Our Week

Wow, it has been almost a week since my last post.  Our week started off rocky with some crazy weather moving in which caused issues for Junior. 
On Tuesday Junior had his regular Shriners appointment and spinal x-rays.  He did fantastic.  Typically spinal x-rays at Shriners mean total meltdown for Junior the moment we walk in the room. He acts as if the little bench he sits on for the x-rays is a torture device and it makes for an all around bad appointment.  This time he didn't complain once and in fact was smiling and "chatting" while getting his x-rays.  Then we had to wait 2 hours before seeing the doctor and he still handled it all like a champ with no complaints.
He is done growing(or at least at the very end and isn't expected to grow more then a very small amount if any) so he doesn't need to see this doctor for a year, yeahhhhh.
Patiently waiting for his x-ray

 Being silly while waiting to see the doctor. 

It rained our entire drive to Shriners but thankfully stopped before we headed home.  Part way home  it started up again and the skies were black.  Off to one side we could see lightning and even though it  was a bit scary it was also an amazing thing to see.  At one point Junior got very nervous and I cold see we were on the edge of tears.  I told him it was okay and God was putting on a show.  He seemed to think about that for a second and then decided it was kind of fun to watch the storm.  The storm was not over us and we were only having a sprinkle of rain but were able to watch this huge storm in the distance and could hear it.  I can honestly say this is the first time I have ever experienced something like this.
As we were getting near our home I noticed what almost looked like snow on every ones roof and also noticed patches on the grass and road.  Turns out they had, had a big hail storm while we were gone.  This is what our yard looked like.

 A happy kid relaxing after his long day. 

Thursday morning Junior decided he was ready to get out of bed and I wasn't moving fast enough.  He took himself off his vent and was quite proud of what he had done. 

 Yesterday Abigail came over and Junior enjoyed chatting with her and of course getting a big hug.

 She brought her senior pictures to show us and here are just a few of the many, many great pics.
 
  


 
During part of the photo shoot she put on her trach shirt and used the book she had written about Junior as a prop.  Loved these and Junior thinks it is fantastic that he is in some of her pictures. 

This morning Junior needed his trach changed and totally rocked it.  I am sooooo very proud of him.  Usually it takes two people and he needs meds to keep calm for the change.  This morning after his shower I grabbed the stuff I needed to change the trach but set it up without letting him see what I was doing.  I turned on his ipad with music and we chatted and sang along while I quickly undid the ties and pulled out the trach.  He coughed once and then a big grin as I told him how great he was doing and he was back to "singing" with me.  Got his neck and stoma cleaned while we were being silly and singing and then slid the new trach in.  A few coughs but he did fabulous and was very proud, he had to call "aa-a"(grandma) and tell her what a big guy he had been for this.

This picture shows what Junior's trach stoma looks like without the trach in.  His stoma actually looks really good and has healed up great.  The dark area is just some scar tissue and not irritation. 

 Junior is relaxing this afternoon and watching Scooby-Doo after first watching Home Alone 3.  He is needing a little extra vent time because of the clouds moving in and out as well as some wind but is happy and doing really well.