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



Saturday, April 5, 2014

Expressive Max...

Max has been busy at work on his art and music this week.  And it's good, because he's had a lot of things to get off his chest.  We started Max on the testosterone injections this week.  Since his body will no longer be able to produce this essential hormone anymore, he will be on supplementation for the rest of his life.  It is something we're all treading a little lightly towards because no one knows how it is going to effect him; neither metabolically nor with his epilepsy.

The one thing we all know about hormones is it can be quite a ride of emotions.  This has certainly been the case with Max this week.  He's up, and down, and all over the place with his emotions.  But, it was a good week to have his expressive therapies because he let it all hang out with music and art.



Max played his guitar while Ms. Laura played hers.  She tuned Max's guitar to be in the key of C all the time, so all he has to do is strum.  I held it for him and helped him strum. 

Daddy came up for lunch and joined in by letting Max strum with his feet.  

Max was holding on to his tool he uses to help him write.  We found another use for it during music, as a way for him to strum and slide along the strings for another sound on the guitar.


I can't seem to get the recording of his latest song to load tonight, so I'll have to get it in another version and try again soon.  I think we may have enough songs for a new cd pretty soon.  He's always so particular about what he wants to play each week, and it's awesome to see him create.  

This was no exception for art this week too.  He wanted to paint BIG paintings this week.  We picked up some canvases for him to paint whatever he had in mind.  Ms. Molly gave him a big paintbrush and let him choose his colors.  He soon tossed the paintbrush aside and dipped his fingers in and a masterpiece was made. 

He ditched the paint brush and chose several shades of yellow.  For his second painting, he wanted purple.  Only we didn't know right away that's what he wanted.  We thought he would like a rainbow because he told us a lot of colors; purple, red, blue, and yellow.  He got his point across though, when he would only paint with purple, then red, then blue - and mixed them all together for different shades of purple.  At the end of the painting, he saved one little area to sign his painting with yellow.  












He was satisfied with his masterpieces when he was all done.  I asked him if I could have one and he told me I could buy it from him.  Like I've said...the boy knows what he wants!