Well sometimes you have to keep your mouth shut

So my husband called it.........When I got excited at our year long accomplishment and decided to announce it, Steven warned me. No good comes from acknowledging Rylan's health. 

Well after I got sick, Steven got sick.  Since we were both feeling better we were under the illusion that we made it without Rylan being affected. Well we could not be more wrong.

They say Mothers are usually very in tune with their child. When they are special needs you typically are a little MORE. Due to the fact that most can not speak you have to pick up on the little hints, whether it be a change in demeanor or change in breathing, something so small as the way they are looking at something, either way you know.

This morning Rylan woke me up, my gut told me he was not himself. He was extremely irritable and nothing was cheering him up.  We went through our normal routine, bath, treatment.  However my gut told me to check Rylan's stats after his morning treatment.  Around this time Steven woke up and did his morning routine. Only to be bugged in a few mins by me, I always get Steven's opinion on Rylan because I have a tendency to jump the gun.

Well out came the oxygen, his stats did not look good. His oxygen levels were low and his heart rate was extremely high. I was told before a high heart rate was a sign of pain, but the low O2? Not a good sign.

After about 30 mins on oxygen, and Madagascar on TV, my boy was smiling.  I went ahead and called the Pulmonologist. They told me due to everything Rylan was doing, we needed to head to the ER.

Steven went ahead and took off with Rylan while I lagged behind to take care of a couple things.  After I took care of what I needed to take care of I headed of to the hospital.  When we got there we waited around for ......hmm.......like 3 hours. The Doctor took a chest xray came back and told us it was clear.  She seemed at a lost, lungs were clear, ears were fine, throat was fine.......yet he needed oxygen. She went ahead and called the pulmo to get their opinion.  Which was an antibiotic and send us home.

So off we went, Steven went to fill the script and I brought Rylan home to take care of what we needed to do (as far as routine goes). 

Well all SEEMED well, got home and took care of what needed to be taken care of.  Rylan was happy, super happy.  He was laughing yet he sounded a little junky but I just attributed that to that fact that he had a virus.....or so it seemed.

After Steven left I went ahead and laid Rylan down to get him comfortable, so we can watch the Bears game. That's when you can say "shit" hit the fan.  Rylan all of a sudden freaked out not in a screaming sort of way but a grunting and pushing way. (it's weird I know).  I called Steven and my mom looking for comfort or advice and realized they are both 30 miles away and really cant help me.  Based off of what I was telling Steven and our past history we thought maybe he is impacted and trying to get it out.  So Steven recommends that I try to give him a suppository. 

Well I do.........that only seemed to make everything worse.  He was grunting and yelling, turning red, straining.......at this point I start to cry. I don't know what to do I feel so helpless.  When nothing happens Steven then recommends an enema, so I call the one person that lives close and is always there.......Rebecca.  Without hesitation she goes (thank you Rebecca!) and picks them up with wine....lol. Yep that's a great friend.

When I finally get him to relax I keep the pulse ox on him to monitor his heart rate. Yep even while he is asleep it is super high......unfortunately the 6:00 hour was rolling around which meant it was time for a treatment. As soon as I lifted him up to get a treatment Rylan freaked out again, when I started the treatment it was a whole new level so 911 was then called.

Once we got in the ambulance and were en route the medic tells me that his high heart rate is still VERY much there but then you mix it with his low blood pressure, it sometimes means SHOCK.   My heart hit the floor, I asked what would cause that and he starts listing a ton of things, things I would have no idea how it would happen. 

We get to the hospital Rylan is uncomfortable whenever he is moved.  They tell us that a stomach X-ray has been ordered.  When that comes back and it is normal the doc begins to press on his stomach and Rylan wretches in pain.......lay him down....wretches in pain....so she calls for blood work.  When she came back just a few hours ago...it came back with appendicitis.  

So the cat scan is set and off to our room..........Im exhausted and worried.  

