Life's Whirlwind Adventures

May 30 we had our last appointment for awhile, as now we are just waiting for genetic testing to see what turns up and what we will need to do from there.  Our Genetics testing took place at the Stollery Children's hospital in Edmonton. Now my first impression of trying to find the Stollery is that it is VERY DIFFICULT! Google maps doesn't take you to the entrance, and when you try to walk to find the entrance, at least for us, we ended up going in a restricted area that did not get us to where we needed to go. We were in the general location that we needed to be, but for all intensive purpose we were lost. Now my first impression of the staff that work at the multitude of hospitals in this location, because there are many, many hospitals that operate out of this location, the Stollery is only one of them, is that they are AMAZING! In the restricted area we ran into a gentleman who took us through the Staff only area to the main hub and walked us right up to one of the Stol...

Both Chandler and Leigham went to pre school and it was such a good experience for them that I really wanted Teddy to experience pre school as well.  The school districts in Red Deer offer a pre Kindergarten program for students who may have some delays in specific areas and it is open to students who do not have delays but there is a price attached to it.  Either way this is a great program and I had signed Teddy up for the assessments prior to us knowing his diagnosis, but his diagnosis helps him get into the Pre K program so I will take it. In March, Teddy had both of his assessments completed and both his assessments came back as he had some delays in all areas.  The areas they assess are receptive language, expressive language, gross and fine motor skills and awareness of self.  Obviously, with Teddy's diagnosis of CMT, he would have delays in the gross and fine motor skills and I expected a few delays in the expressive language and possibly in the awareness o...

Man do things ever change and flip you on your head when you receive news you weren't expecting! I know stating the obvious, but even though we logically know it will happen it's still super frustrating and shocking when it happens. So three statements the doctor made when we were there that started us on a path, Disability Tax Credit, FSCD funding, and AFOs. I am so, happy (?!?) that I have had the jobs I have had because none of these terms or acronyms were foreign to me. Disability Tax Credit and Benefit are two things we will apply for, it's likely we make too much money to see any return in the benefit section but we will be able to use all our costs as tax write offs now.  Which is a small thing, but we are now going to be incurring more costs, with more medical trips, more medical supplies and such so anything to help us counter that will be hugely beneficial. I have the forms I need and I just need my doctor to fill them out so I can submit them to the governmen...

So CMT is the diagnosis Teddy got, but what in the actual does that mean?  Well from what I have gathered and learned CMT is a hereditary condition that affects the peripheral nervous system, mainly in the feet and lower legs and hands and upper arms, but there are many different variations, and different ways CMT may become present in your genetic code. CMT is the most common of the neuropathy disorders affecting 1 in 2500 people.  So let's go through some of the ways it can be passed down and some of the different variants. CMT can be and is usually passed from parent to child.  This can mean that one parent may pass on the mutated gene to their child, this is in a autosomal dominant.  Another way is both parents have an abnormal gene which causes the mutation of the gene in the child, thus in a recessive fashion.  You can also get CMT inherited in a X linked way, so the gene is located on the X Chromosome.  You can also have no apparent history of ...

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 availabl...

While we were in Nova Scotia, we told people we had to leave by a certain day because of this upcoming appointment, which was true, we did need to make it back.  There was a doctor there and he kept telling me nothing was wrong he seemed fine with his walking, but I felt he'd say whatever he needed to have us stay another day or two. The trip to Nova Scotia was wonderful, my boys were great and they played and frolicked and made so many memories! But then we came home and it was back to reality. While waiting to see Dr B, Leigham and Teddy brought me all the children's books in the waiting area to read.  Some of those books are super old and you can tell from their content that they were written in the seventies. I almost felt scandalized reading one book. I wish I could remember it better to put the title in this blog. Finally, they led us back to the patient room. "Ah, how is everyone today," Dr. B greeted as he came in. "I'm bored," moaned Lei...

I loaded the boys into my white Dodge Caravan, buckling Teddy into his seat and telling Leigham to buckle up in his booster seat.  It's a fight most days, because Leigham goes in the door that Teddy's seat is beside and Teddy gets upset but today they know they are going to see the Chiropractor, so today they are happy to comply.  Usually, the chiropractor is just a mommy thing so for them it's a treat. Driving through Red Deer is quick, the Chiropractor is downtown by the Safeway and takes about ten minutes.  Traffic is light this July morning since it's one, summer and two, after  nine.  We arrive at the Chiropractor and I take the boys in, holding Teddy's little hand tightly and we walk and he stumbles over the air. "Come on Teddy, get up," I chide as he stumbles again, his walking has always been this way, it's like he doesn't know how to lift his toes over the cracks.  One day I fear I am going to wrench his arm out of his socket when he...