Hi all,
Ethan here!
Today we made the big drive back to
Mac for a follow up with Dr. Tarnopolsky. Our appointment was scheduled
for 1:30 so dad left work around noon so he could drive with us and
keep me company in the back seat. I had a good snooze on the trip down
so I was well rested for our visit. Since the trip was right in the
middle of my feeding time, my mom and dad brought along a bottle of the
good stuff for me and had to warm it in their hands. We arrived at Mac
around 1:00, mom let us off at the door and parked the car. Good thing
she did cause it was really warm in Hamilton and I probably would have
cooked if we had to walk from the other side of the street!
We
checked in with dr. Tarnopolsky's office and waited patiently in the
waiting room. Dad continued to feed me small amounts to keep my tummy
happy, but not so much as to risk unnecessary spillage from the mouth.
Around 1:45, we were called in to the clinic and we saw our old friend
Dr. T. He discussed with us a new paper he had read regarding the
"Reversible Cox Deficiency" and said there were some additional tests
that he wanted to run. One of the tests was being offered by a lab in
the states but it was still new and was not yet a pay for service test.
This meant that they are still looking for additional samples to run
free testing on. Dr. T had provided them with the details of my
condition and they were excited to offer the opportunity for us to use
their test! Wow!
Dr. T asked that we sign the papers for both
an on-site lab test and the freebie from the US and mom and dad did so
happily. We were told that there might not be enough of me stored on
ice to run all the tests and that I might need to have an additional
muscle biopsy done. We'll know more in a day or two but worst case
scenario is that I'll have a matching biopsy scar on my other leg. At
least I would be symmetrical.
We thanked Dr. Tarnopolsky for his
time and left the clinic. The other reason for our visit was to pick
up some prescription refills. Unfortunately, as my prescriptions are
somewhat complicated, they said we couldn't pick them up until 3:00. By
now it was about 2:15. What to do at Mac for 45 minutes? hmmm...
Let's go visit people!
We returned to the third floor and zipped
over to the Ronald MacDonald room. Linda was there holding down the
fort and was sooo happy to see me. Dad let her hold me and we stayed
and chatted for a few minutes. She was happy to see me getting so big
and commented on my chubbiness. She reluctantly relinquished her hold
over me and we continued on our trip.
Next stop, Ward 3c... We
walked toward the entrance to the ward and like a tidal wave, memories
surged back. What a time was had here. We didn't know who we might
find working today but entered assuming we'd find friends. No sooner
did we pass through the doors, but staring at us was the Kate the OT.
She came running over to see me. She was happy I was growing and please
to see that my mom and dad were on the outside looking in. She told us
to let her know if we like the OT we get in town and if not she'll help
us locate a better fit. She also mentioned that my followup swallow
study had yet to be scheduled but she would keep us posted. We thanked
her and said our so longs for now.
As we progressed around the
ward, there were a lot of new faces. We made it to the back of the ward
without seeing anyone familiar until we came across Sara. She was one
of my favourite nurses. She was very insightful, friendly, resourceful
and professional with us and the Rutledges during our mutual stay in
Room 10. She was also happy to see us and to see my progress. We
stayed for a few minutes to chat but had to keep moving as it turns out,
the A/C was not running very well on the ward and it was soooooo hot I
was sweating through my diaper. We said our goodbyes and gave our
condolences for the unbearable heat and left the ward.
It's alot easier to come and go when you're not a patient.
By
this time it was 3:00 and we were ready to pick up the meds. Dad and I
grabbed my treat bag, mom hoofed it back to the car and picked us up at
the door. We made tracks back home and were back in time for next
meal. All in all a successful outing.
Tuesday, we're off to get the next bloodwork done.
Hoping for more great numbers!
In other news, still no funny reactions to my immunizations! YAY! I'm in the clear :)
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