Popping our cozy Bubble

I LOVE Rylan's Pulmonologist.  She has NEVER in the 10 years of Rylan's existence led me wrong.

So 3 years ago, when she told me Rylan wasn't gonna last too much longer, I of course went into a panic driven, anxiety filled fog.

So we then Homebounded.  Steven and I created this germ free, safe bubble.  We stayed away from nasty little kids and sick people Everywhere we went.

It seemed to work, Rylan stayed good.

She wanted me to wean him off meds......ok.  I stayed positive my boy was good.

SO Fast forward to today I kinda felt on top of the Special Needs Mom world.  Rylan hadn't stepped foot in a hospital in a long time. His spastic muscles are under control due to my tenacious behavior of keeping him stretched.

Life is awesome.

Then we go see the Pulmonologist. You hear that sound....yep, that would be the faint sound of her stomping on our bubble.

She was impressed, Rylan was doing so well.  BUT encouraged him to be back in school.

"He needs to get sick, build his immune system" she says.

Fuck.

Steven is on board.  Agreeing with the fact he really does need to get that immune system up there.

So we discuss him going back to school.   If my stress were measured on a meter...by now Im hanging in the red zone.

In all agreement we figured to have him homebound for the month of August due to going under at UMC toward the end of the month and we need to keep him good.

But as I thought about it, how odd would that be?  Him coming in a month after everyone has already started.   He deserves to be there day 1 too.

So I made the very difficult choice to send him to 5th grade.

School starts Monday.

It's Thursday.

I just plopped a big ol' glop of more stress on my lap.

So Steven and I go to the school to talk with Sherry.  She has been the amazing teacher that has done all the Homebound schooling with Rylan that last 2 years.  So we built that trust.

She showed us the whole school and went over a lot of  what they do.  I made sure to cover all my concerns with her, the aide and the teacher.   Making sure there was extra emphasis on watching his health,

Steven suggested to just have Rylan go the entire day,  As half days were an option.  I like his mentality if your gonna do it.....go all in.  Meanwhile I am freaking out.

We left the school and ran to Walmart to get him his uniforms and school supplies needed.

We get home and I have a text from Sherry saying we need more paperwork and bring all the necessary documents needed to get him registered.

So we head up again.  This time its just me and the kids.

I fill out what I could and Sherry takes Rylan to introduce him to everyone,

Rylan seemed happy. That makes me happy.

By the time we leave the school I am exhausted from stressing about this transition.  I know we will see the inside of the childrens ward this year.  But when?

On the way home, my phone rings.   I am thinking its a bill collector so I was hesitant on answering.  But I did.

It was a Case Manager from United Healthcare.  What the fuck?

She is calling to see if I was satisfied with everything.

I have 6 denial letters for a bath chair because your company thinks he should be sponge bathed. No im not fucking satisfied.  If anything I think you guys suck!

As she apologizes to me for everything and wants to help, the line goes dead.  I look at my phone.......it fucking decided to restart.  Are you KIDDING ME?!?!??!

Once it boots back up I go to my call log, and the number isn't there.

Yep....this shit only happens to me.

I get home and throw Rylan in his chair to feed him, get his bed made, put his leg braces on and make dinner.  

The United HealthCare Lady calls me back...not trying to help me but Trying to promote herself as an advocate.  Thanks Bitch but I got it.

I am tired. I am desperate for a break.

I know so many stay at home Mom's that love it.

I gotta be honest I dont.  I spend everyday not stopping. Don't get me wrong. I am super thankful to be able to stay home and give Rylan the care he needs.  But much like Everyone else who work for an employer...Everyone gets a vacation day or 2.

When you stay home to care for your Special Needs kiddo...you get nothing.  I get up ,and if I am lucky I can drink all my coffee before I get to work getting Rylan up.  This goes all the way till I go to bed.

So I am crying (not literally) but I am whining and I am tired......I WILL be a little kid stamping my feet.   I want a day....just ONE day where I reset and recharge.

I don't see that happening anytime soon.  So I shall press on.

But this has been a lot of shit lately,

All I want is a strong cocktail.  is that bad?

I Wear Stress for my Summer.

Deep breaths.......it wont be too bad.

I step onto the scale.

I look down.

Well this sucks.

How could I have let this happen?

Stress,  Thats how.

I stress in the morning, noon and night.

