As you may have read in my last post we were visiting family for the holidays but we have returned home back to “normal life” with all of the same issues we had before we left. Some of these issues are normal for a two year old but most aren’t. If you don’t already know Jasmine has a Urea Cycle Disorder called OTC. Basically she can not process protein the same way everyone else can.
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| Jasmine celebrating the new year |
I’ve been told that trouble with sleeping can be related to
her condition. If her levels are high she gets sleepy and that can be dangerous
because she could slip into a coma. We have been experiencing the opposite
effect ever since her diagnosis and introduction of medications.
Jasmine was diagnosed several months ago now and since that
time we have been puzzled by her weird sleeping habits. Sometimes we put her to
sleep early only to be frustrated when she wakes in the middle of the night and
cannot get back to sleep. So we started putting her to bed a little later. Some
nights she wakes and some night she doesn’t. So far we cannot figure out what
the cause is.
Getting her to sleep is also an issue so we have started
doing a nighttime massage and singing to calm down. This has so far been
effective. Right now we also have little sister who is still nursing so
nighttime is very hard and mommas going CRAZY! Little sister refuses to drink from a bottle right now so that will also take some work!
Our new plan is to focus on meal times and g-tube feedings
at specific times during the day. This is important because we have “eating
issues” where jasmine refuses absolutely everything to eat and because of her
condition she then needs a feeding by tube to supplement her nutrition. We are looking into food and eating therapy as
well as trying to play with our food to become more comfortable with eating.
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| Jasmine eating... or making a mess.... |
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