being out in the public and he will need to be as self sufficient as he can and it looks like he will be, for the most part anyway. Who knows...maybe completely someday.

I am just so proud of him - and Breezy too! Both my kids have had to surpass major mountains in the last eight months.

Day 230 - Jan 16, 2009

We had another good day today. We went for our first ride in the mini van and had our first experience out in the real world since the surgery. We went to the video store and spent a good hour just looking at all of the movies (where we pretty much decided that Kevin has seen EVERYTHING!) and then we went and picked up chinese for dinner. I was so happy that there was no stress at all and we really had a good time.

There really isn't a whole lot to write tonight so I am just going to throw some pictures up and call it a day.

Oh, but I did forget to tell everyone that my dear son tried to get out of bed today on his own. I had intended to eliminate the sitters pretty soon, but I guess that's not happening, lol.

Anyway, here are a few pics:

The first is of the top of Kevin's head.



This one is a head on of Kevin. Normally, the side of his head would be extremely sunken in, but notice the bulge of fluid buildup.



This one is of Kevin with my niece, Chrissy:



And here's one of my baby gettin' some lovin from him mom and his sister, lol. And just so you know - he made us do this for the camera. He is just such a ham...

Day 229 - Jan 15, 2009

Today was another good day. Kevin's appetite has returned full force and he ended up eating dinner 4 times in 3 hours. We did go down to the house for a few hours today too and it was really nice.

He did all of his therapies again and is just popping out with more and more words. He is also sitting on the end of the bed (or the edge of his chair) for minutes at a time and we are working on his balance while sitting there.

We also have him stand to transfer from bed to chair every time and I try so hard to get him to stand still for a few minutes, but he always wants to move. Take a step or two - just move. He never could stand still, lol.

And he is becoming accustomed to what he looks like, but I must say he isn't seeing the 'real' thing. His head will be extremely sunken on the left side (until we can have plastics step in and fix it), but because he has CSF built up over the flap, it almost looks normal. This is what he believes he looks like and I am going to let him believe that. I was happy to see him remove his head bandage tonight to show my sister while we were Skyping though.

We have also seen a huge increase in how much he is using his right leg now. He is even able to pull it up to put his own sneaker on and he now finds it funny to kick everyone in the butt with it when they turn around. He can definitely take a step with it, but when it comes time to put weight on it to take a step with his left leg, he does drop a few inches. It's going to take time and lots of practice to make it strong again.

We also had a visit from the attending neurosurgeon (not the young resident) this afternoon. I went in this morning and told my doctor that I was going to be calling my congressman today if the resident showed up again. Lucky for all of us the top dog came in. We are going to give it until Monday to see what happens with the CSF and if it continues to go down, we will reprogram the valve again to a lesser drainage rate. At this point I don't believe we will have another surgery, but that could change in the blink of an eye.

I think that's about it for tonight. I did take some pictures today, but frankly - I am just too lazy to download them tonight. It is now 1am and Kevin just fell asleep a few minutes ago. I want to do the same so maybe tomorrow night...

Before I forget though...Petra - are you ok? You mentioned needing extensive treatments for you health and I am just hoping you are not too sick? It's none of my business so if you don't want to answer - you don't have to...