Chapter 8: Neuro-muscular multi disciplinary appointment
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 cooperate for now.
We met with a dietician and discussed Teddy's eating habits, or lack there of. He just does not like so many foods and we can't tell if it's a sensory issue or just being a stubborn 4 year old. All I know is he needs to eat more and he likely needs to sleep more. She suggested we keep trying new foods with him and work with OT to help with any sensory issues.
We also met with one of the neurologists and she gave us our genetics test results. No surprise there as the results were what we were expecting, but for now there is no need to go further with it as finding the official name for what Teddy has will not change what is going on in his life.
The Physical Therapist came in and looked at Teddy's feet and his Ankle Foot Orthotics, they were rubbing on his feet so we made some adjustments to them once we got back to Red Deer with his Orthotics person. I think we spent the most time with the PT but she gave us some great suggestions to work with Teddy on his mobility.
We also met with the social worker at the hospital and she got us set up with the Muscular Dystrophy Association of Canada, and helped us get a handicap placard for our vehicles so we can park closer for Teddy at different locales.
I felt the appointment was incredibly long but very helpful. I know that we have another one coming up soon, but I think this one will just be with the neurologist in Red Deer, and then next year we will have another appointment with the whole team again, unless they try to line our appointments up for March when he will get some new AFOs.
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 cooperate for now.
We met with a dietician and discussed Teddy's eating habits, or lack there of. He just does not like so many foods and we can't tell if it's a sensory issue or just being a stubborn 4 year old. All I know is he needs to eat more and he likely needs to sleep more. She suggested we keep trying new foods with him and work with OT to help with any sensory issues.
We also met with one of the neurologists and she gave us our genetics test results. No surprise there as the results were what we were expecting, but for now there is no need to go further with it as finding the official name for what Teddy has will not change what is going on in his life.
The Physical Therapist came in and looked at Teddy's feet and his Ankle Foot Orthotics, they were rubbing on his feet so we made some adjustments to them once we got back to Red Deer with his Orthotics person. I think we spent the most time with the PT but she gave us some great suggestions to work with Teddy on his mobility.
We also met with the social worker at the hospital and she got us set up with the Muscular Dystrophy Association of Canada, and helped us get a handicap placard for our vehicles so we can park closer for Teddy at different locales.
I felt the appointment was incredibly long but very helpful. I know that we have another one coming up soon, but I think this one will just be with the neurologist in Red Deer, and then next year we will have another appointment with the whole team again, unless they try to line our appointments up for March when he will get some new AFOs.
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