Wednesday, January 18, 2017

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

Saturday, January 14, 2017

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

Tuesday, January 10, 2017

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