Children Learn What They Live

Butting Heads

Alex has gone home and I am back sleeping in Kyle's room.  We both slept well, and the morning began peacefully;  no screaming during his bath, he spoke civilly to Ali and Rachel, and he spoke nicely when he asked to have his shoulder scratched.

On to breakfast and a different story unfolds.  Grunts of anger and lots of pointing when he didn't like the table I chose (I'm guessing).  It's like being with a toddler.  I told him I couldn't help him unless he told me what was wrong.  To me it looked like his stubbornness was shining through.  He then would not even feed himself, nor let me feed him.  And the clincher was when I asked him to look at me (so I could explain why he needed to eat) he actually closed his eyes!

I couldn't help but smile to myself, seeing that stubborn streak still there.  I did, however, feel the need to leave to avoid butting heads, and asked a staff member to take over.  It was later explained to me that it was more likely his confused state of mind.  I can  only hope I can bring even a portion of what I have learned here back home with me.

Just a sidenote, it is sooooo much easier here to practice patience and to speak softly and to think about the right things to say before we speak, than out there in the jungle.  That's because everyone here does that. They lead by example. It brings to mind this poem that we all know so well.

"Children Learn What They Live"

http://www.blinn.edu/socialscience/LDThomas/Feldman/Handouts/0801hand.htm

If you listen carefully to the therapists voices in the following videos, and you will get a sense of the kindness and understanding that fills this place.

Standing Videos From Yesterday

Since Kyle started becoming vocal,  I wanted to document his voice progression with video.  I did not succeed at that goal.  So here are some videos of him practicing standing, with a few of his milder outbursts for your viewing pleasure.

                                         

The Speech Therapy videos demonstrate what efforts Kyle can make at talking, although this rarely happens outside of Speech Therapy.  And that, of course, is why Cheryl does what she does!  She has a gift.

                                          

Company, Therapies, and Troop 911

Company

Kyle and I had a surprise visitor last night, arranged by Alex!  He brightened up the afternoon, brought out some conversation in Kyle, and was some nice relief for Alex and me.  And we added in some Mellow Mushroom fun!  The day all around was a good one.  :)

We weren't quite sure how Kyle would react to Hollis, since in the past, he has told us he does not want any visitors, he does not want to snap chat, and if fact, he does not want his phone at all.  But judging by his expression I think all went well (only a few minor outbursts).

  Thanks for coming, Hollis!

A Few Days' Therapies

I have lots of photos from over the past two days, and since Kyle has become more vocal and seemingly more ambitious and determined , Alex and I have both turned to taking videos to document some of his progress.  I will try to get the videos posted tomorrow.   But for now, here are some of the latest therapy shots.

Even after struggling in pain to stand........

...... Kyle, Melanie, and Jo can still find some laughter.

        More leg presses.

                 






     More sit and stand, sit and stand, and good posture in front of the mirror.

Whoa! .....not quite able to balance on his own yet.

                                                                                                                                                                 







Introducing a one-handed walker for standing support.











                                                                                                                                                                 

A new standing machine.

A new leg machine.  Kyle's not ready to pump with his arms yet though.

Measuring for a new upright wheelchair!  This will allow Kyle to propel himself with his own legs and feet!

Jasmine asks Kyle to give her five more sit ups.  Kyle surprised us when he said no.   The use of bribery always works ;)

More innovative ways to work that slow to recover deltoid.

Chillaxin!


After all that hard work, Kyle makes himself comfortable and pulls up a stool!

Hang In There Kyle

 And last but not least, such an awesome, unexpected, sincere and compassionate sentiment and tribute to Kyle from Troop 911 in the Bahamas. Thanks guys!  Kyle's eyes lit up when he saw this.  He hopes he can make it next year!

Sunday Again, Solitaire, And A Gift

It's Sunday..... AGAIN  :(

It's Sunday and Greg has gone.  Here I am the sole punching bag for Kyle's frustrations. And that can be taken literally.  He has used my arm as a punching bag while he's laying in bed, and there I am, just only trying to help him.  But for right now, it is just the verbal abuse while I help him eat breakfast.

The absence of activity on the weekends adds to the unwelcomed mood.  There is no hustle and bustle of mealtimes and therapy and doctors rounds and medication rounds.  Less patients and caretakers means less smiling faces too. Kyle has already called me stupid and a bitch.  At least I don't take it personal anymore.  I brush it off but it still makes me feel sad.

