2010 A memorable year in ways I'd like to forget

Goodbye 2010

Things have been trying all around I've seen it, lived it, heard it and read about it all around.

Friends of mine have had parents pass away, have been fighting cancer, and dealing with serious stuff every day.


Chris's lack of work til August and my sister's brain aneurysm make this a memorable year in ways I'd like to forget. My gray hairs and wrinkles - I seem to have many more now!! - have been hard earned; in the scheme of things, held up to the stuff that others have had to endure - that's nothing.
At one point Andie asked me if she'd thanked me for all I did for her while she was hospitalized and in recovery and I couldn't even say it without losing it .... she thanked me by fighting and staying alive!! this holiday season would have been so different had things turned out otherwise... EVERYTHING would have been so different...

The support that you have all given our family is greatly appreciated and will never be forgotten - I can't thank you all enough for pulling me through all of this.
With Andie's recovery - she's searching for her own place again and now Chris is working at a great company so things are definitely moving forward.
I'm so looking forward to the new year.

This post has been brewing in my mind for a while but I didn't want to jinx anything by posting too early. I usually think the topics over and then just write it as I type - so if it seems disjointed so be it. Now that the new year has arrived in some parts of the world and Josh and I are hunkered down here at home watching Chitty Chitty Bang Bang I'm all ready to start 2011.

Thanks for all of your love and support and Happy New Year, to everyone!!

guest post by Chris

     
                                                                   
                                           
Josh's Dyna-Mite team was in a tournament over the weekend.  While his team did not do well (uh...we did not win a game or score a goal!!) he played VERY well.  Considering he has only been back on the ice for under a month.  He had a number of breakaways and hit the post at least 4 times in 3 games.  He also subbed for another team and scored a goal in that one (they won that 5-4). At the end of the weekend the teams pick players to perform in a skills competition.  Fastest skater, shootout and goalie.
Coach Craig and I picked Josh as our shooter based on his sheer number of chances and the fact that he hustled the entire weekend.

3 shooters, 3 goalies,  2 shots per shooter.  Most goals wins for shooter, least allowed (obviously) wins for the goalie.  After the 3 rounds round we had a tie.  2 goalies let in the same # of goals and 2 skaters tie with the same number of goals.  So Josh goes into sudden death against his buddy Billy from the other Dyna-Mites team.  Billy is younger but truth be told, is a better hockey player.  His older brothers have played for years.  JOsh goes first, First shot by Josh, GOAL!  First shot by Billy, SAVE!   Second round, 2nd shot for Josh, SCORE.  Second Shot for Billy, SAVE.  So now shooter is decided (winner Josh) but the goalies are still tied as each let in one vs Josh!  Long story short, we went another 3 rounds before goalie was decided!
In the end after Josh was awarded his trophy he threw his gloves in the air and skated around ala the Stanley Cup.
I was the MC so I can not comment on the fans reaction during the event but I am told (Lyn can confirm) that as Josh scored he slated along the boards and banged the glass (fans lined the glass).

Lyn brought up a very good point last night.  Unlike most of us, Josh does not seem to be intimidated by the spot light.  As the MC I could see the tension of the kids faces.  Not Josh.  Goal or no goal is skated back into the line for his next shot with a HUGE smile on his face.

A very proud Coach, MC and Papa
Chris

PS- One last note...all his shots were NOT just skate in and fire the puck.  On a few occasions he made sweet moves, got the goalie to commit and scored. 

Strange happenings on Meadow Creek Lane

As I sat down to look at emails I got a little weirded out when I noticed a car slowly going back and forth on the street... what the heck?? What should I do?
Wait a minute... add that to the neighbor's trash and recycling cans in strange locations the past few days and I'm beginning to think something's up until I realized it's the boy next door learning to parallel park!
Now I get it, take all the time you need Timmy, I'll gladly stay out of the way in the mean time!

The Village That Shall Not be Named

The Place that shall not be named
The Village
____ Village
You Know Where
Un-named Village

These were going to be my suggestions for new names for the Philly Christmas Market until I just read:

http://www.philly.com/inquirer/home_top_stories/20101202_Nutter_says_market_will_get_its_name_back.html



Whatever it's called our dance group is scheduled to perform there this Sunday at 2:00 ... unless someone finds something wrong with that!

Yo, Dr Miller!!

As Josh waited for his x-ray at the orthopaedic surgeon's office (a different branch office from the one we previously visited in Paoli) he saw the doc walking by and said in his never low-volume voice YO!, Dr. Miller - are you working here today?? They were obviously very busy and we were seen well after our appointment time but the comment provided a bit of comic relief - the whole waiting area got a chuckle out of it!
He even got some candy from Dr. Miller - Josh got a KitKat bar the first day we met him, just after the cast went on, so each time we've been back Josh asked him about the KitKat and he came away with loot every time, there was some for Dima this time as well since he was there too. He did sit nicely looking at the Main Line type magazines for gardens and fountains while Josh was waiting to be seen.
As of the x-ray today Josh has been officially cleared to run, ice skate and ride his bike - we went to a playground first and he was on the bike within minutes of us getting back here.

the little lady ...

While deciding what to watch during our evening down - time (no ice hockey, CCD, homework or other projects) Dima asked for the show with the "little lady" . After getting a better idea of what he was talking about I figured out that when they do a split - screen view of the puzzle and the contestants... Vanna does look like a little lady. Wheel of Fortune!

Go out and live your life... and make it count.

Yesterday Andie had another follow up appointment with the neurosurgeon who performed her surgery back in January and after everything checked out alright he said "you're a very, very lucky girl" - she made a point of mentioning that he used two verys -and " Go out and live your life... and make it count". Hard to imagine what that must be like to literally have these patients' brains in your hands and see them and talk to them days and months later.
She's already said that she wants to do something to give back to Good Shepherd Rehab Hospital. Even though the aphasia is always going to be an issue and she still stumbles in her speech and has to stop to think of words she realizes the odds that she overcame to get to this point.
Today she's off to the shore for an overnight trip with a girlfriend - guess she IS getting out there...

Dima's hockey team : guest post by Chris

Everyone has of course heard the stories of how bad kids are today. How they have no respect, no appreciation for others, no view of the world other than me me me!

At the request of Lyn for her blog (after I told her this story she wanted to post it) I want to bring a little bright into a sometimes rather dark and dreary story line.

As you may know I coach youth hockey (how well is debatable!). Both Josh’s Mite team (kids from 6-8) and Dima’s Squirt Team (ages 9-10) so I get to see a lot of the ‘leaders of tomorrow’ every week.

Last weekend Dima’s Blue Lion team was playing a rather close game. As the game went on the lead swayed back and forth. At one point the head coach of the Blue Lions and I noticed some rather ‘seedy’ play by the other team. Without getting technical with coaching jargon, the kids started to play both more physical and a more selfish style of play. As we coached our boys to be mindful of this one of the opponents kids (recall 9 and 10) skated by our bench and made some very derogatory comments. In addition as the physical play by the opponent escalated (we are NON check) a steady stream of their players began to take seats in the penalty box. At one point one of the parents manning their box gave the thumbs up to one of their players after a dangerous check of a Blue Lion into the boards. Nice huh. Ironically as the other team played their ‘new style’ the Blue Lions took control of the game. We beat them at every facet of the game. Even our ‘second’ line got in on the scoring. We played nearly the entire 3^rd period in their zone. Suffice to say the post-game speech by the Blue Lions coaches was not directed at the win, but solely at the poise and sportsmanship that the Blue Lions had during that game. They all knew the other team was playing dirty, they did NOT stoop to that level of play. We beat them on the ice, the way winners play the game. Winners regardless of the actual score!

Fast forward one week. Blue Lions are facing a new team in West Chester. It becomes apparent after 1 period that we may be the better team…by quite a bit. 4-1 I think the score was. Coaches start talking more and more about thinking pass first before shooting etc. End of 2 and the score is now something like 6-1. Blue Lions coaches pull our best players back from offense and have them play D. All D are now instructed to dump pucks into the corner rather than shoot. With 5 minutes left in the game even this is not working. The score board reads 7-1 but it is more than that. We now instruct the kids to fire all pucks into the corners when possible. All the Blue Lions players begin to play this unselfish style of play. I’ll focus on Dima here because he is my son and someone I always have an eye on (for obvious reasons), even though he plays wing and I coach the D.

Anyone that knows Dima knows he is not the best player out there. He does not get many goals, chances now and then yes, goals no. But he tries EVERY game and EVERY shift. He has improved greatly this season and THAT is all I ask for as a father and a coach. So here we are, about 3 minutes left in the game, Dima is only a few feet front of the net, puck comes to his stick not once, not twice, but 3 times. Each time rather than shoot he fires the puck into the corners. Here is a kid that scores infrequently and yet, when he has a chance for a goal, fires the puck into the corner 3 times! I, as a father and coach of the Blue Lions, could not be more proud of Dima and the Entire Blue Lion team. Winners both on and OFF the ice!

Now tell me there are no good kids in the world!!!

Chris

Assistant Coach

Berks Blue Lions

STEIN of the book?

When we sit down for dinner we take turns talking about our day - last night as Josh described library class he was talking about learning about the stein of a book - and as Dima and I tried to figure out what he was talking about Josh was getting frustrated until Dima got that he was trying to say SPINE of the book - do you think we spend too much time at Oktoberfests???

