Meet beautiful Scarlett ..
Scarlett has been sponsored by ‘AT HOME CARE’ through the rehabME Program made possible through the Saba Rose Button Foundation.
All our dreams came true, when Scarlett Rachel Elaine was born on 23rd September 2015. Although we weren’t expecting the c-section or cleft palate, we were expecting the club foot and an otherwise healthy and beautiful baby girl. After a short stay in PMH’s neonatal unit, learning how to feed Scarlett with a special cleft palate bottle, we were off home and life seemed complete. It wasn’t until we were at a pediatrician appointment for Scarlett’s reflux, that we heard a word that would soon turn out to completely change our lives forever.
Scarlett was a “HYPOTONIC” baby… What did that mean? What is Hypotonic? Does Scarlett have Hypotonia?
Hypotonia seemed terrifying to us! Not only did it refer to a floppy and low muscle tone baby, but quite often indicated a serious underlying medical condition, be it viral, metabolic or genetic. We pushed to go back to the pediatrician at the start of this year, when we realised Scarlett couldn’t hold up her head, maintain eye contact, fix and follow, grab or even seem interested in toys, and wasn’t meeting the usual milestones. It was very hard to admit that, although 100% perfect to us in every single way, Scarlett was different and we had to help her. 6 months on and unfortunately Scarlett still can’t do most of those things, but she has definitely shown a lot of progress and promise towards them.
This year has been a constant flow of medical appointments, tests and therapies. Scarlett has been diagnosed with Hypotonia, cortical vision impairment, global development delays, bilateral severe sensorineural hearing loss, and generalised epileptiform disorder; which just means she is at high risk of seizures. Developmentally, our angel is less than 1 month old in nearly all developmental domains, except for social/hearing & language where she is closer to 2 months old.
Scarlett is a charismatic 10 month old, with a heart of gold, strength of a warrior and tolerance of a buddha. She is beyond happy, and has a smile that lights up a room and our lives everyday. We are very blessed to have her! Not only does she bring us unimaginable joy, but she has made us better people and a stronger couple.
I must admit it’s been hard not having a centralised diagnosis (as to what is causing all of Scarlett’s challenges). And even though we are currently undergoing genetic testing, we have accepted the fact that we might never know. Scarlett may never be able hold up her head, sit, roll, crawl, walk or any of those simple things we all take for granted. And our only hope is that we can give Scarlett every therapy and assistance so that she can blow us all away with her progress.
In terms of therapies, Scarlett currently does physio, hydrotherapy, music therapy and gets MLD massage to help with oedema. We have also just received a placement at Ability Centre and hope to start OT, speech therapy and more physio there soon. Although our real dream is to get Scarlett to a NAPA (Neurological And Physical Abilitation) Intensive Therapy, over east next year.
As I finish writing this, Scarlett has just woken up from her nap and I am overwhelmed with no other feelings but love and pride. She is seriously RIDICULOUSLY amazing 🙂 I feel like pressing ‘select all’ and ‘delete’, because saying anything negative about the greatest gift just seems wrong.