Surgery Update

Hello everyone!  I apologize that it's been so long since I have updated all of you.  I recently decided to go back to college and everything has been very busy.  Our little superstar lost a tooth last week.  I wish I had a cute photo to share, but it was kind of far back in his mouth and he wasn't cooperating.  Something about not enjoying my fingers in his mouth.  Go figure.

He also had his surgical follow-up earlier this week.  Super Robby passed with flying colors.  The doctor says he looks great and he was happy to hear that we haven't seen the usual post-surgery regression in performance at school.  He was also happy that the vision therapist says Robby's eye alignment has improved.  All signs are pointing to this lower-pressure valve being a good decision.  Let's just hope it keeps this cute little guy from needing surgery again any time soon!

Since our last update, Robby has also been on a field trip.  They hit several places, but he especially enjoyed Petco.

He also went to the mall with his dad and rode an elephant!  Okay, to be clear it wasn't a real elephant.  But still super fun!

As you can see, things have been a little hectic.  But I'm happy to report that Super Robby is definitely on the mend and ready for whatever our next adventure may be.  Have a great week everyone!

Run, Run, Run!

Robby and I are excited to embark on our newest adventure.  He has been part of a Facebook group called IRun4 for about three years.  Runners around the country are paired with children and adults with disabilities and they dedicate their runs to their buddies.  These relationships are largely virtual.  The runners communicate with their buddies via closed Facebook groups by posting pictures, memes, and sharing their workouts/races to brighten their buddy's day.  The buddies (or their families) post pictures and updates for the runners as well.  Several of the runners send their race medals to their buddies and a few have even met their buddies in person and run races with them.  It's a great group of people.  If you are a runner and would like to be paired with a special buddy, you can visit the IRun4 website and click "Match Me".

Today I signed Robby up for something similar.  The difference is that Ainsley's Angels is not virtual and Robby will actually get to participate in local races with his runner(s).  They provide special chairs for the kids to ride in and their goal is to make communities more inclusive for people with special needs.  Ainsley's Angels operates in 30 states, so if you are interested in becoming an Angel, or if you know a special needs child who would love to be an Angel Rider, I encourage you to visit their site.  Signing up is quick and easy.  I learned about Ainsley's Angels from one of Robby's teachers who also has a special needs child and is part of the group.  We are looking forward to meeting new friends and having a blast with them!

If you want to see more frequent updates on Super Robby, you can like/follow our Facebook page "Service Dog For Robby".  Have a wonderful day y'all!

Kindly Table Your Judgement

Let me just start by saying a huge thank you to everyone who is pitching in for our rock painting/hiding endeavor.  I am truly overwhelmed and humbled by the response to my posts on social media and the number of people who have read this blog.  You are all amazing!  Two important things have happened in our lives over the past several days since Super Robby returned to school.

The first thing is one that has my hackles raised in a big way.  Below is Robby's school picture.

Now at first glance, this isn't an altogether terrible picture.  But if you know Robby, then you know it doesn't take much of an effort to make his face light up with that contagious smile.  And if you know him, or have followed Service Dog For Robby on Facebook for any length of time, then you also know that he wears glasses.  There was one incidence years ago where he wasn't wearing his glasses and it turned out to be an oversight by the teacher.  Robby had been napping right before picture time and in the chaos of getting all the kiddos organized and out the door his glasses were left behind.  No biggie, it happens.

But this time was different.  When I asked his teacher about the missing glasses she informed me that she hadn't been at school that day, but she had noticed when the pictures came back that NONE of Robby's classmates who wear glasses had them on in their pictures.  Clearly this was the photographer's choice.  And you know what?  I have a big problem with that.  As a parent in general, I celebrate my children's differences.  I'm not raising sheep.  As the parent of a special needs child, I take even more pride in the things that make Robby stand out because they are symbols of his strength and perseverance.

To that photographer who apparently sees glasses as being unworthy of his pictures I say this.  To you those glasses may be something "uncool" or not "attractive" enough to make your photos what you want them to be.  But here is what those glasses say to me.  They say that despite the fact that Robby was blind until he was 8 months old (and the doctors thought he would always be), with the help of those glasses he can SEE.  So to me, those glasses are proof that miracles can happen.  And you really should have taken a moment to try to crack a joke or do something, anything, to make him smile for the photo.  Trust me, it would have been worth it and it's your loss.

I just want to note here that although retakes are not available for spring pictures, Lifetouch responded to my email complaint right away.  They have apologized, issued a refund, and promised that this information was forwarded to the appropriate department.  My anger has nothing to do with the company as a whole.

Okay, rant over...venting complete and all that.  Let's move on to the second important thing that happened.  Although if I had to rank them, this one would come out on top.  It just made sense to present it second here.  This morning Robby participated in the 2018 Spring Special Olympics at his school.  And there was proof everywhere of how amazing all these children are.

