Update Time

So far behind and finally found a moment to post an update. 

Junior is doing well, the typical ups and downs with asthma this time of year but that is normal for him.  With things being so busy our sleep and activity schedules have been a mess so the past couple weeks I have focused on getting things back on track.  Thankfully getting back to our regular activity schedule has been a success but the sleep schedule has been much more challenging.  Junior is quite a typical teen and thinks he should be up half the night and get to sleep in until noon, he can't figure out why I don't think this is a good idea.  Lack of verbalization in no way prevents him from making his point clear and trying to convince me that things like exercise,  stander time, and school should be optional. 

Yesterday was an interesting day, he woke up coughing and dropping his sats and treatments didn't do a lot to help.  He was starting to make the barky cough sound which signals that the trach is plugging so I started grabbing the stuff to change his trach.   We had one of his yearly reassessments for  services scheduled and his case worker arrived just as an emergency trach change was taking place.
Junior likes to keep it real and make sure to share the excitement in our house.  I must say I am sure this is an assessment she will not soon forget. Boring is certainly not a term used around here.

Now for some pics from the past few weeks. 

Decorating eggs the week before Easter.


Playing basketball during stander time and doing his best to look totally uninterested and just too tired to handle it(he was really enjoying himself but didn't want to let on that stander time isn't torture).  Got to love that attitude. 

 Goofing around(oh look part of a smile while in his stander, gasp, he was slipping and showing he might be having fun).
 
A whole lot of silliness with aunty Mellisa, she was singing to him and he was laughing so hard.
 
Easter fun.  The first picture was his "put the camera down and help me look at my stuff" face. 

 Using his markers to color his bug canvas

 Cars, cars, cars, and did I mention cars.  He was soooo excited when I finally got his cars board made and he absolutely loves it.  Today we even found some road tape at walmart to add to it.  I love watching him "play" with his cars or Star Wars toys on his boards.  He is so intent and I just wish I could see what is going on in his imagination.  We have used toy bars before which he liked but wasn't that crazy about but these boards he will spend hours at a time with and demands them as soon as he gets up in the morning.   I think the toys being on the board take away the distraction of things around them so he can really see and focus on them.  Amazing how something so simple can make him so happy.  I can't express how happy it makes me to see him find a way to play independently and get so much joy out of it. 

  

A short video of him "playing"

 Playing with his Star Wars toys and then the corner pic with both boards(sometimes you just can't decide what toys to play with so you need all of them)

Tomorrow my sis and Abby will be coming over for an Easter egg hunt(Abby couldn't be here on Easter so we put it off a week).  We are also celebrating my sisters birthday a few days late which should be lots of fun.  

She had a relapse last week with increased pain and mobility issues so was restarted on steroids to try to get it back under control.  The steroids as well as med adjustments have helped and the last few days have been better for her.  The pain is more manageable and she is back to using her walker all the time in the house and only using the wheelchair when out(she was even needing it inside because of so much pain in her feet).  We appreciate all the prayers.