Just now they were eating breakfast and cracking up going "how can yogurt have NO FAT?" and describing how it could puff up if it got fat.

the cast is off

Josh had his follow up appointment with the orthopaedic surgeon yesterday and the cast came off. They x-rayed his foot and found that one of the bones is 50% healed and the other is 75%. The doc gave me the option of re-casting it or going with a boot and since the boot would have had to be put on within two weeks anyway I opted for the boot. He's still using the wheelchair at school and getting the hang of using a crutch around home but gradually we're going to gradually build up the amount of time we let him use the foot to avoid sore muscles. In about two weeks he can use the boot regularly and then he has another follow up appointment in three weeks.

Since the boot has velcro I'm afraid he'll try to take it off - Mr. Destructo likes to play with anything and everything! We've got some cable ties ready if he needs them to lock it in place! But for now we're trusting him with it since he wasn't used to taking it off when he had the cast, plus he's been told that only me or Papa or the school nurse can take it off and we've emphasized that if he starts goofing around with it too much he could hurt the foot again and end up back in the cast and it'll take even longer to get back to doing normal things. Chris is looking forward to getting him back to ice hockey but he's looking forward to riding his bike again.

Dima's been sick with a cold these past few days so he was home from school Monday and Tuesday and I had to take him with us to get Josh's cast off; while Josh was laughing and saying that it tickled Dima was freaking out about the little saw they used to get the cast off. So, since his cold seemed better this morning he was back to school today with a little bit of sniffling hoping to be fully recovered on Friday when his class goes to the Franklin Institute.

... and a red cast

Josh definitely has two broken bones in his right foot even I could see that from his x- rays! The doc said if it would have been one millimeter off what it is he'd have had to recommend surgery!! It turns out it's his second and third metatarsals, right foot. Josh had a choice of red for Phillies or green for Eagles so since the dance group is supposed to be dancing before the Phillies game on Saturday he picked red fiberglass. I guess we'll have to get him some logos and decorate it. The only time he complained was when we were putting the cast on - I had to be the bad guy and hold his foot in a way that was uncomfortable but was the best position to cast the foot in.

So... after spending the morning at the orthopedic surgeon's office he's home and trying to nap since last night was restless for him. Each time he'd fall asleep and torque the foot he woke up. I can tell when his Advil wears off cause he starts fussing. He has another appointment to follow up with the orthopedic surgeon in three weeks, hopefully all will go well and that will be that.

We'll be borrowing some crutches from friends and I'm sure he'll be up and around on them before you know it but for now I'm still carrying him around as I did all morning at the time I was wishing I'd had a stroller. For here at home I showed him how to get up and down our steps by scooting on his butt. In the mean time thinking a stroller might be useful to get around in the neighborhood - do any of you local moms still have one that we can borrow?

I don't know what he was saying in the waiting room as I got him checked out and made his next appointment at the doctor's but as I carried him out most of the people in the waiting room were chuckling and saying good bye to him.... plus the doc gave him a Kit Kat for being good!

broken bones???

Looks like Josh found one way to get out of going to hockey practice. He and Dima had a few minutes after school, homework and dinner before we had to leave to get him to the rink so they were playing football outside, the two of them tumbled over each other and Josh really started crying, usually he recovers pretty quickly to get back to playing so when he didn't get up and kept crying I had a feeling it wasn't good. I found out later on that he also heard a crunch sound when Dima was - accidentally - stepping on his moving foot. So after a visit to the MedCenter100 we've got a prescription to have it x-rayed tomorrow and it looks like he's going to end up in a cast - apparently his forth and fifth metatarsals on his right foot seem to be broken. So for now it's wrapped, we're carrying him around and he's taking ibuprofen and keeping it elevated while sitting around moaning once in a while. At least he's stopped the hysterics he was in when Chris and I decided he had to have it looked at. Then he was so worked up that he almost threw up. Even on the drive there he was out of breath and then I noticed he was crying more when the car accelerated... the doc said that fractures can be sensitive to movement. So tomorrow we'll get him set with his cast and crutches: hopefully he won't get too bored sitting out the physical stuff over the next few weeks.

Chris in the local paper

http://www.dailylocal.com/articles/2010/08/29/life/srv0000009180007.txt

Daily Local writes about men's hockey.

Andie earned her driver's license!

After hours of testing her reflexes, knowledge of driving laws, safety, and then practical testing in a car today Andie proved to the examiners that she's road - worthy again! She's glad to have done it and still has to have her car inspected - it lapsed while she was... um... busy so she's soon to get a bit of her freedom back. As you can imagine having everything taken away including her place, her mobility and lots of her stuff taken away or packed up by the time she was aware of what had happened to her was a blow and this is a step to being her own person again. Congratulations Andie!

It's the most wonderful time

I know why they invented school... especially on a rainy day the bickering - arguing and antagonizing!! ... my mom used to use that word -- Mom, and Andie I should say I'm sorry- I guess now I'm getting my payback!

Back to School Funny Staples Commercial

http://www.youtube.com/watch?v=fwcYbo7pjto

What I did on my summer vacation: part 2 Sister-sitting

Our parents are in Spain and Portugal and even before they booked the trip they checked to be sure that I could be around to keep an eye on Andie. With the brain injury still in the healing stages she still has some memory issues and needs some supervision since, well, anyone could forget to turn off the stove after cooking, but she's much more likely to, plus she needs someone to communicate for her in some cases so being alone long term isn't an option right now. She is doing pretty well physically, still walks slowly and tires easily ( she and Josh are keeping pretty much the same sleep schedule ) Her brain still needs time to re-wire itself around the injured areas and some of the brain cells are just gone so her range of motion with her right arm is limited and probably will continue to be.
I'm trying to motivate her to go walking when Josh and I go but she's always got an excuse to get out of it. She did go swimming with us the other day and actually got her hair wet! With as much time as it takes her to blow it out I thought whe wouldn't. She's been saying that noise is bothering her - like when someone is having a conversation outside of the speech therapy room while she's trying to think it distracts her and Josh is just a loud kid so she does need to get away from that once in a while so I make a point of getting him outside during the day sometimes she comes out too and sits out on the porch. There are times that she gets really frustrated either because of noise or just because of not finding a word because of the aphasia and then she exerts so much energy talking about being frustrated I try to tell her to use that energy to pause and think of the word or of whatever her train of thought was ... I know, easy for me to say.... But she does need to get more physical activity and I'll keep asking her to go walking in the hope that one of these times she will.
We stopped in at TGI Friday's the other day and I asked her then if the noise there bothered her and interestingly enough it didn't until she stopped to try to read the menu, I guess because she was happy to be seeing her friends there and she was used to that environment.
Andie's still keeping an eye on her blood sugar even though she's not on pills for diabetes anymore she seemed to crash a bit as we left speech therapy today but a granola bar helped and then we stopped at a buffet since she said she was too tired to cook, we had a small, early lunch - and I guess didn't want to wait for me to do it. On the way home we were all full and Josh was so stuffed he was in the backseat literally unbuttoning his pants on the way home. That kid ate crablegs(for a while he had three young waitresses watching him expertly pick the meat out) , shrimp, clams, chicken, more crab legs and multiple desserts!! Andie and I were alot more reasonable with our choices, but still full!
While we're here Josh and I will continue to take Andie to Good Shepherd for therapy. We walked around today Josh met and got permission to pet a service dog, then we and saw their huge therapy pool and found a fountain to sit by outside, it was pretty humid so after Josh goofed around there with two boys we made our way back inside and sat there a few minutes until speech therapy was done. It's just easier for her to have a ride than to rely on the bus system and it gives us another place to explore together.

What I did on my summer vacation: part 1 - Josh

Running across the lawns to see the best friend - watching next door to see when the playmate there is around, playing on the grass, riding bikes on the sidewalks, going to the Hokey pool - all this is stuff I did probably 40 ... yeah, I said forty!... years ago and Josh is now doing the same stuff at the same houses ( the kids aren't related to my playmates) but he's having a blast introducing himself around the neighborhood while we're here with my sister and our parents are on a tour of Spain and Portugal.
The kid next door he's known awhile and always looks forward to seeing him when we're here. The first afternoon and morning we were here he kept asking about him, until we spotted a boy down through the yards at the same house where my best friend used to live and he went down there and started playing. He's there during the days with his grandparents and little sister and he and Josh get along well. The grandparents are nice, great to talk to and I think it's a good thing for us to have something to do since Andie's hypersensitive to noises and Josh has no volume control so it gives her a break to have some quiet or to do her speech therapy homework and to not have to be surrounded by noise all day.
I keep thinking about how cool it is that when I was little I did pretty much the same stuff Josh and friends are doing now. Well, except we had alot less parental supervision, no battery powered, ride - on vehicles and simpler toys. Uh, catching lightning bugs, wiffle ball, and flashlight tag (this was pre lazer tag) were the big activities back in the day. Oh and walking around in the puddles after rain storms. Today I had a flash back while walking Josh around the block about the one girl that lived down the street who used to eat catfood and brag about liking it. Sometimes I wonder what happened to some of these people. As we walked this morning Josh saw a mom bringing her toddler daughter outside and was like "do you have any boys??"!!! I explained that he's looking for more kids to get together to play.

inside aphasia

Imagine being so tired that you can barely think enough to put words together.
Imagine being so frustrated with trying to speak that small talk doesn't even seem worth the effort it takes to put a sentence together.
Imagine not being able to remember the names of significant people or things including things like aneurysm and aphasia that have profoundly effected your life.

