Sunday, February 27, 2011

Day 1004 - Feb 27, 2011

Kevin and I took a nice long drive today. Goodness knows where we were, but we saw some fantastic views. It was a beautiful day for a drive too; close to 90 degrees and sunny.

We didn't really do anything else so I am going to sign off early again tonight.

Day 1003 - Feb 26, 2011

I am just going to skip tonight as we didn't really do much today anyway.

Saturday, February 26, 2011

Day 1002 - Feb 25, 2011

My boy came home today. I was told he did fantastic while in the hospital and it was a good trial run of him heading to ResCare. So far, everyone but fee basis has signed off on him going so as soon as they sign on the dotted line, Kevin can get started.

We will be going up on Tuesday so that Kevin can scope it out. I think he is in part excited and also scared at the same time. That pretty much sums up my feelings too. It's going to be hard to let him go, but I must - for his own good.

I will be seeing him often anyway (Jessica - you asked how far it is and it's about 40 minutes from our home in SA). We are going to get started on that vision therapy that I had mentioned a while ago. Our doctor at the VA found someone local that is willing to see what she can do for Kevin. I don't know how often that therapy will take place, but I am guessing at least once a week. He will also need to go to BAMC for his acupuncture, we will be going to Pittsburgh how often and there are other things too (laser therapy on his burn scars, eye surgeries, possible shunt removal and we plan to 'fix' his eyebrows too). In case you can't tell, I'm trying to make myself braver about this, lol. I know I have serious trust issues, but I will have to get over it.

So anyway, sadly - Moe had to go home today. She made it safe and sound and I can imagine how hard it was to go from 80 degrees to 20. And I think I heard that they may get 8 inches of snow tonight? Geez. I sure don't miss that!

Well, it's off to bed for me. Hopefully anyway...

Friday, February 25, 2011

Day 1001 - Feb 24, 2011

Moe and I played tourist today. We went down to the Riverwalk and to the Alamo. It was close to 90 degrees here so you couldn't have picked a better day to be outside.

I only talked to Kevin once today, but he seems well. I will be picking him up tomorrow afternoon and he is excited to come home. I know it isn't easy for him to be in-patient, but I really needed the break and he had so many things that needed to be tested and done that it was just easier to do it this way. It was also imperative to get a true neuro-psych analysis done prior to him going into ResCare.

I am anxious to see my boy though. I miss him - crazy as that sounds.

Thursday, February 24, 2011

Day 1000 - Feb 23, 2011

I don't have much to say tonight as Kevin is still in the hospital. He has only called me a few times tonight, but he says he is bored and you can tell he wants to come home. Johnny did go and visit him tonight for a while though, which did help.

I do want to show you guys an article that Mike from the Post Gazette wrote about the caregiver's bill. Apparently it was supposed to be start on Jan 30 and obviously the VA is nowhere near ready to roll it out. I have heard from numerous folks that it will probably be at least another 18-24 months before things go into effect.

It worries me because even with Kevin going into ResCare, I still won't be able to get a job. I can't very well go in and tell a prospective employer that I need 4 days off in March to go to PA, then another 3 weeks the next month and more time in July. I would also need other days off to take Kevin to various doctor's appointments and therapies/events that aren't included up there.

Ah well. I don't want to think about it tonight. Moe surprised me with tickets to Wicked (something I have wanted to see for years!!!!) and we had a WONDERFUL night at the theater. SUPER SHOW!! Let's just focus on that.

Anyway, here are the links to the articles:

Sunday's Article


Wednesday, February 23, 2011

Day 999 - Feb 22, 2011

Well...Kevin is firmly ensconced in the hospital. He packed enough stuff for a month long stay, which is hilarious in itself. He always has to take all of his things though - his challenge coins, more than one pair of sneakers (to match his outfits) and every electronic gadget he owns, lol.

We did go to an acupuncture appointment first and all went well with that.

And then we hightailed it over to the VA hospital. So far, so good. Kevin has only called me once and that was because he wanted to order a pizza and the night nurse didn't know how to pay for it with Kevin's debit card.

So, he will be kept busy while admitted. Lots of testing and therapies to see where he stands physically and cognitively. I am looking forward to seeing the results.

