Chromosome Disorders

Garrulous Gabi

This week has been a muchos better week at Stov HQ.  The cleaner started, the vomit count has reduced and The Tidy Tyrant has been home.  Win Win Win!

We did end up in the local hospital one afternoon last week.  I had taken Huxley to the GP as he was full of the cold and was barking like a dog.  They didn’t seem too concerned about him until they had a bit of a poke around and noticed he had a rash across his body and legs.  Bad Mummy hadn’t noticed the rash.  In my defence it was very faint.   I mentioned that he sometimes gets a rash when he’s been having a rant about wanting some food and that I always put it down to the fact he had low platelets when he was born.  This seemed to pique their interest and we were sent to hospital to have his bloods checked.  He was still being his usual happy chatty self so I wasn’t worried about him.  He happily flirted away with the nurse and the Doctor when we got there.  When they stuck a cannula in his little foot to get some blood, we were all fully expecting him to have a bit of a tantrum .  He did have a bit of a wiggle and tried to pull his foot away but he didn’t cry.  What he did next surprised us all.  He looked up and blew a raspberry in their faces.  It was hilarious.  That’s how to own it little man!

Anyway turns out he was fine and just had a cold so I’m assuming it was Daisy that gave him it and that is what was causing all her vomiting.  She’s certainly much better this week.  I have been chatting to another mum who has a little boy with the same chromosome deletion as Daisy and they seem to have very similar symptoms.  She said he was a serial projectile vomiter and then one day it just stopped.  Here’s hoping Daisy’s vomiting just stops one day.  It has been great to chat to someone who has been through exactly the same and understands how I feel.  She told me that she found the whole vomiting thing far more difficult to cope with than the retinoblastoma stuff.  I couldn’t agree more.  It probably sounds strange to most people.  With the retinoblastoma there is a plan.  There is a treatment strategy.  You know what you have to do to fix it.  The vomiting is one giant unknown.  It’s not just a case of mopping it up when it happens.  I get anxious about going out and having to feed her.  To the extent that I either avoid feeding her while we are out (not good as she needs to gain weight) or I avoid going anywhere around the times that she needs fed.  I spend hours worrying about it and trying to figure out why it’s happening.  Just when I think I have it sussed it starts off again.  It was nice to chat to someone that just got it.  And she gave me a great deal of hope!

My happy little man is currently on a boy’s trip with his Daddy to visit Nifty Nan and Glorious Grandad.  He’s having a grand time.  I am missing him heaps.  I’ve only had one night away from him until now (not counting the nights he has had a sleepover at Glamorous Grammy’s as he’s just along the road).  Garrulous Gabi (ok so that’s not her name but the word garrulous is so bloody apt for her) popped over on Monday night and straight away commented how quiet the house is without Huxley.  It was only when she mentioned it that I really noticed how empty the house felt.  He’s got rather a lot of presence for a tiny wee person.  Her whirlwind of chatter made up for the lack of Huxley babble though.  She had her not quite so little man, Fiery Flynn, with her.  Daisy of course was on cloud nine as he is another of her favourite men.  She is a shameless flirt.  Can’t think where she gets that from.

Daisy has had a promotion at nursery.  She has moved into the age 3-5 room.  She’s having a blast in there;  I think because there is so much going on for her to watch.  And lots more boys to admire.  I went to pick her up from there today and she was sitting smiling away at everyone.  It’s so funny to see her in there as she is so tiny compared to them all.  To give you an idea of quite how small she is, she wears 12-18 month clothes.  I was nervous about her going into that room as she is so far behind developmentally than all of them.  I was anxious that she wouldn’t be included.  I think this is one of the biggest fears of parents of children with additional needs.  You want them to be involved and make friends.  However, The Tidy Tyrant gave me his standard pep talk, ‘she’ll be fine’, and Glamorous Grammy used a few more words than that to convince me that it is good for her development to be in with her peers.  I’m glad I was persuaded.  She is loving it.

We’ll be enjoying a lot of family time for the rest of the week before The Tidy Tyrant goes off to work again.  Daisy will no doubt be like a prune by the end of it as he’ll no doubt take her swimming a lot.  I’m hoping he’s going to take me somewhere lovely for a date night…

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