I stress about Rylan, why is he waking up crying? Seizures?  Why is he twitching in his sleep???  Seizures???  Why is he staring off into space?????  Why is he so tired???

I even Stress about Steven.

I stress about the situation with his ex wife and all the motions we still need to file against her.

Yep.   That is why I got fat.

I go through stages of liking who I see in the mirror and days when I don't.   Such a silly cycle of life.

Yes I do what I can to try and work it off......

Here lately Rylan has had the sleeping schedule of a newborn.  So on an average week I am running on NO sleep.

Steven always tells me "You do not HAVE to get up every time he makes a noise"

Yeah yeah I do.

I wake up when a damn mouse farts how am I, in good conscience going to just lay in bed without checking on him,

UGH!

Plus side is Amaryssa's presence has helped me keep my mind off the 50 million things I stress about daily. I will admit it has been nice to have someone to talk to everyday.

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Due to the fact I do not remember what life was like prior to stressing about everything. I have been working on ways to control it.  Such as pouring myself into my piano. Telling you, it does wonders,  Amaryssa even asked to learn....I would like to think I "Inspired" such fantastic thoughts.

This last Friday when I went to check the mail the was a letter from the school district.  I normally dont open them as typically they are something totally useless to me.  I don't know what got me to open it, but I am glad I did,  Reading the letter sent I learned Rylan's school starts earlier then I thought,  2 weeks earlier. 

Stress!!! 

2 weeks......We don't even see who we need to see for Rylan to be Homebound again, Until the end of July,   School starts that Monday.  If I don't get the letter early enough and over to the District office in time......I may have a lot of difficulty keeping him Homebound. 

Steven and I discussed the possibility of Rylan doing half days.  However if we do so he is going to be super compromised for when he has to go under for his eye evaluation Mid August.  You know the one I am STRESSing about?

This Summer though was super fun.   I would like to think this is the summer of Family,  

Over 4th of July weekend we traveled up to Murrieta, CA.  To see my In-laws,

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Whenever we take a long trip Rylan sits in an actual seat in the car, not his wheelchair.  Due to his good trunk support this is possible.  

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We do try and make it as comfy as possible too. 

Having him sit up in a seat helps as well because it allows me to crawl back and do his feeds on the road.  Let me tell you something...nothing and I mean absolutely NOTHING tests your coordination like trying to pour liquid into a tube while not spilling it everywhere, when you are on the road. 

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6-7 hours later we arrived.   This was our first time seeing the new house since they moved.  Steven and I were beyond happy they are now in a one story.  Not only for them but for us and Rylan too!

In the main bathroom, they have a safety tub.   Steven and I thought this tub was going to be epic.   We thought it was a dream, we would be able to bathe Rylan with ease,

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This tub was a fucking nightmare. 

The morning after we arrived we tried to bathe him.  Trying to get him in wasn't a treat.  as there wasn't a lot of room.  We got him in, then due to the lack of space, Steven tried to bathe him by leaning over the tub. 

This was hard as there was no where to lean his head to wash his hair.  SO we had to work around that....then as Steven was done and went to get him out, I see Rylan slip down fast.  My heart went into my throat.  Thankfully Steven still has some quick reflexes and grabbed him before Rylan got seriously hurt. 

So the next morning I stood in with him.  Got my clothes drenched.  But there was no potential accidents.  

You gotta do what you gotta do right?  

While in California we took over the house.  Rylan's medical equipment was everywhere. Not to mention the constant moving of furniture to accommodate his chair.

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It was fun.....and I am not gonna lie. Steven and I fell in LOVE with Murrieta.

On 4th of July, we went to the March Air Museum.  What a great way to celebrate our country by learning a little but of history right??

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Then we got back we enjoyed a wonderful family Bar-B-Que. 

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Rylan's gotta have some too!!!! 

We went home the next day.   But it really was an enjoyable trip.  Since Having Rylan in school at home, it has been nice to do these trips with less anxiety over his health. 

Since getting back from California, Steven and I enrolled Amaryssa into dance.  We thought it would be beneficial for her to work on a skill while she is out here.  She is super talented and we are hoping she could work on it enough to get a potential scholarship for school after she graduates. 

Waiting for dance to get out

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It is just sad though because she is robbed of doing the things she loves because of her Mom.   you know that 1000 dollars a month I mentioned before that my husband pays for child support???  She can't take any dance classes, was told she can't do cheer anymore.....oh and We had to buy her clothes because she doesnt have any that fit. 