Nearly all of Robby's classmates wear glasses, and 100% of his classmates are absolutely inspirational.  Many of them wear leg braces, use wheelchairs and/or walkers, and a couple of them are non-verbal.  But never let it be said that they cannot express themselves.  Those children brought me so much joy today as I watched them tackle obstacle courses, participate in races, and all of the other events we rotated through.  I was proud of each and every one of them.

Several of the athletes participated in the opening ceremonies.  And with the help of a special communication device, one of Robby's non-verbal classmates even made the announcement of the commencement of the event.  This was our second time attending and I have to say, if you haven't experienced the Special Olympics then I highly recommend adding it to your calendar.  The love, support, and just general happy atmosphere will amaze you.

Let me wrap this up by saying that I posted this today with the hope that it would shed a little light on the struggles these children face each and every day.  But also to show that they do this with a strength, courage, and positive attitude (most of the time) that rivals that of the "average" person.  So before you look at one of these special children and decide there is something "wrong" with them, please take the time to actually get to know them.  Because if you do, I think you will fall in love with them just like I have.  These children are inspirational and their differences should be celebrated, not hidden away like something to be ashamed of.

If you would like to see more pictures of today's Special Olympics, head on over to our Facebook page.  There are also a couple of fun videos!

Rocks For Robby

Tonight's post will be short and sweet.  I'm sorry for the lack of photos, but I had an idea today that I am very excited about and I just had to hurry and put it out there!  Those of you who know me personally know that I have struggled with my weight nearly all of my adult life.  One of the ways I am battling the bulge right now is hiking.  I absolutely love it.  Well, one of the things you run across when you're hitting the trails is painted rocks.  This is a big craze right now and people are having a lot of fun with it.  Personally, I'm not a big rock painter.  However, I did find one of those rocks not too long ago.  On the back was a Facebook page and a request to post a photo of the rock to that page so that whoever hid it would know that someone found it.

As I was hiking this afternoon and looking for a place to rehide the rock, a thought occurred to me.  A LOT of people are into this rock painting/hiding thing.  So, what if all of Robby's supporters painted rocks that have OUR Facebook page on the back?  We can paint them with things like green and blue ribbons (green is the color for cerebral palsy and blue is the color for hydrocephalus), and we can add #nomorebs.  If you are unfamiliar, that stands for "no more brain surgery".  On the front (top?) of the rock would be the painted design.  And painted on the back would be: Share on Facebook @ Service Dog For Robby.  This could draw a lot of people to our page and raise awareness for our cause and our fundraiser!  

If you are a fan of my little Super Robby, please paint a rock and next time you are out and about place it where someone can find it and be led to our page.  I appreciate all of you and I hope many many rocks are painted and hidden for my CP hero!  I'm off to paint my rock now.  Have a great night everyone.  

Robby's Story Continued and Why He Needs a Dog

Today I was asked why Robby needs a service dog.  Given that we are trying to raise an enormous amount of money for this dog, it is a completely valid question.  I told part of  Robby's Story in an earlier post on this blog.  I will continue it here.

Since my previous post, Robby has had 4 more revisions.  The most recent shunt failure was a mere 10 days ago.  They are all terrifying for their own reasons.  For instance, his last two failures were in April and June of 2017...just two months apart.  This time was one of the scariest.  His neurosurgeon was concerned that there may be some sort of infection in his brain causing the shunt to fail so frequently.  That is something no parent of a child with hydrocephalus wants to hear.  Especially when it's the second time you hear it, because now you know what it means.

And what it means is that your child is about to have not one, but two surgeries and roughly a week of what amounts to torture for mom and dad.  Why?  Well aside from the additional surgery, there is the EVD (external ventricular drain).  The EVD is a tube that drains the excess CSF (cerebral spinal fluid) from the brain into a bag which hangs like an IV bag on a pole next to the bed.  In order to maintain proper pressure and CSF levels the patient has to remain in a position level with the drain.  So every time your child wiggles into a different position the nurses have to be called to re-level the drain.  And every time he reaches up to scratch the area you nearly jump out of your skin because you fear he may yank that drain tube right out of his head.  When a neurosurgeon says your child may have an infection, it means they are going to remove the entire shunt (rather than just the catheter)...also more extensive surgery.  They put in an EVD and the EVD does the job of the shunt for several days while your child is pumped full of antibiotics.  Once it is determined that they are infection-free, another surgery is performed to remove the EVD and place a new shunt.  So for us it meant that Robby spent 8 days in the hospital and came out with 4 new scars.