And we got approval to go into ResCare, with the knowledge that we will be going back and forth to Pittsburgh. Now we just need to see how quickly it's signed off on and how quickly ResCare can get him in. Who could be next week even! I just hope he likes it up there...

Tuesday, February 22, 2011

Day 998 - Feb 21, 2011

Sadly, my mom, dad and Michael went back home to FL today. We really had such a wonderful visit and it was hard to see them go!

The rest of us (Kevin, myself, Moe, Breezy and Christian) pretty much did nothing today. We all stayed in our jammies and vegged in front of the TV watching Cake Boss all day long. A much needed restful day. We have been running full tilt for weeks now and it's exhausting.

That being said, I am going to sign off early.

Monday, February 21, 2011

Day 997 - Feb 20, 2011

We had a really good day today. We went to a place called Enchanted Springs Ranch and had a blast. Dad didn't go because he wasn't feeling well and Kevin didn't intend to go, but then he changed his mind just as we were walking out the door. Here are some pics from today:

While we were there I had Kevin arrested. It was so funny! Here are some photos of that:

After we went to the ranch, we all met up and went to dinner (Breezy and Chris too) and here are just a couple of photos from there:

And then we came home and took some pics. Truthfully, some of these are from all week, but I just got around to uploading them.

Lots of pics tonight as I don't have much to say. We really enjoyed this place though so if anyone is ever in the SA area, you should check it out. I think it's on Oprah's list of wackiest attractions too.

I'm really glad Kevin went. He enjoyed himself so much!

Sunday, February 20, 2011

Day 996 - Feb 19, 2011

Yay! Moe made it here today! I picked her up at the airport this evening and then we came home and ate a huge turkey dinner.

Unfortunately, she has been sick for the last few days so she went up to her room and crashed pretty early.

Downstairs another night of rowdy games of UNO ensued. This family is so competitive, lol. I don't know how Moe slept through it really as everyone is insulting and playfully screaming at each other the whole time, but she did, hehe.

That's pretty much all that happened today so I am going to sign off early.

Before I do though - Sally - I am so anxious to hear how the 9/11 Flag Ceremony went. I am so happy that you were able to put a stitch in the flag in Kevin's name! Thank you!!

Friday, February 18, 2011

Day 995 - Feb 18, 2011

Today I went with the polytrauma doctor from the VA and our case-manager to the two transitional facilities that are between here and Austin.

The first one that we went to was ResCare Premiere in San Marcos. This place had a more homey feel as Kevin would start out living with two other guys in a duplex. He would learn how to pretty much be self-sufficient; from riding a shuttle to his doctor's appts by himself, to going to a restaurant and ordering his own food, to possibly paying his own bills, to cooking and everything in between.

This one is in a college town with lots of things to do for someone Kevin's age. It had an upbeat and energetic feel to it and as soon as they told me that the guys were going fishing this afternoon and then to Hooters for dinner - I knew Kevin would like it here, lol.

The second place was CORE in Austin and it was totally different than ResCare. This place was rustic with open fields and farm animals abundant. It was more structured and didn't focus on actual reintegration into society as much as the other place did. I felt this one more focused on therapies and schedules and it had a slight nursing home feel to it.

I can't say that I disliked CORE, but I don't think it's a good fit for Kevin. I do feel that someone different than Kevin could do very well there, but truly - ResCare just seems like a place he can have FUN at and that has to be what life is about as much as possible.

So as soon as I got home and mentioned Hooters to Kevin - he was in, lol. Yep - a typical 22 year old male. Truly, he is open to going now and when I mentioned that the guys went to a gym and worked out he pointed to himself as if to ask "Me too?". He seems excited about it and I just hope it stays that way. I so want him to go out and do things on his own. He does too. When I told him he would be taught to take the shuttle to BAMC all by himself his face lit up like a Christmas tree. He was beside himself in excitement.

So now it's up to funding to see how this will work with us running back and forth to Pittsburgh. We aren't sure if he can be admitted within the next couple of weeks or if we should wait until after the procedure in April as we will be gone for up to three weeks. We will know more about that next week when everyone get back to work on Tuesday.