Because of this and the lack of support to help set her up for her future led Steven and I to start considering fighting for custody.  

Meanwhile while we add this Stress, I am still Stressing that we can not afford the bath chair we desperately need for Rylan. 

Steven was diagnosed with a form of PTSD from his time in the service, so needless to say with all the added stress between us,  I gotta be careful around him, and not contribute to an "episode".

He was getting help....so that makes it a little easier. 

This article is literally just scratching the surface of the Shit show that has been my life here lately. 

The last time I mentioned a little of what has been going on to a friend......he bought me a shot.  

I look at the calendar now, and see the moment of truth about Rylan's eye is around the corner and I am scared. 

A couple of weeks ago when one of the many talented ladies I know agreed to do some family portraits.  I scheduled for just my household as we had a family portrait above the couch of Rylan, Steven and I. Since Amaryssa was here we could finally get a full family one.   When I told my Mom she wanted to jump on board.  

Hey why not?  The last time she had pictures done with us, I believe I was 16.  Now she has a son in law and Grandchildren.  I let my friend know and she was ok with the extra people.  I can tell you.....Mrs. Hoishman does great work.

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All in all I feel like eventually the storm will calm.  I will calm. 

I may or may not be skinny again. I have to learn to love myself.  

But until then I am thankful to have my family to talk to and drink with....because I do have a pretty awesome family.

Pretend Disabled.

When Rylan was first diagnosed in 2005, It was encouraged for me to go apply for SSI.

I never liked getting "assistance" as I always like to view myself as an independent girl.  In my head I was "SUPER" Mom, I was doing this all on my own.

Rylan's pediatrician sat me down and expressed the severity of what was in my future and really pushed for me to get the help.   As a single Mom at the ripe old age of 22, I caved. He was right.....how was I going to do it all?

So I applied for SSI (Supplemental Security Income).   It did help me get some of Rylan's medical bills paid.  It also helped for me to go to school.   All I was thinking about was our future, I opted to enroll in beauty school as I knew it was a job with the potential to make a living while having the flexible hours I needed to care for Rylan.

I spent a good year living off of Diet pills and energy drinks to keep me going.

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I had a schedule of taking Rylan to school at 7am, picking him up and taking him to whatever therapy or appointment he had,  Leaving him with my Mom to go to school by 5, get out of school around 9 and work until 2 am getting home and in bed around 3 to start all over again the next day,

Then Rylan's condition got worse. 

All from one day that still haunts me,

I woke up one morning to my little boy seizing in bed. 

Due to my hectic schedule I made the choice to move back in with my parents.   So when I realized what he was doing I yelled for help. 

Both my parents came running in to help. I called 911. 

As I was on the phone with the operator.....My Mom yells with panic "Jenny tell them to hurry! he isn't breathing!!! He isnt breathing!!!!!!"

I tell them, and My Mom tells me to go outside to wave them down.  It is only 4 am at this time and super dark.  So I do.  They show up and Rylan is breathing but passed out and basically a rag doll. 

They rush us to the hospital, and get us admitted in no time. 

As we were in a room Rylan was looking very tired.  They came in to do an EEG.   When the tech got what seemed like all 20,000 wires on him, he began the test.

Not even a minute into it, Rylan rolls to me, smiles, and begins to seize again.   I remember the feeling of heart break.  I felt so helpless.   The tech hits the assist button and Rylan's bed is surrounded by nurses and doctors.  I am pushed out into the hallway.  I was alone.   That was one time in my life I really needed a hug,  I remember the fear.  Even as I write this I feel the tears brimming. 

Once he stopped seizing They put Rylan in a heavy sedation and took him for a cat scan. 

We were back in the room before too long,  and it was like we had an Angel on our side because the Neuro Doc on call was none other then Rylan's doctor.  

Another thing that was on our side was that the entire seizure was caught on EEG.  After talking to a few other friends whose babies have this awful disorder, I learned that, such a catch is rare.   

So after looking at the EEG, Dr. Talwar Diagnosed Rylan with Generalized Epilepsy.

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SO basically he has them and they do not know why.    Awesome.     So since then we take EVERY precaution.  Because anything can trigger.  

Let me tell you it is SUPER fun to live life always feeling like there is doom around the corner.  

After a few days we were able to leave the hospital, and I now had to change the way I did things, for him.

