SMA Awareness Day 8--Cashel and nights

Love this one!  Cashel Gardner is a young man with SMA type 1 like the boys have.  He is about Casey's age and has become an inspiration to thousands, and I'm not kidding when I say that!  He has a Facebook page: SMA it Forward with Cashel and has over 15,000 likes.  Many of these are SMA families but many of these Likes come from people that he has reached through his page.  We owe a lot of SMA awareness to Cashel and his sister (who has SMA as well) and family.  Thank you, Cashel!  If you are reading this, and don't know Cashel, please visit his page and like it!  PS  Cashel has very little movement and it takes him a long time for him to type things but he does it ALL on his own!  I hope that my boys will some day be able to do this as well as Cashel does.

The boys played some board games.  Per Casey's request, they played the Disney version of Sorry.  He's been really using his language to make his needs/wants known.  He found the adjective "sorry" and used it in the context of the game and found Disney and put it together.  Proud of him!

Night time:
The boys have their night time routine.  Once their night care is done they get a book.  Usually we have a chapter book going that either Gene or I read.  Gene finished the second book in the Percy Jackson series with them recently and right now the boys and I are reading Wonder. 

We give a last mouth suction, get the boys comfy with an ear pillow (doughnut shaped pillow so their ear can go in the hole and not get too much pressure on it), a pillow behind their backs for support (they are side sleepers) and a pillow between their legs to keep their hips inline. Casey holds Cowie and Mrs. Talley the Moose (if Mrs. Talley ever reads this, the moose is from when the class went to the capital in 4th grade!).  Colin holds Gingy the Gingerbread man.  These are comforting to the boys but they also help position their arms and hands.

On the nights we have a nurse I have a baby monitor by the head of the bed.  I ALWAYS have it on (and we have one in the kitchen, too).  Believe it or not, I couldn't sleep in our house if it wasn't on.  Even when I nap during the day it's on.  Throughout the years my brain has perfected using the monitor to know when the boys are okay and when there's an issue.  My brain can distinguish between routine beeps and when there are so many beeps that I need to pay closer attention to listen t what's happening in the boys room downstairs.  My brain also listens to the little noises that the nurses make when they go in to turn the boys or give meds or water or food, put braces on or take them off, or go in just to check on them.  Each nurse has tell tale sounds that they make--not kidding. The boys are pretty stable at night and it's been a long time since we've had a real medical issue that I've had to go down and help with.  A couple of times I've had to go down to calm one or the other down because they were upset about something--usually wearing their leg splints or maybe they're not feeling good. 

I do sleep though, I sleep best in the earlier parts of the night because Gene usually stays up late so I know he's got his ears on, so I can tell my body to sleep deeper.  When he comes up to bed I pretty much know that I'm on call and will adjust accordingly.  He sleeps pretty hard once he's asleep.

On the nights that I'm 'nurse' I sleep in the boys room.  We used to take Casey's mattress from his other room and put it on the floor for me to sleep on.  Then I moved into their beds when when they were connected in a L shape.  Now that we have hospital beds I can't spread out between the beds so it's awkward to sleep with them.  I've graduated to a blow up mattress which seems to have a leak in it--gotta work on that!

For some weird reason, they like when I am their night nurse.  Casey gets excited and Colin says "yay!"  I usually snuggle down with a book or a magazine and I have my head lamp so I can read (we keep on small light on all night so we can see a bit).  On a good night I get up and flip them maybe 5 times each.  On a GREAT night, maybe 3 times each.  On a horrible night it could be up to 20 times a piece.  Up from the mattress, do my thing, get back down again, up again, down...it goes on. But, I really do like it, except for the times I have to flip them so much that I want to cry, which I don't do, but I want to :(    I usually make sure to take a nap on the days that I know I'll have them so I can take the 'edge off.'

Sometimes Moxie sleeps with me all night.  She can be patient when I have to get up and down--she's kind of like a dog that you move over a little and will just keep on sleeping.  Other times she gets pissed and gives me a look and sashays away and I don't see her again.  Nugget sometimes comes in an wreaks havoc by batting things off the dressers and sliding around on the floor.  Sometimes he sleeps in the chair nearby and ignores it all and sleeps all night.

Jaxon is a good sleeper.  We have a crate in the yellow room (attached to the Wish Room where the boys sleep).  He sleeps in his crate and doesn't make a fuss even if I'm in and out of the room. Gene sleeps on the couch and tries to get his Zzzzzzzs.

So that's our night around here!