Since June was aphasia awareness month and I haven't seen anything to make people more aware of it I tried to "interview " Andie about what it's like. Well, that wasn't too brilliant on my part since an interview requires communication and that's... uh... the major problem, so I felt it was another source of frustration for her to think about the details of it and again hard to relay her thoughts so I didn't push it too much. What I've written here are just my observations.
Her description of aphasia included being frustrated by not finding important words and not remembering names at times- It seems to me like her short term memory has been effected the most. Reading is difficult since deciphering the words takes so much effort that the ideas are lost by the time she reads to the end of a paragraph. But we went to Friday's not long ago and she could still remember the usual order of a regular customer we saw that day.

Truthfully, I can't even begin to imagine what things are like for her now since her normal intelligence is still there but the ability to communicate is so limited. Though I think the rest of us might get a glimpse of what it's like at times a word is on the tip of your tongue or a name won't come to you but then most people can just come up with synonyms to describe things, it's much harder for her to just convey the most basic ideas for her so then the thoughts are just stuck inside her head.
There are times when she's rested and relaxed that she can talk like she used to but when she's tired or feeling pressured it gets harder. The healing process of her brain combined with the meds she's still on for things like preventing seizures make her tire easily. I spoke with Andie this morning and she and my mom had been out for a walk plus she had therapy yesterday so she said she felt tired and said she "couldn't even babble" today. She's anxious for some improvement and frustrated by all the changes that have been forced upon her by no fault of her own.
The doctors did say that she'll continue to improve over time and she still has speech therapy that includes homework every day. One of the articles we read did say that sometimes a leap forward can be preceded by a lapse in something so maybe she's about to have a breakthrough of some sort.

Our power's back on!!

We have power but since we've grown accustomed to going without Josh and I are going to be tent - camping in the back yard tonight. This was a last minute idea on my part - maybe not the best idea since it's going to be sweltering out there but he's thrilled.... the stuff memories (and afternoon, inside naps) are made of...

Jonathan Wood raptor project

http://www.raptorproject.com/

This guy was great at Josh's school last week. One of our neighbors got to hand feed the Bald Eagle and when Josh went up to the guy to say thanks afterward he was given a poster of the same eagle for his classroom.

I had to talk Josh into going and much of the commentary was geared toward the adults (right - left wing jokes and spoofing late night TV commercials...) but the whole thing was very entertaining and educational as well.

If you have a chance to see this - go!

Challenging patient

While we were at Good Shepherd this afternoon Andie and I ran into Sam Miranda, the Chief Nursing Officer. He knew Andie from one of the restaurants she ran and had been in to see her six times while she was inthe Rehab Hospital - she only remembered one of those times. While he visited it was early in her recovery so Andie was explaining to him that she had strange dreams and that she doesn't even know what she said to anyone or how she was acting and he mentioned that she had indeed been a "challenging" patient. When he visited she knew that someone was with Mr. Miranda but couldn't remember who it was. He told her it was Sally Gammon, the President and CEO of Good Shepherd. He could see that we were on our way to the 4th floor to see her former nurses and to see if her former roommate was still there. Roommate was gone, good for her, the nurses seemed thrilled to see her and happy with her progress. The case manager said she'd had a case review with the insurance company just yesterday and even the insurance rep was amazed at the amount of progress she's made in such a short time.

While we were at speech therapy she was supposed to be coming up with sentences when asked about a situation in most cases she did well but there were some funny ones. When asked why we keep wild animals in cages she said "So we don't bite them". When asked about why kids need new shoes every year she said " because they're growing their feet" she did correct herself once she had time to think about what she'd just said.

Owl Walk at Marsh Creek

Dima and I had the chance to go with his second grade class to Marsh Creek Park to do an Owl Walk. The ranger who gave the presentation first then led us out on the trail was great with the kids and interesting. With 25 kids plus their parents traipsing over a rocky path I thought it would impossible to hear or see anything let alone an owl especially when one guy's phone rang as the ranger was playing a cd with a screech owl call on it to call one over to us... well next thing you know we saw one fly over to a tree above us and it called back to the cd - all the kids were told not to talk but to point instead and they did a good job of quietly pointing to where the owl was. Then it flew above us again and perched further into the woods. When it first flew over Dima was pressed up against me and a little freaked out. It was cool to see the owl and th ekids were disappointed that we didn't stay too long, but we were told that it could have young in the area and could be trying to defend them and we didn't want to harass them too long.

Andie admits now that once in a while she has "breakthroughs" that she agrees with me that driving is not a good idea for her to try anytime soon. She took a sample written driver's test and could pass that but the physical driving and reading of signs is not something that would be safe right now. Our dad works the polls each election day so I'm in Whitehall today sister - sitting. We cancelled her bus to therapy this afternoon and I'll take her over to Good Shepherd so I can see how things are going there. She's has a few different speech therapists and they've helped her out by giving her home work right now she's working on reading comprehension but that's coming along very slowly.

Yesterday she asked me to look up aphasia.org and she read some of their online stuff but got tired and confused so then I read some of it for her. She was slightly discouraged when it said that if there hasn't been major improvement in the first few months there will not be a full recovery. We talked about it a while and she's ready to be better but in reality she's been through a life- changing event and things will be different in ways that are hard to predict.

Right now we're sitting here and she's going on and on about selling snacks at flea markets and she wants to start researching where to get stuff and where to sell it. My point is that if she can't really communicate and can't count change she might need to focus on another job first and then move on to something like this later.
I asked her what to say on here and she said "Goodbye"!!

Driving?

Andie's all excited about driving in the near future but I really don't see that happening any time soon. She insists that they tested her reflexes at rehab and they think she's on her way to being able to drive. Now, I'm getting this from her and communication is still a big issue for her so I'm not so sure of exactly what they said to her but I had to burst her bubble and tell her that it probably wouldn't be any time soon. So then she said, okay maybe two months... I really really don't think so, but then again I was just thinking that we'd just passed the 29th of April which was three months since her surgery and the improvement has been remarkable so she may prove me wrong.
My parents did set her up with the blog to read since she said she wanted to know what I wrote but she still can't follow the print either on the computer screen or on a printed page so she gave up on that. My point to her was that if she can't read how's she going to drive? Can't read street signs? can't read directions? Her short- term memory is lacking too - so much so that when she gets to the end of a line she can't remember what she read at the beginning of the same line. And the process of decyphering the words is so hard for her that she just doesn't get the meaning.
We spent some time yesterday over at Friday's visiting the people she used to work with and she wanted to wait for some regular customers that she hoped would come in and she saw one man she knew and he was saying that they were all very concerned about her when she was in the hospital and all that.
She's also getting back into some "normal" things that most people take forgranted - she's got an appointment on Tuesday to have her hair done at the salon she usually goes to and the stylist she sees volunteered to come in early for her so she can get done in time to get out for her therapies at Good Shepherd. Next week is the last week for Physical Therapy aince she's doing well with that. She'll still have Occupational and Speech Therapies but she's good with the walking.
She moves slowly so yesterday and the evening before when we went on the IRT walking trail I loaded a geocache into my GPS and hustled ahead to get that while she walked behind me then she turned around and I had to catch up to her before we got back to the parking area. She insists that she doesn't need the cane but I think it's still to her benefit to have it as a warning to others not even for her to use. There were a few times that bikes speeding up behind us and she is still slow to move so the cane would - hopefully - have people be more cautious and sympathetic than if she didn't have it along.

He's Bweeding!!!

For those of you in the neighborhood who might have heard Josh yelling yesterday... The story goes like this: the kids were riding their bikes on our driveway - walk way and back porch when Dima literally bit the pavement - helmet on head didn't do much when his chin went down before the rest of him and he bit through his lip and slightly chipped a front - and permanent - tooth... before he could get up Josh was hollering HE'S BWEEDING!!! ... so Dima spent some time sitting around with his ice pack while dinner was being prepared and he seemed okay while we ate. Today he mentioned that the tooth feels loose so we'll keep an eye on it over the next few days. Maybe the hockey helmets with cages should be used for more than hockey... but how's the visibility with those things on? What are you gonna do... bubble wrap them??

Andie's cane

At therapy on Tuesday Andie graduated to a cane. They let her keep the walker for crowded situations where she could be jostled by other people but officially she's allowed to use the cane for most places. She had a follow up appointment with the physician at Good Shepherd on Tuesday and her meds were tweaked a bit so she needs to see how that goes but in general she's moving right along - literally.
Now she's to the point where she needs to get on waiting lists for apartments where she can have some access to help if needed but still be free to come and go on her own. Well, via the Lanta bus system for now. If anyone has ideas about that sort of place in the Allentown area please let me know - I'm probably going to make a trip up there next week to help get some applications submitted and we have some in mind but are open to suggestions.

Teeny?

