Peyton had a Swallow Study done
yesterday at Mission Hospital. This was
because there has been some concern of aspiration when she eats her food and
drinks her bottle due to some coughing we have observed. Needless to say, we were not looking forward
to this mostly because she couldn’t eat that morning till the study time – 10am!!
Those of you that know Peyton know that she is a schedule girl and really likes
her routine. Getting her out of her
routine can sometimes have disastrous results – like hours and hours and hours
of crying. Soooooo….needless to say we were less than thrilled about the waiting
till 10am to feed her!! Miraculously, she handled the lack of food well and was
only starting to fuss a little bit when we actually went in for the study. I was fascinated with the whole process. They had us bring Peyton’s food with us – a bottle,
her regular food and her sippy cup (YES, a sippy cup – we’ll get to that
progress in a minute!). They put the
barium in her bottle and a little bit of barium mixed with her food. I was able to go in with her and give her the
bottle with the barium and she was hungry enough that she took it even tho’ it
is not the best tasting stuff. I then
fed her a few bites of her food mixed with barium. Thankfully, they did not see any signs of
aspiration and she handled both the bottle and food well. It appears she may be outgrowing her bottle
so we discussed some other options for giving her formula and will work with
her speech therapist towards this. She
is still at a higher risk for aspiration due to her many delays and other
issues, but we are very thankful for the news that this does not appear to be a
current problem for her.
On to the afore mentioned sippy cup
usage – girlfriend is using a sippy cup now with water in it. She holds on to the handles and needs minimal
support from us to be able to drink out of it.
It is amazing to see since 3 months ago, she had absolutely zero
interest in using a sippy cup, much less using it independently. Sometimes, she even swats our hands away when
she is trying to use it. We love to see
that attitude!
Check out the mad sippy cup skills this girl has!
And another thing…..she is occasionally
sitting unassisted for short periods of time.
Not every day, but usually several times a week so we know it’s just not
a one hit wonder as many things are with her.
This is exciting to see and just one more notch on her development belt!
Sitting unassisted
Her personality emerges more and more
and although we don’t see big smiles and giggles, we do see little smiles and
happy eyes. We are just thankful to see
her express herself and know that she is content. Most of the first two years of her life were
spent with us never knowing if she was happy, sad, miserable or in pain so it’s
really been a blessing to be able to see contentment in her eyes.
getting ready to take a ride with her favorite brother
In the Stander
Grabbing her toys
Little bit grumpy during OT:-)
We go to Chapel Hill tomorrow for a
routine appointment with her neurologist and dietitian. I am anxious for him to see her and all the
progress she has made since he last laid eyes on her six months ago at the
awful MRI appointment. We will be
talking to him about the increase we have seen in her seizures recently and the
fact that she is spilling large ketones when she’s having the seizures. Worries me that maybe the keto diet is not
working as well as it used to. I surely
don’t want to get back on the seizure meds merry go round.
I will post an update about the
appointment over the weekend instead of two months from now which is sometimes
my habit!!
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