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Manicure Monday

Manicure Monday

Just Another Manicure Monday (oooh, a oooh)

Just Another Manicure Monday!

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Had some fun @thehunterfarm today! We took a tract

Had some fun @thehunterfarm today! We took a tractor ride to their barn and got to see so many cute animals…Charlotte was in heaven! At the end of the visit, everyone got some flowers to take home! It’s a really nice family activity if you’re in the Charlotte, NC area.

As a side note, I messaged them ahead of time to ask if we could bring C’s walker onto the tractor ride to the barn yard and they were super accommodating, which made this mama’s heart very happy!

It’s not easy to get a three-year-old to do anyt

It’s not easy to get a three-year-old to do anything that they don’t want to do (particularly if they know it’s something you really want them to do 🤪) so what you see in this video is nothing short of miraculous! I had C help me do the laundry (toddlers do love to be helpers) and thought this would be the perfect opportunity to get her to practice some of her PT home exercises, including standing with as little assistance as possible!

She’s wearing her ankle braces as well as her new SPIO suit, which is a spandex compression suit designed to give her core strength/support and also gives her more body awareness. The suit, the ankle braces, incredible physical therapists, and trying my best with PT at home have lead to this progress- I’ve never seen her stand this long at home, and it’s getting more consistent! It’s SO EXCITING to see and gives us so much hope!!

Here are some highlights from our latest three-wee

Here are some highlights from our latest three-week physical therapy intensive! We spent three hours in the car each day, five days a week, to get to Richmond Hope Therapy Center (the only place in Virginia that currently offers therapy intensives and therefore the only place offering intensives that our insurance covers) but all that travel time is SO worth it to see our girl make so many gains toward the goal of independent walking!

Sometimes it’s difficult to see the progress in the day to day, but it was just about a year ago that she finished up her very first intensive, and when I look back at videos from that time, I’m amazed at her progress! She’s much more stable and strong, needs much less support while standing/walking, and is giving us longer and more consistent stretches of standing independently (which is also tough to capture in video 🤪)! And check out the two independent steps she initiated toward the end of the video! 🎉

To say I’m proud of this girl would be a complete understatement- she works hard and does what’s asked of her by her therapists every single session, she goes on long car rides and takes it like a champ most days, and she has fun and brings her fun personality every where she goes!

We couldn’t do any of this without her amazing team of therapists near and far who have her best interest at heart and have each been such an important part of her journey so far! THANK YOU!!

Today is February 29th, a very rare calendar day,

Today is February 29th, a very rare calendar day, but more importantly it is also Rare Disease Day, a day to shine a light on rare diseases as a public health concern. Scroll through to learn more about our family’s journey with an ultra rare disease. This first photo was taken just a few weeks before we would get the news that would change our lives forever (C was just about 18 months old, cute as a button)!

#rarediseaseday
#rarediseaseawareness
#nubpl
@nubplfoundation
#mitochondrialdisease

Looking for ideas to fill your little one’s East

Looking for ideas to fill your little one’s Easter basket without creating more “junk” and clutter around the house? Here’s a list of 35+ “junkless” Easter basket fillers for kids!

*Comment EASTER and I’ll DM you my blog post with the full list of ideas and links!*

Although I will be adding a few of C’s favorite treats to her basket (she LOVES chocolate), I like to gift her items that are useful, that will spark creativity, or that allow us to have a fun experience together! It’s so much fun celebrating holidays with our little sweetheart!

*Update: A “higher up” at PPL finally spoke wi

*Update: A “higher up” at PPL finally spoke with me on the phone this evening and we were emailed the final form I need to remain C’s attendant…for now. The silver lining I guess is that because I spent all the time I did trying to get answers, a team from Anthem had a meeting with PPL this morning to discuss my case and they discovered several other families in our position…supposedly they also spent the day contacting all of those other families!

So, at least I was able to take a little bit of the headache away from those other families.

Ultimately, what we need is for Virginia lawmakers to vote to remove the DMAS “guardrails” that make it so very difficult for parents to remain as caregivers for their own children!

We have to do better for families, for people with disabilities, and certainly for anyone needing access to medical and community services of any kind. It is EXHAUSTING!!!

@publicpartnershipsppl
@emily4va
@momsinmotionva
@senatorwarner
@sentimkaine
@repjenkiggans

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