Monday, April 21, 2014

Coming together for Max...

On Saturday, group of local musicians came together for Max, to donate their voices and talents to raise money for Max's medical expenses.   We're completely amazed at the outpouring of support for our guy! We are going to be able to start construction soon on Max's bathroom and lift.  We're still working on getting him in and out of the house easier, since we have steps at every doorway into the house.  We're hoping to get this piece of robotic amazingness to make that a reality.  The way our house is set up, we can't do a ramp out front, and we would have to cut into the foundation to do a lift up on the porch. The ramp we have in the garage right now is too steep and the winter snow has showed us again how inaccessible the alley behind our house is when it snows.  The scalamobil will attach to his wheelchair and "climb" him up and down the stairs.  

Indeed, all funds we're raising will continue to go to the expenses for Max's care.  This includes keeping up the maintenance on his 9 year old wheelchair van.  Of course, any funds over the amount we need to do the lift, and equipment, and maintenance on his van will go into his special needs trust. This will allow us to pay for his expenses in the years to come. 

Now, back to the concert!  Saturday started as a weird day for Max.  He woke up with a big headache.  He cried, and moaned most of the morning.  I got him calmed down by closing all the windows, drawing the curtains, and turning the lights off.  He finally went to sleep and woke up a couple of hours later to a rain-shower, and is headache was gone.  

We headed to the Laurie Maves art studio and were greeted by the wonderful Angie Stevens and Laurie Maves.  Laurie's space was the perfect venue, and I loved looking at her art all around. (Check her website out...her art is so lovely!  I especially loved the poppies!) They were setting up the final touches on the stage, and then we got started with the music, as people were still showing up.  Max was happy to see his friends from school who got to come with their parents, and loved every minute of the concert(s).  He had to go out to his van a few times to reset, then would come back in for more. Steve would ask him each time if he needed to go home or if he wanted to go back in, and each time he wanted more music!

This is how the night went...
 Little cousin Addie taking Max up front to dance with KK playing. 

Listening to Angie play. Thanks to another attendee, for taking this photo and sharing on Facebook. 

Dane Olsen got up for his set.  Max sang along to every note. 

Dane and Angie performing together. 

Aubrey Collins sang her heart out. 

Melissa Ivey got Max singing along and dancing. 

Angie sang along with Seth Larson, it was some kind of beautiful.

The whole group got up to sing together. 

And got together for a group picture with Max. 

Angie asked us to say a few words, and Steve did a wonderful job of expressing our gratitude to everyone there. 

Aubrey Collins joined Ryan Chris, Seth and Josh Larson, and Melissa Ivey in the back playing percussion.

Seth and Josh Larson added vocals to Ryan Chris, Bradley Weaver on the little steel guitar...Max really liked that. 

Ryan Chris playing one of the last notes of the night.  

Us with Angie, who has a heart of gold and put this amazing event on.  (Thank you Ryan Chris for getting this photo and posting on Facebook)

Thank you to everyone who made this incredible night happen.  We were able to raise about $2,500.   Thank you to all of our friends, neighbors, family, Max's music and speech therapists and schoolmates who came out to share the night also.  And a big thank you to everyone who showed up to hear these wonderful musicians and left a bit of their love there for Max.  Please look up all these musicians on Facebook, and online. Go to their shows, show some love back to them for sharing their talents with Max.

Wednesday, April 16, 2014

Happy Expressive Wednesday...

I can not get enough of Max's smiles today.  He's been so happy, and showing me lots  of grins, and chuckles and smiles.   Getting pictures of those smiles are always tricky.  But I actually got a few today while he was busy with music therapy.

Max wanted to do a lot of strumming on his guitar today.  After he and Ms. Laura played their guitars together, he got down to strumming his guitar with his hands wide open.  It's a lot of work to get those long fingers uncurled and to work like he wants them to. 

In art today Max made four pictures.  He was very adamant on the colors he wanted, and was still very happy throughout.  I had a hard time getting photos during art because he wanted to use his hands for paint, which means everyone gets paint on their hands!

For his last picture, he wanted to "go to the park".  He chose green first, then blue sky.  We thought at one point he was finished, so his art therapist started to put it up.  He got to his color choices and said BLUE BLUE!  We gave it back to him and he added a lot more blue and was then happy with his picture. 

His last picture was a water color.  He started with a lot of blue, then some red. Then yellow, then green.  He pulled his hands away and said he was all done.  Then he told me it was for B (B is his speech therapist, he always just calls her B instead of her full name.)

 I told him I sent a picture to B, and asked if he wanted a picture with him in it too.  He looked up at the camera for a photo for B with the painting he made with her in mind.  We will see tomorrow if he's going to give it up...he's likes to make pictures for people, but rarely gives them away.

We ended his happy afternoon over at the construction site where the diggers were hard at work, making a terrible bunch of noise. Which is his favorite bit!

Now, I'm going to go and enjoy this happy boy the rest of the evening.

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