Thursday, October 3, 2013


This is a video created by Neuroworx for a gala they held in September 2013.  I was fortunate to be able to volunteer for this wonderful event.  Furthermore, my son Noah who is a patient at Neuroworx, was also highlighted in this video.  He happens to be the adorable baby in the pool.

We started with Neuroworx a couple months ago.  For now Noah is only big enough to do pool therapy and some floor therapy.  We have already seen some great progress though.  A few weeks ago Noah started to put weight through his hips, knees, and ankles and actually try to stand.  His ataxic (shaky movements) have also seemed to calm down dramatically as well. 

We have been very fortunate to be a part of this wonderful clinic and have such amazing therapists working with our son.  The founders Jan Black-MS, PT and Dr. Dale Hull, MD are amazing and really make you feel right at home.  The stories and successes they share give mothers and fathers like us hope that our son will be able to sit on his own one day and down the road walk.

I cannot speak highly enough of this organization and all the help they provide for those struggling with any form of mobility paralysis or limitation. 

There are many other youtube videos about neuroworx as well as a facebook group and webpage.  You should really check them out if you are looking for a brain injury or paralysis physical therapy clinic.

Dr. Dale Hull himself was once paralyzed from the neck down from an accident and today is walking around the clinic cheering others on.  

Mystery Diagnosis

If you have ever found yourself wide awake into the wee hours of the night you might have come across a television show called Mystery Diagnosis.  One of those shows that seems to suck me in within 30 seconds of the intro playing.  Each and every time my eyes glue to the screen as I question if the child or adult with said diagnosis will be the answer to my sons "mystery diagnosis."  It never is but I keep hoping. 

About 4 or 5 months ago Noah started to exhibit a cyclical sickness or "attack" as his doctors like to describe it.  It would happen every 2-3 weeks and we can pretty much mark on our calendars now when to expect the next "attack."  At first all his docs chalked it up to constipation.  They all told me that because Noah was so backed up with stool that his body would spiral into some form of "fit" and his white blood cell count would elevate causing fevers, shakes, vomiting, and pain.  We aren't just talking about a simple 101.1 degree fever either.  104 or 105.2 is more the norm for him.  HOT POOP!!!!  (Should have named this post that!).  Well, no matter how much hot poop he had we always seemed to get him cleaned out with either a suppository, enema, or even an all night hospital GI clean out with this stuff called GoLightly.  None of which are great experiences but most do end up with some type of hysterical story to tell later (after we all shower and disinfected).  We have become pros at the poop patrol, making sure Noah has the perfect number of bowel movements a week all of which have to be the perfect consistency, color, and frequency.  We might pass the entry exam into a gastrointestinal school these days.  Noah was put on 1.5 cap fulls of Miralax a day (brings water into the intestine to get things running smooth) and a pretty intensive dose of medication called Erythromyacin which was actually an antibiotic until they found out that it makes the muscles in the intestines work harder and push the stuff down to its escape hatch better. 

It wasn't until he had another attack that happened to fall on the exact day Noah had his quarterly appointment with his developmental pediatrician where people really started to take us seriously.  I was sitting in her office with a screaming Noah who was burning up and miserable.  She brought in with her another doctor and as they were chatting away about doing another clean out Noah made damn well sure they knew he did NOT need it.  Within literally seconds we all hear a little grunt and even though he was fully clothed he was able to disperse his entire GI tract full of stuff all over the floor, my legs, the wall, the doctors shoes, and even sprayed up onto the table and stroller. 

I was mortified.  The smell was horrendous.  The looks on all our faces were priceless.  I wanted to laugh and cry and run away all at the same time. 

They still decided to do yet another stomach xray to see if they saw anything left in there.  They didn't!  They then proceeded to take me from one hospital wing to another as they did ultra sounds, blood work, and after a three hour long wait a call to inform me that they wanted to admit Noah for an all night observation to figure this all out. 

I was tired but what was I to do.  My husband was out of town.  My pants smelled like a sewage plant. My son was burning up again.  The stroller still had the aftermath of a futile attempt to clean it up using paper towels and hand soap.  I wanted an answer, a direction, something.  So I gave in and admitted Noah for an all nighter.  Thankfully my wonderful family and friends came to my rescue with clean clothes, food, and great company. 

Doctor after doctor came to our room.  All with different schedules and agendas.  All with different ideas and tests they wanted to run.  All with great enthusiasm and drive.  NONE of which actually came through with anything that they said they were going to do or test they were going to run.  No answers, no further tests, nothing.  All big talk until their shift was over and the buck got passed onto the next attending or resident doctor who had their own idea of what Noah needed.  I was one PISSED off mother the next day. 

Husband landed at the airport around midnight and came bright and early to re-leave me from my post for a couple hours until he had to go back to work again.  The whole day we kept waiting for someone to give us some for of plan.  Nobody had one.  I took matters into my own hands and went knocking on his developmental pediatricians door (not literally a door but her assistants desk worked just fine).  They actually paged her and I finally got someone to listen to me.  Nothing further was ever planned and every plan that was made was disregarded by the next doctor on shift.  Pointless and waste of time.  I demanded to be discharged asap....and we were.  Persistence is the key when it comes to staying in the hospital.  You want to be nice and friendly but you also want them to take you serious and not walk all over you or disregard you either. 

Fast forward five weeks to today.......

After many tests a CT scan was ordered to evaluate his stoma around his gtube site.  CT scan was clear of any findings.  His blood work was sent in and a immunoglobulin test was done.   We received a heart breaking call that day from his doctor informing us that his "preliminary" test results show that Noah "probably" has this totally rare and horrible disease that would cause him pain for the rest of his life and you and your husband are the carriers and would have a 25% chance of giving this to your future kids.  WE WERE DEVASTATED!!!!!! 

Three days later after finally getting a grip on things I get another call from his doctor letting us know they were "stumped."  It was NOT this horrible disease after all.  I was stunned and shaking and so thankful I could have probably passed out had I not been meeting a friend for lunch at the very moment my phone rang with the news. 

I learned a valuable lesson that day.  NEVER EVER EVER listen to what a doctor has to say if they use the words "preliminary or probably."  Just turn your hearing off and go on to have a nice day until you get the final results back.  It was a weekend from hell and one I wouldn't wish on anyone ever, no matter how much I might dislike them. 

Noah has undergone weekly blood draws, his attacks have come just as we planned every 2-3 weeks, his doctors have tried to reach out and get help from infectious disease doctors as well as rheumatology doctors.  More blood tests were ordered, more time we have to wait, still no answers.  Halloween morning is our first appointment to meet Reumatology.  From the sounds of it, it will just be a meet and greet with another list of future blood tests.

No one in the medical field and none of his 15 specialists he has on his team of doctors has been able to get to the bottom of this.  Only two have even cared to even try to figure it out with no luck.  The waiting is hard.  Seeing my sweet toddler in pain all the time is harder.  Not knowing what this is or how to even help him other than Tylenol or Motrin is the worst.

I wish the actual show Mystery Diagnosis was a real foundation that actually did try to figure out what was wrong with people and not just a show to show those who have already got it all figured out.

For now we just pray every 14th day after his last attack that he will somehow skip the next cycle or better yet that this was all a fluke and there isn't anything wrong with him and one day he just wont get sick for a very very long time.