Year 1

I write this in bed with a chest on fire and a high hope I will be able to breath soon.  Now as we know I have no luck with anything. As I came down with Bronchitis shortly after announcing Rylan just had his first straight year not being in the hospital! AT ALL!!!!! WHOOP!!!!!  What is funny is they tried to tell me at the urgent care that it was pneumonia at first and as I was walking out told me they were wrong....comforting.

Well this is awesome as I am VERY contagious, and who was I taking care prior to feeling like crap?? Yep my weakened immune system child.  The last words spoken to me were "watch him like a hawk".  So this is great.   But my Mom and Steven both attempted to comfort me in letting me know that they truly believe he will be fine. But I count help but worry, as we went to fill my scripts I kept texting Rebecca asking how he was doing with every response being fine. SO I guess part of me needs to relax and listen to my Husband and Mother.

Even though today I am still worried. Steven and I both agreed to keep me in our room until I have been on antibiotics for at least 24 hours.  I hear Rylan happy and laughing, yet I'm still so nervous. Ugh.......

But happy news! Not only did Rylan have his anniversary Steven and I have our first wedding anniversary coming up soon too! I am probably throwing bad luck out there but its been a very wonderful year without stress and anxiety around so much. I feel like we have grown tighter as a family.  I know our trips to that dreaded place are FAR from over,  I just know to appreciate the time now.

With Rylan doing so well he has been able to do more things.  One thing he has gotten amazing at is the wonderful therapy Tricycle.  He LOVES it so much!!  Rylan's physical therapist submitted his name and he was put on a waiting list while we wait for enough donations to come in to pay for it, OR we pay for it ourselves. 

Well that's where my big hearted friend Krissi comes in.

That's Krissi!

She called me up and wanted to set up a bike/car wash to raise donations. We did. 

We raised enough to get the bike! With the help of everyone that spread the word and showed up!
We submitted everything and waiting on them! I am soooooo excited!

We have branched into things we do at home as well, such as coloring. I drove all the way up to Hobby Lobby in Tucson to get this giant SpongeBob coloring book just for him!

There is also some handicapped swings located down the road from our house!!! The fun is never ending now!

All in all I am so happy with how much we have been able to do this summer let alone this last year together!  Just the smiles we get doing something fun makes all the pain so much more worth it.

We were also able to get family pictures thanks to my wonderful friend Bre! Rylan looks awesome!

Well I guess Ill go back to resting and trying to kick this.  Just send those Positive vibes Rylan stays good!

Squeeky Joy

Wow, its been awhile since I have written, I just didn't want send any bad vibes out there.  Every since we have pulled Rylan out of school last August he has been great!!!! With the last day of school around the corner I felt it was safe to share that Rylan has been hospital free for 9 MONTHS!!!!! Sooo exciting.

Cheese!

 

 

As I sit here and listen to him squealing over the same SpongeBob episode he has watched a million times I cant help but feel relaxed. I feel like I finally have some sort of control over the anxiety that's been lurking on my shoulder for 2 years.  It makes all the work we put in this last winter worth it. Our house became Fort Knox and NOBODY was coming inside if they showed any type of sickness. Face masks became a part of Rylan's everyday wardrobe when we had to go for appointments, We were going to do everything possible to keep him healthy!  I don't want to let my guard down completely though as that's when something will happen.

 

Because Rylan has been doing so great, Steven and I decided to plan a trip for him to go see Cars Land in Disney's California Adventure.  We started planning this trip in January, and it was SOOO much fun

 

We met Mater and rode a few rides.

 

It was seriously a blast to be able to have that family time.  We were able to spend some time with Steven's parents as well. The day after Disney we hit up Sea world, it was cold! But it wasn't busy so that was good!

Needless to say we needed that trip, it was nice to be able to get out and not worry about Rylan's breathing.  I know its not going to be this way for long but I will embrace it while I can.

