Thursday, September 15, 2011

Still dealing.

Every time I write a new post, I feel like all I say is how busy things are, but then, for every week for the past 3 weeks, things have been busy!

I'm still struggling with the DS and it seems like I'm struggling with it more now than I was the past few months and I still don't know why.  I guess I'm seeing even more things around me that remind me that our life isn't what I envisioned it being.  And I also think a big part of it is dealing with the stress that goes along with it.  The extra doctor appointments and scheduling therapies when really all I want to do is come home and pick up my baby and feed her, and eat dinner, and put her to bed and then try to finish all the normal things I used to have to do like pay bills, and clean the house, and do the laundry.  But now in addition to those things we have appointments and visits, and reviews, and medication, and a whole bedtime ritual for dealing with congestion and ear wax.  There are definitely times when I realize how our lives have changed just by the addition of a baby (any type of baby) as have our conversations with our friends (who knew how much you could discuss the eating habits of your kids?).  But there are also way too many times when I realize how our lives are different from other people around us because of the DS.

We took Tera in for her 6 month checkup last week and she's doing great.  She's up to 14 lbs and 26 inches.  On the typical chart she's in the 12th percentile for weight and 65th for length (which isn't surprising considering I'm 5'9" and her dad is 6'6") and she's alert and looks great.  But then we got the results of the thryroid screening we had done and it showed her TSH levels were elevated indicating early hypothyroidism. So now she's on Levothyroxin once a day, probably for the rest of her life, and we have to crush the pill up, put it in water and then use a dropper to get her to take it.  Luckily, she's been really great at taking it so far.  But that of course means the addition of another doctor.  This one, an endocrinologist, couldn't get her in until October 27.  We also have an appointment with an ENT the week before. 

I just keep looking at her and I'm so in love with that little face that it makes me want to cry knowing we made something so amazing.  And then I start on the emotional rollercoaster and sometimes it goes up when I think about how lucky we are, and then sometimes it just does this nosedive and flips me upside down to the point where I don't know how to deal with any of it. 

Today my sweet girl is home sick with an upset tummy and I have to say, I've loved being home with her again.  I wish it wasn't because she wasn't feeling well, but getting to spend my time with her this morning and just holding her today was so wonderful.  But tomorrow, it's back to work and school (hopefully) and then it's the weekend which Tom and I look so forward to and not only that, but on Sunday she makes her fashion debut at the Gigi's Playhouse Down with Fashion Show.  She's already been such a hit there, but I can't wait to show her off again :)

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