His most recent revision was also scary because there was no seizure.  Don't get me wrong, seizures are something I wish Robby didn't have to deal with.  However, they are also one of two giant red flags that alert me to his shunt failure.  The other is vomiting.  I'm not talking about flu vomit where it's a few times in a day and he can keep down crackers and Gatorade.  I'm talking twelve times over a six-hour period.  There does happen to be a virus going around so I didn't take him straight to the children's hospital.  Our local ER checked him out and his scans looked normal (whatever, they never look any different...imaging is almost completely useless for Robby) and the doctor seemed content that he had a virus and sent us on our way.  But one thing kept nagging at me.  His flu test came back negative.  Now I know there are a hundred other viruses they didn't test for, but let's be real.  If it was a virus then it would likely have been the one everyone else is testing positive for.  So off to the children's hospital we went and after a quick shunt tap we found that he was in fact in shunt failure.

The thing about this failure is that when they tapped the shunt they got zero fluid.  Now usually there is at least a tiny bit.  So I'm honestly not convinced that he didn't have a seizure.  It just may have been one of those that was so quick and quiet that I missed it.  Which is were a service dog would have come in very handy.

If Robby did have a seizure, his service dog would have been able to alert me that he needed medical attention.  A service dog could also provide many other benefits to him as his cerebral palsy and recently diagnosed dystonia leave him with limited mobility.  A service dog could help with such tasks as opening doors, providing stability during transfers, and even pulling clothing on and off.  Robby also has extremely low vision (about 5%), so a service dog would make it easier for him to navigate his environment safely.  There are also studies that show that service animals improve the social and emotional well-being of their owners.

If reading Robby's story has moved you to donate to our campaign you can help in several ways.  You can donate to our GoFundMe account or through PayPal using the email becky.wetzler@live.com.  You can also purchase my book from Amazon if you would like to read more about Robby.  And please like and share Service Dog For Robby on Facebook to see updates on my little superhero and our fundraising campaign.

Not All Heroes Wear Capes

Who is your hero?  Who do you look up to?  Is it a fictional character, or like me, is it a real person?  My 12-year-old son Robby is my number one hero.  Just last week he added two brain surgeries to his tally bringing him to 14.  And does he let it get him down?  Nope.  He's still having some pain, but he is rocking his post-surgery Mohawk like the superstar he is.

I've been thinking about heroes a lot lately...and not just because I gave birth to one.  A good friend of mine is an EMT and a firefighter.  I have a good many other friends who are first responders as well, but this one in particular set my wheels turning.  We were chatting one day and I was telling him about my very hectic afternoon.  My oldest son was accepted into a youth challenge program at the last minute and I had to do some major schedule juggling to get him there.  So I made my usual crack about being Superwoman and told him I hoped his day was less hectic than mine.  He told me it wasn't really (which makes me sad because if he is busy at work then it means people are in pain), and I told him he could handle it.  After all, I just dabble in heroism.  He's a hero every day.  To which my friend responded, "No h-word here."  And that brings me to another h-word...humble.  

Robby's condition brings us into contact with a lot of medical professionals and nearly all of them are humble.  I tell them how amazing they are and they say they are just doing their jobs.  Even his neurosurgeon has this special quality.  A few days ago I thanked him for saving my son's life yet again.  He said  I had nothing to thank him for.  He told me that I kept bringing my son to them in hopes that they would fix his shunt in such a way that we would no longer require an average of 2 surgeries per year, and that they hadn't done that for me yet.  He said, "But he's ours.  We love him and we are going to keep on trying."  It honestly melted my heart.  

And then there is the care he receives from the nurses whenever we pay an extended visit to the children's hospital.  Those everyday heroes that provide endless entertainment, sympathy, support, and even hugs to my little angel.  The ones that listen to his jokes, tell him some of their own when he needs cheering up, and make sure that he and I both have everything we need because Lord knows I don't walk out of that hospital until he does.

When we do finally walk out of those doors and head home, there is a hero waiting there as well.  She is his CNA and someone we both absolutely adore.  Need a sitter at the last minute?  Done.  Care so I can run out and replace all the food that went bad while we were in the hospital?  No problem.  Stay overnight so I can leave before sunrise and make a 9-hour round-trip to deliver Michael to his program?  Sure thing.  Now THAT is what I call a hero.  

As you go about your day and that inevitable frustration sets in over being stuck in traffic or dealing with that co-worker, I urge you to think about people who are struggling with major health issues.  Say a little prayer for them, and a little thank you to those who step up to help them.  Because who knows?  Maybe someday you will need a hero of your own and one of them will surely be there for you.

If you would like to keep up on my little hero's progress, head on over to our Facebook page:  Service Dog For Robby.  Give us a like and please share the page.  Have a great day y'all!  #nomorebs 

Service Dog For Robby