She developed a cough in October
and slowly but surely the
cough got worse and she developed
uh... she struggled more with food intake.
So the drop-off was very quick.
She failed the swallow study that we had scheduled.
She was admitted to the emergency room that day for failure to thrive
for a need for an IV for liquids because she was dehydrated. Not only
failing to thrive, but she was also dehydrated which is very, very very serious for an
SMA child.
So it was decision time and what to do and
we decided that she said this was the point where she should actually have
a G-tube,
a gastronomy tube,
a procedure performed so that she can get proper nutrition
and proper hydration.
but then she developed an aspiration pneumonia while in the
hospital
and she suffered severe respiratory distress
while waiting for this procedure.
So she was intubated for a period of time
and had the procedure.
And she did -- it was a
tough
few weeks before she got strong enough to be extubated and what it
miraculously
turned out very well for her and it --
she got strong enough for us to start thinking about taking her home.
And that was the whole process in itself
of trying to get because she does have
nursing needs, she does have -- she now had new equipment needs.
She was now using a BiPAP machine to help her lungs expand what she's resting,
when she's asleep.
And she also had new nutritional needs
and new treatment needs
and that whole process of bringing your child home
is quite laborious
for an SMA.
But we got there and after fifty eight days in the ICU, we came home
in January
of two thousand eleven
she's done quite well since. You know, as you said she's been back to the hospital
a couple times for
what we would call minor respiratory distress,
but again she's got stronger and we've learned to cope with it better at home.
She has wonderful nursing
she has now stepped up on her therapies. She has physical therapy five times a
week,
speech therapy three times a week,
occupational therapy three times a week. She has myriad of adaptive equipments,
which helps her
posture.
And she still showing great signs of strength. It is a progressive disease so
we don't know at what point
she will reach a plateau.
We thought she had actually reached that plateau.
You know, it was amazing that,
you know, when she was having the difficulties eating we thought okay,
now she's reached it, now we've come to that point that we were warned about.
But then at the same time, you know, she started progressing or improving in
certain ways.
You know, her arm movement I have to say during the hospital there was physical
therapy, we were
very excited how well she was doing.
And then even since she's been home from the hospital, she had actually developed
an ability to sit for, you know, for a short period of time
and she wasn't doing that before. So it's like we have reached a plateau
and then go
a little better, maybe we've reached a plateau.
And then there are certain things that she's not doing as well, you know.
Progression in her speech, relative to progression of her gross motor skills,
we've just been
really pleasantly surprised at how well she's been able to develop speech and I
know you were talking about how she can
count and say letters.
And it's so amazing because
of her inability to eat
and we understand about the connection between eating and speech, you know, it's
all interrelated.
And, you know, since she's unable to eat by mouth,
we're just happy that with the therapies
and with us constantly talking to her and using some some
techniques, you know, some facial massage
that she is she is able to develop speech.
Yeah. There's definitely a lot of talk in this house.