Lots and lots of lovely appointments

There may be a bit of sarcasm in that title…

The news:
Nothing sinister was found in my scope, but no real explanation for my symptoms either, so I’m stuck with a very restrictive diet for the moment.

My disabled daughter B finally got her neurology appointment, it means she has a lead hospital consultant now, who is really interested in her, which is good. Not so good is the news that she is having small brief seizures – she actually had one during the consultation. So she’s now on a low dose of medication that will hopefully ensure they don’t develop further.

On Wednesday B got her therapeutic Botox injections that help reduce the stiffness in her legs, which could get progressive without her comprehensive medical and exercise management programme. It was less than a week after an Irish celebrity received cosmetic Botox live on Ireland’s premier TV chat show, and I felt the feature was such a missed opportunity to cover its other uses – and my daughter would probably have loved the attention of live TV, if she could’ve had her treatment at the same time!

Today is the wheelchair assessment and another protest in support of disability rights outside Irish Government Buildings.

And in really good news, I have the following reasons to be cheerful:

A new goal, doing a parkrun with B, inspired by BuggyWalks Ireland.

Possibly joining the no beer for a year campaign, inspired by my blogging friend Kate Gunn in the Irish Independent.

Eldest bought B an unbirthday present of a mermaid blanket for floor time especially when it’s cold. Pink of course, and she looks soooo cute in it…

B has started wanting to share my dinner even when it’s not red (ketchup) or brown (chocolate) culminating in her eating purple coleslaw on Monday!

A hospital visit and finding a free and available parking space easily in the adjacent cul de sac. I think hospital car parking charges are an insult to sick people and I hate paying them so that was a win.

 

And finally, look who was thrilled to be back at the Rainbow Junior Arch Club this week.

b-disability-smiley-rainbow-junior-arch-club
Have a great week, and why not check out more cheerful posts over at Mummy from the Heart.

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10 thoughts on “Lots and lots of lovely appointments

    1. So glad that B makes you smile too 🙂 Luckily her seizures are barely noticeable and don’t seem to bother her at all, just need to make sure they don’t get worse xx

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  1. sorry you have to have so many appointments for both you and your daughter, life is hard enough with a disabled child without the added hassles of parking for necessary hospital appointments, i often thing they should offer valet parking when you need to take a disabled child or adult into the hospital (pre booked would probably work) I’m mum to a disabled adult and will be spending Aril in the UK sorting out Social Service appointments etc, it is never ending, isn’t it?

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  2. Hi Candi,
    Firstly sorry this has taken me this long to reply to. Great to hear nothing found but hope you’re feeling better. Also great about B’s consultant & her return to the club. Her smile is just so infectious and always captured so well on camera. Finally delighted to hear you’re thinking of a ParkRun & thank you so so much for the mention. I had hoped to do Donabate last week with a view to reporting back to you but my little lady was sick so that was that. Only a wee virus but as you know yourself the best laid plans … not sure when I’ll get out for a Parkrun again but will definitely keep you posted & maybe someday it would be lovely to do one together? Take care and a big hearty hi to Smiley 😊

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    1. I contacted a local Park Run and they said they catered for people pushing buggies — though I didn’t tell them how big my daughter’s buggy is! I’m hoping to give it a try on Saturday week and I will report back too 🙂

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