Haven't Celebrated Gracie's Birthday...

Despite the fact that April 16th has come and gone, we haven't yet celebrated Miss Gracie's birthday. She is, I am sad to report, not well at all.

She awoke on Thursday, her birthday, grimacing and very teary. Wednesday had been a very busy day of appointments and being that it was also particularly windy that day, I wasn't too surprised that Wednesday night was exceptionally rough for her. But as Thursday wore on, and we still hadn't seen much more than a glimpse of a smile when she'd uncover her sighted eye to let in a split second of light, I knew that something more than a "rough night" was affecting her.

She didn't emerge from her room until the late afternoon and made a pit stop in a dark portion of our hallway, only to fall asleep again for about 45 minutes. Finally, just before 5pm, she begged for a bath and I, of course, obliged. Baths are a favorite and it really seemed to perk her up. We took the obligatory "birth day" photo (in her pajamas, post bath) and then around 8:45pm she was tired and ready to go back to her room. Friday was much the same, though a bit more light sensitive and she waited until after 5pm to leave her room. She perked up a bit upon seeing her Nana (who arrived Friday), but didn't give her the excited, loving reception she normally does.

Today was the worst so far... she didn't leave her room until tonight around 9pm. She finally asked for a bath when she uncovered her (still incredibly light sensitive) eye around 9:30pm and saw the light on in the bathroom. Of course, once again I obliged, giving her the one thing that seems to be bringing a bit of joy to her day. She perked up for a bit, tolerated about half her nebulizer treatment before getting furious and was back in her room falling asleep at 11pm. She didn't want me near her, so I am typing within earshot of her, but not where she can see me. She has been hysterical over any light, teary with any movement not initiated by her (i.e. diaper changes, suctioning, washing her face...) and is "sleeping" very fitfully... only about 45-60 restless minutes at a time and then she wakes up fussy and rocks to try and soothe herself. We are barely keeping her fluids up, but she is hydrated just enough to maintain. She's not tolerating much interference from any of us, but the moment that she has a lapse in whatever it is that's ailing her, she always offers up a little grin and some love... but that's really rare during the last 72 hours and happens only during those brief couple of hours when she rallies in the evening.

It's been a long while since we've seen her like this... and it is heartbreaking. In fact, I can't remember a 3+ day stretch of this magnitude in a long time... over a year for sure. It's not entirely clear what's ailing her - - a resurgence of her debilitating migraines, allergies, her heart... It could be any, all or none of these things. At this point, we've chosen to keep her at home and not head to the hospital. Her doctors here don't know us or her well enough to chat about her over the phone and pre-admit her. (It's in these situations that we miss most of her former medical team - - if we called about her needing to be admitted, we never had to wait in the ER.) Thus, when we take her in, it will mean hours in the ER trying to explain exactly why we brought her in and "she's miserable" isn't usually compelling enough to get you from the ER triage into a room. Her lungs are clear, she doesn't have a fever, her pacemaker isn't failing... and we have the equipment and knowledge to monitor and care for her at home... which is far better than the hospital. If, however, she's not markedly better by tomorrow afternoon, then we are taking her in.

It breaks our hearts to see her like this. There are so many ups and downs in her world - - and it seems that just when there are lots of wonderful "ups," she's blossoming and we make plans, things come crashing down and we are reminded how truly fragile her health is. Her first day of school is supposed to be Wednesday - - five months and one day from her last day of school when we moved. I am still hopeful (though realistic, too) that she will somehow be recovered and ready by then... she needs this, she deserves this, and up until Wednesday night, she was ready for this.