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That day was the beginning of my new journey with whom I would learn to be my incredibly medically fragile child,  BUT I was gonna give him as normal a life as possible. 

But then I missed a lot of work because of his care.  I wasnt making the money I was making to keep Rylan's needs up so I let my stuff go.   I ended up not making enough money one year to file taxes.   Because of this, the case manger at Social Security called me to let me know my benefits for Rylan will be stopped,   

So let me get this straight........Im a single Mom, struggling to make ends meet for my son, so your going to take away the only help I had for him.   Awesome. 

I then had to quit school so I could work different hours that also worked with my Mom's schedule as she was helping me with him, 

Shortly after I met the Man who would become my Husband.  The man who openly wanted to take the title of Dad to Rylan. 

I still tried to work, when we moved in together.   But then Rylan ended up hospitalized with a nasty respiratory and GI infection.  Judge all you want, but I flat out refuse to leave my son alone at the hospital.  My non-verbal child.  I dont think so not gonna happen. 

But I did call in to work and supplied them with all the proper paperwork from the hospital so they knew my absence was legit. 

But I was let go shortly thereafter. 

Then Shortly after that Rylan was hospitalized with RSV

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So thats when Steven and I decided it would be best for me to just Stay Home,   since that decision we have had numerous stays in the hospital.  As well as our first looks in the ICU, 

Between Treatments, feeds, braces, appointments, it does make life easier.

When I tried to go ahead and apply for SSI again. I was denied because Steven makes too much money,   Even though his ex-wife takes all of it. 

No I am not a bitter current wife. She really does.  As of right now my husband pays 1000 dollars a month in child support for the one child him and her had.  She also gets 500 dollars of his retirement.  Believe me now?

Here is the BIG kicker.  

She claims she can not work because she is "disabled".  She gets SSI. 

But she has the ability to consistently harass Steven with court. Then Claims she is super Mom taking Amaryssa to all her cheer practices and competitions.  

That sounds like all the traits of someone capable of working if you ask me.  

Then our neighbor.  Retired Military,  Recieves VA compensation and just fought the system to get 90% disability.  Gets Military retirement. Spends his weekends at his home in Mexico. What is he doing.....getting ready to receive SSI as well. 

Then the woman formerly known as my Godmother.   She never worked because she was living on disability.   She spent her days on Facebook. trolling pages. 

Yes I know there is a difference between Supplemental Security Income, and Social Security Income. 

It just seems unfair to me that people who show they have every ability to work, live off of the government. But my Husband and I get to struggle at least until Amaryssa turns 18,  

Just seems a little unfair, 

So now I face the struggle......leave Rylan's care in the hands of others and try to work? Which will be difficult being I only have enough nursing help that covers a day and a half.  11 hours a week, 

Or Stay home and try to figure out how to get the things Rylan needs.  As a Special Family We are alone. 

Father's Day Weekend

Father's Day......the one day a year all about Dad.  

This year for Steven, Father's Day was a little more special.   He was able to spend it with BOTH of his kids.

But before I get into that, we have to start back on PT day for Rylan.

Every time we go to the Therapist, She always starts him off stretching. Makes sense as they recommend stretching before every workout.

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He was not feeling therapy at all.  Honestly I do not blame him. I NEVER want to workout.  As Danyle was putting him to a stand. he really started to give her a hard time.  When we heard one of the other therapist with another child out in the hallway,   

The little mat/bed she had Rylan on was directly in front of the door.   Suddenly Rylan laid his eyes upon a little beauty with long brown hair. Doing her therapy exercises on one of the pieces of equipment.  Suddenly Rylan's testosterone kicked in and he changed, I have grown to know Rylan and his Bipolar, hormonal ways.  Danyle has not......so needless to say watching Rylan bat his eyelashes and giggle at the little girl made for great entertainment.

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Ill be honest when I found out Rylan was going to be "special".  I never really thought that on top of all his other needs he would go through these changes just as powerful as any typical child does.  It makes for some very LOOONG days. 

When we were leaving therapy it was brought to my attention that our absolute favorite nurse was having her baby!  Yeah Ill admit I spent the majority of the day stalking her Facebook looking for updates.  

When Steven came home later that night, She had finally had an adorable baby boy.  I had to go meet him.  So the next morning Steven stayed home with Ry and I went up to meet Baby Brayden,

Isn't he soo beautiful?

