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

Book Signing

Yesterday was amazing!  We had a wonderful church service led by the pastor's wife.  We also had some special guests who joined us to celebrate the 70 year anniversary of their Magnus chapter.  Afterward, our pastor had a little surprise for our guests.  He purchased 25 copies of my book, "Journey of Courage", and we had ourselves a book signing.  We also received  $80 in additional donations toward Robby's service dog.  It was very exciting!

On a separate note, I have been thinking long and hard for some time now and have come to a decision.  I gave my notice at work today so that I will have more time to devote to Robby and to my writing.  Currently I am beginning work on a children's book about Robby and also on a short fictional book.  I am looking forward to this new chapter in my life.

Teaser

I have written a book about Robby's struggles with hydrocephalus and cerebral palsy as part of my fundraiser to get him a service dog.  Would you like to help us out?  I have provided a sneak peak of the book.  Be sure to read all the way to the bottom as I have included links to Amazon to purchase the book, and also a link to our GoFundMe page. 

Chapter 2 The NICU
Before Chris and Michael made it back the next morning a large group of doctors came into my room. They had done some imaging overnight and wanted to speak to me about the results. The doctor who was in charge informed me that most of the other people in the group were medical students and asked my permission for them to observe. Usually when I am asked that question I agree to it. Learning is very important and I feel that new doctors need to see and hear as much as possible to help them become better in their fields. But today was different. I was about to hear a long-awaited answer to some very terrifying questions and I didn’t want an audience.
He got right to the point. The CT scan showed a large mass the size of an adult fist at the base of Robby’s brain. The mass was blocking the aqueduct where the spinal fluid is supposed to drain and was the cause of the hydrocephalus. They suspected it was cancer. My heart sank into my toes when he said, “Cancer in babies tends to be very aggressive and their life expectancy is less than 6 months.”
As the tears streamed down my face he went on to explain that they would do further testing to determine if the tumor was operable. They wanted to do an MRI to get a better look at it before making a decision. At the very least, he would need surgery to place a shunt which is a tube and valve system that drains the spinal fluid to the abdomen where it belongs. A small catheter would be inserted into one of the ventricles of his brain. The catheter would be connected to a valve and a long tube would run from the valve to his abdomen. The tube would be long enough to be coiled up at the base so that it would “grow” with him and not need replacement unless it stopped working. He would need to remain in the NICU for at least two weeks. I gave my permission for the test and he left.
I laid in the bed crying and staring at the ceiling, longing to hold my baby. A nurse came in and pressed on my abdomen several times to prevent post-surgery blood clots. She informed me that I would be walking today. I laughed weakly and said, “I can’t roll over without extreme pain. How am I going to walk?”
She told me that the pain would be worse if I didn’t try to get up and move around. She also said that getting up and moving around would help prevent dangerous blood clots. So, with a concerted effort and a lot of help from the nurse I got into a seated position with my legs dangling over the edge of the bed. She allowed me to rest for a few minutes and then helped me off the bed and I set off for a walk in the hallways. I was surprised to find that it actually felt good to be on my feet and I walked the entire ward twice.
I had already finished my walk and had breakfast by the time Chris and Michael arrived. They gave me a singing balloon that my parents had sent along with a note saying they would arrive in a few days. We settled Michael in with a portable DVD player and a set of headphones so that he wouldn’t be able to hear as I relayed to Chris what the doctor had told me.
“All I want to do right now is hold him,” I said.
Without further prompting, Chris set off to find a nurse and see about taking me next door to the NICU. She brought a wheelchair to the room and told me to call the nursing station when I was ready to return. Since Michael was not allowed in the NICU, Chris and I took turns sitting with him in the waiting room while the other was with Robby. I was able to have my meals delivered to me there so I stayed long after Chris had taken Michael home.
One evening after Chris and Michael had already left an alarm sounded and a voice came over the PA system advising everyone to stay away from the windows. A tornado warning was in effect. I paged my nurse and asked to be taken next door to see Robby. I couldn’t stand the idea of being away from him if something were to happen. She informed me that no one would be available to wheel me over there for a few more hours. So I asked her to bring me a wheelchair and told her I could wheel myself over. Wow was that ever a hard trip. I had never actually tried to push myself in a wheelchair before, and the distance combined with the small hills that were all through the tunnel really wore me out. I had to stop and rest several times. After about an hour I finally made it to the NICU. The nurses there told me that no one would be able to take me back to my room until after 9 p.m. I told her that was fine with me. I had worked hard to make it to the NICU and was in no hurry to leave.
I was discharged three days after my cesarean. The hospital staff had made arrangements for us to stay across the street at the Ronald McDonald House so we wouldn’t have to make the long drive every day from Terre Haute. Let me tell you, I still get tears in my eyes when I talk about that place. It. Was. Amazing.