Keep your fingers crossed!

Thursday, February 17, 2011

Day 994 - Feb 17, 2011

We had a good day today. We just basically stayed home and visited with my mom and dad. I did spend a few hours on the phone with various medical people and a good bit of that was with the folks up at UPMC in Pittsburgh. It looks like we will be going up to Pittsburgh somewhere around March 14th for Kevin's initial screening. That visit will be for 4 days and then we go back up at the end of April for the actual procedure. That visit will be 2-3 weeks and it looks like we will be there through Easter. Kevin is very excited about this and I am still keeping my fingers crossed that he will be able to take part in it.

One really great thing that happened just a little bit ago is that Kevin told me his head isn't hurting as much as it used to. I can only guess that it's the acupuncture? He says that his head is always painful, but that it only hurts a little now. Wouldn't it just be so wonderful if ALL of his pain went away? Oh, I so hope that happens!

I am going to touch on just a few comments as I am waaaaayyyy behind:

Judy - it was great seeing you and thanks for explaining who Dorothy Lorigan was. Dan - I had no idea, lol. It's such a small world though, huh?

Hallie - I wish you and I could get together and just get a good drunk on. Of course, we'd probably both just be blubbering and bawling, lamenting about how life really does suck. I am so sorry about your new car too. Hope your husband is doing well. BTW, how did the stem cell eval go?

Miss Em - I haven't sat down with Kevin in any artistic fashion in a long time. I will have to get back to it. Thanks for reminding me!

Lisa D in Cali - I just finally got around to looking at the new Tony Hawk Shred game. That just might work and Kevin just might like it! I am so glad they have it for the Xbox. I will look for it next week while he is in the hospital. Moe - remind me, please (you know how dumb I am anymore, lol)

Mark (arctic rec0n) - Kevin's Xbox Live ID is die200O - the last O is the letter O and not a zero. To anyone else out there - find him - he'll love it. (and I know it's a gruesome ID, but he chose it years ago and he is who he is)

Bern - love you and miss you!

And now I need to get to bed. I have a busy day ahead of me. I don't think Kevin's going to let me sleep tonight, but I'm gonna try.

Day 993 - Feb 16, 2011

We went to therapy today and when they asked Kevin about us going to Pennsylvania, he got really quiet. He pretty much refused to do any therapy after that, but the therapists were very understanding about the grieving process.

We decided to just leave as he wouldn't do anything and he didn't speak the whole way home and then he just went into his room to rest for a while.

He did come out of his room for dinner and then a rowdy game of UNO ensued. He was feeling better after that and sat and watched some TV for a while.

I think I am going to sign off and get the dishwasher loaded and go to bed though. Everyone else is already sleeping - even Kevin - so I should be too.

Wednesday, February 16, 2011

Day 992 - Feb 15,2011

Today Kevin had another acupuncture appointment. So far we aren't really seeing a difference, but we are told it might take a while.

As we were leaving BAMC though, a man died on the curb of the drive for valet parking. Kevin and I watched them try to revive him for close to ten minutes before they finally got him on a stretcher and rushed him into the hospital. It was a sad thing to watch. Truthfully, I can't get the image out of my head of him just lying on the road with all of the trauma team members doing CPR. It's strange to live a life like we do in a hospital environment for the most part and not really ever see a dead person. I never thought about it until today and I honestly hope I never see anything like this again. His poor family...

But on a personal good note, I heard from the surgeon in Pittsburgh. Everyone involved feels Kevin will have no problem being admitted into the trial and that means we will head to the Burgh for a quick visit with the doctor sometime in the beginning of March. Six weeks after that we will head back to Pittsburgh for the actual procedure and that visit will be for about two weeks. We will also need to go back at the 3 (and 6 I think) and 9 month post op dates for re-evaluation. Apparently sometimes the fat is reabsorbed into the system so they evaluate periodically to see if that is occurring. We are both excited to give this a shot.

And my parents and Michael made it safely into town this afternoon. We had a nice dinner and then we all played cards for a while. I need to get some pics of them with Christian tomorrow. He's growing so fast and is already over 10 pounds and is 22 inches long.

