Today started out as a disheartening day. We took Alex to the
neurologist for his 6 month checkup and things just didn’t go the way I had
hoped they would. I went into the appointment with a positive outlook, hoping
Dr. Trock would be impressed with Alex’s progress, have some positive feedback….but
he didn’t.
This was our third appointment with him and I have been very
pleased with his demeanor in the past 2 visits, but not today. He seemed off
and even a little rude. He barely spoke to us. He sat there and was waiting for
us to just do all the talking and to fill in the blanks. I just don’t know
about these Doctors.
At our first visit, he seemed positive saying Alex would
walk and the main part of his brain that was affected was his motor area.
Cognitive and Vision appeared to be fine. Now, he’s not sure how well he will
walk and when I asked about learning and speech delays, he told me there is a
good chance of it since that is what the statistics show. I mentioned how he
said the MRI showed that the cognitive area seemed unaffected and he told me
that sometimes it’s harder to see that on the scan. It was as if he was taking
back everything he had said up to that point. I felt like I had been
blindsided.
I know that all of these things are in question because Alex
does have CP and it seems to be more on the moderate end of the scale even
though I want to believe it is mild. Needless to say, I left the appointment
upset, frustrated and feeling like we totally had a setback. I wondered if I
should change Doctors as well.
Eric and I talked about it and in talking things out I
realized that this Doctor doesn’t know Alex at all. He doesn’t work with him on
a weekly or even daily basis. All he knows is his medical history and that’s
why he only responds to us in medical terms and statistics. I don’t want to
compare Alex to the statistics. Why should I? He is his own little person and
he is capable of so much and I believe in him because I have seen him make
progress.
Yes, I wish Alex were able to do more, like sitting and
crawling and standing and walking. But he can’t yet but it doesn’t mean that he
won’t ever be able to do these things. He works harder than any 18 month old I
know. It’s a lot of work for him to go through 6 hours of therapy a week and it’s
frustrating to me that he still can’t control his muscle movements, but you
know what….it doesn’t seem to bother him because he doesn’t know any different.
This whole process is 100 times harder on me emotionally than it probably is on
him physically. This is who he is and this is what he knows. It’s hard for me
to understand because I don’t have the issues he has so I want to feel sorry
for him, but he doesn’t care. He is just a beautiful boy who loves to smile and
laugh at his crazy funny brother. He isn’t suffering, he is fully loved and
taken care of and he will have a great life because we are all going to make
sure of that.
Alex is going to do what he is going to do and I am not
going to let any Doctor out there get me down. I wish I could see into the
future to know what will come of all of this, but I can’t. We can only take one
day at a time and hope and pray for the best. I will never stop believing in
him.
If it makes you feel any better, we had an almost identical appointment with our neurologist a couple weeks ago. Seriously, I could have written this EXACT post, even down to the fact that we have also seen ours twice, and the first two times she was fine - positive even. Then this last time - BAM. It was horrible. But after I got over the tears and anger I also thought the same thing as you: this doctor doesn't know him. That is worth way more than any scan or statistic. But still, I know too well how hard it is to hear. Thinking of you.
ReplyDeleteThank you for the kind words. As much as we go through as parents of special needs children, it's still nice to know there are others out there who understand and can relate. :)
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