This is my #averygirl
She is our 5th of 8 munchkins. We were told by leading specialists all over the country she'd never see her first Birthday. We were air ambulanced all over ... FIGHTING for our Amazing Avery!
She was diagnosed with the most complex rare disease at 8 days old. #praderwillisyndrome There are SO MANY things about PWS but I'm going to focus on one right now. PWS makes individuals feel as though they are starving, ALL.THE.TIME. No matter how much food they consume, their brain NEVER gets the message it's eaten. Add to it their insanely slow ability to metabolize and break food down and their extremely low muscle tone and Avery is allowed about HALF the food another child her age gets. But it's not that simple. Avery has needed a STRICT keto diet and has only had organic, no nitrites/nitrates, preservatives, etc. Food has always given her a huge source of anxiety so food is only mentioned when it's time to eat. No exceptions. Pantry, fridges and freezers are always locked. No exceptions. EVERYTHING that went in her precious body was WEIGHED AND JOURNALED ... NO EXCEPTIONS.
Well ... that girl above? She's different, y'all. We haven't weighed, journaled or counted macros in nearly three months!!!!!!!!!!!! She has gotten more whole carbs in the past couple of months than she's had her entire (almost 6 years) combined. Her blood sugars are no longer crashing. Her lungs have strengthened so much that she goes HOURS without her 24/7 USED TO BE necessary O2. She runs, climbs, army crawls, transitions different surfaces AND SO MUCH MORE with ease. Her language has EXPLODED. She's lost 7lbs. Oh, and she now patiently cooks and bakes with her momma ... and decorates keto cheesecakes with strawberries all by herself.
Take that #PWS!!!!!!!! #raredisease#mygirl#amazingavery#chroniclungdisease#hypoglycemia#hypotonia#adrenalinsufficiency#immunology#immunology#mountainmover#jesus#testimony#miracle#believe#joy#story#hyperphagia#cooking#baking#mommyandme#momlife#momboss#ketogenic#ketolife#macros#ketomedicaldiet#ketosis#keto
Undoubtedly the best photo from this 🌈 pregnancy so far - Jojo and me showing off our food/human babies 😂 (and my rather attractive maternity jeans 💁🏻♀️)
Such a lovely (but stupidly short) visit to see @emilyhamiltonillustration@joshshapland, Sunny & Jojo - some of my favourite people in the whole universe, I love them all so much 💕
Ems got to feel the little man kick (just like she did with Skye) and Jojo seemed pretty excited by the fact that there was a baby in there. Although 👉🏼 she did also seem to think he was in my boob as well 😂
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Shipping from Bintaro Tangsel
Why do I choose to get up every morning and get in my workout?
Because I have #goals. They used to be small. They used to be generic. They used to be what I thought they should be.
Now they are bigger than giants. They are specific. They are MINE.
Set your goals high and make them specific. Then, work every second of every day to make them happen. Because here’s the truth of it all: your goals have absolute potential to manifest, but they won’t work unless you do.
So...let’s get to work! 💪😎
Little pickle is a bit under the weather today. Think all the fun of her birthday week has caught up with her so only Daddy cuddles and snuggles will do 🤒
We always worry when she is ill. With PWS things can sometimes get quite bad quite quickly.
Sunshine + spring = Rose
This weekend we are cracking open magnums of 2017 Chateau du Rouet, a delicious rose from Cotes de Provence, in the south of France.
A blend of grenache, cinsault and tibourec creates a lovely dry finish. It’s a classic Provencal Rose with some strawberry and floral notes on the palate ... and our new dish of Port Lincoln sardines, pickled beetroot, feta, currants, chilli and pangrattato is its perfect match on a Spring evening...