Josh, Dima and I were riding bikes yesterday afternoon when one of the ladies who works in the office at Josh's school stopped in to visit our neighbor and said hello to Josh. His " job" for this week has been to take an envelope down to the office with another kid so as she was leaving he said something like "see you tomorrow" and she said "Ok, see ya Sweetie" Then Josh goes - "don't call me that" and I asked what he thought she called him - he said Teeny. So I explained that she said Sweetie and it's a compliment cause she thinks he's sweet. I had no idea that being called Teeny was offensive.

monthly aphasia meeting

Last week my parents and Andie went to a meeting of people who have had or are still effected by aphasia that's held monthly at Good Shepherd. I'm not trying to be mean when I say this but when I think of a meeting of a bunch of people who can't communicate it sounds like a plot for a sit-com episode.
Anyway, apparently most of the people that were there were alot worse off than Andie is; comparatively, she's communicating pretty well compared to what things could be like. There was one guy at the meeting that has to use a box to touch pictures to say what he wants to say. They also had a speaker come in who had a stroke four years ago and can now speak well but it took him some time to get his brain re-wired to get the words out. As far as Andie, she's getting around pretty well physically and she can talk but it sometimes takes a while to get out the words that are in her head. She does stick with trying to say but also gets frustrated when the wrong thing comes out. She's aware that by taking so long and stumbling over words that she looks like she's not smart but her intelligence is still in tact, just not the verbalization.
We went to Mechaniscburg on Saturday to go to lunch with our aunt and then visit an uncle in the hospital there and it was strange to be walking into another hospital and thinking about all the families and friends behind all of those patients lying there who are now going through what we just did. Even then Andie didn't want to use her walker but I think she should since some walking surfaces can be uneven.
These days she's still going to out-patient therapy at Good Shepherd two days a week for Speech, Physical and Occupational therapies and once she's done with those she's pretty tired. She does take the bus over to Good Shepherd and that can be frustrating to work with their schedule but at least she can do it herself. She's still within the six month period where they expect lots of improvement before she'll reach a plateau where she's gotten about as good as things will be. The meds she's on and the fact that she's still in recovery from the brain injury make her tired pretty quickly. So on non-therapy days she just takes it easy.

"This was hell!"

This morning I drove up to Whitehall to take Andie to out-patient rehab, am back in Chester county now; we had a very nice day together. I called to let her know I was almost there as I got close and she asked if we could stop in at the salon where she usually gets her hair done to schedule an appointment. We had time to spare so we went over and one of the girls there also had Dr. Li as her neurosurgeon - more and more we meet people who think this guy is great. Andie really lucked out that he happened to be the one on call while she was in her hour of need. She met him - for the first time that she remembers... this past Monday during a post - op appointment. Today she was trying to describe meeting him and for lack of words she uses a lot of gestures so for him indicated bowing down!!
We made our way to the Good Shepherd Brain Trauma unit and even though it was lunch time we got to see some of her therapists and her old room mate who is still there recovering from a stroke. First we saw the case worker who was a huge help through the days spent there and with getting things set up for her to go to our parents' house while still getting the outpatient therapy. The physical therapists came to see Andie in the dining room where her room mate was eating and then the nurse who she most wanted to see was in her old room with a patient and we waited for her to finish so we could talk to her. The staff seemed happy to see that she's doing so well while Andie tried to describe how she looks over at their windows while she's in the out patient building.
While Andie did her OT today she wanted me to feel free to go back to a store I talked about on our way so I did - she likes a certain hair care smoothing balm that I'm on a quest for now - and so I missed most of OT. Once I got there she was going into Speech Therapy and laughingly telling the therapist "This was hell" - about having to do her homework. She's still overcoming the aphasia and it makes it tough for her to get her thoughts together. The assignment was to complete sentences like "I wish..." or to name parts of a car or tools and things like that. Well, I didn't realize it but the earlier therapists got me in the habit of giving her word choices which makes the thought process easier but if the question is open ended she's still got the thoughts in her mind but can't really get them sorted and get them out of her mouth.
Even names... she said today that she just calls everyone Lyn - works for me... but she's still got a lot to overcome communication - wise. If you see her out and about - the key right now is to just be patient and listen and watch the gestures while thinking about context. I've gotten pretty good at figuring out what she means; she does look to me like I'm her translator when I'm with her and as much as I'd like to I don't always know what she wants to say so then she gets frustrated and there are also times that I do know what she's getting at and I just let her take a minute and try to get the thoughts together. The point of the therapies is to get her brain to re-wire itself around the problem area.
After Speech she had PT and seems motivated to to well there. She's looking forward to getting rid of her walker but I think it might be a good idea to use it out in public. If someone bumps into her in a store while she doesn't have the walker to hold onto could be a bad situation. Plus, if she has the walker people will realize why she's moving slowly and might be inclined to give her more space.
Since I'm not up in Allentown so often and to not fill everyone's in-boxes I'm doing the updates less frequently now. Andie's also kind of in a holding pattern now while she's doing the current therapies. If any of you want to contribute to this blog send me an email with your okay to make the info public and I can cut and paste to give you an entry as a guest - blogger.

For the Friday's crew: Andie was really touched by your thoughtfulness - I've been reminded again and again what great family and friends we have through all of this.

Thanks to all of you for your support.

Macy's flower show

If you'd have told me I'd be driving into Philadelphia to do to a DEPARTMENT STORE about a week ago I'd have thought you were crazy. Okay, I must be the crazy one cause that's exactly what I did. I heard a commercial for the Macy's Flower Show including a hot air balloon on display loaded with flowers and since that includes two of Dima's favorite things - he loves, loves, loves hot air balloons (we see them regularly from our house in the summer) and he loves flowers, and well, natural stuff. So... on Sunday we did indeed make the trek to Macy's. We got there and looked around and it was nice but he was like -"uh...is this IT?". Yup, that was it - The hot air balloon and flower displays on the downstairs sales floor and some stuff strung up in the air and some displays elsewhere in the store. We went up to higher levels and from there we looked down at the stuff and saw the organist playing. We were there early enough that we got to go on the first "tour" of the day where they take you from the "Wanamaker eagle" to go to the various displays and they point out the types of flowers used and what they were supposed to represent. He did listen and I asked him later on if he remembered any new types of flowers that he'd like to try to grow and of course he didn't. I'd loaded some geocaches into my GPS so to have something more to do we walked to the area of a cache and as we wandered around we sound it. It was one of those hidden - in plain- sight ones that lots of people must pass every day but have no idea it's there. We also stopped at a little place for pizza, went back through Macy's for one last look and then headed home.
At the end of the day I asked what the best thing about his day was and he said " I like caching!" Great, we could have done that practically in our back yard!

http://www.geocaching.com/

Andie

Andie's now off the waiting list for out-patient speech therapy so she had three hours of therapies at Good Shepherd rehab on Tuesday and that should continue on Tuesdays and Thursdays from now on. She takes the handicapped equipped bus to get there since she doesn't want to intrude too much on my parent's lives. The problem with the bus is that you have to go when and where you're told. I think we really lucked out last week when I went with her since we were the only people on the am bus and then we were also the first stop on the bus coming home. They sometimes have other patients that need to get places and then you have to be prepared to sit on the bus and wait til you get to your destination. They told us from the first day there that she should be prepared with a protein bar so she's prepared. It's just the way those things work.
This coming Monday she's got an appointment for a follow up with the surgeon whose skills saved her life back in January. She doesn't remember him and doesn't remember much about being in the hospital at all.
She does remember being visited by our relatives in he first week or so that she was in rehab which is interesting since she doesn't remember her own behavior around that time. She doesn't remember being adamant about not wanting to go the "therapy gym" once she figured out we were going there, or not wanting to do anything but sit in her room, or about trying to get out of bed the one morning while she was supposed to be only in the wheelchair to move around and getting really mad at the aide who was with her at the time for trying to keep her from getting up.
She's also got an appointment next Monday with the family doctor to review her overall health and her bloodwork. She's on nine different meds and supplements right now (taken at different times through the day) and I'm wondering if some of those can be reduced now that she's obviously getting better.

Improvement

Dima and I spent some time today at Andie's getting the final things out of her old place and doing a final wipe down of counters. Now that's all done and she and my parents won't have that to devote their evenings to and they can settle into a routine around here.

Andie noticed while we were out at dinner that her right hand is closing / clenching better than it had been lately. She also seems like she's not over thinking her choices of words and they're flowing better now too. She still mixes up words and you have to listen to figure out what she means but if she takes her time and you listen with some patience you can help her got it out.
Things are looking better - she said that the case manager that interviewed us last week came to her yesterday and said that she thought she already saw some improvement.

99 to 98?

Chris took Josh along to Dima's hockey practice and to keep him occupied they put him in the score keeper's booth and let him run the timer during the game. While he was in there he was goofing around with the rest of the controls and at one point the score on the board read 99 to 98 and later on while the kids were playing he pressed the buzzer button and all the kids on the ice stopped then once the coaches saw what happened they were like "keep playing, keep playing!"
Dima did score a goal against some pretty good players. I think that his new flip-the-puck technique might have something to do with the extra practice he's getting during the almost continual game of hockey that gets started after school in our driveway and at times includes a bunch of kids from the neighborhood. Josh befriended some of the older girls (imagine that !) on the school bus and he's got them coming over when they have time on school nights.

Yesterday Josh got to go to Grandview Raceway to see some dirt racing - not official I guess these guys just get their cars out after working on them over the winter and run them to see how they're doing. The best part about his day was when a tire flew off a car as it went around a turn.

While they were at the racetrack Dima and I got out to Marsh Creek State Park to go find some newly placed geocaches there. We found some cool stuff while exploring the side of the park that we don't normally go to. Each cache we got to I hung back once we got to the area and then Dima was the one who actually uncovered the cache. He was proud of himself for finding them and I must say that he did a good job of sticking it out for the several miles of hiking. At one point we walked across a narrow boardwalk like thing and he thought that was cool and one of the highlights of his day was getting his shoe stuck in the mud while crossing a small stream.... as in shoe stays, foot keeps going... luckily he was smart enough to jump on one foot til he could sit down while I retrieved his shoe! Nice day for a hike and we got 4 caches along the way.

