Somethings odd in the Jello

Well....today 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 something.......here 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,

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 things...it 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.

Wow...its been awhile.

I cant believe its been 2 years since I have posted.  So much has changed.

Since surgery I have been dealing with body image issues galore! Not only has my face decided it wants to revert back to my puberty years.  I am dealing with weight I can not get rid of.

I did try to do a "weight loss" challenge a woman out here was doing.  I got as far as losing 10 pounds, then that was it.   However I am positive I could get this awesome looking body by dedicating my life to health and fitness.   However that is not a possibility for me.  Why you ask?  Too much stress and a belief that life is too short, so if I want a damn cheeseburger I am going to eat one.  Plus after talking to my Mom curves are going to happen....as I am getting it from BOTH parents.  Thanks to my Husband I am feeling better about my curves.

But no In reality as most of my Special Mommys understand my life is sleepless nights, diaper changes, fighting insurance, and so on.  A lot of times I am to exhausted to do anything else, haha.

Steven retired from the Air Force.  Definitely a scary time.   We went for awhile not knowing where we were going to live or what was going to happen.  Thanks to a job fair Steven was able to get his foot in at Raytheon.  Keeping us home.  His retirement didn't come without its drama,  ex Wife drama.   Before his retirement she felt the need to take him for more child support getting herself a whopping 1000 for the one child they created together.   So obviously when his pay went down this caused a little stress.  Thankfully now we are working on getting taking care of.  But with that came with learning a lot that came with his marriage.  Learning that because he refused to leave she was handed EVERYTHING thanks to the FMSPA law.   That was a MASSIVE punch in the gut.

Rylan is wonderful.   We had one scare which is still up in the air.  Rylan gets his eyes checked at The Childrens Clinic.  The eye doc there leaves something to be desired, the first year we saw her she kept pushing for Rylan to have surgery on his lazy eye, Which is ONLY noticeable when he is really tired.  So Steven and I were against that.  Then the following year she kept saying she noticed something on his optic nerve.  Yet when I asked what that meant she only responded with "I dont know".  To tell me he could have pressure on his brain, tumor on his brain, leukemia, and so much more.  Yeah I lost it.

Here we are almost a year later and he is still kicking butt.  The one ophthalmologist I know on a personal level helped me by reminding me that by now his eye would be pushed forward.  Another friend with experience with brain pressure and a child, helped me as well by letting me know what I would be looking for.  Following up with his Neurologist he didnt noticed anything abnormal. So my thoughts, he doesnt have a normal brain. So things will not develop normal.

Oh and the FUN part.  Rylan turned 10.  10 is not a fun age!  The mood swings are awesome and very frustrating.  Combine that with the discomfort of growing pains My sweet little boy is changing.  I blame all the adults I know for not giving me a heads up! But I do still worry at times that something more is wrong.  It is times like this that make me wish I could just experience a stress free life,  Just once.

I decided to turn back to venting on my blog as trying to reach out to my special friends for support on Facebook back fired.  Especially after the woman labeled as my "God Mother" trolled on my FaceBook page one too many times.  I decided to remove her causing her to send me probably the nastiest message in my life.   Berating me as a Mom, wife, and friend. It hurt...A LOT.  But it also woke me up to not dealing with certain things anymore.

Oh and I cant forget BASEBALL!!!!! Rylan is doing Baseball!  I signed him up to be a part of The Tucson Challenger Little League.  I have to say its a wonderful experience for him.  Since he has been home bound he has lacked the kid interaction I wish he could have.  One of my Best Girlfriends signed her daughter up as well. Trinity and Rylan ended up on the same team so its awesome I get to see my friend every Saturday!!

Here is to the rest of 201 5 being wonderful!   I love life right now,

Hyster-mom (may be TMI for some of you judgmental fools)

What A crazy few days it has been.........I had surgery for the first time ever.......and I was so scared.   Steven took the day before off as I had to do a bowel prep.....This was horrible!!

