Nearly Normal

What? Don't your babies wear headphones? So, this was a failed attempt at blocking stimuli so that, hopefully, Keira could better tolerate certain situations like church, the rec center, and the school carnival. This was the only one made for babies and the funny thing is...it's too tight on her head (remember: she has a really small head)! So, it squishes her cheeks into a fish face. Cute, but no. 

Things have been really good the past few weeks. I still have lows, but find that, for the most part, if I ride it out rather than fighting it, I usually feel better within a day. More and more I feel like life is almost normal. By normal, I mean that I feel pretty much like things are flowing smoothly, in spite of the fact that I still need lots of help (I may always need lots of help). Normal in that each doctor appointment feels routine and not like the highlight of the week. Normal in that some days, the boys' needs take precedent over Keira's. Normal in that I can have the neighbor girl come over to hang out with Keira while I do an errand because, after all, she's just a baby! Normal in that I can play in the garden for 30 minutes while K lies on a blanket and makes faces at the breeze. Normal in that even though I still think about K pretty much constantly, I'm able to talk about other things, go to coffee with a friend, and even paint my nails. 

We have essentially graduated from the infectious disease specialist. It's kind of bittersweet. I'll miss having a doctor that really knows CMV. However, CMV is no longer the point of all these appointments. The point now is that her development is behind. Also, I think I feel a bond to this particular doctor because he has been with us from the beginning, even in the NICU. It feels a little like leaving home for the first time. 

Keira is doing well. She is developing. Slowly. She rolls a little. She's strengthening her core muscles little by little. She makes quite a few noises. She recovers from being overwhelmed much more easily. She is better at riding in the car. She naps sometimes. And she laughs. Oh boy. It's pretty easy to get her to smile and laugh these days. I tell myself that if all she is ever able to do is smile, then that will be enough. I hope I mean that. 

I felt so good recently that I dared to look at K's MRI again. I was curious to look at it now that the postpartum fog has settled. Oo. Not pretty. I dare to think that maybe, maybe some of that dead space is filling in somewhat. I came really close to posting an image of it for you on here. Maybe one of these times. It's fascinating. 

I realize that there is a certain amount of tough skin required in order to go out and about. I have to pretend it doesn't matter when people say "Congratulations" because they think I have a brand new baby. I have to be willing to talk about it. No, that's not it. I have to be willing to NOT talk about it. When K is with me, I feel like her disability is an elephant in the room, so to speak. So, I find myself feeling most at ease when someone brings the conversation around to that. I found myself feeling so relieved and happy and grateful to a neighbor who recently asked in casual conversation, "What does she do in therapy?" and "Will she have to be in a wheelchair?" So much nicer than a different neighbor who yelled across the lawn, "She's not growing! Why isn't she growing?"

This week: Synergist injection, OT, and 2 PT appointments. We are continuing to work mostly on increasing her strength and teaching her brain how to get these muscles to engage!

They assure me that her growth will continue to be positive. By that I mean that they don't expect her to lose skills once she's gained them and they expect her to meet many milestones, though they don't know when. As she grows, her differences will be more and more obvious. At this point, it's clear that she's not ready for solid food (which could lead to a need for a feeding tube down the road), she can't control her head well, roll smoothly, or crawl. Underneath all that is her basic inability to predictably regulate her own arousal level. As I've said before, when she is too overwhelmed, it prevents her from moving forward in all areas. 

She laughs when Ringo licks her, much to Mom's chagrin.