Don’t get too excited everyone. I’m not talking about me! I’m talking about L…
At her school meeting yesterday which included her teacher, social worker, psychologist, nurse and curriculum coordinator, we discussed all things Lily. It was a 2 hour long meeting. And we spent much time talking about her medical history and their concerns about her seizures (which have started to get a bit more frequent), her eating (see previous post) and her fatigue (there is no naptime at school and there are a LOT of stairs she needs to climb throughout the day).
After we got through the heavy and scary stuff, I asked about how she was doing in the classroom. Was she interacting with the other children? Was she having a good time? Participating in group activities? Her teacher, Miss Susan, told me that Lily is getting comfortable with all the adults (and I saw this when I brought her in to school as she walked up to her para Ursula and gave her a big kiss) and, depending on her level of fatigue, is participating in classroom activities. Susan mentioned that when the kids go and have free play outside, there’s one particular boy who has taken quite a liking to L and she has noticed that L likes this boy too. A bit of a love story is unfolding at the playground she says….
I mean, how could you NOT fall in love with this kid?
There are SO MANY THINGS that each of us take for granted in a given moment. Swallowing is one of the more recent ones I’ve come to realize. Imagine it. Not being able to swallow.
Now imagine watching your child losing her ability to swallow. In front of your eyes.
I don’t even want to be writing these words. I don’t want to be thinking these thoughts. But this is a very big concern. And what L and I need right now is a lot of positive vibes, prayers, and thoughts.
I scheduled a swallow study for next month and I’m really hopeful (almost to the point of being confident) that this is just a phase that Lily will bounce back from.
Who knew that a swallow study was a thing? That doctors specialize in this kind of stuff?
There is so much that I am learning about that I’d prefer never to know.
Regardless, I am going to focus on the positive. L is running. L is happy. L can sometimes swallow. Sometimes not. Her weight is good. Her coloring is good. Her hand function hasn’t gotten better but it’s not gotten worse. She’s been (almost) sleeping through the night. She loves music and giggles and being tickled. She loves her mommy. And her mommy loves her.
Oh teeth grinding, how I love thee
All morning, all afternoon, and all evening long
You are the noise that comes out the most from my child’s mouth
And I love her so much, so I must love you too
I must love you too
For if I do not, I surely will crumble
And that will do neither of us good
So love you I’ll do
It’s been a while, I know. But we’ve been busy ladies. Vacationing, moving, starting school, getting internet finally installed in the new place… the past few weeks have been a whirlwind of activities.
As usual, Lily is taking it all in stride. And I’ve had my fair share of help getting things done. My cousin Maria and friend Jill helped me pack up the old place. My friend Michael completely renovated my kitchen and designed the new place (from living room to patio) to make it feel cozy and welcoming for me and my sweet girl. Miriam and Don (and Maya and Evan) were kind enough to host us on a vacation in the ‘burbs, Angela and Bruce and Peter helped me unpack and set up (and I have to mention that Michael unpacked more than half of my boxes before I even officially moved in). I guess you can say I’m taking it all in stride too, with a little help from my friends!
Lily loves her new home. We were both nervous walking in the door as Michael wouldn’t let me take a peek at the progress. But when we arrived, we were both blown away. I think L was especially excited because he greeted us at the door with her two favorite things: blueberries and Billy Joel’s ‘just the way you are’ playing on the stereo.
Blueberries and giggles and Michael Conti!
L’s first day of preschool went off without a hitch (though the days leading up were fraught with calls to the DOE and the school ensuring all of her paperwork was in place). She was/is such a brave little munchie!
Waiting for the bus! Day ONE of preschool.
And today is another first! She’s home sick with a bit of a cold. Those preschool germs have infiltrated our home.
Still pretty when she’s sick