Sunday, August 5, 2012

Pity party for 1

Today is one of those days I'm just going to come out and say "This Sucks."

The weekend was great.  We had no plans and it was nice to finally not be running all over the place.  Last night Tera stayed with Tom's parents so we could get a few things done at home that are harder with her here and to also maybe catch up on some sleep.  Today was fine too, but at some point I started thinking about this coming and week and I began to realize I wasn't looking forward to it.  Tera has therapy tomorrow morning, her 18 month review tomorrow afternoon, therapy at school on Tuesday and a check up with her cardiologist Tuesday afternoon, therapy Wednesday morning, and therapy Friday morning.  A whole lot of fun we have planned.

The other realization I had today that wasn't helping my mood was her list of medications I have to remember.  I know I've listed this before but it's a thyroid pill and a two sprays of Nasonex every morning (the Nasonex has to be after I suction her nose first).  At dinner we have to giver her yogurt with a probiotic, flax seed, and a multivitamin to help with her stomach problems.  Then after dinner we have to administer her nebulizer which means holding a mask to her face and holding her arms down so she can't fight us for about eight minutes.  We can usually get about five minutes total without her fighting us and the rest of the time we're trying to hold the mask on a squirmy kid.  Add to this five drops in each ear twice a day since last Wednesday to help prevent infection after her tubes.  She hates the ear drops and she's not too fond of the nebulizer either so knowing both of those things needed to be done this afternoon kind of kick started this pity party for me.

Basically I'm burned out Tera's "extra" stuff.  It also occurred to me last week that Tera has thus far accumulated four hospital bracelets in her 17 months.  I understand of course that this could be far worse.  I am still so incredibly thankful every single day that while Tera's heart isn't perfectly healthy, she's never been in danger of needing surgery and that so many other kids with DS do.

I HATE when my girl has to have wires on her :(
This is all going to sound a little odd after I just posted a beautiful story about why DS shouldn't be eradicated with the introduction and continued use of the new prenatal DS test, but I'm always honest here and it just sucks to me today.  It probably also didn't help that Tera wasn't quite herself today, a little clingier, tired, and more subdued than usual all of which I can handle as long as it doesn't mean she's getting sick again.  I did the usual check for any new teeth and I can't feel any so I'm just hoping it was an off day for her; Tom and I were also exhausted so maybe it was just a general feeling in our little family.

Tomorrow is Tera's review and we'll see what all her therapists have to say about her progress.  I'm hoping it makes me feel a little better about all of this.


A much better way to spend my time with her :)

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