When
Sonzee was first diagnosed with epilepsy and then shortly after with CDKL5, I
would only bring up CDKL5 as the reasoning behind her daily seizure activity if
asked, but would just tell inquiring minds that she had epilepsy. As we
added more diagnoses to her file she morphed into what I would begin to refer
to as a "medically complex" child. It was easier for me to
summarize her to others with two words vs going into the extensive list of
specific difficulties she presents with. I never really considered that
even within the land of medically complex she could
be even more complex than any of her diagnoses summarized.
We flew 2,344 miles from our home to have motility testing ran to
help us treat her better. In my mind, I assumed the results would match
up with her symptoms and various GI diagnoses, and they would confirm that her
stomach could not tolerate food. I assumed we might be given different
ways to manage her symptoms, but that at the very least her body would perform
in the same manner it has for us each and every time we have tried to reboot
her system and use her stomach. Yet here we are and so far every single
test is coming back normal. Do not get me wrong, this is
great in terms that her stomach is emptying appropriately, and we have specific
evidence she has bad reflux, but it is also extremely disheartening because we do
not seem to have a straight forward clear answer as to why she cannot
tolerate being fed through her stomach daily.
I suppose that is an answer, it shows there is no physical reason
as to why she cannot tolerate foods. It shows that theoretically, with
time, we could transition some if not all her feeds back to her stomach.
It shows there might be potential for her to be fed by her mouth versus a
feeding tube (given she does not aspirate). However, it leaves us having
to sift through the neurological component that is CDKL5. It means that
despite my best efforts to not use CDKL5 as the reason for everything Sonzee
related, it seems to be the "only" answer to why that we
have left.
Since she was born I have always been on the search to uncover the
cause behind her symptoms. Maybe that is what all parents do when they
are handed their unexpected present of a medically complex child. In our
case we found our overall why and it is known as CDKL5.
Maybe it is just me, but I used to think and say that if I knew the
reason behind the "why" that I would be okay, that it was all I needed
to know. Maybe there is just no pleasing me, but I feel there SHOULD be
an actual answer to why, other than CDKL5, because all I have learned in 2.5 years is
that CDKL5 does not give us any answers and it certainly is not an answer in and of itself. Then again, maybe there will never be actual answers and I should just stop searching...
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