Morgan has been fighting a cold for the last week. This
means it has been a exhausting routine of clearing out her nose, taking her to
the pediatrician to be examined, having the nurses suction her out and restless
nights. We even spent some time at the Respiratory Clinic in Alta Hospital.
Luckily, her cold has not evolved into something else. No ear infection or any
other secondary problems. Just a really bad cold. But she sounded absolutely
terrible on her 7th day of the cold. She had no fever and no other symptoms but
she sounded like there was a motor lodged in her throat. Not wanting to take
any chances with her delicate health, I made yet another appointment with our
pediatrician's office.
Our pediatrician's office consists of several doctors but,
at my insistence, we deal solely with
Dr. Conover. She began following Morgan's case since before Morgan was released
from the hospital at 2 months old and has been involved in every aspect of her
care from that point forward. She knows Morgan's complicated medical history
and during Morgan's rather intense treatment of infantile spasms, saw us twice
a week for a time. We feel completely comfortable with her and our appointments
are seamless interactions where only the most current issue and bits of
information are shared.
So when I called, I was a little dismayed to find that she
was completely overrun with patients and there simply was no way to squeeze
Morgan in. I was okay with it. Morgan needed to be seen whether by her regular
doctor or someone else, at least I could get her checked out. We were scheduled
to be there in a couple hours.
I knew what a different doctor meant. It meant explaining. It
meant going over Morgan's complex medical history. It meant questions. I did a
mental sigh as I got the kids ready to go. I knew what to expect.
We got there and went in through the back door (this should
tell you how well they know us) and was shown into an examination room. Once
the nurse was done taking all of Morgan's vitals, the doctor came in. He asked
me all kinds of question while reading her chart and, like all doctors who
first encounter Morgan, he examined her with curiosity and interest.
Then he asked me, "is she expected to talk?"
Some questions are easier to answer than others. Yes, she is
delayed. Yes, seizures are a part of her syndrome. No, despite some struggles,
she eats quite well. But "Is she expected to talk?" Meaning, will she
ever speak? Is a hard question to answer.
Mainly because I don't know. I don't know if she will or if
she won't. No one knows. It's entirely up to Morgan. So I answered the doctor
the best I could. "She may. I guess
kids with her syndrome range from non-verbal to kids who speak quite
well." That was about all I could manage.
I'm not used to answering so many difficult questions.
Questions about what my daughter may or may not be able to do. And I'm not used
to the many questions from doctors and people who encounter her. I know there is
a chance that Morgan could be non-verbal. But I also know there is a chance
that she will speak and be able to express herself. I know that speech therapy
will be in her near future. From that point on, who knows.
After receiving my daughters Dup15 diagnosis, I've said I'm glad we didn't know until now, my daughter is almost 9. During those formative years, I didn't know how severely affected some Dup15 children are and so I never expected anything other than normal baby stuff. I'm sure other families have said this to you, but I think it's worth saying again. Follow the path your daughter makes and not the path you read about online. And keep your goals high, don't set the bar too low. Question: why haven't all of the doctors in your pediatrician's office been briefed about your daughter's medical situation?
ReplyDeleteThank you. It is a good point to repeat. I remind myself that she is on her own path and that these delays are just that. Delays. And that she will be able to do everything in time. I'm glad we got the diagnosis early otherwise we might not have caught her seizures so early. But it is not an easy thing to deal with and I can't imagine it's easy at any age. Good question. I don't know why all the doctors haven't been made aware of her medical condition. Perhaps a good question for me to ask next appointment.
DeleteZOMG! Hello, my child has a cold. Please treat for it. Oh hi, I'm dr. Ass. Will your child talk? No she is to little and I will speak for her. Bed side mannerisms > dr. Ass.
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