Living With Cali

Dealing with Scoliosis (And Spinal Surgeons)

If you have the stomach to read all the ways that extra 18th chromosome can affect your child, you will eventually encounter “scoliosis” on the grim list. It’s not a headline condition, like heart defects or central apnoea, but it’s there, part of the small print. Not all ch...

11 of Cali's favourite activities

Big mac switchIn our house this is attached to a lamp with spinny disco lights. Cali hits the button, the lights go on! Aaaahhhhh! Now off! Now on! Now off! The switch is attached to her P-Pod chair. It’s a good cause and effect toy. When it’s hot she turns on and off a fan at h...

The Coronacoaster

“Honestly, I think you’ve got it harder than anyone I know” my friend said sympathetically to me that afternoon, some months ago when I began this blog. Her words gave me permission to wallow in a brief, but extremely gratifying, soup of my own self-pity, it was delicious. Poor me....

Down I fell......

.....The Mental Health Impact of a child with Edward's Syndrome This extract from the Cat in the Hat, a children’s story about a cat bringing mayhem to the house of two children home alone on a rainy day, feels like an apt description of what happened to me last October. One minute I was conf...

How Well Does Your Child Breathe

Obstructive sleep apnoea and Edwards' Syndrome When Cali was discharged from hospital at ten days of age we knew that babies with Edwards Syndrome often had attacks of central apnoea, which is when the brain fails to tell the body to breathe. This is what we watched nervously for, and why for 18 mo...

Trusting Doctors when your child has Edwards Syndrome

Our dog died this week. Sweet smelly old Eva. She came to us when we lived in Spain and we mollycoddled her obsessively in those pre-children times. She quietly observed our lives for eleven years, rarely asking for much and always tolerant when we needed to bury our sad faces in her warm fur or pic...

Enduring Admissions

It’s a sleepy, late afternoon. Cali is upstairs in our bed with C. I can just about hear her coughing followed by a wail of pain, then the noise of the suction machine starting up again. After days of seeming immune to A’s constant drip of toddler snot, Cali has finally caught the cold a...

Going Abroad!

We’ve just got back from a three week holiday in the South of Spain with Cali and A. It’s the third time that Cali’s been. C grew up there and his mum still lives there, so going abroad with Cali was something that we thought about much earlier than I would have otherwise. In the v...

Eating, Walking and Talking

The majority of children with full Edwards syndrome are fed via a nasogastric (nose) or gastrostomy (tummy) tube. For some this is because they have an unsafe swallow. For others their heart conditions have meant that they didn’t have enough energy to self feed. For others there just doesn&rsq...

Beyond Rocker Bottom Feet and Extra Digits

Recently there have been a lot of new people joining the Trisomy 13/18 Facebook group that I am a member of (Trisomy 18&13 Families UK). Many of them have just learnt that they are carrying a child with Edwards or Patau syndrome and are in an anguished and shocked state about what to do. They ha...

Part 3 - The second year and beyond

During Cali's second year I stopped thinking about her death all the time and started to try and come to terms with her life. Silly as it sounds I only now started really understanding that I had a daughter with profound disabilities and that they would affect her and us in all kinds of ways. All Ca...

Part 2 - The first year

When I look back on the early days with Cali, I think how brave, bemused and innocent we both were; brand new parents with a baby who had a variety of complex medical conditions we knew nothing about, sent home from hospital for “family time” by a consultant that thought resuscitation wa...

Part 1 - Pregnancy, birth and diagnosis

We are incredibly excited to announce the first part of our new monthly blog by trisomy mom 'Jay'. Jay has captured in words what it has been like for her and her family living through a diagnsis of Trisomy 18 and beyond. Pregnancy, Birth and diagnosis With hindsight it's easy to say I always knew...

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