Dentists, Olympics, and Catching Up

Way too long since my last post.  Junior is feeling oh so much better and his asthma has calmed down.  He saw his doctor late last week to be sure things were improving and he did great.

Here he is ready to move from the car to his chair and so happy to be home from the doctor. 

Sleepy guy was super excited that Abigail arrived home from her week in Oregon.

 Monday he had a dentist appointment and totally rocked it.  He did amazingly and even smiled at the dentist a couple times instead of hollering at him. 
 
After the dentist appointment we spent some time with friends and it was so nice to visit.  Junior loved seeing his buddy.  She wasn't feeling well though and needed to sleep most the time.
 

We have quickly discovered that Junior loves the Olympics.  This week he has been totally into watching them.  His favorite is swimming with volleyball and gymnastics coming in close behind. 

 
After watching some of the gymnastics we had fun pulling out these old pics of my dad to look at.  He was a gymnast in college.

 

Watching swimming today. 

 

Asthma

The air quality continues to be bad which means asthma struggles for Junior.  Yesterday morning it got exceptionally bad so we were doing lots of treatments and had to give a dose of prednisone to get control.  We chatted with his Pulmonologist and will see her tomorrow to be sure we are at a good spot, going into the weekend, and don't need to make any adjustments.
Today has been better and now I just have a very tired guy.  Loved seeing a few smiles and even a tiny laugh when I told him he really didn't have to work this hard to avoid starting school.

This pic is from yesterday when things finally calmed down and he was able to rest.

 A little smile today.
 

This past Saturday Abby and a couple friends came by for a visit before they headed to Oregon for the week. Junior loved having company but wasn't pleased that they were then going out of town. 

 

The plan had been to start school this week but Junior's asthma made that impossible.  Everything is ready so hopefully by this coming Tuesday he will be feeling better and we can get started. 
Here are a couple space/sensory activities ready for him.  I had so much fun hunting down activities to use with our space unit and I know Junior is going to really like it. 

Seizure and Asthma

Sunday night Junior had a seizure and it has been a rough week.  Air quality is very bad so he has been struggling with his asthma. Lots of extra treatments, oxygen, vent time, and of course I Love Lucy have been our week.  Yesterday was a bit better and hopefully today will continue that trend. 

My computer crashed a few days ago and we didn't get it back up and running until late last night, that would explain the lack of posts this week.  

Please keep Junior in your prayers. 

Keeping Busy

Junior has been quite a busy guy lately.

Ready for a morning walk.

Visiting the new Walmart in town for the first time.  

 

 A little basketball fun.

Helping Abby cook dinner

Goofing around.

Yesterday Junior had a Shriner's appointment to get his new brace fitted.  He did great at the appointment and then we spent the rest of the day at the Zoo.

Junior watching his very favorite animal the giraffe.

 

 

 Sorting clothes and picking out the next week worth of outfits.  Junior loves to choose what he is going to wear each day. 

 A few pics from today.  Junior painting and then doing the intro to his new school unit on space.

Since the med adjustment nearly two weeks ago the change has been quite amazing.  Junior's energy level has slowly improved and this week he has been on the go every single day.  Usually one busy day meas at least a day of recovery before he is ready for more.  Even after an outing he took a quick nap and then was ready for more activities something that is not at all his typical.  Such a huge blessing.    He is keeping me super busy and I am so happy about it.  Today Abby is here so after some arts/crafts and some school he is hanging out with her playing with his toys and watching tv. I am working on putting together activities to have on hand so I can keep up with this new level of energy.  Also working on putting together things for his new Space unit in school.  Do you have a great idea we can use with our space unit?  We would love suggestions. 

Painting Fun

A little outdoor painting on this beautiful Monday.
 Left over feeding syringes make great squirt guns, especially fun when filled with paint.  

 

 The finished art work. 

 Junior is soooo happy to have Abby back from her week at camp.  Notice the lack of vent, he spent an hour outside painting without his vent and did awesome.  He wasn't exhausted when we were done and didn't even nap this evening. 

  

Just goofing around

 

This was Saturday evening having a movie night.  Junior loved, loved, loved Ant Man and thought Big Game was pretty good as well.