And now I am off to bed. Kevin is watching a movie and hopefully it will keep him entertained until he falls asleep...

Tuesday, February 15, 2011

Day 991 - Feb 14, 2011

We made it back to Texas today and are gearing up for visitors over the next couple of weeks. My mom, dad and nephew are coming in tomorrow and Moe is coming on Saturday.

And I hate to do it again, but I'm going to sign off early tonight. It was a whirlwind of a weekend and I am beat. Kevin apparently is too, because he is already snoring the night away.

Sunday, February 13, 2011

Day 990 - Feb 13, 2011

I'm not really going to write much tonight, but I am going to post some photos from last night and today:

These first two are my sister and her kids:

This next bunch is of the family - all of the aunts uncles and if I'm not mistaken all but one of Kevin's cousins:

The next two are of Kevin with his grandmother:

And this last is of Moe and her family. They came down to the hotel and we all went to dinner tonight:

The service today was very moving. And Kevin did a fantastic job again. I'm glad we came - it did him a world of good and it was nice for me to see everyone again too.

Saturday, February 12, 2011

Day 989 - Feb 12, 2011

Kevin had a great time today seeing all of his cousins, his grandma and his aunts and uncles. He remembered everybody that was close to him when he was young and he handled seeing Fred very well. He did get a little teary, but I was actually glad to see that.

And Kevin really did do fantastic all day. No over-stimulation at all. We got there at maybe 1:45 this afternoon and were there until a bit after 9pm tonight. He talked with everybody and hugged and shook hands all day long. I was quite proud of him. I just wish Breezy could have been here too, but the timing just didn't work for her and Christian.

So after we left, my sister and her family all came down to the hotel for a quick visit. It was nice seeing everyone and I'm glad she could make it down. I took some pics tonight, but I'll upload them in a couple of days.

Unfortunately - to everyone else - it's just not going to be possible to visit with anybody this trip. We will be at the funeral all day tomorrow and we leave Monday to go back home. It's hard being here and not being able to visit, but hopefully we'll be back over the summer sometime.

Day 988 - Feb 11, 2011

Kevin and I did end up making it to PA with the help of Veteran's Airlift Command. They were so wonderful in purchasing the airline tickets for me to take Kevin to Fred's funeral. Brianna decided not to come as Christian is just so new to the world and she didn't want him getting sick.

So, we have been traveling all day - just now getting to the hotel - and I am signing off and going to bed.

Friday, February 11, 2011

Day 987 - Feb 10, 2011

Well we went to see the plastic surgeon today to start the process of fixing the indentation in Kevin's head. Apparently the process of taking fat from a person's belly and injecting it into their head is a relatively new and the DOD (Dept of Defense) is doing a study right now to monitor the effects.

We are hoping that Kevin will be accepted into the trial and it appears that he should be a perfect candidate. One great thing? The study is being done in Pittsburgh! Yes, if Kevin is accepted, we will be heading to the Burgh for the procedure and subsequent monitoring.

I don't know anything else about it yet, but maybe I'll hear from the surgeon in PA tomorrow. Please keep your fingers crossed - it is the best non-invasive technique available - even if it is still new.

Kevin also had acupuncture while we were at BAMC today and we are going to continue it on a weekly basis for a while to see if it really helps him. I was surprised Kevin wanted to try it again because he said it made his head hurt more the last time. So far, so good, today though.

We also got the call that Kevin's new brace was already done so we drove to the VA hospital after we left BAMC and picked it up. Kev is struggling a little bit with it yet, but I think it's just gonna take a couple of days to get used to the bulkier feel of it.

And to end, from reading the comment from Tim/Beth on the blog yesterday, sadly it appears that Kevin's grandfather has passed away. Kevin is very sad and has talked about it numerous times today. We haven't spoken to anybody about it (None of my or Kevin's contact information has changed and my email is at the side of the blog so I'm not sure why you couldn't contact us privately?), but I am hoping we are told of the funeral arrangements. I am unsure if I can get Kevin up there in time, but we would at least like to send flowers.

Wednesday, February 9, 2011

Day 986 - Feb 9, 2011

I am going to skip tonight. We have to get up very early for an appointment with the plastic surgeon that will be working on Kevin and I am going to force myself to get some sleep.

