Living with Cerebral Palsy 🍋🍋

Saturday, 1 August 2015

It's my party and I'll cry if I want to...

Sorry for the few days hiatus! Elin's not been having the best time since my post on Wednesday. The tummy upset has continued (though strangely no diarrhoea at all- just the horrendous dry heaving) and she has been unable to tolerate any bolus feeds. Thankfully, in the last 24 hours, the retching has stopped, though we are still currently putting everything through her pump very slowly to ensure she gets all her fluids and nutrients without it causing her stomach to spasm. Unfortunately, as the retching began to subside, the evil dystonia which has been hanging around in the shadows since Tuesday decided it would rear it's ugly head with a ferocity we haven't really seen since last year. Yesterday she needed knocking out with her rescue meds for the first time since...well, neither of us can remember when! Anyway it was pretty upsetting to see her so beset by dystonia that we couldn't placate her without heavy medication. I can never and will never get used to seeing her in that state. It's about the only thing left in everything we go through with Elin that can still reduce me to tears on the spot. We knew it was coming as there was an extremely slow build up of symptoms, she gradually got stiffer and more shaky as the week progressed and I gradually got more teary and anxious :-(
The good news is, she does seem slightly better today. There has been no retching aside from after giving meds (which have to go down as a bolus) and she has coped well with a gradual increase in her feed-which we are diluting with water to make it more tolerable- via the pump. She hasn't needed rescue meds today, although still severely dystonic we have managed between us with changes in her position, or keeping her on our knee. Also, she has managed her first smile since Tuesday. Tuesday!!! Can you imagine not seeing a smile for almost four days? We're beside ourselves. Also probably a little delirious since we have pretty much been consigned to the front room swapping Elin between us  for all this time. But we've had a fantastic run with Elin, she hasn't been poorly for soooo long and knowing what some parents deal with we know only too well that we can't take for granted how well she has been. I guess we were 'due' a bad week. Thank god for the Summer holidays though!
Today was my birthday day out with my pals. Nine of us were going for the day to Chester on the train for cocktails and a meal and then more cocktails. As anyone with a large group of friends will know, it's tricky to get everyone together on one date. Hence my birthday day out was nearly two weeks early :-) I was really looking forward to it but of course, I had to cancel.  I don't think Elin likes my birthday! (Anyone remember my 30th? Anyone? Yeah. It was BAD). Anyway my friends have been amazingly supportive as usual, calling and messaging, travelling home to see me anyway despite cancellation of bash and two of them brought an afternoon tea to me and a poorly Elin with cute little sandwhiches, scones, fizzy stuff and an amazing cake. I am a lucky girl, I love all of my friends so much. They just make everything easier, you know? Let's hope tomorrow brings the same amount of improvement for our girl. Oh if you're wondering how old I am this time- 34. But I feel 64. Probably look it too, especially this week! Can anyone recommend a good face cream???

Oh wouldn't you know the first smile in four days was for her Daddy? 

 Alternative afternoon tea.


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