Playing the Piano

Junior loves music and has always loved his keyboard.  He does not have any small motor function in his fingers though so pushing with his arms was the limit of his ability to play it by himself.
As I was looking through the various activities for his new Eagle Eyes system I discovered an onscreen piano and knew he would enjoy it.
Today I hooked him up to the Eagle Eyes and turned on the piano to see how he would do.  I expected him to enjoy it but this was  his first try so didn't expect much.  This boy never ceases to amaze me.  Within a few minutes he went from just moving over the keys to jumping all over the keyboard mixing notes together and getting completely into playing.  He did not want to stop playing for 45 minutes and was having a ball. Be sure to turn the sound up so you can hear his playing.  I sure wish there was a way to record and get the actual sound I was hearing.  On both the camera and ipad the recordings have a tinny sound and do not sound the same as they did in person. Does anyone have tips to help with getting the "real" sound on film. 

Sorry about the voice in the background, we just had to call grandma and papa so they could listen to him playing.  

One more video this one after he had been playing for a few minutes.  When I watch him play I think of how this must make him feel. 17 years of needing help with every single thing you do and being unable to get your body to do what you want it to.  Then someone sticks some probes to your face and sits you in front of a computer.  You realize that in front of the computer you have control, your eyes have become your hands and things that were once impossible are now within your reach.  

Asthma

The last few days Junior has needed to take it easy.  His asthma hit him pretty hard with the latest weather change and now we are having lots of wind which sure doesn't help. 
With Junior not up to his regular activities I took the chance to dive into some spring cleaning.  Lots of organizing and getting rid of things we no longer need.  The medical supplies were attempting a takeover so I did battle finding a place for everything.  As I sorted the many cupboards and drawers I also discovered I have enough scissors, crayons, markers, etc to teach a classroom of kids. 

Earlier this week Della (the grandma of Junior's buddy who went to heaven this past September) brought over a chair for Junior to try.  A special gift but bittersweet, hard to see it without Shane using it.  After some adjustments it fits Junior perfectly and will definitely get lots of use. 

 The wheel base is slightly smaller then his other chairs which allows it to make the corner in our hall and get into what used to be his school room.  It has been about 5 years since he was able to get into this room so it had become our supply storage room and school was moved to the livingroom.  I was so excited to be able to reorganize the room so it has a designated school space in it.  He does so much better with a designated school space away from his normal activity space. 

 Junior in his new chair, he was a tired out guy so no smiles and I think he was concerned I was going to make him do school since when he spotted his school cart.

Hoping the wind slows down so he gets a break from his asthma and can get back to school and other activities.  I spent some time exploring his Eagle Eyes system so can't wait to get him back on that as well.

Some Evening "Crazy"

With the crazy weather Junior had a sleepy day but still wanted to use his Eagle Eyes for a little while before bed tonight. 
He started with a little warm up on the painting program.  He had promised Abigail he would paint for her so we had to be sure to save it.  Then he was ready for something else. 
He wanted the Star Wars activity but quickly discovered it was too easy for him since the target is quite large.  As you can see in the video he hit the target the moment it was on the screen.  He did enjoy listening to the Star Wars theme song a couple times though. 

 Then we took a look at a few other activities and found one he liked.  With this one it had animal pictures and the animal sounds.  He had to move the cursor to the page turn symbol on the bottom to move to the next picture or the sound symbol to hear the animal sound again.  He flipped through all the pics and sounds a couple time and then gave me his "okay whats next" look. 

He wanted to play a little longer before bed so we went to another activity where he hits the target to listen to the music video.  After a bout 10 times I convinced he we should try another one.  He tried it twice then absolutely refused to move the cursor to hit the target to make it play again.  No amount of requesting, pointing at the target, or encouraging him worked he just did not want that song.  So I took him back to the one he liked.  Suddenly he is hitting the target in the various places it moved on the screen so he could get the music video to play.  This specific song has a line in it that says " I think your crazy", well I told him if I hear that song again I may go crazy.  Well Junior proceeds glance over at me and grin before playing his song about 10 more times. 
I may be crazy before long but he is getting lots of practice moving that cursor around with his eyes. 

Sorry about the dark videos and pic, the lighting wasn't real good where we had the computer set up tonight but it worked well for Junior. 

Eagle Eyes

This week Junior and I were able to learn about and experience some truly amazing technology.  Something which has the potential to open a whole new world for Junior.  A system that uses eye motion as a replacement for the mouse on your computer.  You can click HERE to visit their website and learn more.

We were introduced to Eagle Eyes back when Junior was very small.  At the time it was fairly new and we would have needed to go to their facility to do the training and let Junior try it out. With his health this was just not an option for him. 
  As much as we love his ipad and the ability to communicate that it has given him I have always wanted him to have a way to feel more independence in  how he accessed technology.  He is a teen and gets frustrated at times because he wants to do things himself but in his world that's just not an option with most things.

Our local school district agreed to bring Eagle Eyes out for a training and to see if it would work for Junior.  The last two days we spent learning to use the system and then trying it out.  The Eagle Eyes trainer did a fabulous job teaching us about the system and how it works.  Probes are placed on the face which track the motion of the eye and transfer that to cursor motion.
I tried it out first and wow what an experience, I would have flunked if it was a test.  Trying to use my eyes to move the cursor and not move my head was not an easy task.  Junior on the other hand has always had limited body movement and depended on his eyes for everything.
Something like moving the cursor completely across the screen had been close to impossible for me but he did it without a problem. 

 There will be a learning curve as he learns to use the system and control the cursor and it will take time for him to move from the simpler to more advanced activities.  But watching him use the system for the first time and seeing the smiles and excitement when he realized he was in control and making things happen on the screen all by himself was nothing short of spectacular. 
 Junior all hooked up to the Eagle Eyes system


Learning to move the cursor with his eyes. 