I offered to take him to the garden, thinking it would do us both good.  He said no.  The last two times he has had minor meltdowns out there, so I won't push it.  I'm getting to know his stimulation limitations a little better.  So we watched TV together instead.

Turns out, watching TV was a good thing.  We watched one of my favorite shows, The Sunday Morning Show.  Always something captivating or inspirational there.  We then watched an auto mechanic show, and we finished the afternoon with college football and high school basketball.

Kyle's first passion and dream to be an NBA player came well before his Motocross passion.                 

 

Solitaire

I did take time out for an hour in the garden by myself and I managed to get Kyle interested in playing a game of Solitaire.

At first I tried to guide his arm to play the cards himself.  But this got too frustrating, so I let him tell me where to play them.  He started out with pointing or motioning with his head, but somehow I convinced him he needed to tell me what he wanted to play.

 I don't want anyone to think that Kyle is talking in elaborate sentences. Getting him to speak is like pulling teeth.  But I was so impressed with his directions to me in this game,as simple as they were, "four on the five" or "queen on the king",   it made me feel like a therapist for the weekend.  I knew just what he needed!  And, he knew just what I needed <3

Happy Endings and Two Gifts

Our tech tonight, Isaac, was our redemption.  He was so funny, he kept Kyle doing his little chuckle thing and had me in stitches.  There are some techs here who just have a "gift".  Isaac said he loves his job.  Issac helped Kyle find laughter tonight.  Not much more to say about that.

Kyle received another gift over the weekend.  It actually made me tear up when I showed it to him and read it too him.  Thank you sooooo much Alyssa Rodemsky for the beautiful bracelet for Kyle.  You have no idea how special this is.

“Piglet sidled up to Pooh from behind. "Pooh?" he whispered."Yes, Piglet?"  "Nothing," said Piglet, taking Pooh's hand. "I just wanted to be sure of you.” ― A.A. Milne, Winnie-the-Pooh

Laughter And Love Help Make Things Better

I'm struggling here. I just don't feel like writing.  I've slacked a few times this week, and now here I am again just staring at this blank page.

Greg is here and he is helping Kyle eat dinner.  Kyle is unhappy, in pain, frustrated and getting angry at Greg. I had something funny from yesterday I was going to pass on, but now it doesn't seem as funny.

I guess I have the blues right now.  I went out this afternoon to get my haircut and I didn't feel bluesy then. I walked to the Aveda Institute which is a cosmetology school.  $16 for a haircut by an up and coming.  Can't beat that.  A nice new refreshing haircut, a nice walk in the fresh air....

But now here I am.....  staring again.

Laughter is the Best Medicine

When Kyle yells, Kyle is heard.  Jasmine came out of her office once and into the gym to ask "Kyle. is that you??? I can hear you from my office!"  He is so vocal right now with Greg helping him with dinner, that our training nurse, Matt,  from a few weeks ago just popped his head into the room.

Matt:  "Hey Kyle, I can hear you from the nurse's station!"
Me:    "Oh no, I'm sorry"
Greg:  "I'm sorry, we'll close the door so he isn't disturbing anyone"
Matt:  "Oh, we love hearing that!  We were saying  'Hey, that's Kyle we hear down there'.  The ABI nurses are actually happy when a patient is vocal or even take a punch at them, it means it's progress".  

He lightened the mood for us, made some jokes, and made us all laugh,

So, keeping in a lightened mood, and hoping this is not TMI.... Kyle had his "condom catheter" removed today, in step with getting him to use a urinal.   So when he started yelling to us he had to pee, Greg and I stepped into action.  Of course, he was sitting in his wheelchair at the time, and Greg and I look at each other with that questioning look of  "now what?"

Me:  "I don't know how to do this in a chair"
Greg: "Well don't look at me"
Me:   "I think it would be easier if we get him in the bed , don't you think?"
Greg: "Maybe we should call someone"

We made the phone call, but in the meantime, Kyle is still yelling "I have to pee, I have to pee" and we didn't want an accident in his chair, so not waiting for help, we get him in the lift ourselves and back to bed.  We give him the urinal but he really still needs assistance from us (remember, he is one handed).  He is now just screaming, but not using any words (which is how it usually goes).   We have no idea why he won't pee and why he is getting so agitated. So after minutes of this back and forth at each other, he finally uses his voice and yells at Greg,

"Dad!  You have to open the lid!!!" 

Nough said.