Day 985 - Feb 8, 2011

I was thinking that I had explained the transitional facility idea to you guys, but after the one comment I realized that I hadn't.

So this place will NOT be a permanent home for Kevin by any means. It is transitional - meaning it helps a patient transition to a normal living environment. Now admittedly, Kevin pretty much lives a normal life, but I guess this place would make him more independent.

In this place, he will have speech 5 days a week to help him to talk better. I understand he will learn how to deal with emergencies, how to fend for himself to the best of his ability. I don't know for sure if they teach him how to cook and clean up after himself, but I believe it's part of the agenda too.

We have no way of knowing at this point how long Kevin would need to be at this place. It could be a few weeks or it could be a year. Frankly, he has to agree to it or it's just not going to work anyway, but it's something that could make such a difference to his life.

Truthfully, I already think I do the bulk of teaching him all of these things, but the VA is concerned that I am requesting more help with Kevin. I don't think they are understanding that having someone come to the house is more about getting Kevin companionship - even though it helps me too.

And they seem to think that Kevin has me running errands constantly, but a lot of the times that he calls me is because he is excited about something on tv or that he just remembered or whatever. It's him TALKING. I mean...who else's name is he gonna call? I'm the only person here. And honestly - if he wasn't talking to me then he would just be lying in bed depressed. (not that this makes it any easier to hear the word "MOM" screamed all day and night, but I do understand WHY he does it)

Sometimes I don't think they have a real grasp on what Kevin can do and already does either. But, I know that's one of the reasons they want him to go into the hospital in a few weeks. It's still not going to give a clear picture as they won't be at our house watching him do the things he does, but at least they will get a better picture of how much he understands.

I guess I will just keep my eyes open and see what I think of these two places. Like I said, they really need to be a good fit for Kev anyway. I would never force him to do it because it would ruin the relationship we have. Respect is of the utmost importance in this family - I respect my kids and will always listen to their wants/needs. Not that I won't argue my point if I disagree, but still...

Tuesday, February 8, 2011

Day 984 - Feb 7, 2011

Today we went over to the VA hospital to have a cast done of Kevin's right foot/leg so that a new brace can be made. They believe if his ankle is supported his knee won't hyper-extend any longer. I sure hope they're right.

In the interim they gave him a knee brace hoping that it will help until the new one is made. They are also discussing an electro-stimulation device that may help his nervous system remember what it needs to do, effectively reminding the muscles, et al. Truthfully, I believe they are planning to do the Bioness for both his arm and his leg. I have heard nothing but good things of this so I am excited about it.

We had tried it previously if you remember. It was a long time ago at the VA in Tampa, but the person testing it on Kevin turned it up too high and he screamed in agony. He would never try it again until now - another sign that he understands so much more these days.

We have also decided to wean Kevin off of the Lyrica and put him on another nerve pain medication that doesn't affect your weight so much. I sure hope that helps as Kevin is really putting the weight on and it needs to stop. He's gotten too heavy for me to lift if something happens and he falls.

And next week a few of us are taking a road trip to visit two transitional facilities in the area. There's CORE in Austin and ResCare Premier in San Marcos (both in TX). I will be leaving Kevin with my parents for the day while we go check them out as I don't want to take him to one that's a bad fit for him and he doesn't remain open to the need for it.

Of course I am quite nervous about it, but I do think it's pretty close to time for him to take that next step. We just have to get this leg business taken care of first and he is also going to be having more plastic surgery right quick.

I'm sure these places take time and lots of paperwork to get into so I think it's a good idea to scope them out now though. If anyone out there has firsthand knowledge of either of these places, I would love to hear about it.

And that's pretty much it for tonight so I'll catch y'all tomorrow...

Monday, February 7, 2011

Day 983 - Feb 6, 2011

We had a very lazy day today. We just putzed around, watched some tv and then Kevin watched the game. I half tuned in, but it's not something that can hold my attention long. It's a shame the Steelers lost though.

So last night I saw Kevin do something new. He had to actually log in to Facebook and he amazingly typed his email - only missing the @ sign (he had put a dot there and when I showed him the @ sign he said 'duh' because he remembered). He also typed his password in.