Andie's out-patient days

Thursday morning Andie and I rode on the handicapped - equipped bus that picks people up to go to therapies at Good Shepherd. Once we got the the neurotherapy section of the building we realized that the building was one that we looked out at from Andie's in-patient days. We could see her old window and she was trying to describe that to the nurse and case manager who were doing her intake interview and she said "they just let me out of that nuthouse!" They told us that they've had patients from the other building - once they start coming to - try to hold pillows with messages written on them up at the windows and some write messages on the back of their daily menus to try to let someone know that they're locked in over there... Funny and tragic at the same time.

During the intake interview we joked around about different things like some of the things Andie did when she first got to Good Shepherd and she seems amazed that she doesn't remember most of that. The case manager explained that not remembering that stuff is the brain's self defense mechanism and that it's hard but she's been through a life-changing event and things WILL be different from what they were before the brain surgery.

After their evaluations the physical therapist said if Andie sticks with her homework exercises three times a day she should be done with at least her part in four to six weeks! At times it's been hard for me to believe what people have told me during this whole thing - She'll come out of the coma, she'll get out of the wheelchair once they get her moving in therapy, she'll be able to go live at my parents' house, but time and time again she's done as predicted. Is that disbelief on my part my defense mechanism so I don't get my hopes up too high and get disappointed if it doesn't happen?

Since she's unable to negotiate the steps to get into the place she was renting her stuff has mostly been moved out, furniture will go today and then Wednesday should be the last day there. She'd been renting there for something like 15 years so I asked her how it feels to be leaving there and she was noting that she has no more stuff, she has no money(she carries a little purse around and noted at outpatient rehab that she has none in there) , she has no job and she has no "people" I'm not sure exactly what that meant - but that she realizes that things are different and that they have to be until she works to get back physically and til her brain heals enough to have things become clear for her mentally. With the anemia being better she does seem to have motivation but the trauma of the whole thing plus the list of meds that she's still on plus the fact that just re-learning basic skills makes her tired but I think she does have a new attitude and will hopefully continue to lose weight and keep moving once she's on her own.

"This is the best, this is the best - so delicious!" Andie was saying as she settled into the real bed here last night after so much time in hospital beds it's great to be home.

"Are you people nuts? I wanna go to Friday's!"

Andie's here helping to do dishes and Mom had her using a sponge to squeeze water from one side of the sink to the other to exercize her right hand (at the suggestion of one of the therapists) and Andie was joking around about how easy she had it while lying around in rehab and just as I sat down to type this she was going "Are you people nuts? I wanna go to Friday's !". She's free from rehab and happy about it but getting tired, which is understandable and she's still so excited that communication is really minced up right now.
When I got there she was having breakfast with her roommate and chatting up a storm we had to hang out a while till the final checks and details were taken care of and then we went around giving hugs and saying goodbye to everyone. She has an appointment with that doc to be checked again next month and so we'll definitely be back there soon. In the mean time we had to round up her meds and appts with regular doc for basic check up and blood work. Thursday starts her out-patient therapies at Good Shepherd. Same place, different building and different therapists. I'll tag along for that since she's apprehensive about it and about communicating what they need so I'll follow along with my little notebook that I've held onto all over these past few weeks.
She seems really happy to be here and though it's an adjustment for everyone I don't think it'll have a huge impact on my parent's lives and once she's ready to be independent she can get her own place again.
Wow, I think I'm tired too!

ready to launch....

Looks like all systems are go for a release from Good Shepherd tomorrow morning.

Watch out Allentown, she'll be prancing out to the parking lot - well, okay as much as one can prance... while using a walker....

Blood work was done bright and early this morning and she was in good spirits all day today still dealing with the communication difficulties so when you see her out and about she might not remember your name - she's only remembered the names of a select few of the therapists and nurses that she's seen every day for the past five weeks. When I'm there she looks at me as if I can read her mind to translate but sometimes I'm just waiting it out, giving her time to think and to find words to describe whatever it is she's trying to get across.
Today while a friend of hers was there she described "margarita" with barely a word, but also realizes that she can't have them anymore. She's being diligent about her diet and good about stopping when she's full, being aware of the diabetes plus she's been talking about going walking each day.
If you're up for a walk, let us know and come on down when you want to stroll around the block or on the Ironton Rail Trail here in Hokey. If she has a therapy day she'll probably be tired so we can work around those. I think she'll be building up her endurance so have patience and be aware of what's coming up cause she sometimes needs reminders to be sure that things are done safely.
She's come so far I was talking about taking pictures when she's leaving tomorrow and she made it seem like it's no big deal. NO BIG DEAL??? Do you realize that you came in here on a bed with no movement in your right side and are now set to walk out the front door?
Trying to thank the therapists for all they've done is beyond words - I can't even imagine all the lives that they've touched. I don't think I'll be able to say much without getting choked up. We'll have to go back once Andie's able to bake them a cheesecake and take it in there.

Tomorrow's the first day of the rest of her life.

movin' out...

Moving is tough enough when you have to deal with your own stuff but trying to go through Andie's stuff and trying to decipher from her what exactly she wants to keep / donate / gift to people really complicates this whole thing. We've got til the end of this month to deal with it all. There's a possibility that we can donate stuff to a client of one of the women I met last week at the Center for Independent Living in Allentown but I haven't heard from her since I left her a message listing the stuff available on Friday. If anyone wants some free furniture let me know - especially if you can help move the stuff - I can tell you what we've got.
There's also some stained glass - making supplies I'm thinking the Baum school of Art in Allentown might be interested and should call them. If anyone wants that sort of stuff let me know. .. uh... soon please.
Andie's continually amusing the staff over at Good Shepherd we sat there talking with one the aides about some of the stuff that went on early in Andie's stay there that she really doesn't remember - she definitely feels sorry for some of the things she did. I assured her that she just wasn't herself and that the aides there know that.
We were told last week that Andie would probably need a cane when leaving rehab and I was trying to be pro-active and had my mom get one from the stash of donated stuff at church then were told that the walker would still be needed for the immediate future. I think Andie's still afraid of falling so the stability of the walker will be a good thing especially while going out into the world where there are so many little obstacles that you don't even thing about until you have to deal with details like this.
Right now things are still on track for Andie to leave GS Tuesday and go to our Mom and Dad's place - pending blood tests and final evaluations tomorrow....

... and so is the stomach tube, Whew!

I got to Andie's room this morning just as they were prepping her for the stomach tube to be removed - ... hung back by the door , and heard the little "pop" saw the balloon that had just come out and it was done. No big deal - they asked her if she felt okay, any nausea, any pain - she was kind of wincing... but refused Tylenol, any vomiting?
Well I could have answered that... uh, I didn't see anything moving in the wrong direction... I guess they have to go over their own checklist... after she had a few minutes to lie down off we went and she had her breakfast. Her day was uneventful and since there have been no issues at all with the trach tube or stomach tube so it looks like she's a go for a Tuesday release Good Shepherd Rehabilitation Hospital's 4th floor brain trauma unit.
The after - release details are still being worked out.

Trach tube is out!!

Andie just called here at my parents' house to say that the trach tube is out! She sounded fine - and like she's a bit flustered but speaking well and she indicated that it was really no big deal when it came out. Next is the stomach tube which should be out by the time I drive in there this morning.
Moving right along... there's an open house at an apartment facility that's in our old elementary school - I'm going to check it out today at noon and try to get her on their list for an opening - I think it would be great to have her right here in Hockey once she's ready to live on her own again.
Headed into Good Shepherd right now.

She's the man!!

What a roller coaster day! Chris compares his job hunt to a roller coaster- you get your hopes built up and then then something happens and down you go! Andie had that kind of day.
Started out with her being all chipper while we met her at the ENT's office to check out her trach tube ... and from what we understood, have it removed if everything was fine... So we got to the "ghetto" as Andie later called it - it was a strange, maybe I should say interesting ... location - in a former train station on the south side of Bethlehem. After intake procedures and just general hurry - up - and - wait to get to the doc he informs us that since the initial tracheotomy was done elsewhere she should return there to have the tube taken out. Whaaat???? He was talking about the procedure being done in an "acute care" facility in case there were complications and so she could be monitored for 24-48 hours. My idea to persuade him that she'd be properly cared for was that she could go back on the one -to -one care immediately after we returned to Good Shepherd to cover any emergency situations. He was insistant that she should be admitted to a hospital... and Andie got less talkative as she realized that she was not going to have it done there. The respiratory therapist that accompanied her to the appointment was a great companion for this - interesting guy - a former EMT, former deputy coroner (after asking about that experience let me tell you -- always -- always wear your seat belts, people!!) and a body guard on top of that he's a got black belt... but as entertaining as he was it still didn't take away the disappointment that Andie felt. I could see that she was stunned and so was I but being strong for her meant looking forward to doing things the right way and making sure every step was covered so there'd be no setbacks. I was working my brain to try to figure out how to get around it but this guy was willing to do a visual scan of her vocal chords to be sure that there were no issues there and that's a crucial step to getting the tube out, so okay get that done and see if he'll proceed.
They squirted topical spray up her nose and in her throat and we waited to have it take effect while they saw another patient.
One of the therapists just today asked what I'm writing when I carry around my little notebook - mostly I have it cause this all seems like a dream and some day we can all - including Andie sit back and read it. Well, today when the doc asked about the trach tube I was able to put the notes to use as I went back and gave him every bit of info he asked for. Plus I write down the day to day ups and downs and then I use them to remind me of things to put here in the blog.

