Chapter Three: Visiting the Neurologist

Teddy has what the Physical Therapists called drop foot. When you google drop foot the three main causes are cerebral palsy, muscular dystrophy and diabetes. I was certain that cerebral palsy was not his condition, I was pretty certain diabetes wasn't either, but not 100% certain and most muscular dystrophies, the most common ones anyway, don't present until age 4 and Teddy had been like this since he was walking at 18 months. But it was still terrifying.

We received a letter from the Glenrose Rehabilitation hospital in Edmonton just after Valentine's day, they stated it would be approximately 4 month waiting period before Teddy would be seen by the neurologist there.  My only concern was 4 months away was June or July and I wanted to make sure he was seen before the doctors took their summer holidays. 

My phone rang with an Edmonton Number on February 21st.  It was the Glenrose and they wanted to book Teddy's appointment, they had February 28 or March 13th available.  I took the 28th because I wanted to go sooner and find out what was going on. 

Did he have a pinched nerve somewhere? Was there something going on with his nerves and the signals from his brain? Please don't let it be muscular Dystrophy!! These were all thoughts running through my mind and in my prayers as I waited for the appointment.

On February 26th we had a PT appointment at the 49th street clinic.  Teddy was brought to me by my sister in law and we went in to wait.  Teddy was happy playing in their little play corner and I waited knowing that I could let the PT know we'd be seeing Dr. Watt on Wednesday. 

In the back room we sat and discussed my upcoming appointment for Teddy and what to expect. The PT didn't want to do to much until she had the diagnosis from Dr Watt, but she did suggest that getting Teddy some AFOs could help him with running and things like that.

In the back of my head, I was still holding onto the balloon of hope that it would be something simple like a pinched nerve, it wouldn't be something that I had ever heard of, and since I work with people with disabilities and varying disabilities that didn't really leave a lot unknowns.

February 28th was a Wednesday, we sent Leigham off to school and we got into the car and headed for Edmonton. It was a long drive to get to the Glenrose, which isn't that far from Roger's Place, but you have to go through downtown Edmonton, then you need to try to find parking, HAHA! We ended up parking in the 2 hour parking area a couple blocks down then walked to the entrance.

At the entrance we showed Teddy's health care card and then we were directed upstairs.  We were forty five minutes early so we let Teddy watch some shows on the Ipad and we got him into his indoor shoes and shorts for his appointment. Teddy was in a good mood and kept crawling all over his dad.  I sat back listening to the sounds of the hospital hoping against hope that everything would be just fine.

Our appointment began and they started with a family history again. Teddy had a normal delivery, I had high blood pressure and was induced on his due date, he was a happy baby, met his milestones for everything but walking independently which he didn't do until 18 months.  There is only a history of heart disease in my family, Adrian's family has some epilepsy and parkinsons, but other than that there is nothing else.

Dr. Watt checked Teddy's reflexes, they still weren't there. He watched him walk down the hallway both to and away from him, then he sat us down in the room and told us his suspicions.

Charcot Marie Tooth Syndrome, based on his walking and no reflexes. My mind stopped working for a bit, because I have met people with this syndrome.  And one of the individuals I know lives in a group home in Red Deer and this is his only diagnosis, which leads ones mind down all kinds of paths because how similar are they going to be? I started crying but the Dr. Watt had to run one more test to be absolutely certain, it was an EMG.  So down we went to the spasticity lab to have an EMG run.

We let Teddy know that it would hurt a bit but Dr. Watt was going to be as fast as he could.  We started with his right hand, Teddy laid down with his head towards me and Adrian held his legs, I held the Ipad so we could distract him with a show.  The first few tests barely registered a reaction from Teddy, the third though, Teddy started crying and said it hurt.  We then did his other arm which he reacted to faster.

When it came time for his left leg, Teddy was bawling every time a shock went through him.  He had huge crocodile tears running down his face and I had tears pooling in my eyes because Dr. Watt was explaining it was CMT and that Teddy would need to see another Doctor to have genetic testing complete.

I cried so much that day, because the hope that I could cure my baby was smashed on the floor of that EMG lab.  My baby had a disability and we were going to have to find away to work with him so he could have all the success in his life, but there was no telling what his road and path as a CMTer would look like.

I had spent so much time hoping it wasn't muscular dystrophy that to be presented with this other neurological disorder was a blindside!

The craziest thing is nothing, nothing at all changed for Teddy.  But my world is now looking through a whole new lens. 

And the guilt, the emotional guilt I had to work through in that first 24-48 hours was intense.  Questions like Did I do something? Was it because of my age when I was pregnant that this happened? What about when I got the virus and lost my hearing, did that affect Teddy? Or when I had the panic attack because of my hormones, did that cause this?  What about my other kids, will they show signs of CMT? Did this come from my genetics or my husbands genetics?  To which the logical side of me had to shut that shit down because this isn't a blame thing, it's not something I could have changed or prevented, and it's not something I can change now, we just have to roll with things.

So I took a leave of absence, being at work and dealing with all the stuff I needed to do to get all the programs in place for Teddy was completely overwhelming and it amped up my depression again.  It's been a good two weeks off and I am feeling stronger and ready to go back to work.  The rest of this process is going to be a lot of 100 meter dashes.  We are going to have a lot of down time and the all of sudden things are going to pop up that we will need to do. 

Thanks for reading and all your support!! IF you have any questions I will answer back as soon as I see them!!

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