Thursday, April 10, 2014

Busy is good...

Max is in school right now.  I could be making phone calls, or updating calendars, or writing emails. But, instead, I'm taking a minute to update Max's blog.   We get to this time of year and stuff just gets c-r-a-z-y!  Yesterday, I had a couple of hours after Max's music therapy so I set out to schedule appointments for the next few months.  I called ten...(yes, 10!!)...of Max's doctors for appointments, and just for fun threw in a phone call to a medicine manufacturer to find out the ingredients of a new injection Max needs to ensure there were no allergens in it for him.  When I finished with all my phone calls I got Max in his wheelchair and we headed out for a walk in the glorious spring weather.

Walking around, I could tell he thought we both needed a break.  He was so happy to be out with the sunshine on his face.  His days are increasingly full as of late.  Here's a rundown of a typical Thursday.

Max's nurse leaves at 9:00am just after he gets his morning medicine.  We get him dressed and out of bed to start eating for a bit.

At 10:30, he's supposed to visit with his classmates, but we've had a hard time getting the connection at school to stay on this year.  So, sometimes he sees them in the morning, and sometimes he rests until 10:45.

From 10:45 - 12:15 his teacher comes and teaches him.  Right now I get up every few minutes to reposition the switches on his chair so he can access his computer.  Since having to make his chair larger, the switches aren't in the right position and his arms just rest there...causing frustration for everyone involved.  He will finish up with school, and then his friends will call at 12:30 for reading time.

At 1:00 he has Physical Therapy, with a new therapist who hasn't been to see him in 3 weeks since the initial meeting.

At 2:00 he has Speech Therapy, which is canceled today because his therapist is sick.

As soon as we finish up with speech, big sister gets home.  Then the afternoon hubbub begins.  Then time to make dinner.  Then give Max a bath.  Then his nurse gets here for the night.  We help get him tucked in and it's 10:00...finally time for me and Steve to sit down and relax beside each other.  For living and working in the same quarters 24/7, it's always 10:00 at night before we have time to sit down and unwind.   Steve goes to sleep before I do most nights, and I tend to stay up until midnight or later catching up on emails, updating calendars, preparing for the next day,  unwinding my mind by reading or watching a little bit of tv.  Then sleep while the nurse takes care of Max waking every hour or two until we start it all again.

There is no real down-time, and it certainly feels like I'm never getting everything I wanted to finished in the day.  Because of that, I keep pushing updating Max's blog to the bottom of the list.  But, I want to write.  I want to update on how he's doing for you all.  And for us to go back and see.

All of this to say, Max is good.  When Max is good, it seems life takes over.  And that is a very, very good problem to have.

Max enjoying the little flowers at the Botanic Garden

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