After less than a week and significantly less red eyes, Parker G had her follow up appointment, and she is doing great!

Only if you look closely can you see the red in her eyes, it’s now faded into a yellow that the doctor says is like a fading bruise. Zombie eyes aside, I can’t believe how different she looks now. The picture below is from a few days prior to the surgery:

A few days after (she’s not great at following directions, so I couldn’t get a really good shot of her eyes, but you can see the red. Just imagine it the same on the other eye):

And this is today:

The very first picture was also from today, but she’s really cute in her yams overalls and I’m not sorry for posting two and if we’re being perfectly honest you know you’re here for it.

Anyway, she’s less “Precious Moments” and more “normal human baby who might also be a little bit velociraptor if the shards of glass teeth and screeching are any indication.”

We asked the doctor about the necessity of the next procedure since she took a look at Parker’s retinas while she was “in there” during the strabismus surgery. Turns out the next procedure includes a dye they use to really see the blood flow, so yes, it’s still needed.

In the time since the surgery, we also received the EEG and MRI results. EEG was normal, so yay for that! MRI was not so much.

Parker is missing fat on portions of her brain. If you don’t know, and why would you unless you’re a doctor or scientist or paid better attention in school than I did, your brain is at least 60% fat, and that fat is an essential part of your brains ability to function and communicate with the rest of your body. According to her neurologist, the missing fat in Parker’s brain are on the parts responsible for vision and movement.

What does that mean for Parker? Well, we don’t know exactly. We do know that it seems to align with her CTNNB1 diagnosis, and is likely to blame for the delays we are seeing in her milestones. But it’s not like she can’t see at all, right? And she can obviously move her legs and arms. So it’s just data that we have now, and can use as a comparison for later scans and developments. Not having fat on those parts of her brain doesn’t mean she won’t get fat there eventually, and it’s likely she will. So she likely will meet milestones, just not in the time frame expected. Or maybe she’ll need adaptive equipment. Mostly this information is, “oh, that’s why this is happening” and not “this is a crystal ball that makes us all-knowing now.” Parker is going to progress in her own time, in her own way, with her own style. Perfectly.

In the meantime, we’ve sent her results off to the researchers, and maybe they’ll provide some feedback (although I doubt it). Next big thing on the horizon is her retinal procedure at Children’s Mercy on the 1st.

That’s it for now, as always, thanks for the support and kindness!