Bittersweet Blog

It’s been busy, busy, busy here at Stov HQ.  I’ve been meaning to sit down and write a blog for about a week now but just haven’t found the time.  I am back at work a day and a half a week and The Tidy Tyrant has started work again for the summer (?) season so he isn’t around.  Back to the life of a single mum for me.  Thank goodness for Glamorous Grammy and Patient Pops or I wouldn’t have a minute.  It feels like a constant merry-go-round of feeding, preparing food and washing.

That’s one con of the blended diet.  It takes one hell of a lot more effort to plan and prepare three meals a day that are balanced and have enough calories than it does to pour some prescription formula down her.  It is worth every single second of extra work.  Daisy is definitely healthier, has more colour about her and is way more engaged with us than she ever used to be.  She has been a bit more pukey of late but I think it is because I am a bit paranoid about weight gain and have been trying to see if I can get any more food down her.  I can’t.  She pukes it up.  Lesson learned.  Annoyingly she hasn’t put on any weight this month.  I’ve decided I am not going to stress about it.  Having spoken to other parents whose children have a similar chromosome deletion, it seems to be a common theme. Regardless of how many more calories you add to their food, they just don’t seem to put on weight.  Sigh!

Huxley on the other hand is going great guns with his food and has managed to climb from the 9th centile towards the 50th centile on the weight chart.  Last night he devoured a roast beef dinner and a little rhubarb crumble.  The Tidy Tyrant was very proud when I told him that Huxley was following in his footsteps and enjoying brussels sprouts.  Crazy baby.  He is an absolute delight to feed.  I fear he may have rather a sweet tooth and I think I am to blame.  I ate a LOT of Krispy Kreme donuts when I was pregnant.

When I watched the Sally Phillip’s documentary, A World Without Down’s Syndrome?, there was something she said that stuck in my mind.  She commented that her son with Down’s Syndrome seemed far more empathetic than her other children.  She said she couldn’t help but think that people with Down’s Syndrome were somehow at an advantage when it came to relationships.  We are definitely finding this with our gorgeous little man.  Recently, whenever Daisy has been upset about something his little bottom lip has trembled and then he has burst into tears.  He takes quite some consoling.

I was feeling every inch the fabulous parent last Thursday.  Both Daisy and Huxley go to swimming lessons.  Usually The Tidy Tyrant takes one of them and I take the other.  Now that he is away working, I have to go to both lessons on the same morning.  I was like a prune by the end.  Big Brownie Mummy points for me.

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In other exciting news, The Tidy Tyrant has finally permitted me to get a cleaner.  I am incredibly ecstatic about this turn of events.  Now I just need to find one that will meet his exacting standards.  I had one in my flat in London and he made me get rid of her as he didn’t think her cleaning was up to scratch!  I have already had a lecture from him about how tidy I will need to keep the house in order that they can clean properly.

It is three years ago today, on Thursday 13th March 2014, when Daisy was just 11 days old, that we discovered she had retinoblastoma.  I have posted a picture in the slideshow above that shows our little princess on that day.  They struggled to get a vein to put a cannula in and they had to shave her hair and put one in her head.  It looked horrific.  It was horrific.  But the picture serves as a poignant reminder of how far she has come.  Just look at the little legend now!

The 13th March was a date that was already etched in my memory.  I cannot write a post on this date without a nod to all the people in this area who were affected by the Dunblane tragedy.  We lost a family friend and neighbour that day.  My thoughts are with the family today.  Sending you all my love.


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