Chromosome Disorders

Ticking Along

I have been meaning to sit down and write a blog but decided there was no point in writing one just for the sake of it.  I’ve been waiting on some blogworthy material.

Yesterday we were back at our weekly Hydropool Group run by the Additional Support Needs (ASN) team.  It hasn’t been on for a few weeks so Daisy and Huxley were excited to be back in the pool.  Particularly Huxley, who was absolutely delighted to be trying to splash all of the water out of the pool.  It was lovely to watch as he hasn’t shown himself to be as much of a water baby as his big sis.  He was splashing and smiling and giggling and I think everyone was laughing with him.  All the children get so much out of being in the water.  Their little faces light up as soon as they feel the water around them.  We learn a bit of makaton, sing nursery rhymes and then they all enjoy when the lights go off and the projector and light display is switched on.  It is also lovely for the parents.  We get to have a coffee afterwards and its lovely to chat to people in similar situations who we can get support from.  There are so many of us now that they have had to split us into two groups.  It’s a busy afternoon for the ASN team.  Thank you very much for all your hard work finding a way to run two groups Andy, Lisa and Margaret.  It is very much appreciated.

Daisy’s sleeping pattern has been erratic for quite some time.  In fact thinking back it was like that before we went on holiday.  She has always been a tremendous sleeper.  So much so, that we have always had to wake her up.  Even when she was a tiny baby, we had to set an alarm to get up in the night to feed her as she just wasn’t bothered about being fed.  For the past few months she has been waking at roughly the same time most nights between 3 and 4am.    She then lies awake for about 2-3 hours before falling back asleep just as it’s time to get up.  I have been wondering if it’s the movicol (her constipation medicine).  I give her that at about 10.30pm while she is asleep.  There are some benefits of a tube; you can give children disgusting medicine and they don’t notice.  Anyway, I digress.  I have been wondering for a while if it is jumbling up her insides and waking her up.  She doesn’t seem unhappy and once we have checked her we usually leave her to her middle of the night parties and go back to sleep ourselves.  But it’s really beginning to worry me as it means she is lying burning calories that should be being used to put on weight!  It then knocks her sleep pattern during the day as she is exhausted which isn’t good for her development either.  I tried giving her the movicol at a different time of day and was reminded why I had been giving it to her at night.  She threw up her next blend.  Not cool.  So I am trialling a period of no movicol.  We had her down to just 1/3 of a sachet now that we can get lots of fibre into her blended diet so here’s hoping she can manage without it.

It’s difficult for us to gauge how much understanding Daisy has.  We know she is communicating in her own way and we can tell when she is happy and excited or tired and wants to switch off. But how much of what is going on with the world can be a bit of a mystery.  This week she has done a couple of things that show she is beginning to understand the world around her.  She picked up my phone the other day and it was upside down.  On the reverse of the phone I have a load of photos.  She seemed to realise they were upside down and turned the phone around.  I wondered if it was just a fluke and took the phone off her again and turned it upside down and gave it back to her.  She did the same again.  Could it be that she understands it was the wrong way round?

Yesterday she was playing with one of those toys that has stacking rings.  She hasn’t got one of these at home (although there should be a lovely little amazon parcel arriving with one today).  She picked off the top ring and then tried to put it back on herself.  She found it a bit tricky as her fingers were in the way, but she was really determined that was where it should go and was trying her hardest to get it back on.  These will seem like such tiny tiny things to most people, but to us they mean the world.  It shows us that there is a lot going on in her little mind even if she can’t tell us. Yet!

Huxley is still desperately trying to move and getting more and more frustrated that he hasn’t quite worked out how.  I’ve been trying to help him by bringing his knees up for him but he just straightens them out again when I let go.  He is still loving his food and has even crept up a percentile in his weight chart.  If only he could share a little of it with Daisy.  He is now only about 1kg lighter than her.  They are definitely starting to look like twins!

I went back to work today.  I’m just going to be doing 1.5 days a week which I think is about the perfect amount of time!  I left Huxley with Glamorous Grammy and she took him to Baby Sensory.  When I walked in to pick him up he heard me come in and gave me the loveliest smile and started jumping up and down.  It was bloomin fantastic.  Daisy couldn’t give a jot when I leave her or come back.

I can hear Hungry little Huxley waking from his slumber.  That means I have approximately 35 seconds to get him and give him is bottle before he becomes very furious with me.

I’ll try and not leave it so long between blogs next time!

 

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