Back in the stander again

We're hoping to get Colin back on a regular standing regimen again.  It's tough when he has to get his academics in as well as stretching and other PT activities, oh my!

Colin on the ball

This morning Christina came to help Priscilla and I work with Colin on the therapy ball.  It went okay.  Colin wasn't thrilled but Priscilla gave him a choice of stander, belly on the ball or sitting on the ball and he chose sitting.

Here he is:

Oh, and we had taken some time off from the new 'Wisp' mask.  He had done fine with it for several nights and then one night I had to come down at 1 AM and switch him to one of his other masks.  I put it on him last night while he did his shaker vest and he wasn't thrilled but when I promised him I'd play an hour of Batman wii with him after school the next day he relented.  And, he had a good night!

 Here he is relaxing with his new mask and doing his shaker vest while hoping I'll let him just be and not start getting him ready for the day.

Casey had a good day today.  I didn't even know but they went out in the community today.  He was supposed to go with the kids yesterday but we had the snow day.  I didn't think that they'd head out today.  Oh well.  They got dropped off at the Burlington Square Mall.  One of the other kids in the program (a guy) hung out with him.  Apparently, he did some great driving.  Maybe having another student there motivated him--who knows.  At least he did better than last time he went to the U Mall and had a meltdown.  He drove most of the length of the mall checking out store fronts and heading into some stores. Of course, many of the stores are not very accessible.  Pottery Barn and William Sonoma were too crowded for him to go into.  One store he went in to and did a good job backing out, according to Nancy.  Good for him!!

Snow day!

First call came at maybe 5:45 AM for a two hour delay.  Went back to sleep.  Half an hour later we get the call for closing.  No more sleep after that for me.  Somehow the phone calls didn't jazz Gene up because he was able to sleep more :(  

Boys slept in until about 9:15.  Lazed around watching School House Rock. 

Casey had a shower with Julie. 

Colin was practically bursting with wanting to play wii.  Casey had no desire so he hung out in his chair with his DynaVox, listening to The Beach Boys and watching the snow fall.  Julie and Colin played some Sam and Max.  It took her a while to catch on but then they did pretty well.

I've been wanting to change Casey's g-tube out for a while now.  I discovered that we hadn't changed it since July 4th, 2012!!  We usually wait 6 months but somehow, the time escaped me.  Colin's was due, too, but he had a full belly so we decided to wait.

Nurse Julie did Casey's change.  It went perfectly and looked perfect, too!  Take a look!

Orthotics casting and measuring

Today after school, Deb came from Biomedics to do some casting and measuring on the boys.  Colin went first.  First came the AFOs (ankle foot orthotics--supposed to help keep his foot and ankle flexible and straight and not turned down).  This is not Colin's favorite part.  His hands and feet immediately became drenched with sweat and his heart rate skyrocketed.  At one point his heart rate hit 185!  This is not a good thing.  Immediately after the casting material came off he went back down to almost his normal; 110-120 something.  Next, she measured him for TLSO (Thoracolumbosacral orthosis-which is a back brace that is supposed to support him when he's sitting up or standing).  Instead of casting him for this, which would take a lot of repositioning and fussing, she makes dots on him with marker and then measures him.  He loves this part!  He wanted more and more dots.  He's funny that way.  Whenever he does art and gets paint or marker on himself he doesn't want it washed off.  The fun part is picking the strap and Velcro colors.  And, this time he was able to pick a colored plastic part as well.  They now have colored/decorative transfers that can be put on the main plastic part of the orthotic.  Colin picked some wild swirly blue and then some snake skin looking ribbon to go over the Velcro straps.  He watched some Batman on the ipad while we worked on him.  He half watched, half complained and half laughed the entire time.  He is a weird kid, lol!

Casey was next.  He was measured for new night time leg braces that help stretch out his knees. They have tension, which we can change, and get them straighter and straighter.  In Casey's case, we just hope to keep him from regressing.  He is pretty contracted.  He sits so much in his chair, that it's been hard to keep him flexible in his knees and his hips, too.  We can only do what we can do!  Casey immediately picked out the blue under the sea transfer for his braces.  It may look weird with the leg braces but the only people that will see them are the night nurses, lol.  He got blue camouflage ribbon to go with them.   He tolerated everything with minor fussing.  Deb is really very efficient and quick.

Now we wait until April 11th and she'll come and do a home visit to see how things fit.  We'll also mark the opening we want for Colin's g-tube and she'll take it back to the shop to cut it out.  She'll come back again to fit the TLSO and do a check up on how Colin's AFOs are fitting and how Casey's nighttime braces are fitting.

Neither boy had the best day at school.  Casey was loud and didn't want to do much work.  Colin was distracted and not into doing much.

Nurse Nancy won't be back.  Still out for her arm.  I don't think she'll be back until mid-April, after her vacation :(   We'll have nurse Brooke for the first two weeks of April, so we'll be okay...Colin will miss his Nana L though.

We're bracing for a snow storm tonight.  I may end up keeping Casey home from school tomorrow.  We'll see what the night brings.