Summer Fun

Junior continues to feel so much better since the med adjustment and is slowly getting more energetic and less sleepy. 
While his nurse was here for a couple hours this morning my sis and I went to check out the Walmart right down the road from us.  It was having its grand opening.  WOW it is huge and bigger then any Walmart I have ever been in.  It was pretty crazy being opening day but it was fun to see it all and wander around a bit. 
When I got home Junior was ready for some fun.  We headed outside to enjoy the sunshine before it got too hot. 
First he wanted to play with his Star Wars toys, then it was on to water beads and his ocean animals.

 It started to get too warm but Junior was not ready to come inside so we got out the water guns.  He had a ball trying to spray me and thought he was very funny.  He also loved getting sprayed with water.  His water gun is switch adapted so he can shoot it by himself. We added the pool noodle to make it stand on his tray but with his hands on the noodle he can push forward or back and the gun moves up and down. 

 As the heat continued to rise he finally decided I was right and we did need to go inside.  Movie time followed by some reading time and then coloring with his markers.   As I was setting him up with his tray to color I realized the top for this tray is something my dad made for him when he was about 7.  Junior and I were visiting in North Carolina and we actually brought it back in our suitcase.  I added a frame and it has gotten tons of use over the years.  Today I noticed the cutout around his waist is too snug.  We put a pillow under each side to make it work for now but time to get out my sand paper and saw to trim it so it fits again.  Junior thinks of this as papa's tray. 

EagleEyes Update

Junior has been using EagleEyes for a little under 3 months now so I thought it was time for a quick update.  With a week at camp in there and some health issues that kept him from using it as often as we would have liked he has still made steady progress.
His speed has greatly increased and his control is improving.  We are slowly moving from the more cause and effect activities that help him with working on the mouse control to the next level which is choice making and programs that require greater control to operate.
We have done some choice making activities and his biggest issue is getting the cursor from point A to point B without accidentally activating Point C or D as he moves past then.  We can see that he understands what he is supposed to do and this is a control issue.  So we have moved to mainly 2 target boards for now so he has success without as much frustration  We realized it is best to slow down and let him get the control down instead of having him frustrated and then not wanting to even continue.  We are also making sure he spends time just having fun and doing the activities he really likes which will of course also improve his control, timing, etc.

Yesterday he was tired and did not want to get in his chair but wanted to use his EagleEyes so we tried hooking it up to the TV for the first time.  It worked amazingly and he could stay in his recliner and still use the system.
Little stinker was doing great, then I moved to some more "educational" things and he suddenly was just oh so exhausted he couldn't keep his eyes open.

 Hmmm, I switched to some of his favorite music video activities and suddenly we have plenty of energy and are wide awake and smiling.

Such a teen, video games(shooting aliens) win over "educational" any day.

This alien shooting game has a much smaller target for him to hit, and though he loves it, doing it on the computer has been a challenge for him.  On the big screen he totally rocked it and this is him shooting 3 of the approximately 30 he hit while playing.  It may not fall under "educational" in the true sense but this is awesome for helping him get that control down.

 His favorite is still the piano and he even played that for his talent on talent night at camp.  Now that we have figured out how to hook the system up to the TV Junior will be able to use it more often because not being up to being in his chair won't be an issue.

 Just for fun, Junior watching tv yesterday afternoon. (excuse the lack of shirt, I took it off for his port access and then he decided he was too hot to put it back on).

So Much Better

I mentioned in my last post that the neuro tweaked Junior's seizure meds just a bit and it seemed to be helping.  Well today has been a huge improvement.  We got out for a walk this morning and he only took a couple very short naps all day.  He did not even need tylenol or allergy medicine so it seems many of the recently frequent "allergy" headaches may have actually been more seizure/neurologically triggered.

Abigail came over early this morning to go on our walk with us.  Junior was quite pleased to have her here but not many smiles because he wasn't happy she would be leaving for the week.  There is a second camp this coming week which she is attending as an STM(short term missionary/buddy).  