2 bottles of magnesium citrate...I am sure some of you who have done this know its disgusting. and once I started I was on clear liquids. So 200 pm, my surgery was 130 pm the next day.  So needless to say I was starving.

When we got ready to leave the day of surgery I started crying I didn't want to leave Rylan.  I know it sounds super pathetic but I was scared....about going under, I have never experienced it before.  

Got to the hospital and I really started getting nervous.......We went and checked in and they took blood and were rushing me because supposedly my doctor was ready for me.   We got to the prep area....and my doc was still in surgery......

According to the nurse she was ahead of schedule, well we sat and waited.  My doc came in and talked to me, then we waited.  A few of the nurses assisting came in and talked to me, each giving their own experiences with surgery in hopes to relax me.  Finally about 120 the Anesthesiologist came in to talk to me.  I shared with him how terrified I was about going under and he laughed.  Then gave me some drugs to relax me and honestly I couldn't stop laughing

They wheeled me in and before I knew it I was waking up in recovery.  I dont remember much but I remember I kept asking for ice chips and my nurse said no because I just got in there.  after an hour the rolled me in my room Where my husband, mom, step-mom Sandi and Will were waiting.

They left shortly after and as I started passing out, my husband did too.......I was feeling so sick.   The nurse I had that night was amazing......she explained that I had a non-stop drip of morphin along with the button.  I hardly hit the button but all I knew is I wanted to sleep........But my room was right by the door to the unit.

As most special mommies, or moms in general know any little noise can wake you up......so needless to say i had a hard time sleeping because I kept hearing the door open and close.

I am a side sleeper, so I tried to sleep on my side while I was there.......I woke up to my night gown soaked on the side I was laying on......the PCT said it was sweat because I had a ton of blankets on........ok. So whe took some off and I went back to sleep and rolled on the opposite side....again I woke up to the same thing......Then a light bulb went off.   I check the catheter holder on my leg.........it was open.......gross.

So I call the nurse in and they come help me.....I ask if I could take it out.......They answer....NO.
I ask if I can take a shower........they answer NO. So they cleaned up my bed and I wiped off with these wipes they gave me and I start trembling......like Im freezing..I get back in bad and they warm up my room.   But  I still feel gross.......Especially since its hard to feel good about yourself when you technically just peed the bed as an adult........ugh.

The nurse comes back around 630 and takes the catheter out.......FINALLY!  Then my doc came in shortly after......Ever since I have been in surgery my heart rate was extremely high.  So she tells me she is tentatively going to put discharge papers in but is going to request an EEG and to have the internal medicine doc to  come talk to me but there is a chance they may keep me for one more day.  Great......I got a little scared because it felt like my body was betraying me.....I felt totally relaxed no reason for my heart rate to be out of control.

By now Steven shows up, I sit myself straight up and tried to eat some breakfast.  I took 2 bites of oatmeal and wanted to puke. So I ask to get the morphine out of me, they did and gave me anti-nausea meds........slowly I started feeling better.

The PCT comes in with the EEG machine, and could not get it to work.  I was starting to get annoyed. The internal med doc came in to talk to me.   During the night they ran blood work on me twice to make sure I didnt have an infection because of my heart rate.....so when the doc came in she looked at that, then watch the EEG.  She said everything looked fine......Now What I DIDNT know was the anesthesiologist said my heart rate was high during surgery.....and Then I was told it can take up to 36 hours for the anesthesia to be completely out  of  your system....SO the Doc is thinking a reaction to it.........

My parents come by and visit, and when Steven and my Dad get together they keep cracking jokes, which I laugh and it hurts then my favortie TMC employee Pam Comes by as well.  When They leave I attempt to shower, Steven helps me of course.  The water pressure at the hospital is INSANE.  it hurt.  I get out and I cant stop shaking so I try to relax before I attempt to walk.  Steven and I take a walk and get back to the room and I try to settle in and nap.......just when Im about to fall asleep the nurse comes in with my discharge paper work.

We get home and I am super excited to see Rylan....I missed him! That boy didnt even act like I was gone!!!! Kinda sucked lol.

