Making memories in the mundane.
North Carolina, USA
Joined January 2009
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As we're staring down placing deposits for Mia's 2026 therapy intensives, and because a leak in our basement has expedited our plans to make that space accessible and safe for her wheelchair use, I'm leaving this here for anyone who may feel led to donate. We're so grateful for the people who've come beside us thus far and helped ensure that Mia has access to every resource possible. Our girl is doing amazing 💜
gofundme.com/f/donate-to-mia…
In Oct, after a slew of ear infections, Mia finally got tubes and had an adenoidectomy. She recovered well from that, just in time for a three-week outpatient intensive where she had 3 hours of therapy a day. That intensive ended just in time for our family to contract the flu, recover for Christmas, and catch a cold for New Years.
For those interested in a bigger update about Mia: After a pretty harrowing winter where we battled a string of infections (ear infections and then c diff), Mia has recovered and is now in a really strong place. She's showing interest in independent sitting, and her awareness to what's going on around her has really grown. She'll laugh when I eat or when we crumple a piece of paper. She's hitting that giggles phase, and I am DELIGHTED.
We're still primarily bottle fed, but we're working weekly with a feeding therapist (along with OT and PT twice weekly) to try to increase her intake. It's a long road, but she's tolerating it well. Mia still loves Ms. Rachel and disco lights, and she has a new appreciation for the Little Tykes Dream Machine stories, which we project on the ceiling before bed. Her seizures remain well managed, thankfully, but her GI issues continue to present new challenges. We're meeting a new specialist in GI motility in November. Overall, steady onward and upward. So grateful.
It's time to start a small grassroots group who want to fight for our kids, for their future and for their life-extending services. I'm imagining hashtags, regional gatherings, online petition. Educating and inspiring and showing why kids like Mia are worth fighting for.
Mia's Medicaid services are on the chopping block after NC was unable to come up with the $300Million shortfall from the budget. Care for Mia is considered "optional" in NC.
#SaveNCsKids from budget cuts that will shorten their lives.
Mia's Medicaid services are on the chopping block after NC was unable to come up with the $300Million shortfall from the budget. Care for Mia is considered "optional" in NC.
#SaveNCsKids from budget cuts that will shorten their lives.
Mia has had over 140 therapy/medical appts this yr through her CAPC Medicaid waiver. She is thriving because of this coverage. Now NC's $319M Medicaid shortfall threatens to cut these "optional" services. @NC_Governor, are NC's disabled children so easily on the chopping block?
So for today I'm arguing that every single person should want to save NC's kids.
#SaveNCsKids from medical bankruptcy.
#SaveNCsKids from policies that hurt children.
#SaveNCsKids from rationed healthcare