A a video of him learning to move the cursor with his eyes.  He had to move the cursor to the target to get a music video to play.

Another short video this time he is shooting aliens.  We discovered he has a huge peripheral vision field.  So though he looks like he isn't even looking at the computer screen he was seeing it just fine(so neat to have the probes attached to him and get such a great picture of how he "sees").  This explains so much about his vision.  Often he will appear to not be looking at the tv yet is laughing and carrying on as if he is watching it.  We have always assumed his response was because he had seen the shows often and was just listening but now we know he can actually see from that angle and in fact seems to prefer seeing from that angle.

Our training team minus his teacher who had left before the pic.  Thank you to Eagle Eyes for an awesome training.  We can't wait to see the impact this technology will have on Junior.

Our Week

Wow I didn't realize I had fallen so far behind on updating Junior's blog.  He is doing well aside from a few asthma bumps with our recent wind. 

Last Sunday we had hoped to make it to church but the weather changed causing an AD flare up(increased temp, resps, hr) so we needed to stay home.  Junior decided he should still put on his church clothes for awhile.  He was so excited to wear his Star Wars tie for the first time and can't wait to actually wear it to church. 

 He continued his unit on Hippos this week and we are also including learning about Africa.

 Enjoying storytime on his ipad after his school session. 

 Tuesday we had an appointment at the DMV to get Junior his ID card.  Wow how can he be old enough to need an ID card?  I have never been so glad I made an appointment, that place was soooo busy.  Thankfully with the appointment we didn't even have to wait to get the paper work portion done.  Then it was time to have his photo taken and to say that was a challenge was an understatement.  In his chair he was too short for the camera and the sensor kept giving an error and not functioning.  I must say I was so impressed by the staff at the Lodi DMV.  A couple managers as well as other staff worked to problem solve the issue, one was even on the phone with the camera company trying to figure out what to do.  Finally after about an hour of trying they decided to see if we could "trick" the camera.  Since Junior's face was showing up on the computer and it was just his height not triggering the sensor they had me stand behind his chair.  It worked and after cropping me out the picture was just right.  Junior was a champ and quite patient with it all, after we left I told him I thought he most certainly deserved a Dr. Pepper treat and he agreed.

Yes that is a medication syringe full of Dr. Pepper, it actually worked awesome and gave me more control to be sure he only gets a couple drops at a time.   He was laughing so hard when I showed him the "Dr. Pepper medicine". 
 

Mr. Silly watching his movie and giggling.  I thought he was just laughing at the movie but then saw his mouth motion and realized he was wanting more Dr. Pepper.  He has a distinct motion he does when he wants a taste of something(most wouldn't notice it but if you are around him you figure it out in a hurry)

Watching a movie, he was having so much fun, I tried to sneak a pic but he caught me.

Yesterday Junior's new lift arrived.  We of course have been using a lift for many years but his motor was over 8 years old so needed to be replaced.   For those newer to our blog who haven't seen the videos or pics of his lift in action here are a few pics.  He has a voyager lift and portable overhead system.  We live in an apartment so mounting something on the ceiling was not an option.  With the portable system we have a leg on either side of the room.  The leg unscrews and is held in place by pressure.  A track then runs between the legs.  This allows us transfer Junior to his various equipment.  In the pics he is moving from his recliner into his chair so he can move to bed. 

 He loves his lift and thinks of it as his personal roller coaster ride. 

 A few moments of video showing me lifting him out of his chair to transfer him to bed. 

Today Junior is helping me finish up feeding tube pads for our summer camp fundraiser.  He loves to "help" me sew.   Can't believe camp is coming up so quickly and will be here in less then 2 months.  If you would like to help Junior go to camp you can donate to his Joni & Friends Family Retreat account HERE.(click the link that says Family Retreat- Mission Springs 1 2016).   Any amount is appreciated and will help us reach our goal. 

Sick Boy and Shriners Appointment

Junior has been quiet the past few days and just not himself.  We thought it was allergies since it heated up and the pollen count is now quite high.  Then he started having tummy issues so we knew he was indeed sick. 
He had a Shriners appointment yesterday that we couldn't miss and thankfully it went smoothly and at least the clinic portion moved quickly.  Getting him fitted for a new back brace was a bit more of a lengthy process but we all survived. 
Here he is snoozing while waiting to be measured for his new brace.  

Happy to be home and settled into his bed with I Love Lucy and his tree lights. 

Then for some exciting news.  Camp is coming up in June and this year my mom is flying out to go along with us.  We are all so excited and Junior can't wait for "a-ah"(grandma) to experience camp with him.  If you haven't been following our blog long and haven't seen past posts we have been attending Joni And Friends Family Retreat for the past several years.  An amazing camp for families  affected by disability.  Something we all look forward to each year and basically start counting down the days the minute we get back from camp.  They hold family retreats all over the United States and even in some other countries so be sure to visit their website to learn about this as well as their other  ministries.  www.joniandfriends.org   
 A few pictures from last years fun.  An entire week where Junior is just one of the kids, his disability is not the focus, he is accepted for who he is.  We raise funds each year to help allow us to spend this fabulous week at camp so if you would like to donate to Junior's camp fund you can click here .  This allows you to donate directly to our account with Joni and Friends for this years retreat and it is tax deductible. 

 Abigail was Junior's STM(short term missionary) last year and is signed up to go along as his buddy this year also.  Each child(disabled or typical) gets a buddy while at camp.  This allows the entire family to enjoy things whether doing activities together or doing their age groups activities.