I go in our room and relax........I would walk out to get water and Rylan's nurse who had this surgery as well looks at me and says she is surprised im not sleeping.    I tell her Im not on any narcotics and she looks at me like im insane.    Whatever I can handle pain. What really got to me was the gas pressure. Later the night it hurt to sit.....it was built up in my lower abdomen it hurt so bad.   I walked around the house at a 90 degree angle about to cry when Steven went to go buy me Gas-x to try and help.......it did!

Here I am day 3 out of surgery.........i am so excited I did this.......Due to the amount of health issues I  had due to this monster inside of me, I had put on so much weight....(I went from a size 1-2, to a size 11-12)  I felt disgusting.....I was uncomfortable all the time and my hormones were all over the place.

Since having it I feel so even........mentally and emotionally.   It's great! The Ovary that was left in started working immediately so  I had no adverse side effects........Everyday I feel a little better.  I would recommend it to everyone.

Yes this is all Im dealing with at the moment. =)

Hump day!

Well today so far has been better, I got up as usual and snuck out of the room for coffee and some me time, which includes watching Grey's Anatomy on Netflix while drinking my cup of joe.   Then Steven walks out shortly after, which sucked cause he isn't quite and makes it difficult to hear. LOVE YOU HONEY!!!! =)

9 am rolls around and Rylan is STILL sleeping. This is very much out of Character for him as he normally wakes around 730 because he gets hungry,  If I was on an all liquid diet I would too.  Do to our morning plans of wanting to get him out of the house before the hot Arizona sun starts cooking us, we decided to wake him.

I throw him in the bath and you could tell he was riding the fence on being in a good mood or bad.  So I hope for the best and get him ready for the day reminding him we were going to the swings!

Steven goes ahead and feeds him as I finish getting myself ready, when the doorbell rings.  We both look at each other perplexed as to who was at the door.  Obviously we forgot that Bugweiser (yes that is actually the name) was coming to treat us for termites.   We got them situated and they asked if we could move the van so they could pull the truck into the driveway so they could reach the chemicals easier.  Since we were leaving anyways we decided to just hurry up and go. 

Rylan is in seventh heaven right now, Steven then yells for me and I walk down to see that the lift is not working.  CRAP.  I hang out with Rylan while Steven makes sure it is a dead battery for sure. As soon as he opens the door it was confirmed a dead battery.  Yes I pulled a move that most woman do, I left the lights on last time I drove the van.....which was two days ago.

We hang out a little bit while Steven searches for the jumper cables and cannot find.  Needless to say at that time the bug guys figured out a different way to reach their chemicals. SO a different plan was made.  I was going to take him for a walk, so I ran in and changed and Rylan and I went for a walk around our neighborhood and down to the park.  HE was estactic, honestly its kind of awesome to have a child that gets so excited to go for a walk. 

His whole demeanor was completely changed.  Yeah I feel so stupid to wait so long to think of this but I decided that at least once a week, (im shooting for every Wednesday) I want to get him out of the house. So hopefully he will be good for me......and will tolerate school a little better....

Eventually! lol

Frustration, Exasperation, Annoyance, anger, and Irritation

I look in the mirror, my face looks awful.  I literally look like those beat up moms you see at the store with the kids on each leg crying and yelling.  The same Mom I have been guilty of looking at and rolling my eyes on numerous occasions because she couldn't control her kids. I guess this is Karma.

 

 

2 days I have questioned my parenting, I have doubted everything I thought I knew.  I thought I knew Rylan's cries, whines and actions.  These last 2 days have changed my perception.    

 

I hear and have even said"it's the age", "pre hormones" "growing pains", "he is spoiled", and when this all started I truly believed that.  So I did what I could to make him as comfortable as possible, a dash of Tylenol here, his favorite movie there.  All seemed to have settled his crying and yelling for MAYBE 5 minutes.   SO when I went to bed that night I thought to myself, maybe it was just a bad day.  Then I woke up today.

 

Having a non-verbal Special Needs child is hard......really hard.  