And then tonight he was searching for a movie and typed the first three letters into the search box and then saw rather quickly what he was looking for. I think I just stood there dumbfounded as I had no idea that he could do that now. I remember a month or so ago trying to show him how to type KEVIN on the keyboard and he couldn't really do that. I remember it taking forever for him to look for each letter on the keyboard and he just whaled (sp) through typing it out last night. Aflippinmazing, huh?

I guess I should say that if you are a friend of his on FB, gosh knows if he will write something or if it will make sense or be spelled right. I'm not complaining because at least he's trying, but I'm just throwing it out there because I'm not sure how much he can do.

I wonder if this will be part of the neuro-psych testing? I need to find the time to research what this testing is like before Kevin goes into the hospital.

And speaking of Kev - he's calling me so I guess I'll end here...

Sunday, February 6, 2011

Day 982 - Feb 5, 2011

Today Breezy came over and stayed with Kevin while I went out with a couple of friends that were in town for the weekend. I had a great time, and I am guessing that Kevin did too playing with Christian.

I managed to snap some pictures tonight:

Honestly, don't I just have the cutest little family?

So anyway, nothing much really happened for me to talk about today. I guess I'll just sign off.

Friday, February 4, 2011

Day 981 - Feb 4, 2011

We finally made it home. What a ride though, let me tell ya'. It just poured the first half of the way and then it turned to ice. In the wee hours of the morning, after seeing a few accidents within a few miles and sliding a little bit myself, we decided to stop and get a room. I am so glad we did, because IH 10 was closed from Houston down and many parts of it were still closed when we left at noon today.

But...we're home. I managed to get the house scrubbed down and then Kevin and I babysat Christian so that Breezy and Chris could go out with Chris' parents as they are in town from New York this week.

And now this exhausted girl is going to bed. I can barely keep my eyes open.

Wednesday, February 2, 2011

Day 979 - Feb 2, 2011

We didn't really do much today. I had to run to the DMV as both of our handicap placards somehow blew out of the car? Don't ask me - but they both have been missing for a good couple of months now.

We had another huge family dinner and then Kevin, Johnny and Josh (Chrissy's husband) all went to a Grand Prix Go-Cart type of place. From what I gather - they all had a lot of fun. They did admit they had trouble getting Kevin back out of the go-kart, but they still had fun.

It was a nice, yet quick, trip home, but sadly we need to hit the road tomorrow. I think I am just going to skip tomorrow night as we are going to try to drive straight through. We may not be able to - it really depends on Kevin being able to handle it, but we are going to give it a shot.

That being said - we'll catch ya Friday night!

Tuesday, February 1, 2011

Day 978 - Feb 1, 2011

It's been such a whirlwind week. We were planning on heading back to TX tomorrow, but we decided to wait an extra day because of the storm that is wreaking havoc across the US. It's also so nice here and who wants to head back to SA when it's really cold there, lol?

So yesterday, my mom, Johnnie and I all went over to show Johnnie the beach on the FL side of the gulf. (Yes, Johnnie came with us as he's like part of the family now, lol. He is also helping with the driving). Kevin had no desire to go and I didn't force the issue because I knew there would be a lot of walking and he's just not up to it right now.

Truthfully, I think it was really good for all of us to get out like we did. My mom is my dad's caregiver now and she rarely gets out so it was nice to see her smile and have fun. Johnny works a LOT at his different jobs so it was nice seeing him relax too. Gosh knows I need it so it was an all around good day for the three of us.

Kevin stayed home with Pap (my dad) and I guess they had a nice time talking and relaxing by the pool.

Today, I went and picked up the new van and then we all hung out at the house. Chrissy and her husband, Josh, came over and she is just so cute pregnant. All of the kids swam and had a good time and then the boys went out with my sister tonight while I stayed home and played cards with my folks. Another good day.

Day 977 - Jan 31, 2011

I am going to skip again tonight. It was a beautiful day here and we took advantage and spent the bulk of it outdoors. Everyone is fast asleep - except me and Kevin, but I am going to see if he'll let me sleep too.