School is done for the year and summer has finally arrived
what means a bit of a break for all of us. Both my kids have done well in school this year and they deserve credit for that!
Also a good time to get as many medical
appointments done as we can so both school and work are interrupted as little
as possible! With my son recently diagnosed, the whole circus is in full gear
again.
Our first official day of summer holidays was spent at the
Calgary Children’s Hospital to have MRI’s done of both hands and wrists. My
daughter and her boyfriend tagged along and spend part of the day shopping in
the close by mall.
We left our house at 7:30 am and came home at 9:30 pm. A
long day for 2 twenty-five minute MRI’s.
Thankful that it is done though, and thankful for the thorough care we receive.
I read and hear many horror
stories about healthcare and how people are disappointed or let down by it. I
can honestly say I am grateful, very satisfied, and amazed by the level of professionalism
and knowledge each and every one of the medical professionals we have had the
pleasure of meeting with, displayed. Perhaps the
most important reason I am so happy with the care we receive is the fact that
we always feel we are being heard, we always are reassured and we are always
treated well, with respect and empathy. My kids are two young people and are
being treated that way, they are not a case, a number or a file, they are two
young individuals , each their own self and I feel they are being appreciated
for who they are, not for what they have.
So, all in all, a
long day, but hopefully the results of the MRI’s are positive and give us a
good point of reference.
Next on the medical agenda was a clinic appointment, two
days later. The positive thing about having 2 children with the same condition
is you can occasionally combine appointments, so that’s what we did and that was
a bonus! Boy child had an appointment at 9:45 , followed by an appointment with
the OT at 11:00 and the girl child had her appointment at 10:30, so that was
all booked very efficiently!
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| Brother and sister filling out their check lists! |
I have not seen huge improvement when it comes to the
swelling in my boy’s fingers since he started medication a month ago. The doc
agreed and added another drug to the mix. She started discussing the potential
use of a biologic in the future for him as well, but before we get to that there is a certain
trajectory that needs to be followed and she needs to give the current
medication a fair chance before we can consider another approach.
For now he will be using Methotrexate,
Prednisone, Naprosyn, folic acid and now Sulfasalazine was added to the
mix. A referral for the ophthalmologist
was made and blood work was ordered.
The OT (Occupational Therapist) did an
initial assessment, it will be more thorough with our next visit, since we were
a bit pressed for time this time around! She did give some helpful tips and we
discussed the potential use of night splints in the future.
The girl child is doing well. There was a tiny bit of
swelling noticeable in two of her fingers, but that was it. Since there were
never MRI’s done of her hands, the doctor
wanted them done before she enters adult care so they were ordered.She is starting to
prepare to transition to adult care.
Again, the thought of that makes me sad
and melancholic, because I think we will have a hard time when it comes to
allowing another doctor in to our lives and saying goodbye to the fantastic
lady who’s been treating my daughter ever since she was diagnosed.
Come to think of it, another advantage of
having two children with the same specialist: we get to hang on to her for just
a bit longer! Overall a positive visit for my daughter so we will keep on doing
what we are doing!
Next appointment is set for September, for both of them. We shall see what
that will bring!
For the afternoon my kids were asked if they would be
willing to volunteer as “guinea pigs” for medical students. Medical students
were to practice physical , MSK (muscular
skeletal if my medical terminology is
correct!) exams of the upper extremities in a pediatric patient. From the
Children’s Hospital we moved (approximately 5 km, if even) to the Health and
Sciences Centre, which houses a Medical Skills Centre.
If you picture a
country girl finding her way around in a big city you can imagine some slapstick
like actions and I would have to admit you would be pretty accurate in your
assumptions, but that’s a story all by itself and I will spare you that!
We
made it to where we were supposed to be and that’s what matters!
As it appears, medical students usually practice their
physical exams on actors. They were nervous and excited when they were informed
they got to practice on actual patients. Both my daughter and my son were
escorted to exam rooms, each accompanied by a physician ,who was there to score
the formative exam the students were doing and to provide them with feedback. I
sneaked in the exam room my son was in, just because I was curious to witness the
process.
It was great to be part of, nice to see what they focus on, and how
they interact with patients. It seems to me it is a very valuable part of their
education because books and professors will teach you a lot but real life
patients and experience are probably what will teach you the most. I can only
imagine how awkward it must be to actually touch people, that you have no
relationship with, for the first time. You have a couple of seconds to build a
relationship, then you have to focus on your findings, ask questions, observe,
and stick to what’s relevant! There was 10 minutes allowed for each exam and there were 9 students examining each child ( 18 students all together!).
We were treated to a nice lunch and the kids each
got a gift card to Chapters as a token of appreciation.
An interesting
experience for all of us, and guess what; we even made it back home to our peaceful homestead in the countryside in one
piece!
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| Home sweet home! |