So... bottom line from this appointment was that Andie was disappointed - not devastated that the tube wasn't out... she was quiet and asked that people NOT come to visit later on and I asked if I should be there for her speech therapy and she said something like "if she wants to" so... I went.
Then the report from the ENT got to Good Shepherd and the team of people treating her met. After we went into Recreational Therapy in a not so up-beat mood... and then she had to go into Speech Therapy while still feeling like the anesthetic was working on her mouth...

Just as we got back to the 4th floor brain trauma unit the nurse practitioner, Jamie (a woman) who has been working alongside the physician met us and broke the news that since things look good and since they have the ability to handle emergency situations she will have the trach tube and the feeding tube removed tomorrow morning!! At that point Andie was like --- Whaa?? Whaattt? .. she then told her that that she loves her and after we got the details about how tomorrow's going to go and then as we were going to hang out in the dining area Andie was going: " She's the man! - she's the man" While Jamie's going " I might have to go check about that!".

What a difference a month makes!

Feb. 17, 2010
Then: essentially she was lying in her hospital bed to be transported with some signs of awareness, but not much more.

March 17, 2010
Two friends stopped by after Andie and I had dinner together and were just about to settle into her room for some TV. We started out in Andie's room and moved to the dining area on her floor since her room mate was trying to sleep. We spent time discussing - and cracking jokes about lots of different things and Andie was a significant contributor to the conversation, mostly with us trying to figure out exactly what she meant but still she didn't give up on trying to make US understand. There several times that she'd get stuck on a word or name and look at me like I'm in her mind too and should interpret or translate in some way. Then look at me like I'm crazy cause I don't get it...

The company was a good thing for her since she didn't know they were coming ahead of time and couldn't think too much about how she looks and she spent the evening laughing instead of watching TV. She's able to hold a conversation if you're willing to give her time to form the words with her mouth that are inside her head. If you've been thinking about visiting - now's the time to go - evenings seem best since the therapies are done by then.

Tomorrow she's got an appointment with an ENT in Bethlehem to check out and hopefully take out the trach tube. Once that and the feeding tube are out it only a matter of a few days til she'll be on to her next phase : more therapies but at a different location - once she's established in the new place and new therapy schedule we'll arrange for visits to Friday's and other familiar places to bring back a sense of normalcy.

Wow - just last month a part of me never would have imagined or dared to hope that things would be going so well!

Paula Deen / Andie's email

Since reading is one of Andie's strong suits I've created this email address for her and we can help her get the messages.

andriad013@gmail.com

My parents can print them out and read them with her or I've shown her some pictures and emails and read them with her on the computer in the 4th floor dining room. She's still shy about going online herself but she knows there's a computer that she can use at Good Shepherd once she gets more confident with it.

She's still out there communication-wise. A few quotes from today:
"I'm stupid, but I'm not dumb. "
During our laughing, questioning, explaining morning, addressed to me: " I'm gonna kick your royal rump!"
Her happiness this morning was obvious when I brought in her recipes that she'd been compiling for a recipe book after much explanation of where to find them.... i.e. her life's work...
"LOOK AT THESE BABIES!!!" while leafing through her notes.

http://www.pauladeen.com/

We saw a blurb about a promotion with Philadelphia Cream Cheese on Paula's website yesterday while I goofed around online and read stuff to her. After she saw the ad she got so excited that she had to remind herself to stop and think so she could try to talk.

Whatever it is, the promotion doesn't start until March 22. She wanted to send her recipe ASAP and she was like, "fine.. I'll just give it to MOM!" Well, Mom wasn't there at the time so to appease Andie we sat down and I typed it up word for word ( including since the words wouldn't come out Andie drawing a picture of a strawberry to tell me about a recipe!) and sent it on an email to myself and will get it out to Paula as soon as the thing launches.

In the mean time I saw on pauladeen.com that she'll be doing something at QVC next week -

If anyone out there has any connection with her people or the QVC people I'd LOVE to spring Andie out of there for a day to go shake her hand on the way into the studio, through the airport or whatever...

It would be something for her to look forward to and I'd love to surprise her with something like that. At this point I'm wondering if an email to her staff would help get her schedule and maybe arrange an encounter of some sort. I really don't know much about Paula Deen but I saw her on Craig Ferguson just last week. Since I TIVO his show and watch it when kids are not around I didn't get it live but if I had I'd have called the nurses at G.S. to turn it on for Andie to watch. On the Craig show Paula Deen licked the stick of butter that she'd just used to grease a pan - now there's something I can relate to - butter, butter, butter! Was gonna say she's a girl after my own heart ... but that might be too true! I know, I know - not healthy but it is tasty!
Another option would be if someone wants to take Andie's recipe for banana split cheesecake and help me get it baked and then present it to Paula - If you have this sort of thing in you - let me know - I'm so NOT a baker and it would make for good comedy but I don't think I'd get the cash prize for baking!

Mom and I got to Good Shepherd this morning to find Andie sitting up in bed, swinging her leg around as in - where have you been??? She relayed that she was up early and looking around for us and as we were on the way in she called Dad to ask for something. Once we got there and after much patience, laughing and "Oh, never mind ... -oh, geeze! " on her part I figured out that she was happy that I took some of her hair rollers in and now wanted hairspray - Eureka! She said It looked "bee-ut-i-ful" and now look at it!!

Sample quotes: "Duh!... Some I do good and some I ...duh!" ... along with very animated facial expressions, another one - " doodle! - .... who the heck is doodle?" " these are lackin' - NEVER MIND!".

Mostly converation is her trying to say something and other words come out then we laugh and I try to guess at the point of what she's saying and somethings we narrow down and sometimes she just gives up. I try to have patience and give her time to think but it's tough to just sit there and not put words out there for her and IF we get the gist of what she wants to say it can take quite a while.

Mom and I spent time sitting with her out in the entryway to her ward - just a change of scenery from her room then we moved into the rec therapy room and goofed around with the air hockey table then literally sat there for over an hour while Andie tried and tried to get her point across about something where: you win something... ? she drew a rectangle and numbers in the corners...? she wrote out the worn BUNNIE ? she mentioned the letter T ? she mentioned something starting with a W and I got stuck on Wendie's - nope - not it... she mentioned Union Blvd... still ???... I really have to give her credit for sticking with this one and not giving up. We FINALLY figured out that when we were going over the calendar and she saw that Dad's birthday is coming up she wanted us to take a coupon that she had from Ruby Tuesday's (I guess it's on Union Blvd, near Wegmans and there's a bunny on the back of the coupon) and give it to Dad since she can't do something for him herself. WHEW from all of us!

Even though she had only one hour of OT today I think it was a very productive hour. She ended up across the therapy table from a woman who had fallen and has a brain injury on the right side. She's very articulate and was a nurse - she was saying things about how she feels at times , like people think she's stupid, or she's sad or thinking why me... and then telling us that her family mentioned a book and / or a T- shirt that says "I've had brain surgery - what's your problem?" and as she spoke about the emotions she's gone through Andie was saying " I 've had everything".

I think the support group for adult brain injury patients will be a good next step for Andie so she can talk more about this stuff with others who have been through the same sort of thing.

When I first read literature about aphasia I noticed that the one newsletter was called "Let's Talk" - Okay, it's put out by the speech therapists, and that some of these people that can't truly express themselves have a monthly meeting. Oh, the irony.

There's a "cooking club" at Good shepherd where a bunch of the patients get together and make food. Yesterday they made cookies and today three of them worked on making spaghetti and salad and garlic bread. It's a great idea cause it gets them to do all kinds of chopping, standing while cooking and buttering the bread that's therapy even though it doesn't seem like it.

We had a meeting this afternoon with a representative from the county and a case manager who were filling us in on options for her for once she's ready to leave Good Shepherd and while we talked about that stuff Andie was in therapy, then she was finished and came in to see what we were talking about and she then got the gist of what was going on and was really upset when she realized that when she leaves in about two weeks she'll most likely be going to another facility and not directly home. She was deeply disappointed by that and kind of moped around until we got her talking again after dinner. This is a situation where tough love is going to be best for her. I can imagine that she feels trapped in that locked brain trauma ward and to some extent trapped in her own mind by the lack of ability to communicate with us, that's bad enough but now to be told that she won't even be independent like she used to be has to be like a nightmare. It would be nice if she could come to my parents house but here she'd only get therapy two or three times a week but at a facility she'd get it every day like she does now. We've been told that the first 3- 6 months will be the time of greatest improvement and to keep her moving during that time will better her chances of a full recovery. If she were here I think she'd be more likely to lose motivation and slack off. It's easier to say no - and shut up! to us than to the therapists.

After lunch this afternoon while Dad and I were telling Andie about all that's gone on since her surgery. She was looking at a calendar that we'd taken in to refresh and work on some short term memory and she couldn't believe that so much time had passed since she knew what was going on. She doesn't remember her hospital stay at all - no surprise there and I think she's just becoming aware of what's going on. I asked her if she remembered the helicopters coming and going at LVHC and she - for a moment - thought I meant she had been brought in on one. At this point we could tell her anything and she'd believe it wat the truth. Hmmm....

Her communication has become more like disjointed phrases instead of random words and she gets frustrated with herself cause she seems to know what she wants to say and then stuff just comes out then she laughs and I usually laugh too while trying to figure out what she's talking about. Luckily she's pretty good humored about it and just kind of shrugs it off once she tries a few times to tell us something and can't get the point across. I'm glad we can laugh with her in those cases and she doesn't think we're laughing at her. She has been somewhat paranoid about being talked about.
Still, when she's not over- thinking of what she's trying to say she can get real thoughts out. She told me to shut up and once we went back and forth and she said "shut up first" after we'd said it to each other a few times while we were joking around. I brought her a hard sided glasses case and was trying to get her to say"off the face, in the case" like Josh's eye doctor taught him and she just said"Okay, MOMMIE!"
As we went over the time since her surgery and how fortunate she is to have had such great medical care. At one point she incredulously said to my Dad and I "I almost died, I coulda died and I wouldn't even have known it!"

