Life's Whirlwind Adventures

We have had our first, of many, Neuro-muscular multi-disciplinary appointments.  We will likely have two a year, and they are a full day of talking with people. We were up early, sent Leigham off to school, then Adrian and I packed up Teddy and headed to the Glenrose in Edmonton.  We lucked out and found parking inside the parkade so we didn't have to walk a million city blocks to get to our appointment. Teddy did ok as well, he walked most of the way through the hospital because that place is a maze.  Our appointment was at 1:30 and we got checked in just in time. Upstairs we went to meet with the team.  After waiting a few minutes we were put into a room which looked out into the playground area.  In hindsight, and really at first sight, this seems like a terrible room to put a 4 year in who only wants to go out and play on the slide and equipment.  We spent more of the appointment telling Teddy he'd be able to have fun somewhere else but he had to co...

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 ...