I was a guest lecturer in a nursing class

Freya got an AAC device!

Physical therapy and a quick Freya update

Nicu reunion

Trying to figure out why my non speaking child is in pain

Feeding therapy is working! A game of Eat or Throw

My feelings on our NICU journey

Costco haul with gluten free options

Birthday treats and medication organization

The Marathon of parenting a disabled child

Weight gain with a rare syndrome and apple picking

I can’t believe she is 5! Growing up with a rare disease

Birthday prep 🎉🥳

Physical therapy, pizza sauce, and wheelchair update

Long drive Fun weekend getaway

Freya’s last first day of preschool | Special Education

Bubble and gait trainer Pt 2

Explaining the NIPBL gene change CdLS | Grief that comes with a diagnosis

This made her day | visiting the aquatic center

What are the new goals? Freya’s IEP

What Freya eats in a day

Did we find the cause of her cough? | Jesse’s upper GI scope

Nighttime routine

How I made an All about me page for special education IEP

Monday vlog | Swim lessons and basagna

Dad’s first time at physical and occupational therapy

Quick catch up

Unexplained illness | The hardest part of disability parenting

Lake day and a new surgery planned

All your questions about CdLS answered