Life goes on...

While trying to bring Andie up to date on current events my parents were quizzing her yesterday. When asked who the president is she said "Obrak, and He's not respectable!" Sometimes she comes out with sentences and phrases that have meaning but most times she just mixes her words all over the place. She is set to get the trach tube taken out next Thursday morning. That should make communication easier for her - easier for her to get the words out and hopefully the words will all start making more sense soon.

In other news: Since the weather's been nice ( in the high 50s) my boys have been able to play outside in the evenings when there's nothing else on their agenda. Josh is on this kick where he wants to be a goalie so he puts on pads and does stretches... and ruined a pair of sneakers by wearing holes in the toes. A few neighborhood girls came by the day before last and played with them in our driveway and then yesterday they waited and waited for them to come back again. At one point Dima came in and asked if we could call them to find out where they were. They didn't come back so the two of them played their own games of hockey until dinnertime.

Josh had a play date yesterday morning while a friend and I caught up on what's going on with each other. We let the kids play upstairs while we talked in their kitchen and other than one interruption to ask permission to have a piece of gum they did well. (Josh spit it back out as soon as the "juice" was out of it.) When we went upstairs to tell them it was time to go they had dressed up - she was in a princess gown and Josh had on a firefighter jacket - it was really cute. Well, I still had to get him back here and give him lunch before school and while he was eating I asked him about what went on while they were playing together. Then as we talked more he told me that they had smooched once on the lips cause they were pretending they were married! Oh, geeze!
Life goes on...

word salad

Things at Good Shepherd are moving right along. Andie's still talking in what a friend of hers called "word salad" what a great description it really fits because the sentences start out with one thing and end with another and there could be a little bit of anything tossed in there. She's still not getting her own birthday correct all the time but knew my dad's birthday today.

Since there's still not much meaningful communication from Andie I'd like to ask that if you do go to visit her get the big calendar in her room and write on it who was there and at what time so we can all refresh and help with rebuilding her short term memory. While you're there also discuss things like significant dates and maybe even things like which therapies she's had that day or which are still to come. There's also a blue "homework" folder from the speech therapy department that we can all use to go over things with her. I left a note book there too for longer notes about visits but don't know what happened to it. If she's struggling with a word you can offer her paper to write it down or sometimes if you remind her to slow down she'll try a different approach to get out what ever she's trying to say.

She is using a walker to get around now as opposed to the wheelchair and they're talking about taking the trach tube out as well. There was talk of her leaving GS in about two weeks, where she'll go after that is still up in the air - there's a meeting planned for this Friday for my parents to talk about that with a case manager.

Got the word from Dad today that Andie's catheter was removed again - hopefully for good this time. Apparently in the effort to communicate that it was removed there was some pantomime involved, then there was some confusion about exactly when it was taken out cause Andie said it was at three - today- but it was only noon when we were talking and it was already out. We have a calendar and lists of days of the week and months for Andie to use to get re-oriented as far as time. The brain injury mixes things up other than just the exchange of meaningful information.
She's getting meals in the dining room three times a day and the aides watch how much everyone eats and record it. If she doesn't get enough calories the old fashioned way they supplement it with some tube feeding. Dima has Ice hockey practice tonight so we're rushing now to get homework done, dinner eaten and then get him dressed. This is Chris's department but I've got to handle it tonight and I dread doing this stuff cause it's like mass confusion once you get into the rink with all the screaming kids, Josh could skate with the big kids but he also likes hanging out upstairs on the bleachers to watch.

Andie, when you read this I hope we can laugh about it, but today when you left a message on Mom and Dad's answering machine it seemed kind of tragic that you know what you want to say and your tone and inflections are there but the words are all over the place. When we got home from church this morning (where Josh thought the communion bread was cheese and grabbed one, "good, I'm hungry"!!! Luckily Gramma brought him something to munch) the answering machine had a message that I should have written down to write it out here but we just thought you were wondering where we were.
While getting breakfast together you called - with the help of the aides - and were so upset that when Dad couldn't get the gist of what you wanted he gave the phone to me. Paper was a word that was used more than once so I asked if you wanted the newspaper... no, a notebook... no, you mentioned two of something there are two calendars in the room..... "OH LYN!!!" Okay, I'll get there as soon as I can - after we have our breakfast.... then we'll figure it out... again something about two of something... paper... that I have... crosswords? No, something I have - your contacts? YES - Eureka!
Tray and twelve are words that are used a lot and for different situations, but still the frustration of not being able to get your point across is obvious.
_____

So, we had breakfast and I got her contacts and solution together and got into Good Shepherd. When we got there She was really, really upset and her glasses were held together by scotch tape. She was in OT at the time and the therapist and aide were both in the room gathering information about what made her so upset that she out and called one of the aides from yesterday a b-i-t-c-h even while knowing she shouldn't and looking in Josh's direction while whispering it. I calmed her a bit by assuring her that I brought the contacts but kept them out of sight since the doctor has to approve anything like that first.
The story is: Andie heard the AIDE yesterday talking about her - well, they do have to give each other updates about what they're getting into and since this AIDE was new to Andie's case she needed the full run-down. I've already noted that when she's talking Andie has this gossipy, head bobbing attitude with vocal inflections and tones about her if she's among people she's comfortable with - is this stuff so ingrained that it's just part of communication even when all else fails ? Anyway...
Well, Andie sensed that she was being TALKED ABOUT yeah, she was! - and got paranoid about that. Then, I'm just going to call this a personality conflict with the AIDE in question cause any time you mentioned the AIDE or events from the Saturday she got visibly upset.
I circulated among the aides and therapists that were there this afternoon and got the real story: It seems like after she felt slighted she would not comply with the normal bathing, changing into PJs schedule that the place tries to maintain. I've seen Andie take her own glasses off when she's ready to sleep and put them down next to her on the bed usually I - or the aides secure them once she puts them down. My guess is that she put them down then rolled on them while sleeping, but - I honestly can't tell what happened to the glasses. My parents are working on getting them fixed.
While trying to figure out how to get her glasses fixed we asked where she bought them she tried to draw a map for Dad but it's hard to know where to go if you have no initial point of reference. At first she seemed to say it was by the Giant then later said it was by the Weis market.
So the doctor came by after Andie was like " Where is he? ... get him moving?" and asked if Andie's ever had a corneal abrasion - and I don't know if she has, but I have and it really hurts - and because of risk of corneal abrasions if she forgets about taking out the contacts or if the nurses / aides can't get them out for her he ruled no contacts. Andie was visibly upset but the doc also explained that it should only be for the short term.
Bottom line was that once a different aide came on duty last night at 11:00 pm she was a no-nonsense type of person who told Andie "you will get washed, and you will get changed so you're not smelly" and she complied, that explains why Andie was trying to tell us that she smells while we were trying to decipher what she was saying this afternoon.
It's got to be tough for Andie to be trapped in her own mind in the sense that she has to really work to make the simplest requests known and also trapped on the 4th floor there at Good Shepherd while we can all walk away.

When Josh and I got to Good Shepherd today we first greeted Poppy and Gramma in the parking garage - best to get the POPPY, MY BEST BUDDY !!! and I VUW MY GRAMMA!!! out of the way before we went inside the building. I'd prepared him for seeing the wheelchairs and walkers and things that go along with rehab and I told him that if he behaved well he'd earn some computer time later. Andie had apparently watched us come across from the parking garage and was waiting for us in the hallway upstairs when we got into the locked brain - trauma ward.
Well, Josh was not quite his normal self - I had warned him not to jump on Andie, and it could have been the thought of losing the computer but he was taken aback when we got close to her. Could have been the wheelchair, could have been the trach tube, even Andie with her limited - staggered words communicated that she thougth he was afraid of her. He was not mean, just standoffish - for him.
Once we settled in to the dining area Josh spent alot of time looking at his MotorTrend magazine - I brought it along to keep him quiet. Gramma and I also played Ispy with him while Andie did her daily session with the Speech therapist. In Speech therapy she's asked about things like how she feels, then they get down to her address, her phone number, our names and things like that to judge her short and long term memories . They test her daily to se how she's progressing - she's still struggling with most of the answers. Whether the issue is receptive or expressive or both it's hard to say. She can communicate but most of what we understand is within the context of what's going on or along with motions to get the point across. A few days ago she was trying to say something and even though the words didn't say it I knew she was wondering where her contacts were. I told her I had them at Mom and Dad's house and then she was okay with that so I know that's what she meant. Other times I have no idea what the point of what she wants to say is and try to go along with it to get more information but she gets frustrated and stops talking or gets a disgusted look and shrugs and then stops.
I've noticed that when we just kind of hang out - first I saw it with her friend Cindy then later when we just sit around that she gets this gossipy kind of look and tone of voice and even though it's gibberish she's got a whole she -did -this and they -did -that.... interspersed with unrelated words... conversation going on with whoever will listen. At those times I try my best to pay attention and get some clues as to how to respond but it's tough when the conversation is pretty much one sided.
We'll stop in tomorrow after church and brunch so hopefully Josh will connect more with Andie.