 

Today was a repeat of yesterday, but not as bad.  He is crying and yelling, and as his mom I want to fix whatever is bothering him.  He cant tell me, so I guess and guess.  Steven and I battle a fine line together, if he is acting like a brat we want to make sure he is going to have time out as we do not condone acting like that.  HOWEVER if there really is something wrong, I don't want him to feel bad for trying to tell us something is wrong the only way he knows how.  Not going to lie it stresses me out.

 

I know some of this is a difficult journey ALL parents face regardless of a disable free child or not.....I am just on my own journey, and I don't know what to do.

 

I am exhausted, so I am going to wash my face, brush my teeth and get ready for bed.......but wait for the little one to relax and go to bed so I may.......I really hope tomorrows better.

 

 

 

 

Boiling Blood

I feel the need to share my feeling regarding a letter that a parent received that is spreading all over the internet. If you have not had a chance to read it......well here ya go.

 

 

This sickens me beyond belief........The cowardness of this woman is UNBELIEVABLE.  

 

 

Now I know I have a VERY short fuse when it comes to Rylan not being treated fairly.  However this doesn't just stem to my son, but to all the other special needs children as well......and this is not to be confused as a "feel sorry for us", but it is a "this is real life, believe it or not".

 

 

Now I look at my daily life with Rylan, and when I first read this I couldn't help but put myself in this poor woman's shoes.   My first thought was I would be in jail for murder when I found out who wrote this.  Then the reasonable side of me thought well that is selfish to think about stooping so low when I do have a kid that needs me.  SO one word describes this horrid woman.....IGNORANT.

 

 

There are sooo many different disabilities in this world, and I promise the majority NEVER wished it upon there kids.  I know I most certainly did not.  When I first found out I was pregnant with a boy, I had hopes of playing ball with him and taking him camping and racing go carts.  Not once did I think "I hope my son is disabled and we have to watch him suffer all the time".

 

As parents we want the best for our kids,  So why should those being special not get that?

 

 

I can guarantee that this mom never asked this for her son, she is trying to give him the best life possible, Now most and I repeat MOST kids with disabilities are destined to pass on before there parents, and as being told myself this news it is heartbreaking and scary.   To know that this is your life and it is the inevitable.  SO to be told that if this parent was to die NO ONE would want him......WOW.   TO be told this kid needs to be euthanized....well to this cowardly mother I want to give you a double birdy kiss my ass!!! HOW DARE YOU!! Everyday I have with my son is a miracle! I don't take advantage of having my son.

 

 

Ugh.....even as I am writing this im sooo angry I am losing my train of thought....like I said im putting myself in her shoes........When parents are this ignorant it makes me so mad, I have been told different stories on numerous occasions of what my other "special" parents have had to deal with....its sad.  Yes you may have a healthy child, but what if that got taken away from you? What if you never got to see your kid graduate high school or get married?  What if you knew you would NEVER have grandchildren?   You would be heart broken.......keep that in mind.

 

 

SO when you see a parent like this educate yourself! NO its NOT rude to come up and ask if your curious as long as you do it with a little tact.  I know I personally encourage it, don't treat my son like he is the plague...and if you have kids teach them about the special people on earth. 

 

I know on plenty occasions we have gone to dinner with Rylan and the hostess acts like seating us where his wheelchair will fit is a big ordeal (ahem Toby Keith's).  I know Rylan has freaked out in numerous places, I know its annoying.  I can tell you at the point and time I am so frustrated and embarrassed because I know your saying mean things.....But I don't want to not allow my son to experience life.

 

 

I know this post is a little all over the place, but all im a trying to say is before you feel the need to pass judgment on a family and there special kid. Keep in mind they have had a really rough journey and its not over.....and in cases like mine its only gonna get rougher.  Be encouraging, I know I personally need to know that I have people I can lean on when the time comes or I need it....Plus hey if you attempt to get to know my kid or any special kid you may have come across, you would be able to meet true miracles and they most genuine amazing human beings ever.   I know I have been told this about my angel.....

 

http://youtu.be/YCRrrP0EhPc