Kyle's Calendar

Yesterday in Speech Therapy, Cheryl helped Kyle get organized with a calendar.  Her calendar had every component to it except the days were not numbered.  Here was an opportunity to get Kyle to write.
After successfully getting Kyle to count the days backwards all the way to the 1st, she then  had him write in today's date to the end of the month.  Task completed,  A+.

 Dog Therapy

And of course, gotta have that daily dose of love..

Just Another Day

Alex left this morning.  It's always difficult to see him go because he has this way with Kyle that no one else has.  Okay, so maybe once he yelled at Alex for no reason..... poor Alex.

"Kyle, what's wrong?"
"YOU!"
(pause)
"You're stupid!

Of course Alex finds humor in much of these disturbing outbursts, but this is nothing compared to what Kyle has called his therapists.  I just can't repeat that on my PG13 blog.

                              Today's Therapies

Occupational Therapy

 Using a peg board in conjunction with electro stimulation encourages Kyle to reach.  This also exercised his fine motor skills.

Physical Therapy

Leg presses.

Mom's Therapy

Playing dominoes!  A game Alex, Kyle and I liked to play at home. A little fun time in his down time this afternoon. He remembered how to play, and I used it to get him to reach with his arm.

Plus shooting hoops with Shannon, Crystal and Carter's gift.

And finishing up with a little humor.....

In reviewing the rules of Dominoes with Kyle, he was able to answer all my questions quite accurately..... until the last question.  You be the judge.

Me:      "And what happens when you can't play a Dominoe?"
Kyle:    "Shit out of luck"

As Greg would say, "That's my boy."

A Salute To Troop 911

Today started out like most any other day;  up and ready for breakfast, check the Therapy schedule on the white board, travel on to the gym where the patients "dine", and greet everyone you pass with a friendly "Good morning"!

We get Kyle's table, we get his food tray, I leave to get my coffee, and Alex starts helping Kyle eat. An hour later, the therapies begin.

We always look forward to that something "new" that Kyle so often gives us each day. This morning we had a special Music therapy, by appointment only!  I was anticipating it so much, only to find we weren't allowed to watch.  First time ever not being able to share his progress.  : (

Next up, Speech Therapy, which was a little of an eye opener today.  We have been so enthralled with his ability to remember so many things from the past, that I lost sight of his memory of the present.  Kyle has trouble remembering what he ate for breakfast, or what his therapists names are, or that we went to the Garden yesterday and played catch.

Emma says  "It will come in time.  Day to day will likely be a challenge.  Focus should be on comprehension and expression and on new learning."     Ok, our new goal!

Before you know it, it's lunch time.  Today was combined with a Physical Therapy session.  It was also another bit of an eye opener.   A "standing frame" was introduced, which assists the patients with extended standing time.  It is used at lunch with the idea that eating will get the patients minds off the fact that they are standing, and for a prolonged period of time.

I'm not sure, but this may have back-fired for Kyle.  It brought the worst out in him. His agitation level rose. While this should be taken seriously, Alex and I could not help to find some humor in it.  I think it just comes from knowing Kyle's personality......

Even when we get frustrated we don't normally refer to our foods as an expletive.  In Kyle's current recovery stage it takes him ten times to stab a little bite of food . When his chicken kept slipping off his fork, instead of asking for help he shouted (quite loudly mind you),   "Little bastards!" 
















Kyle became very quiet after that.  He did not want to talk.  Both Emma and Jasmine asked if we knew why there was this change in him.  I could only suggest that standing while eating lunch, with the added frustration level, and anxiety, probably wore him out.  We continued on with electrostimulation in the afternoon.

There was some definite muscle response, and little Leo was a driving force to get Kyle to reach for him.

Although we may have started out the day a little rough, the time with Jasmine was very productive.  Towards the end of Kyle's session, Jasmine was trying to get Kyle to raise his arm outward and upward by using his deltoid.  Watching him struggle, I came up with an idea.....

I reminded Kyle that his Scout mates from Troop 911 were scuba diving this week on their live aboard sailboat in the Bahamas.  I suggested he give them a send-off salute.  I told him I would post it on FB and I was sure they would see it.  He liked that idea and agreed to try.  So here is a salute to Kyle's Scout mates of Troop 911.  Wishing he were there with you!

A big thanks to Greg for encouraging me to take the course with Kyle.  Just two weeks before the accident, I am left with such a wonderful memory.

               Be safe and have fun, Troop 911!  We're thinking of you!