I am not going to lie, I still watch his breathing like a hawk and whip out the Pulse ox if his breathing is questionable. But I like to think that because of my neurosis type behavior, Rylan had a comfortable winter.

Steven and I are starting to see some of the neurological effects as Rylan is getting older......and I will continue to be on top of all of it.  Who doesn't want to have all the medical knowledge???

SO here is to not seeing the inside of the pediatric unit at TMC for an entire year!!!!

 

 

 

No time for sick!!!!

Omg, yeah I am still sick.......Guess who else wanted to join in? Yep you guessed it, Rylan.

A couple days ago I spent most of the day up in Tucson taking care of my mom as she just had surgery. So Rylan got to stay home and have "man time" with dad.  He seemed to be doing great!

Around 6pm he passed out.....if any time he passes out I always want his o2 checked. His oxygen was not bad at all.....but it was lower then normal.  So we sat back and ate dinner all the while i kept an eye on him.

The only thing that came as a red flag to me was that he seemed to be breathing really fast. But he wasn't "belly breathing", when I use the term "belly breathing" im referring to when a child has a hard time breathing they will use their ab muscles to compensate.

Nothing seemed wrong, yet he was breathing fast and his heart rate was high......Steven sent me to bed and was gonna stay up and check on him...everything must have seemed fine because soon our house was fast asleep.....

Until 1am the next morning, I woke up to Rylan grunting, (another sign of troubled breathing, very creepy sounding). So I got up and checked on him, stats were still low and his heart rate still, high. Rylan needed to be changed so I asked Steven to help me out, I had to get up in a few short hours so I went back to bed and Steven (being the great dad he is) stayed up giving Rylan another treatment.  That seemed to hold him over for a couple of hours, then at 530 Rylan woke us up still grunting, so Steven and I opted to put him on some oxygen. I then I called the Pulmonologist.

I was up in Tucson again taking care of my mom, but Steven kept me in the loop.....for the most part it seemed like Rylan was doing ok.

When we saw the doctor he told us it seemed Rylan probably had a mucus plug that caused some atelectsis.....so we just need to treat until he is off the oxygen.  Ok sounds good we can do that........only now......today he has a cough.

So now that momma is able to walk.......I dont need to drive to Tucson, All I have to do is focus on healing my child.......and maybe getting some rest.

So here is to Rylan getting better and off oxygen in time for thanksgiving! 

Lets Eat, Breathe and be Married

Wow....two months can fly by quick. It's crazy how much can happen in a short time frame.

Since pulling Rylan out of school and placing him in the home bound program.....man has life finally got a little easier!

Well It took a little time to get Rylan in the program. Rylan is the first kid to have to do this is Sahuarita so of course everyone had to have a say. After a couple of meetings and driving up to Tucson to get letters from doctors, as well as lots of paperwork.....Rylan now has school at home.

Let me tell you he has been doing AWESOME! (knock on wood). He has been stating better then he has in a long time!

It's been great! But then the special needs mommy curse rears its ugly head and I keep thinking....he has been healthy for TOO long.......whats gonna hit him and when?

If your anything like Steven, as you are reading this your thinking he has been healthy enjoy it! Trust me I am! But you also have to understand that Rylan has a tendency to get sick out of no where!

Well the entire month of October Rylan was kept in lock down...... No No it wasn't as bad as it sounds.  Steven and I were finally tying the knot and Rylan needed to stay healthy.....the safest way to ensure this happens is by not having him go anywhere and making sure all that enter our house were healthy and washed their hands prior to touching Rylan.

We did plenty of things to keep Rylan occupied. 

Reading Spongebob

Watched Football

He even made GREAT accomplishments with schooling! He is communicating with his head switch better now!

