Oh, my sweet Mia. We’ve had lots of appointments in the last few weeks so lots of updates! Mia went to see the eye dr and the results were mixed. Structurally her eyes are fine which is fantastic news, but she is borderline for needing glasses. Since she’s making great eye contact (girl friend will make eye contact for days) her dr wants to hold off on glasses for now. We’ll revisit that next year at her next appointment. I’m already shopping for cute frames. Rest assured, Mia will be absolutely adorable in glasses.
Mia says, “Why did you let them dilate my eyes!” ::shakes tiny fist::
We also had a repeat visit to the cardiologist and everything is looking fantastic. She does sill have a partially fused aortic valve, but it doesn’t seem to be negatively impacting her at this time. Most likely she’ll need a valve replacement, but not until she’s like 40 years old. I’m officially not worrying about things that are 40 years in the future. Y’all, I have bigger fish to fry. 😉 You should have seen us trying to get the heart ultrasound done. Little miss wiggle worm didn’t want to keep still so the ultrasound tech finally suggested that I get up on the table and nurse her during the scan. I had to channel my inner contortionist, but we got it done. lol. Thankfully my dad was there to help wrangle Xander. I don’t know what I would do if we didn’t have family close by! Probably lose my mind.
We let them have some mom-sickles (frozen milk in a mesh feeder). Minds=blown
Then the biggie, Mia had a repeat MRI of her brain last Wednesday. We were supposed to see the neurosurgeon immediately after the MRI, but the had to reschedule because he was stuck in surgery. We went ahead and got the MRI done and scheduled the dr appointment for this Wednesday (tomorrow.) I wasn’t even worried about it. Mistake number 1. Always worry about everything.
Well, my mom and I were waiting at the pediatrician’s office for the babies to get their shots when the neurosurgery office called. Uh oh. Apparently the MRI showed that her ventricles had grown which is not good. They wanted to know if she was showing any symptoms that would indicate that we needed to be seen sooner than out appointment the following week. Cur panicking. Especially when we consider that they symptoms are throwing up (um… she’s not having Xander level exorcism pukes, but she does spit up. And it has gotten worse, but her occupational therapist attributes this to her working her abs more.) and being fussy (first off, she’s the most chill baby ever so I’m not sure that waiting for her to fuss is the answer. Second, she is fussing a wee bit more, but it seems like she fussing because she’s demanding more attention, not because she has a headache. Wanting attention seems like a good thing neurologically.) To recap, she had her first MRI in April and they were on the large side but ok. Then her second MRI in June showed that they were larger, but still ok. It would have been better for there to have been no growth, but this wasn’t alarming. I don’t know what this MRI is showing exactly, but I can’t help but think we might be back in the range of needing a shunt.
Since we were already at the pediatrician’s office, I may have demanded that a dr or nurse practitioner come look at her before she got her shots. The consensus was that her fontanelle (soft spot) was “full but not bulging” so we should be good to wait a week. While I didn’t love hearing that it was full, at least it wasn’t bulging. The nurse practitioner also really pushed the shots so we went ahead and got them. Now I’m kind of wishing we hadn’t only because she was fussier than usual this weekend, but that’s most likely due to the shots. Of course, we’re supposed to be on the lookout for fussiness. ::sigh:: If it’s not one thing it’s another.
She and Xander loved the Thinkery!
In other news, she’s doing great in therapy. We just put some kinesiology tape on her this week to help stimulate her to activate her core. I was resistant to this for a while and couldn’t pin point why. Her occupational therapist helped me to work through it. (Apparently she doubles as a shrink. Which is awesome. 🙂 ) I was having a hard time admitting that she needed the extra help, but I’m over it now and going full steam ahead with anything that will help her.
To long; didn’t read?
No glasses yet, but they will be coming sooner rather than later. Heart is awesome. She might need a brain shunt, but we don’t really know anything just yet. That appointment is tomorrow. Next up, ENT in a few weeks.
And now for the scrappy goodness:
I’m going to pretend like I intended that frame in the top right corner to be crocked. lol. (Side note. Is that how you spell that? It looks weird. Crooked? Crooced? cadiwompus? Tilted. Let’s go with tilted.)