Chris went to the RMH to request a breast pump for my room. When he arrived, the manager informed him that he had just signed out his last one. There was a pumping room located downstairs. Until a pump became available for my room I would have to go down there every couple of hours to do my business. I was physically exhausted from my surgery and emotionally drained. This did NOT sound like fun. But it was the best they could do at the moment so I would make due.
The room was a decent size with a full bed and a private bathroom. We spent the first evening reading through the book on the nightstand. It was full of the stories of every family that had stayed in the room. One in particular tugged at my heartstrings. The family had been through so much with their child and had noted that the rest of their story was in other journals throughout the RMH in the rooms they had stayed in during previous hospitalizations. We added some of our story to the book, with the rest to be written on our last day in the house. Chris left around ten o’clock to take Michael home and promised to return in the morning. He couldn’t stay with me until my parents arrived because although children were allowed at the RMH during the day, only the parents were allowed to stay the night.
Around midnight I heard a knock on my door. My blood ran cold as possible reasons for someone coming to my room this time of night ran through my head. I was sure that something had happened to Robby. When I opened the door I saw the manager standing there…with a breast pump. One of the other moms had overheard his earlier conversation with Chris and asked him to bring it to me. She said that her room was very close to the pumping room and she would rather I have it. Once again I found myself crying. I was overwhelmed by this stranger’s kindness.
The next morning I wandered downstairs to make some breakfast. There were several small kitchens. Each one had four rooms assigned to it. They were equipped with a refrigerator, dishwasher, stove, sink, and a fully stocked pantry. Everything we needed was there and it was all free. The next time you eat at McDonald’s I encourage you to throw your change in the box for the Ronald McDonald House. Those places are a real blessing to families going through traumatic health issues with their children. In addition to the kitchens there were play areas for the siblings of the children in the hospital, a T.V. room, a playground outside, and every night they served a hot meal so that exhausted families wouldn’t have to worry about cooking.
I headed straight to the NICU after breakfast. I spent the morning snuggling with Robby and waiting for Chris to come back. Later that afternoon the neurosurgeon stopped by to speak with us. He had the results of Robby’s MRI. Praise the Lord it wasn’t cancer! He said the mass was a blood clot and described it as a bruise that never healed. At this point I asked if it could have been caused by my car accident. I was shocked when he said no. He said there was nothing we could have done to prevent it. To this day I feel like he told me that so I wouldn’t feel guilty and like it was somehow my fault. How else would he get a bruise in utero? Still, I was so happy that my baby didn’t have cancer that I didn’t question it.
He also had something called a teratoma on his brain. It was a small calcified spot. His doctor said these tend to show up in cases where the pregnancy starts as twins and one twin absorbs the other. I guess my friend had been right. He said they can turn into all kinds of things like hair or teeth. I guess you could say that Robby carries his twin with him wherever he goes.
The doctor stayed and spoke with us for quite a while. He explained the shunt placement surgery to us and told us how the shunt worked. He would most likely have one for the rest of his life. We were told that occasionally it may stop working properly and that if it did he would require another surgery to revise it. There is no cure for hydrocephalus. The only treatment is brain surgery and he would definitely have to go through it more than once because shunts simply don’t last forever. The doctor said they would not be trying to remove the blood clot because they were concerned that doing so could cause a hemorrhage in his brain. They intended to monitor it closely with periodic CT scans. We would have to wait and see what the extent of the damage to the brain was and what long-term effects he may suffer.
The surgery was performed when Robby was a week old. We were given a pager and told that the procedure would take about an hour. They would page us when he was settled in a recovery room. Nothing could have prepared me to see him afterward. One side of his small head was covered with a large bandage and he had tubes everywhere. The doctor assured us that the surgery had gone very well and that we could finally relax for the time being.
My parents had arrived about two days earlier. They brought a huge bag full of clothes, toys, and blankets. None of it was allowed to be kept in the NICU, but they had wanted me to at least get a look at the gifts before taking them to the house. They took turns holding Robby and when my dad spoke to him he opened his eyes and I swear he smiled. I know, I know, at that age it is supposedly just gas…but it sure looked like a smile to me. I like to think it was our first look at the great sense of humor he would develop. The reason I say that is because my dad didn’t just say some generic hello to him. He spoke in a very deep voice and told him he had a big chunk of stove wood for him. I still don’t know where he came up with that goofy comment, but Robby mentions stove wood every time he talks about his grandpa. After they had both had a chance to hold Robby, my parents took Michael and stayed with him at our house so that Chris and I could both stay with the baby.


The next couple of weeks were a blur. I spent every waking hour in the NICU. Occasionally the nurses would insist that I go get some rest and remind me that I wasn’t any good to Robby if I wasn’t taking care of myself. At one point, I remember returning from pumping my milk to find several nurses huddled around his bed. I rushed over to find out what was wrong and they smiled at me.
“Nothing is wrong,” one of them said. “We aren’t used to getting full size babies in here; we’re just admiring.” Most of the babies in the NICU weighed three pounds or less. Robby weighed nine pounds, eight ounces.
The entire experience was extremely emotional and overwhelming. Chris and I met a couple of ladies in the elevator one day and traded stories. They asked if they could pray with us. So they got off on our floor even though their loved one was upstairs in the PICU and we prayed together right there in the hallway. A few days later we went to a nearby car dealership to purchase a minivan. I can’t stand vans. They remind me of rocket ships. However, we had four kids now and they sure as heck weren’t going to fit in our Jetta. We shared our story with the salesman and he prayed with us too.
Robby spent a total of three weeks in the NICU. Finally the day came when we got to take him home. Right away Michael wanted to hold his brother. He was so proud! Our family was together at home at last. We still had a long road ahead with many challenges, but right then we were simply happy.

Buy Journey of Courage Here

Donate Here

Donations can also be made via PayPal using the email address becky.wetzler@live.com

It's Here!

As most of you know, I have been burying myself in my latest project.  I wrote a book about my sweet hero, Robby.  It has been an interesting experience.  When I started, I thought to myself, "Why not write a story about Robby's life and try to sell it to raise money for his service dog?"  As I wrote and relived all of the many struggles we have faced as a family, it became very much a labor of love.  It reminded me just how strong my young man is and how blessed I am to be his mother. 

The ebook is available now.  I have to do some tweaking with the cover design to make it appropriate for the paperback version.  Hopefully I will be able to finish that over the weekend and have the paperback version available for purchase by early next week.  Hope on over to Amazon to get your copy of the ebook!

https://www.amazon.com/dp/B06XMQQQ8Y/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1487294892&sr=1-1&keywords=journey+of+courage

Service Dog Fundraiser Video

Service Dog For Robby

Hi again!  Thank you for dropping by.  I spent the better part of my day working on a video (click the link above to watch) to help promote my fundraiser to get Robby a service dog.  Going through the old CT scans and Xrays and talking about his story is always an emotional endeavor but so worth it.  Robby is such a ray of sunshine in my life and I hope after seeing this video and reading his story on my previous blog post "Service Dog For Robby" you will find it in your heart to donate to our cause.

If you are unable to donate right now that's ok.  Hey, the economy is in the toilet...I get it.  But you can still help!  Sharing these blog posts, the video, and the link to my GoFundMe page helps immensely too.  More than 2/3 of the donations we have received so far have been from people who have seen something their friends shared.  More exposure means a better chance for Robby to get his dog.  Thank you all again for your continued help and support.  I appreciate each and every one of you.

Donate here:
http://www.gofundme.com/service-dog-for-robby

Follow me on Twitter @dsntplynice and share there too!

#advocacy #campaign #cause #charity #crowdfunding #dogood #donate #fundraising #socialgood #dogforRobby

My Cup Runneth Over

Today we hit the $1000 mark for our fundraiser for Robby's service dog.  $1055 to be exact!  We still have a long way to go but right now I'm just content being amazed that we raised this in a single week.  The kindness and generosity shown to us by family, friends, and strangers is both overwhelming and humbling.  Thank you everyone for helping us get closer to our goal.  My family will be forever grateful.

I am thankful not only for the monetary donations but also for each and every shared post.  If you are helping out by sharing please remember that if you go to our Gofundme campaign page you can share not only on Facebook but also on Twitter, Instagram, and Pinterest.  Our campaign is currently trending.  With your help we can make it go viral!

I would also like to say a special thank you to my friend (you know who you are) that offered to come build a proper fence for the back yard once we have raised enough to pay for the materials.  This really touched my heart and I feel blessed to know such a selfless person.

I will share the link to our campaign page below.  Also, if you haven't read it and would like to know more of Robby's store check out my post from a few days ago titled "Service Dog for Robby".  In November we attended a special event where he got to read a book to a service dog.  He really enjoyed it and I can't wait to get him a dog of his own!

Http://www.gofundme.com/service-dog-for-Robby

Service Dog for Robby

It's been a long while since I got on here but I'm back with a cause and a heart full of hope.  Today I want to share the story of my son Robby.  This cute little guy here:

During an ultrasound when I was pregnant with Robby it was discovered that he has a condition called hydrocephalus.  That means that his body was not draining the spinal fluid from his brain.  As a result, the fluid kept building up putting more and more pressure on his brain which caused him to have cerebral palsy along with intellectual and developmental delays.  At one week of age he underwent surgery to place a shunt.  The shunt is a tube and valve system which drains the spinal fluid in order to keep it at a normal level.

Every now and then the shunt malfunctions.  The first time it happened he was five years old.  It was about four in the morning and I heard a strange noise from the other end of the hall.  At first I thought he was playing and I giggled at the noise.  But then it started to sound more like a grunt so I set off to check on him.  I was armed and ready to deal with the dirty diaper that would surely accompany the strange grunt emanating from my young son.  I could not have been less prepared for what I saw when I walked into the bedroom he shared with his ten year old brother.

Robby was having a grand mal seizure.  I called 911 and told them what was happening.  When the paramedics arrived it was all I could do to walk away from Robby so I could run down the stairs to let them in.  4 men in shining armor (okay not really, but that is how I see first responders) calmly assessed the situation before one of them scooped Robby up and took him down to the ambulance.  Of course my older son Michael woke up in the middle of all the commotion.  I can't begin to imagine the fear he must have felt being jolted awake in the middle of the night to find his brother convulsing and strange men carting him off.

Thankfully my neighbors came out to see what was going in and they offered to keep Michael for me.  My husband was in Okinawa on a business trip at the time so I was extremely grateful for this.  I had no idea what to expect and he had already seen more than I would have liked at his young age, especially since I couldn't begin to explain it to him.  How could I?  This was all new to me too.

Once we were settled into a room in the ER I borrowed a cell phone from one of the nurses.  I was a stay-at-home mom and didn't think I needed one of my own.  I called my mother at what was an ungodly hour for her since I live on the East coast and she lives on the West coast.  She and my husband used to work together before she retired so I figured she would know someone who could get in touch with him to tell him what was happening.  Plus I was scared out of my mind and I'm not ashamed to say that I will never grow out of wanting my mama when things go sideways. After several hours and a transfer to the ER at the children's hospital I finally got to talk to Chris and tell him what was going on.

At that time th doctors were monitoring Robby and running tests to find out why he was seizing.  Michael was with me by then because he had been begging to come check on his brother.  He was watching him like a hawk.  Actually, he was watching him so closely that he was the one to discover that Robby turns pink when he seizes.  There were no convulsions because of heavy medication but Mike would say, "Mom, he's turning pink again," and then the monitors would start alarming as his heart rate shot up.  They did a CT scan and X-rays to check his shunt and before I knew it he was being whisked off to surgery.

