BIRTH STORY | My son’s Rare Diagnosis : Agenesis of the Corpus Callosum & Epilepsy + Bradycardia

I’m back with a chat talking about my son Noah & his journey from birth. I filmed this at 4 in the morning so bare with me but I’ve been wanting to share his story for a while. For my special needs parents out there I just want to give you all hope & motivation. Noah was diagnosed with a rare congenital disorder called Agenesis of the corpus callosum. I talk about his fight with epilepsy and his struggles with Bradycardia & hypotonia. He is currently 5 y/o & will be 6 this year. If you’d like for me to break down anything further like his early intervention, IEP, day to day ( his therapies, what he is learning, how & what he eats 👇🏼 please be sure to comment below). I plan on doing a NICU experience video as well. ❤️❤️❤️
I’ll be adding details / links to resources I shared as I upload so be sure to come back to this description box.
MEDICAL HX & RESOURCES :
Noah's Diagnosis : Agenesis of the Corpus Callosum, Epilepsy, Hypotonia, Translocation w/ Chromosomes 1 & 13 ( rare; unnamed), Bradycardia is what kept Noah in the NICU but he's been off steroids & his heart monitor since he turned 2.
Noah's Age as of today : 5
My NYU Specialist: nyulangone.org...
Monitor I used for Noah's vitals ( this was a LIFESAVER!!!!!) : amzn.to/3ymmxMs
Early intervention ( New York ) : www1.nyc.gov/s...
♡ EMAIL ME: [e-mail]
#storytime #specialneedsmom #specialneedsmother #specialneeds #dailyvlog #newyork #autismawareness #autism #epilepsy #agenesisofthecorpuscallosum #singlemom #singleparent #specialneedsnurse #nurselife #momlife #earlyintervention #singlemomroutine
I appreciate the love you all have shared for Noah I can’ t begin to tell you how much It has given me hope to keep pushing forward and praying We’ve recently been hospitalized again which i will share in the next vlog . & I will be getting back to my community comments today. ❤️❤️❤️