 After a long discussion about how she was going to help another child be able to have fun at camp, wouldn't be there very long, and also how she would call him and send him pics of what they were doing he was back to his smiles.   LOL can you see the tan lines on Junior's face?  When we are outside he always has his sunglasses and hat on so now he has quite the tan lines under his eyes.  It isn't that noticeable except in pictures at certain angles, like this one.

 Not too long ago I heard the term "suffering" repeatedly used to describe the special needs life.  There was quite a bit more to it and I know it was meant well, and was said in total love and kindness but I was left wondering if I was somehow missing something.  Even with all we have been through on this journey, seeing Junior or myself as "suffering" had never crossed my mind.  This has been something that has been bouncing around in my head for awhile so I will share my thoughts on it.  Remember we all have different perspectives and are on different journeys, so these are just my thoughts as they pertain to our journey.
 Life has suffering and it is going to touch everyone of us at some point in life( many people do live in constant suffering).
  In our situation we have many ups and downs, good days and bad, granted life can be a roller coaster at times.  But are we suffering?  That would be a resounding no.  We are living this crazy journey with all its twists and turns and feeling more blessed than I can possibly express.  Every moment is a miracle and a gift, this life has taught me to see the beauty in even the smallest things.  That God has a plan and purpose for everyone. Junior has more"struggles" then the average child but to him its just part of life, he has never known anything different.  To him life is happy, joyful, and something to be loved and lived to the fullest.  The joy in him shines through in that big full face grin of his and his fabulous sense of humor.  We are all on "different" paths in life but that does not mean one is better or worse then the others.  So for Junior(and I) there are a lot of terms I might use to describe this life but suffering is not one of them. 

Catching Up

Nearly another week without a post.  So here is a catch up post.
Junior was very pleased to go to church on Sunday and loved wearing his cool Star Wars tie.

I finally got the rest of the pics from the Aerospace museum downloaded.


The air quality has kept Junior indoors and not up to a whole lot.  While he has needed a break from activities I took the time to work on cleaning and organizing.  Abby helped me get the garage cleaned out and organized and then we worked on the house.  Always feels good to get things reorganized and get rid of things we no longer need.

Yesterday this little bumblebee had tube surgery so it can take hugs, snuggles and love to a special little friends family.  Philip flew to the arms of Jesus several months ago and is so very loved and missed.  Junior gave the bee its hugs and love so it can now take its very long trip across the ocean to its new family.  

 A few random pics from this week.

Only about 2 months until Junior's birthday so I made him a set of trach pads and ties(feeding tube pads as well).  They of course had to be giraffe fabric because that is his favorite animal. Now if I can wait until his birthday to give them to him.  I am so bad about waiting on stuff like this and can't wait to show them to him.

 Lots of napping this week and hopefully the air quality will start getting better.

 Foam fun, he was enjoying finding his fish in the foam. 

 Today has been a better day and we have a happier somewhat more energetic kid.  He was having some little facial twitches so a chat with the neuro, an  adjustment to his meds, and I think we are back on track. He has even already requested to go for a walk and paint tomorrow.  Goofy guy was very clear that he wanted to watch I Love Lucy today and do those other things tomorrow.  

I can't believe that my sweet boy will soon be 18, it is hard to even wrap my head around it.  The child who doctors said would never make it past 6 is nearly an adult.  I thank God for each and every day and never take one moment for granted.  Such a blessing and honor to care for this sweet, opinionated, stubborn, happy, smart, loving, determined, funny, and amazing boy.  

 

Happy 4th of July

We won't be making it out to the fireworks so Junior made his own. 

Of course after making fireworks it was time to relax with some music.  He decided he wanted his disco lights as well.  Junior was using his head switch to turn on the lights. 

Some video of his lights, he likes to watch the "light show" on the ceiling which is why he is looking up most the video.  First one is him smiling and showing how much he enjoys his lights.  Second one he knew I was attempting to video him turning on the lights so he was being a stinker and not only was he not smiling but he was not about to turn on the lights when he thought I was watching.  I finally had to sneak up on him to get it on film(that what I catch on film in the second video).  Such a teen with his attitude, got to love it.

I still have more pics to post from our aerospace museum outing but just haven't found time to get it done.  Hopefully this weekend.