Monday, July 21, 2014

Busy Max...


I was talking with one of Max's nurses the other night about the busy couple of days he had.  It started with music therapy, and speech.  Then a meeting with a case manager for his medicaid waiver.  Then the wheelchair guy came by to return his wheelchair and fix his stander.  The next day was Physical Therapy, Speech, and Art.  At night, the nurses came and Steve and I were busying ourselves with getting him ready for a weekend trip. This all happened in two days.

When I was talking with Max's nurse about it, I realized again just how many people we have coming all day, every day.  Max has had a busy summer with Speech, Art, Music, Physical, Massage therapies. Then on Fridays, the one day off a week, we've started to get cleaning services through Max's medicaid waiver.  A cleaning service comes and cleans Max's area to keep it sanitized.  At night, his nurses get here and have the full run of the main floor caring for him.

It leaves little time to sit and write, or Steve and I to sit and chat, or sit and do nothing.  (Of course we're never doing nothing... there's always something needing done around here!)  There is still big sister's stuff too.  And I know we're not alone in doing, doing, doing for our kids.  But sometimes, it's nice to just call it all off and relax.  It's been terribly hot the past week or so.  Too hot for Max to get out and enjoy being out.  So, on Friday, we called off everything and stayed in the cool, in our pajamas and just veg'd in front of the tv all weekend.

I got a little stir crazy and tired of listening to myself talk to Max and the dogs by Sunday, but on the other hand, it was nice to not do anything. I didn't have to put on a happy face for anyone when I didn't feel like talking.  I didn't have to explain how Max's day, or week was to four different people a day.

Don't get me wrong, the people that provide care for Max are precious to us.  Max loves them all, and misses them when they're gone.  When his speech therapist was away for a vacation earlier this month, he told her "it stinks" that she was gone, and that he loves her.  They are his friends, and he really enjoys seeing them.  But sometimes...this introvert momma needs some time to recharge.  I've called off massage therapy for now to get a free day back.  And we're looking for a Friday day nurse to give me and Steve a day to get things done during daylight hours...in the house and away from the house. When Max has to be here all the time, or watched all the time, it really limits what gets done!

Here are a few photos from his busy times lately...

Playing a counting came with B in Speech Therapy...he won!  We're trying to sneak in math when we can.

Giving Helper Monkey some kisses,.  Daddy had just left and gave Helper Monkey kisses when he kissed Max good-bye.  I looked over and he had his monkey right up in his face.  Later in speech he told me "where dad, my call"
Getting stretched in physical therapy.

Max's art - he was making Red Rocks. 

Then went to blue.

One band Max...drums, guitar, and chimes.


It's another full and busy week, after our weekend of nothing.  Since Max told me he was bored of me yesterday, I'd say he's ready for it.  I'm happy to squeeze out a few more hours of no therapies!


No comments: