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