While you were sleeping...

I've been finding myself lately reverting back to my stalkerish days at the beginning of Alexa's life where I would just watch her sleep for hours.  Thinking she was the most exciting amazing little thing, I'd ever seen.  Not that the feelings have changed over the past 20 months it's just that things have become a little more routine.  Lately though I'm bck to breathing in every single second of her life.  I dont want to miss anything and want to treasure every moment we have with her.  I feel like the horrible past couple of weeks have opened my eyes to the fragility of her life.  I need to start preparing myself for the worse case scenario.  I know that sounds morbid, but I've been so scared since this past weekend.  I cant seem to rid my brain of the look in her eyes, when I realized she was just giving up.  It was like she just wanted it all to end, because she was so tired of fighting, and I wouldnt let her.  I look at her in her good moments and see how full of life she is, and its so decieving because it gives me that false sense of security that everything is going to be alright.  It's not...  There will be a time when I cant revive her or make her breathe.  It's not a question of if but when.  How do you prepare yourself for that?  How can I make myself accept this?  I dont want to ever have to accept this, it feels so unfair. 

We think Alexa may have had a seizure today, but arent sure.  It doesnt really make sense though because she has never had a seizure that we know of in the past.  She just lost all control of her body, and was completely unresponsive and her eyes were twitching back and forth with no focus.  Kevin who is usually so calm was panicked, and I just reacted like this was a normal every day occurance, but am very shaken now.  I keep replaying it in my mind.  Shes also had quite a few apneic episodes, and is still requiring more frequent suctioning. 

We go tomorrow to get her GJtube changed which is so traumatic for her.  Imagine being a tiny person in a world of giants, brought into a strange room with huge equipment and tons of giants in gowns and masks.  Getting strapped to this huge  table underneath this scary machine, and held down by 3 of those masked faces while they poke and prod at your already tender belly.  She probably thinks she's their next meal.  I know I would.

I was going to take the girls to the aquarium tomorrow because we're studying ocean life this week.  Alexa just wont be able to physically manage it.  She just gets so exhausted so easily these days, and we have to reserve all her energy for her nights.  I just hate that I have to disappoint Kaylie again.  I usually try not to tell her until the day of as we so frequently have to cancel plans.  But ALexa's hearing therapist was here today and I mentioned it to her, Kaylie overheard getting soooo excited.  We'll have to plan it for another time, I just dread taking Kaylie out to Boston for a long day at Childrens with that disappointment hanging over her head.  She's a good girl, but she has had to take so much disappoinmtent in her young life. 

I wrote most of this last night in the midst of her apnea spells.  With the morning light comes new perspective, and although we do feel that things have worsened it doesnt necessarily mean we will ever stop fighting and I need to keep the mindset that we will NOT lose her.  After reading back over some of my recent posts I realize that I've been sounding so negative.  I think that negative thought process  impacts greatly the way I'm feeling lately, and I need to stop worrying so much.   Alexa is still here and she is still fighting, she just had a weak moment.