Chromosome Disorders · Uncategorized

Slowly, slowly catchy monkey

I really must write these blog posts more often.  Maybe if we had stuck to dry January I would have had more time to write them but we got bored of it last weekend and cracked open the prosecco and gin.  Not in the same glass I might add.  Oops.  I am pleased to report that we have managed to stick to our no McDonalds rule.  One out of two ain’t bad!

There’s lots to report here at Stov HQ.  Huxley is very nearly sitting up all by himself.  We are going to practise (I do hope that is the correct spelling of practise) lots this week to show off to jet setting Glamorous Grammy when she gets home from her Caribbean holiday on Thursday.  Which gets me onto why parents are so obsessed with bragging when children hit milestones earlier than the ‘average’ baby.  We see it all the time, oh look at my clever baby who can sit, crawl, walk, etc., etc. months before most babies can.  What does it really prove?  I wonder if people have done a study to find out if Olympic athletes happened to hit physical milestones before the ‘average’.  For me, I am keen that Huxley hits them close to the average.  I suppose I am hoping that this is a sign that life isn’t going to be to difficult for him.  I guess that’s why we all do it.  We are taking it as a sign that our precious bundles are going to be ok.  That they are going to get along in life just fine.  I would walk to the moon and back for Huxley, but I don’t think that sets him up to be independent.  I need to show him how to walk to the moon and back himself.  Although he has a small heart murmur that they said would only be a problem if he wanted to be an astronaut or a deep sea diver so maybe I need to rethink that.

Huxley is still enjoying his food.  Well apart from my homemade soup.  I kind of blew his little head off with too much pepper.  He was ok with chilli but pepper was a step too far apparently!  I didn’t realise how terrifying weaning babies is.  I want him to try textures and more solid food but I am scared he chokes.  I found a good rhyme online to put my mind at ease, ‘Loud and Red, let them go ahead.  Silent and Blue, they need help from you.’  Daisy is still following his lead and is tasting more food.  We try her with food loads more often now that we can give her some of what Huxley is eating.  Previously, so much food was wasted if we made her anything.  Now, Hungry Huxley demolishes anything that she can’t get through. Win win!

The wee man has started swimming lessons.  He’s not quite the water baby that Daisy is but he is enjoying them.  Better than the bath anyway.  He goes rigid in the bath and looks somewhat panicked.

We took them both to get weighed this week.  As a starting point for Huxley’s weaning and Daisy’s blended diet.  Huxley is making his way up to the next centile and Daisy has lost weight.  Not ideal.  I am putting it down to being all out of routine over the holiday period and she probably had less food than normal as a result.  Fingers crossed that the blended diet does its work and she puts a load on in the next month.

The blended diet is going well.  She has kept all but one of them down, and the one that bounced was when she was falling asleep.  That seems to be about the only time she is sick these days.  I don’t think it was anything in the blend.  We cleaned her up and put another blend down her 20 minutes later and she was fine.  So peculiar.  I am managing to get more calories per ml of blend than her milk so in theory she should put on weight.  She is also managing to keep her milk down much better.  She has only been sick about 3/4 times in two weeks.  Mrs Mop has been pretty much redundant.  Today we replaced her morning feed with a breakfast blend of weetabix, oat milk and an apple.  That stayed down too.  So we have now replaced half of her daily intake from milk to food.  It’s so exciting.  I definitely think it’s reducing the vomiting so now I have to hope she manages to gain more weight.  Weight gain has always been a problem for Daisy.

She got her new pink boots this week.  You probably saw the pic on instagram.  They are gorgeous but an absolute nightmare to get on.  They are very stiff and her curling her feet up doesn’t help.

Daisy has just made the connection between cause and effect.  This week she has found her shadow and gets all excited when she moves and can follow her shadow on the wall.  We also think she is starting to try and sign words.  When we make the ‘D’ for Daisy sign her little hands come together as if she is trying to do it for herself.  It spurs me on to try and use makaton as much as possible.

So the progress just keeps on coming.  There has been a real leap in the past month or so and what is even more satisfying is when other people mention it to us.  When you see it every day, it can be so small you have to look hard for it.  But when people haven’t seen her for a while and they mention how far they think she has come on, it’s so lovely to hear.  You know you aren’t imagining it.

It’s been a while since we visited Daisy’s favourite restaurant, Pizza Express.  So I have converted all our Tesco points into vouchers and booked us a table for this evening. Yum Yum.  Maybe Daisy will even eat this time!

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