Staying Busy

Yesterday morning Junior was doing well and up and ready to roll very close to our goal time.  We decided a nice long walk was in order so we headed out.  We walked to Hobby Lobby and Junior had a great time wandering around looking at everything and it totally made his day to get to pick out some stickers. 
Ready to roll, and not going to smile until I put the camera down so we can leave. 

 So excited to get Star Wars stickers.

Today has been a quiet day and Junior is getting a chance to recharge after his busy week.  I was so happy to see that the new schedule seems to be normal for him now.  He was awake early and instead of the typical demand to stay in bed late for the weekend he actually requested a move to his recliner for some activities.  
This afternoon he wanted his Star Wars toys and spent a couple hours playing with them.  After about an hour I figured he was ready for something else so asked him what he wanted.  Let's just say I interrupted him and he was not happy.  Who needs words to share your displeasure when you have a perfectly executed "stink eye" along with mouthing "hII-EE, O, Out"(Junior for Heidi, no, out, in other words get lost I am busy).  I love how his toy boards and an amazing imagination allow him to play independently just like other kids.

 

 

 

 

 

Junior is now 18 weeks seizure free, that would be 126 days and over 1/3 of a year. 

Getting on Schedule

With team training coming up soon we are working hard to get Junior on a better schedule.  He is not a morning person and exhaustion makes him more likely to end up sick or more likely to have a seizure so it can be a challenge. 
When things throw his schedule off it can take months some times to get back on track.  We are slowly making progress and today we were only about half an hour from our goal wake up time for him. It helped that he actually slept much of the night.  Our other big thing we are working on is his stamina.  More time up in his chair, more time outside, more overall activity.  Team training is going to be a busy time and having him prepared will give him the best chance at success.

Junior is doing really well even with the struggle to get on a good schedule.
He has just rocked right past 17 weeks seizure free and has now gone 1/3 of the year without one single seizure.   This picture has 121 days but we are now finishing up day 124 seizure free. 

 Working on learning all about dogs before we go to training.
 
Fall decorations went up out on the porch this week, though the weather seems to think it is still summer.

 Lots of walks, time in his swing, and other fun stuff. 

 Trach change time, hard to believe this smiling kid used to melt down at even the  mention of a trach change.  Now he is a champ about it and even lets me know when he needs it done.

  

Watching NCIS, his new tv show obsession.  We were trying to find something to get him interested in since Bones is being removed from Netflix next month.  Thankfully within a couple episodes he decided NCIS was quite exciting and binge worthy. 

Just chilling and waiting on me to be ready for his walk. 

 More outside time yesterday evening with Abby. 

 Board games with mr. competitive.

 Art time this morning, Junior loves "swatting flies".  Very messy but oh so much fun.  He also worked on a fall craft project but it is drying and will have to wait for pictures until later. 

 Junior's giant fly swatting artwork that he is sure needs to be sent to grandma. 

Today he was just 15 minutes off our goal time for waking up and being ready to roll.  Tomorrow we try for our goal time. 

 

Our Week

Another busy week coming to an end. 
Junior is doing really well and keeping everyone smiling.  This week a camp friend spent a couple days with us learning about all things Junior.  She is going to help us out for few of the dog training days which is a huge blessing.  Junior loved showing her everything and is very excited about dog training coming up soon.
Of course no visit with Junior is complete without lots of messy sensory fun. 

 Yesterday was his GI appointment and he was a rock star.  She said he looks amazing and is doing great.  Junior burst into a huge grin when he heard her. 
This is him watching the fish while waiting on his appointment.
 
 
We stopped for his traditional after appointment Dr. Pepper treat and he had done so well that I couldn't tell him no when he wanted his own food as well.  Though he can't eat it by mouth he thinks it is just wonderful to get his own food like everyone else does.  We brought home his grilled chicken nuggets and fruit cup(Chik-Fil-A) and put them in the blender so he could "eat" his meal through his tube. 
 
Didn't look real pretty but it smelled so good. 
 
Today he enjoyed hanging out with his buddy and they both loved being outside in the sunshine.  The temperatures have finally dropped a bit and we actually wore pants instead of shorts today.

Computer is Back

My computer has been down so I am way behind on posting.  Junior had a birthday, we attended the amazing JAF Walk and Roll, and just hit 114 days seizure free. 

I will start with his birthday which was back on the 10th.  He had a wonderful day and enjoyed talking to family on the phone and being surrounded by family and friends for a small party.

 

 

 

 

 

 

 

 

 

 

 

This past Saturday we all went to Palo Alto for the JAF Walk and Roll.  It was so much fun and great to see all our camp friends.  Junior loved it and especially loved seeing all his friends.

  
 
 

 
 


During the walk we had to stop to check out the totally accessible playground.  Sure wish there was a playground like this closer to home.  It was totally amazing and Junior loved being able to get to everything and play like everyone else. 
 

 Junior loved this musical play area.  There were sensors so that when you moved under the arch music played.

 

 He wasn't sure what to think of this rocking ship ride.

 

 

 So cool that he could get to everything at this play area. 

 

 

Yesterday having a little sensory fun.

Today marked 114 days since Junior's last seizure.  Every day is something to celebrate and such a blessing.