       

Thoughts From Sunday

Sunday Morning Breakfast

Kyle has lost 40 lbs since the accident.  He has been "drinking"  his food through a tube for 6 weeks now.   While Kyle has been taken off the trach, he is being carefully monitored on what he eats while the tube feeding continues.

He has just graduated to level three eating, which means he goes from ground meats and soft sides, to chopped meats and sandwiches.  I'm not sure Kyle really cares, but Alex and I are undoubtedly excited! This morning's breakfast is "real" ham and eggs, and tomorrow's will be Kyle's favorite, sausage, biscuits and gravy.  Looking forward soon to some Chipotle, with Herbie and Lucas!

A Painted Picture

We are enjoying some fresh air in the garden this morning.  Sunday and the garden are synonymous to me.   The boys are enjoying some serenity, a simple game of catch, and the tranquility of the Koi pond.

Patients, and families, and friends, are coming and going. We have met some of them and we have heard their stories.  There is quite a mix of strokes victims and accident victims, of brain injuries and spinal cord injuries.

Everywhere you look there are wheelchairs. There is the husband sitting silently, holding and stroking his wife's hand, and the husband showing his wife each flower they pass. There is the teen who is hanging with his friends now instead of his mom.  And the sole boy walking, still with his "belt", who we know must be going home soon.

 I remember the first day we walked into the Shepard building.  I became overwhelmed with emotions.  It was so difficult for me to pass by all these victims of accidents and keep my eyes from tearing up.  Back then, they were "victims" to me.  Now, they are human beings with a story.

Their Stories

At first all you see are wheelchairs and helmets, trachs and silent faces, broken bones and scars. There is the young man whose ex-girl friend took a bat to his head, and then left town.  Or the young man whose  head slammed into a chipping machine, when a rope caught behind his neck and forcefully pulled him into the machine.  There is also the teen and the young adult both here from auto accidents similar to Kyle's; both thrown from their car or truck, both no seat belt, both going too fast.

And then there is our friend Tucker, who we can happily say has gone home.  We met Tucker and his wonderful family and friends in Fairfax ICU.  Tucker fell backwards on cement when the scaffolding he was on broke.  Somehow, it was just meant to be that we met and our families connected.  We followed them here to Shepard and we cheered each other on in our recoveries.  I look forward to the day when Kyle is back home, and we can once again share some time with this caring family.  Much luck to Tucker!

A Little Humor

Ending on a light note, there have been quite some funny things Kyle has said lately.  Keep in mind, it is "funny" not because Kyle is trying to be funny, but because his brain, in the process of healing, has him still a little confused.

This from Diana, when showing him the date on paper:

"Kyle, what's the date?"
"Zero, seven, backslash, nineteen"

Gotta throw in that backslash 

This from Emma when asking orientation questions:

"What is your name?"
"Kyle Pinelli"
"What is your age?"
"16"
"Where are you now?"
"Shepard Center"
"And where are you from?"
"My mom"

And this from Alex, after giving him a verbal auto technology quiz with A,B,C,D answer choices:

Alex:  "Kyle, what would you like to do now?  Go to sleep, watch TV, or listen to music?
Kyle:  "A and C"

‘It is not the strength of the body, but the strength of the spirit.’ – J.R.R. Tolkien

One Step At A Time

It's a dreary, rainy Saturday here in Atlanta.  First time since we've been here, which will be four weeks on Tuesday.  The morning started off with Kyle yelling at me at breakfast.  I had to leave and go back to Kyle's room because it hurt my feelings so much.  I know he didn't mean it because he told me so later, but all the same, it brought back some old, less than desirable, memories.  And made me cry, but I'm better now.

We played a game of Uno, before Greg had to leave.  Kyle's resourcefulness shined through again.  We couldn't find the card holder for Kyle to use (he needs it because of his being one armed), but before we could come up with an idea for Kyle, he was already one step ahead of us.

Using non-functional left arm as a card holder!, still needing support for his right arm, and Greg cheating.         .

Greg had to leave shortly after, but Alex is here for a few more days..  It's soooooo quiet here on the weekends.  I enjoy the up side to this however;  Alex and I can dote on Kyle instead of scurrying back and forth to therapies.  Alex gave him a haircut, a shampoo and shave, and a much needed lotion application to his ever itchy head.

We took him down to the cafeteria with us for lunch (with no more trach, we can leave the floor unescorted!)  and then showed him the gym where Greg, Alex and I work out.  We sat and watched some people shoot hoops, and then just spent the rest of the afternoon chillin' in his room, just listening to music.  Alex made a cool Spotify playlist for him, while I finally read all his yearbook signings for him (everytime I tried in Inova ICU, I would start to cry and give up, and I knew he wouldn't remember them back then anyway).

