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A Mighty Fine Day

Today didn’t start out so mighty fine.  By lunchtime, Daisy had projectile vomited twice.  I wish I could capture it on video for you because it is a sight to behold.  If it was an Olympic Sport, she would certainly be in contention for a gold medal.  It reaches a good metre and a half.  This is the main reason The Tidy Tyrant has laminated the whole ground floor in our house, and Daisy isn’t allowed upstairs, near my beautiful new carpet, within an hour or so of being fed.  In hindsight, it was perhaps an error to choose such lovely carpets.

It is the one thing that gets me down about my little Daisy Doodles.  I wish I could stop the projectile vomiting.  The distress it causes her, the endless mopping of the floor, the enormous piles of washing it creates and the fear of it happening when we are out.  People generally don’t believe that a projectile vomiting child is not actually ill.  It’s just a Daisyism.  Tomorrow we try reflux medicine again.  I say again because its been tried before and actually made her more sick.  Fingers crossed it improves things this time.

Anyway, onto the mighty fine part of the day.  Daisy is fed exclusively through a gastrostomy tube into her tummy.  It stems back from when she was a baby and had difficulty swallowing and they put an nasogastric tube down to feed her.  She did manage to suck a small amount of her bottle initially but then the chemo put her off and she has been pretty much nil by mouth since.  There is no reason for her not to eat, other than she has never had to and has a weak swallow.

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Currently, with guidance from our ace speech and language therapist (yes they help with feeding, who knew?!), we are trying Daisy with solid food.  It is something that I admit I had given up on as it was so demoralising having her reject it all the time.  It was great to have someone come in and give me some strategies for helping her to eat.  Daisy has been averse to anything in her mouth.  In fact she has only recently started putting toys in her mouth;  something that most babies do very early on.  We have been told to hold the spoon at the edge of her lips and let her use her top lip to take some if she wants.  To give her the choice about it and some independence.

Tonight I tried her with custard.  She did take some last Thursday from The Tidy Tyrant (she is a Daddy’s girl), but I hadn’t had any success before.  Tonight she actually managed to empty the little pot that I had!!!  Granted most of it dribbled back out of her mouth so I’m not sure how much she actually swallowed.  Tonight she actually opened her mouth and let me put the spoon in.  Then, when I was sitting with the spoon loaded, she actually lent forward and took the custard.  I had a tear in my eye.

When you have a child with special needs, the very, very, small things become the very, very, big things.  Well done Daisy Doodles.  Tonight you made my night.

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15 thoughts on “A Mighty Fine Day

  1. Love this Sal, and I had a little tear reading. No stopping her with the custard now..! Good one Daisy. Looking forward to reading the next one. Xx

    Liked by 1 person

  2. Nice blog sally. Hope the new reflux meds help & daisy starts enjoying more food. Didn’t realise huxley had decided to balance out the chromosomes in your family! He’s a very cute wee button.

    Liked by 1 person

  3. Very impressed by your (and Daisy’s) fortitude in the face of projectile vomiting! Great that you have decided to blog. You are a terrific writer!

    Like

  4. Brilliant blog. Amazing family and well done Daisy with the custard, heart melting moment. Loved reading all about it and Tilda loved seeing her nursery buddy in the pictures. Look forward to reading more about your inspirational journey xx

    Liked by 1 person

  5. Sally I haven’t seen you for several years since our days at FD but I just wanted to say I love your blog and that you are such an inspirational and amazing parent. Thank you for writing it and sending love to you and your family. Claudia x

    Liked by 1 person

  6. So pleased that you have decided to write this my awesome daughter. Love reading it and being part of your journey. I learn every day from your positivity. You always were a wee ray of ☀️

    Liked by 1 person

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