Monday, February 18, 2013

Worry is my new hobby...

Tera's extra chromosome and I are not on the best of terms right now.  Most days I can go without really thinking about it, maybe a fleeting thought here and there, but not consuming my every waking moment like it did in those early months.  Today I'm reminded of those early months.  As I write this I'm sitting in my living room; which I seldom use for this purpose anymore, but did almost daily at the beginning.  Tom and I were surprised by how little time we spent downstairs in the weeks and months following Tera's birth and my computer, at that time safe from investigative little hands, sat permanently on our dining room table.  An outlet for me when I was home alone, a tool to research everything that was so unknown, and my first experience getting it all out electronically and publicly.

Today is also Tera's Early Intervention Annual Review.  It's almost hard to believe we started this process two years ago now as it seems like it's been a part of life for so much longer.  It's even harder to believe that at this time next year, it will be a transition meeting for her to move into Early Childhood and be a part of an actual classroom for several hours a day.  Away from us, away from the comforts and familiarity of her daycare, and a little more out in the world.  I will admit it's a bit unnerving and scary, but we have a whole year before that happens so I can focus on all the things that are worrying me now.

As I sit here I watch our digital frame methodically cycle through the hundreds of pictures we've taken of her since she was born.  I ordered that frame the week we were finally able to bring her home, in fact it might have been the day the we did, and at a time that Tom was wanting to do anything for me, and us, that would help us get through the shock and fear of her diagnosis and help us celebrate her just being with us.  As soon as we got it I loaded it full of every picture we had of her at that point and have continued adding to it regularly.  On an almost daily basis I watch those pictures scroll through and am reminded of how delicate she was and with almost every picture, I can remember the feelings that I was experiencing at that time.  Some days were hard, but I loved that time I was able to spend with her.  People always say that newborns are so difficult, but Tera was such an easy baby (medical issues aside) and while I adore her personality and energy, she's a little bit more of a handful now.  Those days I was able to just hold her and watch her sleep for hours and I really enjoyed that bonding time.

And then there's now.  We have been trying to get through these past several weeks with our sanity in tact, but I have to say, I feel we're losing the battle.  I don't even know how many doctor appointments she's had now; I've lost track.  She's still waking up most mornings before or right around 5am.  She sleeps through the night most of the week, but we usually average about one bad night a week.  Her nose is still running pretty much non stop, her cough is marginally less, but not any better sounding, I think her sinus infection and ear infection are getting better, but it's difficult to tell and she still has four more days of antibiotic left.  Our mornings consist of two nebulizer treatments that she sometimes does well with, sometimes doesn't, and a thyroid pill she's decided to become more difficult with.  Whether at school or at home, she has another treatment at around 11am and then another around 3pm.  Her eating is sporadic but at least weight gain isn't as much of a problem anymore.  Then we try and guess what she might possibly eat for dinner, which sometimes is little to nothing, play for a while, maybe give her a bath during which she hates having her hair washed, then start getting her ready for bed.  Getting ready for bed these days consists of ear drops in both ears, saline spray in her nose, brushing her teeth, an antibiotic and ibuprofen for whatever is currently causing her discomfort, and then her last two nebulizer treatments of the day during which she usually falls asleep.   Most nights we then listen to her cough for a good half hour at least looking at each other each time, acknowledging that it still sounds awful, every once a while racing up the stairs because it sounds like she might be throwing up, and shaking our heads wondering when it will stop and why it's still happening at all.  See my biggest source of frustration and complete mental exhaustion these days, is a lack of answers.  She's had this cough for almost a month now and no one can really tell me why or what to do about it.  I feel like the nebulizer treatments, while probably preventing it from getting worse, are not making her any better.  Her antibiotic is only treating the infections, not the cough, and the infections aren't the reasons for the cough because they came along well after she'd started coughing.

I'm still waiting on results from the pulmonologist and my concern now is that the blood work we sent him from months and months ago, isn't going to be useful and he'll want to do another test.  Which means more waiting.

I'm getting more sleep than I was a week ago, but I'm just so tired of thinking about every single thing that is wrong with her.  My family is worried about me (and Tera of course) and I'm worried about her and there's nothing any of us can do about any of it, but try and get through it.

Fortunately next weekend is the Gigi's Playhouse Gala.  We get to get dressed up, have a nice dinner, enjoy being with our amazing friends and family that are joining us, and we're spending the night in the hotel while Tera stays with my mom and we can hopefully get a good night's sleep with her in more than capable hands. The following weekend is her birthday party and my sister and her boyfriend will be up for the first time in a year to stay with us and spend some time with her.  I have a lot to look forward to, now I just have to make through the weeks in between.

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