Little did I know that this was the beginning of a very LONG journey.  After the first revision, Robby's shunt failures began happening more often.  As in eight revisions over a period of five years.  Here is the stack of CT scans and X-rays he's had during that time (minus the most recent one which stays in my purse just in case we need it):

And of course my little man refuses to be typical.  In most aspects of his life that is pretty wonderful.  He has a great disposition, is very social, and loves to tell jokes.  Even when he's sick the kid is smiling.  But when it comes to his symptoms during shunt failure he is the very definition of atypical.  Most people would be very lethargic, their eyes would bug a little, there may be some vomiting, and when given a CT scan the ventricles in their brain would look enlarged.  Having seizures caused by shunt failure, especially when the person is not epileptic which he is not, is very rare according to our neurosurgeons.  Robby does get a little more tired and when he's in failure there is a LOT of vomiting.  But that is where the typical symptoms stop.  With the exception of that first malfunction his CTs have always looked the same.  So we would go to the emergency room after repeated vomiting (once he threw up 16 times in 9 hours) and/or a seizure and the first thing the doctors want is a CT.  We play the game because that is their procedure but we don't hold our breath because we know it won't show any change.  Then we wait and watch as Robby is tested for any and every possible cause of seizure not related to his shunt.  Ultimately we always end up in the same situation: all the tests have been exhausted, CT looks normal, neurosurgery resident begrudgingly agrees to finally tap the shunt because I know what is happening and I refuse to leave until they do it.

Let me just say that I understand why the doctors never want to tap the shunt.  It requires putting a needle directly into the valve and testing to see how much fluid they can get to flow out which puts the patient at risk for infection.  And when you're dealing with the brain that is serious business so I don't fault them for their hesitance at all.  They have spent years having this massive knowledge in a complicated field drilled into their brains and they know their stuff.  But I know my child and so I put my foot down and I push until they do the tap.  Every time they tap it they are mystified to see that the flow is in fact less than optimal.  Sometimes nonexistent. 

The doctors have been unable to determine why Robby's shunt fails so often (that's not typical either, go figure), or why during one revision he was one of the 2% of patients who needed their valve replaced rather than just the catheter.  A couple of years ago he spent 17 days in the hospital and underwent 3 surgeries because after the first revision his symptoms did not go away.  They ended up having to remove the entire shunt which consists of a small catheter that goes into the ventricle in his brain, a valve, and another tube that drains the fluid down into his abdomen, in case there was an infection somewhere.  He was put on an external drain and pumped full of some serious antibiotics for four days to make sure he was infection free.  Let me tell you that external drain was a scary thing.  There was a tube that drained the spinal fluid into a bag that hung next to the bed.  He had to remain level all the time because if he laid back too far all the fluid would pool around his brain and potentially cause lasting damage.  If he sat up too straight all the fluid could whoosh out (I kid you not, the doctor said WHOOSH out) and that could potentially kill him.  Talk about terrifying.  Every time he adjusted himself to get more comfortable in the bed we had to page the nurse to come level him out again.

We have come to terms with the fact that this will be something Robby will have to deal with his entire life.  That's why I call him my forever child.  Not because he will forever BE a child.  In fact I think with his determination he will be able to be mostly independent someday.  I call him my forever child because it is possible that he will always need to live at home so someone will be around if he seizes.  We have dealt with enough revisions that we have it down to a science.  Call the ambulance, throw a change of clothes, phone and charger into an overnight bag, spend several hours in the ER doing the "I swear to you it's his shunt" dance, surgery, and then several days in the hospital to make sure we will be able to safely take him home.  I ride in the ambulance with Robby and I don't leave the hospital until he does.  My husband buys groceries for me to keep in the room so we don't have to spend so much on crappy high dollar hospital food and makes sure to do my laundry and bring me at least one hot meal a day.  We live a good 45 minutes from the hospital on a good day.  Add in DC traffic and all the construction that has been going on near the hospital and sometimes that doubles so believe me I appreciate these things very much.

