Honesty
We promise to always be honest when telling both Summer's story and our story as her parents. We tell our story through our own experiences and challenges.
Only 50 babies a year are born with PRS in the UK. Which makes them extra special in our eyes.
Feel free to leave a message by clicking the CONNECT button below, we'd love to hear from you.
LOVE
There are so many
beautiful reasons to be happy.
It doesn't matter what language you speak, a warm smile to a stranger speaks a thousands unsaid words.
FAMILY
Tough times reveal true people.
We are so lucky to have special people surround us.
Blogger's
Choice
2023
BEAUTY
AWARDS
2023
After three miserable visits to recuss in Barnet Hospital, Paul & I were convinced this was now our life. Something together we would potentially have to make normal. Our baby was safe and well did it matter we were always in hospital?...
Our journey ♡
Welcome to our page, an ongoing story of a Pierre Robin Sequence journey - through intensive care, the high dependency unit and more.
We promise to always be honest throughout telling our story even through the tough times.
HOPE
For every dark day that you face, there is a brighter day awaiting you.
Don't worry just be happy.
A positive mind can
conquer the world.
Follow our story through: Summer's birth, feeding challenges and equipment, airway & breathing support and degrees in feeding and tube changing.. well not quite but it sure feels like it!
A Dangerous Weaning Journey
The most frustrating thing is all the emails I get from "Tesco baby club", "boots mini club" & "bounty baby".. If I receive and read one more generic email in regards to weaning your baby I am going to scream!!! ...
And though she be little,
She be fierce
Daughter
Water Baby
Summer's first bath was made from sterilised bottled water!...
Kindness Always
Be kind always, everyone is fighting a battle you know nothing about.
STRENGTH
You are my Sunshine.
Summer And Winter
'Summer was conceived in Australia, she's a hot baby and hates the cold'...
We are so proud of our daughters strength through every hurdle she has faced.
Tiny Teeth
My smiley, happy baby turned into the most miserable, uncomfortable and fed up bundle, it wasn't until she let me look in her mouth I saw she has three teeth breaking through the gum at once.
Tube Making
''The nurse turned to us and told us it was down to us to make the tube that holds Summer's airway open....''
8 Months Nil By Mouth
Well it's been around a month or so since I last logged in and wrote a piece on here. We've been so busy. We had a wonderful, busy Christmas period and we hope you did too. We are so excited to welcome 2018 as its a huge year for our family.
Its not fair to strong enough to care
"I remember constantly thinking life's not fair..."
Speech and Language
"The title Speech & language therapy isn't quite what I thought it meant..."
Sounds pretty obvious right? Yes thats what I thought..
A degree in feeding
"My baby was crying because she was hungry and I couldn't even do the one thing a mother should be able to do, feed her baby.."
Trust Your Instincts...
I didn't think much of it, until it happened again the next feed.
One tube down...
'I am thrilled to share with you that the sleep study went very well' he paused 'I am happy to confirm Summer no longer needs upper airway support'.
Cleft Palate Repair
We were woken up early by the sound of our alarm clock pouring into our room, it was time to wake up, get ready and set off in our car. Our bags sat at the front door, they had been packed for a week already. We set off in our car at 6am sharp.
Referred to Gastro..
In mid August 2018, we noticed Summer having difficulty swallowing her juice.
We were due into GOSH for a paediatric appointment weeks after noticing this unusual sound she has started to make while drinking liquids.
