Thursday, May 21, 2015

Somethings odd in the Jello was the yearly follow up on his eye.    Needless to say I was a ball of nerves.   I knew deep inside there is nothing seriously wrong with him......but my gut knew something was up.

I asked Steven to please come with.  Of course he requested the day off .

So come 12:00 the 3 of us head up to The Children's Clinic.  Where we were going to be meeting Rylan's new Eye Doctor, since the last one left something to be desired.

1:00 they call Rylan back.   I stay out because my anxiety has gotten the best of me and I don't want to freak out all the more.  

1:15 comes and they are still talking to the Doc.  My anxiety of course is taking over, so I get up walk around the clinic.   Sit on one of the hallway benches and lurk through Facebook, finally I just end up back in the waiting room pulling out headphones and turning on Hulu plus.

Steven and Rylan come out 5 mins later.   Rylan got his eye drops now we wait while they dilate.

Steven kept talking about how much he loves this new doctor and how she reassured he is fine.

"Come back Jenny, you will like her"
"Yes, I am sure I will but the next part of the exam is what I am really nervous about"
"Jenny, seriously he is fine come back"

So I go back.  As expected the new Eye doc was adorable and super sweet.  She does her exam, then it happens......

"So I did notice let me draw a picture."

(Hmmmm.....the other doc never did that...but shit.)

So apparently what was noticed on Rylan's eye was not on the Optic Nerve,                                             
He has something in the way back of his eye in the Vitreous Humor (which is like jello in the eye) BY the nerve but not on it.

At this point I feel like I am going to vomit,    What the hell is in my sons eye?!?!?

She wants to look more into because its not something you see everyday.

She tells me it doesn't seem to be active whatever it is.....that some inflammatory disorders can affect the eye more then others. Or it could be old blood. (BLOOD?!?!?!)  She wants to put him to sleep so she can get a better look.

She informed us that she would push on it, check the pressure, take photos, check the blood, etc etc.

Now getting more information from an intelligent doctor put a little more into perspective for me.  THIS must have been what the idiot we saw last year saw.  SOOO  if its been a year and it looks the same then there is a good chance he is ok!

She did say that it takes a LOOOONG time for things to leave the eye.  But again I am thinking WHAT THE HELL IS IN HIS EYE?!?!?!?!?!?!?!?

Of course we don't get a script until after they do the exam at the hospital.  I told her I am worried about him losing his eye or vision...(yep that is how dramatic I can be .....Steven deserves a damn medal sometimes) She assures me we are a LONG way from that.

But the overprotective part of me feels like she knows something but doesn't want to say until she knows for sure.  I tell Steven this and he looks at me like I have gone nuts,

Which I am pretty sure I have...but as Rylan's Mom, my main issues are......does he have an inflammatory disorder?  Blood in the eye?

Well,  I am gonna keep myself positive as my son in question keeps cracking jokes on his talker with his favorites being
 "Why is England the wettest country?"
 "Because the Queen has reigned for a long time"
"What is long, hard, and full of seamen?"
" A submarine"

Then my husband is dancing (like really dancing) to a song on the Barnyard movie.

It is hard to stay anxious for too long with these two guys,

Tuesday, May 19, 2015

Little league and a pump.

The Spongebob out of water movie came out today...........(takes sip of Soco and coke).   Yeah I get to watch it again for the 10th time today.   Who knew one little cartoon sponge could wear on every single nerve?  Seriously they could use that cartoon as some form of torture for terrorist.  But hey the things we do to see our kids smile right?

Anyway,  here we are, halfway through May.   I get to soak in the fact that tomorrow Rylan will be done with 4th grade. 4th grade?!?!?  What the hell????   Seriously.   Thinking about him going into the 5th grade next year leads into a ton of spiraling thoughts.....
1. He will be in middle school soon. REAL soon.
2. He is going to start going through more "changes".  How do you prepare yourself for that?
3.  He is gonna be a MOTHER to lift.

Yes in regards to 3 we DO have a hoyer lift, and YES it is a pain in the butt to use.

I know I need to use it.  I am stubborn.  It will probably take a few more times of me throwing my back out, and possibly giving myself some bladder prolapse to get me to use it.

Most Special Moms know how it goes.  You get a routine.....more like a pattern.   I like to compare my day with Rylan like a song.   It is the same beat and tempo everyday.
                                         "bath, treatment, feed"
                                         "Feed, brace, brace"
                                          "weight bare feed"
                                           "Brace, brace, feed"
                                           "brace, brace, feed"

So adding a lift is just gonna mess everything up! lol

Earlier this year I decided that Rylan needed to be experiencing as much of life as possible.  I wanted him to do everything he could do and be a part of.......

Last Saturday, we had the pleasure of watching Rylan get his trophy from completing his first season of the Challenger Little League,

I was super proud we got to take part in this, mainly because a year ago we saw the insides of hospitals more then we did our own home.  

We had a lot of fun doing this.   Seeing all the kids and how happy they were from being a part of a team was reward enough in itself.

There were times where Rylan made me feel like I was punishing him. In his pre-Pubescent stage of life, he would show some dramatics because we would hand over hand his batting and throwing a ball.

 Most days he didn't like it at all! In fact we would laugh because some of the games he was either fussing or Trying to sleep!

Oh my child......all I asked for was an hour!

But in the end he rolled away making some wonderful friends with great kids.

I think to date this was my favorite thing to do with Rylan, and I cannot wait till next year!

That leads us to today.

We of course see a Neuro Doc that specializes in Spasticity.  Well not to long ago, Rylan got Botox in both his arms,

The Botox does seem to help for a little bit. But like most good fades away after awhile,

Since then Rylan has had a LEAST one growth spurt.   He went from fitting into size 12 shorts to size 16 in a matter of months.  

Now this might not seem like a big deal to most. But to us CP parents its a damn nightmare!  As the bones grow, the muscles do not,  causing the tightness you see in most people with CP (Cerebral Palsy).

So as expected I heard the words "Baclofen Pump".

I know as he is getting bigger we are going to have to get more things to maintain his care.  So now......I get to research what our next step in our journey will be.  Thankfully I have yet to hear anything about said pump that is negative.  SO that helps.

The surgery part leaves something to be desired, as I don't want to relive our pulmonary nightmares again.

So now I get to keep my nerves calm as Rylan's yearly eye exam is in a couple days. Remember last year? The doc tried to say he had a tumor on his optic nerve?  Yeah I am still nervous.  The main comfort is an ophthalmologist I know on a personal level reassured me that if there was something bad it would have been showing by now.   Still, Im nervous.

Now I get to finish the night off watching The Sponge with my little guy.