It is dinner time now and Alex is helping Kyle eat, allowing me to finally catch up with writing and be current.  All I need to do now is add a few more photos, a little humor, and an amazing video.

Yesterday, with the aid of Rim (filling in for Melanie), Kyle did his second bed to wheelchair transfer without the lift......
                                                                                                        

 .....then on to the gym, where Rim and Kyle connected, with laughter (look closely at Greg's face) and smiles for all of us.

Notice Greg, holding it in, trying to stay serious.

Laughter, the best medicine!

We then moved on to what we thought was pretty serious stuff....electrostimulation.

Normally, when we decide to contract a muscle, our brain sends a signal (like an electric current) along our nerve fibers and up to our muscles which then contract.   Kyle's deltoids are not contracting.   So electrostimulation will do this for him. Judging from Kyle's responses, I am guessing it is not a pleasant feeling, but non the less, Kyle was still able to turn something unpleasant into something humorous.

Alex had to get up and leave because he couldn't stop laughing, which only encouraged Kyle more.

Jasmine, taking control and getting back to business.

And saving the best for last......

        "It does not matter how slowly you go as long as you do not stop."   ~Confucius 

Kyle's Voice

Alex and I saved our big surprise for Greg's arrival yesterday, because every day he would ask  "Is it out yet? Is it out yet?"   We are happy to say  "It is!"  

Kyle's trach has been removed.  There was quite a hole, but all that is done is bandaging it.  No stitches.  It will close on it's own in a few days.  Kyle was still leery about speaking.  This is because the air escapes through the hole before reaching the vocal chords.  But with the bandage on, we place pressure over the hole and his voice transforms from an airy whisper to the clear Kyle voice we all know.

Kyle's Speech Therapist, Emma, (who is covering for Cheryl, and who has also captured my heart) worked with Kyle to get rid of the uncertainty he harbored in speaking.  She successfully had him talking in sentences before the session was over.

                                           

My other big surprise for today's post, was let out of the bag by Crystal last night.  She was soooo excited, she just wanted to tell the world.  I am happy that she did, because it made it all the more special........

 While talking to my mom yesterday afternoon, and finding that the whole gang was there, I asked Kyle if he wanted to say hello.  He spoke to Grandma, Uncle Greg,  Crystal, and Carter.   And we just couldn't leave out Uncle Carl, so we promptly made a phone call to him.  There were many (unprompted)  "I love yous" to make everyone's day.  <3  

Greg, Alex and I ended our eventful day with a very enjoyable outing to Mellow Mushroom, which to Alex's delight, was serving $2.75 New Holland Paleooza!  It doesn't take much to make Alex happy   :)

Winning Hearts

Alex arrived on Tuesday, and the two, upon seeing each other, well....need I mention again the incredible connection they have?

The speed with which Kyle is moving is beyond words.  His emerging personality with his therapists is so much fun to watch and his ability to make us laugh wins everyone's heart.

Where there's a will there's a way, and Kyle's ingenuity impresses us all.  I  am reminded of a conversation with two of his friends, sisters, who sat with me in ICU and told me story upon story of his creativity in Science class, and of his being at the top of the class in problem solving. He has undeniably shown us that side of himself.  What do you do if you can only lift your arm high enough to get the cup to your mouth, but not tip it?  You use your teeth of  course! 

We also heard our first laugh! A big thank you to his Tech Rodney, for being so cool and knowing just what Kyle needs.  He reads him well.  Must be a guy thing.  All I know is he was able to get our first audible laugh from Kyle.

We are missing our dear, sweet Speech Therapist, Cheryl and wishing she were here to see all Kyle's weekly goals being blown out of the water.  But while she is away we are thrilled to have Emma and Diana in her place.

 
Diana helps Kyle to speak with some simple words on her tablet.

Kyle is progressing with weight bearing exercises for his legs.  The 14 inch rod in his thigh seems to pose no problem.  It looks like there's some joking going on here.  I can't always hear what's being said, as I try to stay in the background and let Alex and the therapists work their wonders.

Kyle's shoulder muscles are not strong enough to raise his right arm.  Jasmine gets him to high five to help work those muscles.

Greg arrived tonight and Alex and I had saved a big surprise for him.  Tomorrow's post will have much more exciting news.  But I'm guessing everyone's already expecting nothing less!