Robby's two most recent revisions were scary on a whole different scale.  Last January he seized during the middle of the worst snow storm of the year.  The ambulance arrived with a snow plow in front and a tow truck behind.  Michael was shoveling as fast as he could to make a path for them to get to the door.  Protocol requires that they take him to the nearest hospital.  Despite the fact that the nearest hospital is not equipped to handle shunt failure in a child we spent a few hours there while they made sure he was stable and waited for an available transport to the nearest hospital that could deal with it.  That ambulance was accompanied by a tow truck as well.  We took main roads so a plow wasn't necessary but the snow was still coming down so the tow truck was a necessary precaution.  We only spent one night in the second hospital.  Due to Robby's atypical symptoms the neurosurgery team refused to see him because they insisted he could not be in shunt failure.  Thankfully our nurse was a smart cookie (and I'm guessing a mom because she seemed to know she should trust my gut) and she called our normal neurosurgery team.  Once our doctor heard what was going on he demanded that Robby be transported to his hospital so he could lay eyes on his patient.  God bless you Dr. M.  To think we could have lost him if you weren't so familiar with him.  Here he is racing with his minion after a day or two of recovery:

The last revision was in August.  This failure is my reason for writing this blog entry today.  Typically when Robby seizes it is noisy, there is a lot of grunting and twitching involved, and he doesn't come out of it until he is given medication.  On this particular day he had vomited several times so I was keeping a close eye on him.  However, there was a nasty virus going around his school that had hospitalized three children so my fears about his shunt were just a little nagging in the back of my mind.  Around noon I decided I would go downstairs and do the dishes because his fever had finally broken and he hadn't thrown up in about two hours.  But I was doing something on my phone so I stayed upstairs with him for one more minute so I could check on him one last time.  I truly believe God guided me in that moment because just as I looked over at him sitting on the other side of the couch he had a seizure.  It was the tiniest seizure he's ever had.  The whole thing lasted less than a minute and he didn't make a single noise.  If I had gone downstairs without checking him that one last time I would have missed it.  He came right back out of it, smiled at me, and asked for his iPad.

If I hadn't caught that seizure my little boy would not be with us today.  We spent nearly six hours in the ER with the staff looking at us like, "This is the time you're wrong", because here was a little boy laughing, telling jokes, and not looking the slightest bit sick.  And then it happened.  The worst seizure he's ever had.  It lasted 45 minutes.  I stood sobbing in the corner as I watched them pump him full of medications while my husband and two male nurses held him so he wouldn't fall off the bed because the spasms were so hard.  We found out later that the reason they couldn't get the seizure to stop was because his sodium levels were extremely low.  We still don't know why that was.  The doctor said there could be hundreds of reasons.  A neurosurgery resident I hadn't seen before came in to tap the shunt.  It took a long time and at one point she said she didn't know if there was enough fluid.  Then she turned to me and asked if it was enough.  I.  Lost.  It. 

I have seen the procedure done enough times that I knew the answer to her question.  The problem was that she didn't; and I told her so.  I told her that if she didn't know then she needed to leave and bring me someone who knew what they were doing.  I need to take a minute here to give major kudos to the doctor that was in charge.  While I was busy losing my shit (please forgive the language but there is just no proper way to describe my state of mind), he was dealing with the whole thing extremely calmly and proficiently.  He sent her out of the room and focused just on me and what I knew my son needed.  Caleb W. you are a rock star.  Finally the decision was made to get him into surgery to revise the shunt.  The surgeon flat out told me they only did it because I demanded it, but that when they had gotten in there the shunt was in fact not flowing properly. 

Ever since that last revision I have been terrified.  The doctors said Robby very nearly died and if he had been at home when that big seizure hit he surely would have.  This brings me to the reason I decided to write this today and share it with whoever is willing to read it.  I would really love to get Robby a service dog.  I want one that will come and get me if he has a seizure when I don't happen to be looking.  We keep a camera over his bed at night, but if he were to have a tiny seizure like he did that day there's not much of a chance that I would hear it and wake up.  Having a dog in his room that is trained to alert us would bring great peace of mind.  The problem is that he does not qualify for a service dog through the local non-profits.  One of them requires that he be at least 12 years old (he's 10) and that he have seizures on at least a weekly basis.  Robby is not epileptic and only seizes when his shunt malfunctions.  The other requires that he be at least 14 years old.