Andie had a test today to see how she'd do swallowing and it seems like things are a GO for breakfast tomorrow, then if all goes well with that she can have solid meals. I'm sure she's going to appreciate that since I've been hiding any drinks I've had in there since she made a lunge for one of the aide's Mountain Dew last week. Even if I'd turn my back and have a swig of something she'd smack her lips and go "what are you doing over there?" Good Shepherd has a great set up where we can go to the cafeteria and order our food and have it delivered to the dining room on her floor so we can all eat together.
I asked at GS about taking Josh in for a visit and they are okay with it. Dima's already got a date with Chris's mom to buy an outfit for his first holy communion set for Saturday and a sleep over planned so I'm going to get Josh out for a trip to Allentown. On the way I'll explain to him about what he'll see, the wheel chairs, people doing their physical therapy and all that. Oh yeah, and that he can NOT jump on Andie! With his exuberance he has potential to be a big hit (the therapists are cute, young girls and he LOVES girls) but we will be sensitive to the people who might not appreciate all that noise and energy. My dad's prepared to haul him out of there if my mom and I want to stay around to visit and if Josh is a problem. Josh is already excited about visiting his "best buddy" - Poppy and is disappointed that we can only stay for one night. He was trying to negotiate for four nights.
Dad said that today Andie's cracking herself up at times - I can't wait til she can actually get the words out and we'll all be in on the jokes.

Andie was asleep wht I got to Good Shepherd this morning and when she woke her first sentence was "OH LYN, ... I HATE I HATE THIS... PLACE!" she went back to the rambling , seemingly unrelated words she's been using after that. In speech therapy the therapist was filling in an information sheet about her with Andie's help she was answering things like, where she lives, where she is now, why she's here and the good one was when she was asked about favorite pass times she said "MasterCard" as plain as day!

I spoke more with the doctor about why the catheter was put back in and pointed out that Andie seemed to always go along time before she had to "go". Apparently that's not related to what's happening now, they don't want to risk kidney issues from not expelling as much urine as she should. A nurse practitioner that travels around with the physician explained to Andie (she's still upset about the catheter being put back in and about not being allowed to leave there yet) that it's just back there temporarily and that even though everyone knows that she wants to leave here if she did she'd not get the intensive treatment that she does now and since the most recovery takes place in the first three months THIS is the place to be right now and it's for a relatively short time in the scheme of things.

There are times when she's frustrated and complains and doesn't want to go to therapy but once she gets in there she's usually attentive and tries what they ask. During PT she gets frustrated when trying to use the right arm and sometimes cries.

Two of the physical therapists came into her room this afternoon - they thought it was time for another therapy but were mistaken but as they walked in there was another lucid moment as Andie told them "You two just keep on walking!" and once they confirmed that she did NOT have therapy at that time she was like" GOOD!, see ya!".

NOT a good day

When I got to Good Shepherd this morning Andie was already in Speech therapy so I just sat in the back of the room and watched quietly while they were doing their thing. When they finished andie was weeping and just distraught - I thought over the lack of ability to communicate in speech. We moved on to Recreational Therapy and when we got going there on a SLOW game of Uno and then Connect Four, just kind of goofing around with the checkers. Once we got back to her room I found out about the cause of her misery. Her catheter was removed yesterday and the night did not go well lastnight - they monitor the status of her bladder and since the doctor didn't see what she wanted to last night she told Andie that the catheter would have to be put back in for two weeks.

Well, apparently that statement was what got her so upset but I'm not sure which part - that the tube was going back in or that she realized that she's going to be there for at least two more weeks. Actually we've been told it'll be more like 3 or 4 weeks. I was going by a she didn't ask - I didn't tell policy but today she also sat in on the meeting we had with the social worker and heard the truth and she's got to have a pretty good comprehension of what's going on since she got teary when that was mentioned. The wonderful social worker who's been the intermediary between Good Shepherd doctors / therapists and us has been great. When we were going to meet to discuss Andie's future treatment she invited Andie into the room and pointed out to her again and again that she is so much improved over last week that she's now able to be there for this kind of meeting. That was lost on Andie because she was so wrapped up in not being able to leave the place soon.

Conversation with her is still all over the place - starting a sentence and ending with another thought. Hard to explain but once you listen and watch her you can sometimes get the idea of what she's trying to say even though most of the time it's like listening to some new language.
She is her old expressive self most times and the therapists seem to really get a kick out of her and out of our interactions when Andie just kind of grins at me or when she's bopping her head around in her own conversation makeing all sorts of faces and talking with a gossipy tone.

She had several visitors today and I think it was a good thing so she didn't have to sit around dwelling on the negative things. At the end of the day she was tired and by 5:30 she was ready to get some sleep. I'm not sure how that bodes for rest overnight but hopefully she'll get decent rest so she'll continue to do well in her therapies. I remind her again and again that she needs to save her energy for the times she needs it in therapy, play their games and that's her ticket out of there she has been more attentive and not fighting going into the therapy "gym" like she was doing.

She was teary again as we got ready to leave and it's hard to leave her like that but still things are worlds apart from what they were two weeks ago when she was still at LVHC and just lying there. It's so much harder on her since she's now aware of what the realities of the present and her potential future are.

Andie's word use continues as well as the confusing strings of words she's putting together. Stuff like " I don't get - oh!" and other seemingly random sentences. She did say halleliua (sp?) when she managed to get an ace bandage off her foot - it was there to help her circulation. She's pretty determined when she does or doesn't want something and it's hard to slow her down when she's set her mind to doing something - she's powerful and strong when she wants to be and has to get a grip on that whole impluse control thing.

One of the therapists said that first thing this morning she said, "question... When will I get out of here? " quite coherently. Along with these times there are the odd sentences, then comes some frustration - she had a short nap this afternoon and two aides and I were in the room when she woke up and started getting up and was mad at me when she was telling me to give her something and none of us knew what she was talking about and she got more and more frustrated until we finally narrowed it down to her glasses.
When I asked about how to help her get her words to come out her doctor just said that we should all encourage her to use her voice and to remind her to slow down - sometimes the thoughts come quickly and they can't get them out when they're trying to talk quickly.
During PT she walked well in the hallway with a walker and tried - for the first time in therapy - and did well on some steps.
In OT she did some multi-colored pegs and when the therapist asked her to remove them she did them two at a time. They then had her search for numbers on a big board it and she was doing well at identifying numbers and at scanning to board in search of the correct numbers - both on the left and the right.
She had her first " recreational therapy" today - that means you go in and play games - it's not supposed to feel so therapy - like and not like they're doing these silly, simple little things that they build from in the other types of therapy. Today she got to play air hockey and did well using her right hand and paying attention to what was going on. The room for RT is open in the evenings and weekends so we've been given permission to go down there if we like during their non- treatment hours. They also have a stove in the room and her room mate told me about the steps she went through to make a can of soup. Hopefully they can incorporate Andie's love of recipes and baking into her therapy here.
Chris to relayed to Josh that Andie played air hockey today and he was like "cool, you mean like the olympic girls?"

Shamma lamma Ha-ha-ha! ... or LOL for you youngsters.

My Mom and Dad told me that Andie was speaking more and more during their visit today so I decided to go right to Good Shepherd to see for myself and to ask her stuff- like... how much she remembers from the month of February... her stay at LVHC and how much she realizes from her current situation.

When I got there she wasn't in her room but out by the desk with her one-to -one aid.... and not too happy. She was mentioning going home ... getting out of there... and going outside. I told her (and have before ) that once she follows the directions of the therapists and "plays their game" she'll be allowed to get out of there. She calmed a bit and I convinced her to go look out the dining area window. Once we got there I realized that she is the poster child right now for aphasia. We were advised early on based on the area of the brain that the aneurysm was in that this was a distinct possiblilty.

Aphasia is an acquired condition where the person has normal intellegence and can understand what's going on but cannot get the words together to express themselves. As we sat there she'd start a sentence in a normal sounding way but end up with gibberish. I ended up just completing her sentences with goofy stuff like Shamma Lamma ... ding dong and we rolled with laughter and it was like we had just shared a joke but she was the only one who really got the punch line.

Thankfully she was in good humor when I tried this... cause if she's not - glares and middle fingers and not very nice words were there.
Needless to say I've got lots of questions for the speech therapist tomorrow about how to best help Andie get her ideas out.

During the afternoon there were times I just sat and wrote in my note book what she was saying and I quote:
GET OFF MY...
I'M SO SICK OF ...
I think if we can get some TV
OUTTA SAME HOME...
I asked her if she noticed pictures I'd left there of Dima and Josh and she said " I've seen them 97 times"
A guy walked by out in the hallway and she said again and again after he went by " he's cute, he's cute".
The rest of the day was interspersed with "I don't know" and I have no idea".

Then she was trying to unbuckle her wheel chair seat belt - something she hadn't done before - she was able to lengthen it but now gets the way to undo it - I was the only one with her and not so sure that she wouldn't try to get up so I made her put it back on and tried to turn it around to face her - she could still undo it so she was not happy with me that I was telling her NO and some faces were made and some choice thoughts started with me knowing their intent but her still not able to get it all out.

Her right side is moving more which I think makes the possibility of her trying to get up all the greater but she still needs to slow down and save her energy for the times that she's in therapy and being helped by the professionals just in case.

Her worst times that I saw were as I came in and after I said I had to go - the nurse was talking about getting her into the shower and she was all set right then - but disappointed that she had to wait . When I said I'd be going she was moody again and just unhappy.

At times today we just sat there and she kind of gave me a smile and we did that just before I left and the best words I heard all day came from her lips when she said "I love you" as I got ready to go.