Chapter 7 Genetics testing

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 Stollery entrances.  That wasn't the entrance we needed as we needed to be on the second floor, so as I was trying to map my way up to the second floor, looking at the elevator banks and where I might need to go a nice lady asked me if she could help because I looked lost.  She then directed me exactly where I needed to go and it was wonderfully easy. 

The doctor and nurse team we worked with at the Stollery were so friendly, so helpful and they had a calmness about them, that allowed us to be calm.  Most of the time when you speak with a doctor, you are in and out in 15 minutes, they are like revolving doors trying to see as many patients as possible, but with both of our specialist appointments for Teddy, we've been given as much time as we needed.  I had expected to be at the Stollery for an hour though, we were in with the doctor for  two hours and then we had Teddy get some blood work done.  I was seriously impressed by everything!

One of the things that was said, that I really liked, and I'm using it in my teaching since I work with students that have disabilities is that "the child should not be punished because his physical output does not match his mental output." Simply meaning that Teddy won't have problems with his mental abilities but getting those ideas out and written could be hard for him and he shouldn't be penalized because he struggles. 

This day we had Lil Man join us on the appointments as we went up to Edmonton and planned to take the boys for a treat before we headed home.  There treat was Chuck E Cheese!! It was so much fun for the boys and they laughed and giggled and tried to play all the games. Then they got their little dinky prizes and we headed home.

This journey is not over and I don't expect to ever be OVER, but I feel much more confident on how we are going to move forward each year and through his schooling to ensure he is given all the supports he needs. 

The plan now is to increase his physical therapy at home (stretching daily and balancing activities), teaching Teddy to ride a bike, getting him involved in those activities he would like to participate in and finding some Occupational Therapy things for him to work on as well like instrument playing and squeezing toys to build some strength in his hands.

Thanks for reading and sticking with us through this journey, I will continue to update as we learn more and try new things to help support our little dude!

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