Manic Monday and Her Enemy Time.

I hear Rylan yell.

Open my eyes and look at time....6:30. Shit.  

Jump out of bed and go check on him.

" Good Morning Rylan!" Those Beautiful eyes look up at me and then at the television. As in "Good your here turn on a cartoon".   I miss those days when was actually excited to see me.

So I turn on "Barnyard", change his diaper, and let him know Mommy needs just a quick cup of coffee and ill be right in.

No sitting and enjoying that magical beverage for me.   I have to chug it and get him up, the time he needs his epilepsy medicine is fast approaching.

I finish my cup and start his morning routine.  He is cracking up laughing.  Good he is in a good mood.

As I am getting his shower ready, Steven wakes up.   Says Good Morning and travels outside to have that Morning smoke.  I get Rylan in the lift and into the shower,

Now Rylan's shower chair at this moment is a joke. It is unstable, has no straps to lock him in, and is quite frankly getting too small.

Yet we can't get one because the insurance companies deem it "Unnecessary".  "Why can't he be sponged bathed?"  Fucking really? I am supposed to give my adolescent child a Spongebath? Everyday???   It's like they fail to recognize that just a few years prior they paid for a damn remodel of our main bathroom to make it a handicapable for him to roll into the shower with ease? Now they want him Spongebathed?  ARGHH!!!!! He is one of few kids that get bathed EVERYDAY! I can't not bathe him........He is a boy.....hitting puberty, that wears a diaper. There is nothing that sticks to your nostrils more then the scent of "balls"....I mean seriously its gross.

I am currently on the mend of a back injury that was worsened by said "Chair".  I went to wash his back one morning and he fought back tipping the chair....so I had to play super mom and stop an accident ready to happen.

Anyways....now that I lost track of the story at hand..oops.

I got Rylan in the shower,  He of course is super excited, moving all over the place.  So I of course am freaking out trying to hold him in place and lock the wheels. Freaking out he is gonna roll right out of it.....

 Get him out and dressed and Steven assists in getting his treatment going.   I figured this would be a good time to try and go for a run with Lucy before it got too disgustingly hot outside.
As I am out with her Listening to the Alt Nation countdown on my phone, My run is going good...I am thinking what a good day this will be.   That was quickly shut down by the realization that i am huffing and puffing feeling like I am running super fast only to see my dog speed walking.... Screw that....I stopped running and walked back with her.

When I got back in it was after 8 so I put in a call to Rylan's nursing agency.  Thankfully they are sending a new nurse out this week as his current one feels any interaction with him is out of her "job description"

To confirm the nurse will be coming for sure she wants to call me back.... Ok.

Well while I drink my protein, I decide to call the lift folks and see how I need to go about getting a bigger sized sling for his lift.   Well I get to wait for a call back from them too.

 I finish my Protein shake only to run to the bathroom for the oh so glorious "Protein poop".  (don't judge you know protein makes you poop too.), then a shower.  When Low and behold my phone rings, thinking its the lift people I hurry and answer. Literally stumbling out of the bathroom trying to grab it before I miss it.    Seriously I know my Special Mom's know that when your waiting for a phone call sometimes you gotta drop what your doing and grab it...otherwise its another battle and waiting game to get a hold of anyone again.

I reach the phone in time to discover an Arizona number....not the lift people. But the nursing people.
I answer......confirmed, we meet the new nurse Thursday at 11.

Ok.....well Now I need to get my ass in the shower.  I start the shower, phone rings again.  Still not the lift people but it is an unexpected call from The Children's Clinic. Awesome we get to go in for the new elbow splints tomorrow.

I jump in the shower really quick, get dressed and...oh you guessed it....the phone rings again!

The Children's Clinic calling back because Rylan's therapist requested we stay late on Thursday and do his braces then.  Not thinking of the meet and greet I just scheduled I agree, only to realize the New nurse was coming that day and we live an hour away 9 am therapy will get me home close to 11.  so Yeah not gonna happen.  So I call back and get that rescheduled.

Today I normally try to fulfill the Laundry part of my domestic duties.   So I start that.  Steven decides it would be a good time to work on Extending Rylan's head switches.  This is when I am truly grateful to have such a handy husband.  Using the Kydex we ordered he was able to make some awesome extenders that will be able to extend even more!

.

Pretty creative right?

He ran to get what he needed but forgot Velcro. 

By this time I started Rylan's arm braces, I came back remembering forgotten velcro so one of us Needs to go.  I do know it sucks to have to turn around and go back out SO I did it for him.  After all Rylan needs his talker.  

I get back home and pull into the driveway.....Phone rings again.  New DDD case manager reminding me of the meeting.   Yeah your supposed to be here in an hour and a half. I didnt forget. 

Steven switched Rylan's braces while I was gone so I had a good 20 mins to get laundry changed over.  Steven went in the garage to drill holes and I continued my Domestic duties...... I start the  new load and Steven and I put Rylan in his stander.   We grab a bite to eat and Steven decides to go back out into the garage when something stops him......

Water. Lots of water. 

.

Our Laundry room was flooded and it was making its way to the kitchen.   

Now this happens when Rylan has about 5 mins left in the stander, and the DDD nurse is parked outside our house. 

I grab towels, Steven puts one towel down and realizes, that isn't gonna do Dick.  There is too much water. 

So he grabs the shop vac and starts sucking up water, meanwhile I am trying to help Steven while watching the clock and Rylan, as Well as checking the door to see if the nurse came up. The Damn Shop vac was sooo loud!

.

We get the water cleaned up just in time to hear the doorbell.  

Time for the meeting. 

Steven helps get Rylan situated and fed.  I tend to the 3 women that hold Rylan's care in the palm of their hands. 

Thankfully I like all of them! 

The only thing that now leaves me uneasy, is it was suggested that because he has been hospital free for a year he goes back to school. 

Man. I am really on the fence about this one, I think he has had so much progress and been so healthy.  I am really freaking out we are gonna back track. 

They seem to think he is older and stronger and will do fine. 

*deep breath*  I guess he is gonna go back to school.  But half days to start.   

Now I am anxious about August. Yes the entire fucking month. 

He will get his eye checked out and be around nasty snot monsters.  I am unsure about both outcomes. 

Now that stuff is complete and I was able to finish my last load of laundry without a water explosion again, I feel like I can relax. 

But No Rylan wants to have a meltdown.  

Is it sad I need a drink?

All in all I felt like I really didn't do a lot today, but what I did do took fucking forever.   I seriously Can't wait to go to California to see My in laws....and the beach.   Kinda feels like it will be a much needed breather,  

But for now we get to prep for Amaryssa's return.  Till next time!