As I was leaving the Hospital, I of course had to get back to work.   Because NOTHING happens the way it needs to.....I am forced to have to call Rylan's nursing agency to follow up with them about getting a new nurse since we requested the last one not come back. 

Of course they have NOTHING.  So I made them a deal they have till we get back from California 4th of July weekend to get me somebody.   

I am pretty sure NOTHING will still be the story when we get back,  So I am  gonna have to get all psycho mom to get the Job done.   Why can't they just make it easy?  Just do the job?

Saturday Morning we all woke up nice and early. Because we needed to be to the airport, before 9, because...Steven's daughter Amaryssa was coming to visit for the first time in 3 years,  3 YEARS!!!!  We missed her!

Steven tried to act all nonchalant about it. But you could tell, he was super pumped!

Rylan on the other hand........was not feeling it. (Shocker, I know). He was giving us nothing but difficulty the entire morning.

As we were leaving the house I ran straight into the kitchen table and jammed up my toes on my right foot. Awesome.

With my foot in a lot of pain, I drove us all to the airport.  We got Rylan and went in to wait.

We were sitting in one of the airport lobbys waiting for Amaryssa to come down the stairs.   It was oddly quiet.

We continued to hear the announcement the airport plays welcoming passengers, yet we saw no one.

My phone dings it was Amaryssa saying her plane landed early and she was here,

We decided we needed to look for another lobby,  as we were walking down we noticed a large group of people.  Well that is where she probably is......

We got to the lobby just as she was walking down the stairs,   Whew!

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This girl has grown.   Damn. 

Once we got her luggage we headed out.   Rylan was all good till we got home.  Then he was losing his mind.  I don't mind him being in a bad mood.  However he has this whine he does incredibly loud that hits a certain level where it rattles my nerves.  

So I suggested the pool.   Steven agreed and went to blow it up.   as we were waiting on the pool we got to see how much Amaryssa has blossomed in her dance. 

ouch!

When the pool was ready we got Rylan in which perked him up.  But the pool needed to be cleaned. It was hard to enjoy yourself when all you feel is the nastiness of sliminess on the bottom of the pool.  So we all got out quickly.   

Since that was out Amaryssa and I ran to WalMart.   

On the way back she drove my huge ass van

pardon my berry tongue

I know this may not seem like a huge deal, but she is only 16 years younger then me!  I still feel like I am 20.  So when she shows up with the ability to drive, I cried a little on the inside. I almost have to force myself to acknowledge that NOPE I am 32, with a 10 year old and 16 year old. 

Later that night Steven had to leave to take the neighbor to the ER.  Yep were all super friendly and shit, that our neighbors rely on us.

So I cooked dinner for us.  Well me.  

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They all passed out on me!  I couldn't wake them up.

Oh well Dinner was DELICIOUS, 

That leads us to Fathers Day. 

Steven was up at 5 am...Why? 

To go golfing with my Dad and Brother of course! 

I was excited because he hasn't been in so long! Why the early t-time you ask?  It was gonna be almost 110 degrees.  Get the golf done early!

While the boys golfed My Mom brought my Niece because We were gonna make a nacho buffet.  

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It was nice.  Amaryssa shared with us some of her dance routines, making Jayde fall in love.  SHe followed her everywhere.

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It was seriously so cute to watch how much she loved her.  Then it dawned on me I had a pic of them from 3 years prior.

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We had to remake it of course. 

I felt a little bad for Rylan though.  He seemed like he wanted to play with them too. But of course couldn't. So I tried to hang out with him and keep him happy

what felt like a good 6 hours later the boys came back.  We finally could eat.

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My Mom makes a mean nacho.  

Sits like a rock in the gut.....

But it is sooooo good! 

Once our Golfer Dads finished eating....it was all over.

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The rest of the family left later.  It was nice to see Steven enjoy a much deserved Father's Day,  I really wish he could have that day everyday with how hard he works. 

Later that night we had Family game night....We rocked a little Battlefield 3

To finish with some UNO!

Rylan pooped out on us!   

Needless to say it was a fun weekend,  Nice to be able to have my complete family here.   I get to learn how to be a Mom of 2 for the next month.  Learning how to be a Mom of an independent teenager who can talk back is an experience, as I am used to my Non verbal, relying on me for everything child.  

But so far its super fun.

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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!

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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. 

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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!