It's been a while since I last posted a tweet. Hope everyone has been well. Please give us a follow on our new #instagram page much ❤️
https://t.co/bYSQBZwygs
We didn't receive the best news at B's hospital appointment yesterday, what we all thought was her hips is in fact her spine! Uncertain of the forthcoming plan as surgery is out the question.
Disability parenting is parenting magnified. I feel crushing guilt when I’ve forgotten to do physio, forgotten to pump up wheels, forgotten another appointment, forgotten to pay a bill. Carers NEED extra support. Stop reducing our services, stop dismantling our networks, STOP.
@Danwhite1972 Well said Dan, yet again this week I have had to justify why I need extra help and support to care for two people who are wheelchair users and Briany who as you know is complex health. Let's fight the fight people, they can't bully us no more.
Some good news at last, I have an orthopedic appointment next week and finally have a new Gastro tube. Feeling smiley today 🦋❤️ #cerebralpalsy#livinglife
Pick up a copy of the Sunday express this morning and inside you’ll find my story in the magazine of how my family are trying to raise awareness for my rare condition,Trichothiodystrophy. 💙💙💙 #FearlessFreddie
3rd week in hospital and still no clear plan of what is going on, and to top it off her temp gastro split yesterday leaking stomach content everywhere so now waiting to be transferred for a new one. #disabilities#CerebralPalsy
@supportalife This is exactly the same as princess B, 3 months of tests which was diagnosis by elimination and ended up being bowel dismotility. She needed nissan (fondoplication) procedure which stopped the vomiting but she still gags and wretches 🦋❤️
Had a much needed visit from @Natalie73031148 mummy bear today, she got a few people told and so tomorrow the fight continues. #cerebralpalsy I will get the better of you 🦋🦋🦋