I am determined that Robby have a service dog because it could literally mean the difference between life and death.  So, Saturday I created a Gofundme campaign and today I made several donation jars to place around the community.  I read that one way to boost a fundraiser is to share your story in a blog so here we are.  If you read this and feel moved to donate to our campaign you can do so by clicking the link below.  Even if you are unable to donate, please share this blog so that we can get as much exposure as possible.  The out-of-pocket expenses for the dog, the training, the supplies, and the modifications that will need to made to our back yard to accommodate it will be astronomical.  Even the smallest donations count and will be truly appreciated.  Thank you for taking the time to read our story.  If you would like to donate please click here:

Service Dog for Robby

Less Than Perfect

Tonight I was watching "The Practice" which is one of my very favorite series.  The leading lady, Addison, is a doctor who delivers babies, but more importantly she deals mostly with pregnancies with difficult circumstances.  So in this episode a former patient sues Addison for not recommending that she have an abortion.  During the pregnancy Addison diagnosed the baby with Spina Bifida.  She performed an in-utero surgery, a new procedure, and in fact it worked out well.  The child was able to do more than a lot of children with the disease.

Sadly, this was not enough for the mother.  Caring for a child with a disability is difficult and she couldn't handle it.  The thing that really irks me is that one of the other doctors in Addison's practice says that some women just can't handle raising a child that is, "less than perfect."  This description of disabled children makes me angry beyond belief.

My little boy has Cerebral Palsy and I would NEVER describe him as less than perfect.  He is a miracle. Plain and simple, he is AMAZING.  I guess my definition of perfect is just different than some people's. To me, perfect is the boy that can't move the way "normal" people can but who wakes up every day with a huge smile on his face and conquers tasks that most people take for granted.  Perfect is the child that works ten times harder than "normal" children to perform tasks they do easily because he has more determination than most people have ever seen.

I ask you this.  How often do you see a child with a physical or mental disability looking unhappy?  A whole lot less often than other kids!  I rarely see one of these little angels looking anything but happy.  They are a gift from God and I feel truly blessed that he saw me as a fit person to raise one of these special, and absolutely wonderful, differently-abled children.  My little boy is the light of my life and the light of many other lives as well.  He makes people smile wherever he goes and I am proud to call him my son.

Time to Reconnect

I was reading a friend's blog today and it made me realize something about myself.  I'm a lot more selfish than I ever thought or cared to admit.  This woman has been my friend since we were seven years old, we were even born in the same month.  That is a total of 25 years, and yet for the last 10-12 of those I barely know anything about what her life has become or who she is now.  I'm ashamed of that.

After thinking about it some more I realized that I have a few other friends, though none so close, that I have lost contact with for the most part because I've been too wrapped up in my own troubles to ask about THEIR lives.  So today I'm going to change that.  I'm going to check in on my dear pals at least once a week  by email and try to get over my major dislike of the telephone.

To the friend I mentioned above: You know who you are and I am truly sorry that we have grown so far apart over the last several years.  You are like a sister to me and I love you with all my heart.  I'm sorry I haven't been there for you and I hope that we can change that and get back to talking about everything under the sun like we used to.

Oh The Confusion

Those of you who know me best know that when I've had a drink or two I get a bit nostalgic.  Sometimes I look through old yearbooks or Google friends that I haven't seen in ages to see what they are up to.  So last night I decided to look up Michael's biological dad, or as I like to call him "sperm donor".  It turns out he has another son.  At first when I saw the photos I thought it was good that he appeared to have grown up enough to be a good dad to that boy.  Next my mood shifted to anger that he never showed that kind of interest in OUR son.  And then it hit me...my child has a brother out there somewhere that he will probably never get to meet.  How do I even begin to process that?

I don't know at what age I will tell Michael, or how for that matter.  I just know that my poor son has already dealt with so much of the emotional fallout that comes with being abandoned by a parent and it breaks my heart thinking that there is more yet to be piled on.