Chromosome Disorders

Are they twins?


It’s been a long while since I have posted on my blog.  Muchos apologies.  It’s been a busy month; mostly eating and drinking and enjoying ourselves.

We had a fabulous holiday.  It was brilliant to get some family chill time.  With the added benefit of not having to do any cleaning, well apart from endless bottle cleaning and sterilising.  Everywhere we went we were asked, ‘Are they twins?’.  It became a bit of an in joke.  I fully expected them to be mistaken for twins, with Daisy being so small, but I didn’t think it would happen this quickly.  To be honest, it was probably the matching buggies that did it.  Inevitably, the next question was, ‘how old are they?’.  The Tidy Tyrant started the holiday telling people Daisy was nearly three and Huxley six months.  But then you could see them looking at Daisy thinking she doesn’t look three and wondering what was ‘wrong’ with her.  And then I always feel like I’d like to tell them why she’s not talking or walking.  But then you get sympathy and I don’t want sympathy.  She’s fabulous.  So we decided to say that she’s two but small for her age.  That seemed to satisfy people.

They are very fidgety on a cruise ship about people being sick.  And rightly so; the norovirus spreads like wildfire in confined spaces.  This made me nervous about her propensity to vomit as people don’t tend to believe that a vomiting child is not actually ill.   Thankfully she only did two projectile vomits on the cruise.  I’d have been happier if she’d have done them in the cabin instead of in full public view by the swimming pool but there you go.  Thankfully we managed to avoid any awkward conversations.  The lady we were sitting next to at the time was a dietician and had noticed us tube feeding her so was fully aware of the amount of projectile vomiting tube fed children do.  Phew!

We switched Huxley to Aptamil Pepti (a milk with a broken down milk protein) just before the cruise.  We were told not to expect him to like it and that we may have to switch it over gradually but being the little gannet he is, he hardly batted an eyelid.  The difference was amazing.  The rash on his face reduced and he been a lot less sick.  We’ve just switched him to the formula with no milk protein and this seems to be improving things even more.  Fingers crossed the rash will completely go in the next couple of weeks.

The chromawesome kids were thoroughly spoiled over Christmas.  We had a chilled day at home with Glamorous Grammy and Patient Pops and Uncle Quiet (my wee bro) and Auntie Peaceful (his girlfriend) popped in for breakfast.  Daisy is a big fan of Uncle Quiet and Auntie Peaceful.  Probably because Mummy and Grammy are so blooming noisy all the time.

We started weaning Huxley last week.  So far he is thoroughly enjoying it.  We have been feeding them both at the same time and Daisy has definitely been trying more food.  In fact last night she ate almost the same amount of my homemade soup (proud!) as him.  A teary eyed moment.  I’m not sure how much she actually swallowed but she was happy to have it in her mouth and that’s good enough for me.  Fingers crossed this will continue.  I managed to persuade the Tidy Tyrant, after a fair few G&Ts, that we needed new high chairs for them.  Amazing the power of a G&T.  I’ve bought the BabyDan ones so they can be at the table with us.  An occupational therapist also told me that a foot rest is really important on a high chair.  Having their feet planted helps stabilise their whole body and so they can concentrate on eating without wobbling about.  These chairs can be adjusted as they grow.  So far so good. Daisy seems to be loving being at the table and see whats going on and join in.

I mentioned the blended diet a fair few blogs ago and this is something I am definitely going to try.  I just didn’t want to attempt it while we were away and then with so much going on over Christmas and Hogmanay.  The plan is to give it a go from next week.  Here’s to a lot less projectile vomiting.  To be fair to Daisy, she has been a lot better ever since we changed her milk.  We’ve gone from the daily vomit to one every two or three days.

So my hope for 2017 is that Daisy moves to a mostly blended diet, that her vomiting is reduced substantially (or even stops, but that’s maybe asking too much!) and that she manages to continue making strides physically.  The Tidy Tyrant had a bet with me that she’d be walking by September.  Still hugely ambitious in my opinion, but she surprises us everyday.  For Huxley,  I hope he continues to progress as he has so far, always with a happy smile.  I’ll be super excited the day he crawls.  Then I’ll be in trouble!


One thought on “Are they twins?

  1. Really enjoyed your update Sally & great to bump into you & the Tidy Tyrant on Dumyat on New Years Day. Look forward to your updates. Gillian

    Liked by 1 person

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