ANOTHER TRY FOR NEW PULMONOLOGIST
Dake had an appointment with the ONE
pulmonologist we found in the area who had at least seen one muscular dystrophy
patient. The office info us the doctor was not necessarily a Duchenne patient
but at least muscular dystrophy. So it
was worth a try to see if he will work with us.
Dake and I meet Lyndsey
and Brittany at Alabama A & M before his appointment. Lyndsey is looking at
a couple of masters programs there. She
was like a child in a candy store. It is
a joy as a parent to see your child have a passion for something. To know they have a desire do to something so
strong and productive.
The professors were
impressed with her credentials. (Of
course, my thought as her mom was if you are impressed with what is on paper
wait until you get to know her!!!)
She was overflowing so
much with passion she was offered a job before she had even committed to
enroll.
She has many decisions
to make ahead of her for her future. But
what a wonderful place to be, having choices is a blessing.
Dake and I left earlier
so he could eat before his appointment.
We arrived at the
new pulmonologist office an hour early.
I figured out I could get started on the mountain of paperwork I did not
receive in the mail. We went into the lobby and found the location of his
office. He was located close to the empty information desk in the lobby. The
door had his name and the other doctor he shares the office with was also on
the door. We tried to open the door but
the door was locked. This was early
afternoon time so I thought they must be at lunch. The info desk was empty and so I thought well
everyone must be at lunch. Neighboring
offices were busy with people coming in and out but I figured they had a
different policy. Five minutes till the
appointment time the info desk attendant returned and informed us that the
doctor had moved down the street. Really?... Seriously why not just put a sign
up people!!!! Better yet take down the
doctor’s name off the door!
Extremely frustrated
we rushed to the car as fast as we could with a wheelchair, waited for the one
speed folding ramp to unfold, lower, wait for Dake to adjust his chair so he
would bump his head, raise the ramp and wait for him to carefully drive in the
van so he doesn’t give himself a scalp job, close both doors and now for me to
jump in.
We arrived at the new office and
repeated the above process in reverse and enter the waiting room drenched with
sweat. We explained to the receptionist
our challenges. She replied, Yeah, we
moved last October. This was our first
time here. A sign would have been nice.
And the internet contact info needs a little update too. She wasn’t to
compassion about our dilemma. We received the mountain of paper work and began
filling them out. I was thinking, well, I guess we are the only ones with
having trouble finding his new office until another man came in with a similar
story. (She did not seem to bothered
about him either.)
Finally, after witnessing some waiting
room drama with other patients we went back to see the doctor.
(Not getting a good feeling at this
point but we will see.)
The doctor came in and was
knowledgeable about Duchenne . He seems to be willing to work with us with the
pulmonology issues. The thing that bothered me most was he was very negative
about telling us there is no cure and he was limited in what he could do and
most boys don’t live very long. (Of course we know all about Duchenne’s and the negative sides . Dake could probably
teach him a thing or two. ) I told him, “I just wanted to know if you are willing to
work with us….I KNOW you are not God. “
He agreed and that was that. He wants
to do some testing after our Baltimore trip.
I just don’t want to be bombard with
the negatives of the disease when our lives currently is positive with the
disease. We all know this can change in a minute but let us enjoy the good
while we can. It helps anybody to say
encouraging words to them.
Dake said maybe he thought we didn’t
know. I said, “Surely he did you have
out lived all the ones you have known. They were almost all younger than
you. He had to know we knew the doom and
gloom side because you are eight years over what the doctor’s said you would live!”
Our former pulmonologist who moved to
Arizona was so encouraging and made Dake want to work at stay healthy. I
really miss him. I think maybe I could
have used a little encouragement from doctor too.
But we at least have one familiar with
muscular dystrophy and we are going to focus on that!!!!
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