That leads us up to November 1st......the day Steven and I got married!!!! I was lucky enough I had a healthy little boy to be our "Ring Security"

Now that all the smoke is clear, the desert is finally starting to feel like winter.  Homes are starting to gear up for the holidays.....Im still trying to keep up on keeping Rylan healthy........But I have failed on keeping myself healthy as I am now battling allergies....or a cold......not sure yet.......so now I get to rock a very stylish face mask when caring for Rylan when my wonderful husband (hee hee I said husband) is at work.

new findings and beginnings

The beginning of the school year was a rough one. As soon as Rylan made his way through the Sahuarita Primary school doors, it seemed like he became a magnet for every virus and germ. He ended up going to school a total of three days, needing a hospital trip after two.

As many of you know Steven and I have made the choice to pull him out of school for right now. It just seemed like he was ALWAYS sick!

It was a tough choice, but we told ourselves if he was always going to be sick how much school was he actually going to attend? We had our wedding coming up and So many fun filled family activities at the end of the year, we didnt want him to be miserable.

So homebound it is, For those who do not know to be Homebound means that Rylan will be receiving  a total of 4 hours a week of schooling provided at home.  A certified person will be coming out to work with him.  These people are going to be the special education director, his teacher, speech therapist, and an occupational therapist.  But until this was started we got to hangout!

Rylan has been doing AWESOME! Since he has been feeling great he has been doing soooo many new things. He is vocalizing more, expressing more, etc,etc. It's been GREAT!

Well I have a love for Katy Perry...I admit it. I was soooooo excited to get it her movie. As soon as I put it in, Rylan took it over. and was in LOVE!

SO needless to say we have watched the movie so many times I have it almost memorized.

But today marks day one of his homebound services. Its sooo awesome to see how much Rylan loves to learn and more importantly how smart he is!  I stay in another room so Rylan will focus on his task, but listening to him use the IPAD to answer questions was remarkable.

Miss Rachel teaching Rylan

 

It's so nice to be able to experience this new journey with Rylan.

The age of Isolation anxiety

Isolation.....a term I have come to know quite well. Isolation is defined as

an act or instance of isolating, the state of being isolated. 

I know many special needs moms have been in this boat at one point. It sucks. 

I get frustrated from time to time cause I cant just load up and go somewhere. So many factors determine whether or not we can go out as a family. Every thing from the weather, to how crowded where we are going is. It can be a little depressing.

Here is why I feel Isolated:

Well we decided to let Rylan go back to school part time.  

That didnt last long.He went to school again and That night I noticed Rylan was stating all over the place.  I wasn't to fond of this. So I kept an eye on him, around 9 or 10 o'clock I went into his room to check on him. His stats were low. 

I call Steven and He comes home to take Rylan to the hospital. I took my anxiety meds and I was in no condition to drive.  So off my boys went. 

Around 5 am they returned home. Rylan was on 2 liters of oxygen and running a fever. Neither Boy had slept so Steven went to bed and I took care of Rylan with my main focus breaking the fever. 

That evening Rylan broke his fever and we worked on getting him off the oxygen.  After 3 days he was able to come off completely.

But then that led Steven and I to face the fact that we were going to have to do the inevitable.  Rylan was not going to return to school. He is being placed in the Home Bound program.

Now as a stay at home mom you are home all the time regardless. But with your child in school you have that 5 or 6 hours of freedom that you can do what you want. Run to the store, get your hair done, etc. 

With Rylan no longer in school, this was gonna be a rare treat for me. I know this and Its what is best for my son. 

I have managed to be diagnosed with Anxiety Disorder. After all the ups and downs with Rylan it has begun to take its toll on my body.  I know some people look at anxiety as a bullcrap disorder.....but let me put it this way. There has been days where have I cleaned my entire 3 bedroom/ 2 bathroom house, with a front room and living room, washed all sheets and made beds, towels and laundry in one day.  Because I cant sit still. Not only that I have begun to have health issues.

Its not a bad thing but when you have this disorder and you main focus is your special needs child and nothing else.....it makes things worse. 

I have begun falling in a dark hole, where I feel like I have my son in a bubble. I am isolating myself in my house because Im to worried about the germs everywhere else.

I could use a good massage.....