31/08/2026
The start of our very cranky crying aggravated@bostonchildrens trip.
We have THREE visits scheduled for the month of September… this visit , a visit for Botox in her lower limbs and then a 48 hour inpatient eeg at the end of September.
But for Today : Annual endocrinology follow up - to discuss puberty and bone density . We are due for a DXA scan so when we come back in October for a different follow up we’ll add that to the list of appts…
Tomorrow: annual follow up with Dr Heidary for neuro-ophthalmology ( she has the most amazing bedside manners besides being super smart and awesome at her job 🥰) Rian has cortical visual impairment ( CVI) so she sees differently than you and I do.) we are making sure she’s still seeing ok , doesn’t need glasses ( because we all know those won’t stay on 😵💫)
And Lastly a quick follow up with the movement disorders clinic in neurology.
A lady waiting in the elevator asked if there was a cat in the elevator due to Rian’s crying ( because she didn’t see Rian in the corner …. Kinda wanted to 👊🏻her 😤. Just. RUDE. We immediately hit the button to shut the elevator doors .
I do have to say though while we ( momma and gramps were quickly inhaling dinner ) a very nice family with a younger daughter who I was told had a tumor on her brain and seizures from Atlanta , came over to us to say hello and introduce themselves because they saw Rian’s gtube bag ( and the fact she was crying and I had to speed walk her while waiting for food ) and wanted to see if saying hi would help her. It did ! Rian reached her hand out to touch the mother’s arm and just left it there . It’s like she knew this family had a special kiddo too 🥹❤️
Thanks everyone for following Rian’s journey . I’m trying to keep up with social media. I can’t keep up with the continuous change of how to post and all of the fancy crap people are doing . I gotta medically complex kid to care for , and business to run. I’m not a film producer , content creator , and whatever the hell else is going on with Instagram. I’m just a mom over here trying to advocate and educate .
Danielle McCann the little norwegian candle co