Chromosome Disorders

This week has been a bit sh1t.  Sorry I mean a challenge!  The Tidy Tyrant has now been away for 11 days and I’m feeling it.  When he’s been away before I’ve managed the single mum lark with relative ease but this time has been a lot harder.   I have been trying to fathom out why.  I have concluded that it’s because of all the feeding.  No sooner have I finished one round of feeding than it is time for another.  Last summer when he was away, Huxley was just on bottles and Daisy was on her prescription milk.  They were a lot less time consuming.

Added into the mix has been Daisy’s regression back to her pukey ways.  She has been sick every single day this week.  She even projectile vomited a chocolate blend all over Uncle Quiet and my kitchen wall.  I can’t work out why she is being more sick again.  It’s the one thing that has the ability to get me down.  It’s not just the cleaning up and starting the feed all over again but the anxiousness around feeding her when we are out.  But, I will not be beaten by this.  I have started a diary.  I am recording her sleeping, her eating, her puking and her pooing.  I am hoping that I make some incredible discovery that is going to make my life easier.

She has also been waking up at 5am every morning.  She’s not desperately unhappy but it wakes me and then I can’t get back to sleep.  The constipation has also been bad again so I decided to take her to the GP.  I explained that I had managed to get her off the movicol and she was sleeping better (well until this week anyway) but that she was still struggling with her number twos.  It’s actually heartbreaking to watch.  She’s been screaming in pain and her little bottom has been bleeding.  The GP decided that I need to speak to her paediatrician because she is so complex that they don’t want to change anything.  In the meantime, I have to put her back on the movicol.  I don’t want to give it to her at night again as I am convinced that it wakes her in the night.  This then leads to hours of lying awake burning calories that she could do with storing.  But when I have given her it during the day, she has tended to puke up her next feed.  But what choice did I have but to try and give it to her first thing in the morning?  So we have done this twice now.  The first day was fine but today she puked up her whole breakfast blend.  Who knows whether this puke was linked to the movicol.

She’s just not been herself for the past few days.  I don’t think its a tummy bug as she isn’t puking up every feed.  She doesn’t have a temperature.  So I have now moved on to thinking that she could possibly be teething.  I really wish she could tell me!  And I wish my hubby was here to give me a big hug when the going gets tough.

Thankfully I have some good friends and family to keep me sane.  A good friend popped over this morning with some flowers and for a blether and it really chirped me up after this morning’s puking debacle.  And this afternoon Glamorous Grammy and Patient Pops indulged me with my wish to dash to the shops to buy Huxley some new clothes and shoes.    He is going to look very, very cool.

It’s not been all bad though.  There have been a couple of exciting Daisy developments this week.  The first was how pleased the speech and language therapist (SLT) was with her progress.  We are aware that she has made a lot of progress recently but when other people pick up on it, it almost makes it more real.  That it’s not just us being hopeful.  Daisy was studying the SLT’s identification badge hanging on her lanyard.  Loves a lanyard does Daisy.  Then she looked from the picture to the SLT’s face and back again as if recognising that the picture was of her.  They then went and got some pictures of the nursery staff to test whether she would match other photos to the people.  She studied each picture intently and then looked to the member of staff represented on the photo.  Amazing!  My little princess is starting to make connections and associations.  The SLT is now going to use this skill to help develop her communication.

The other exciting development was that Daisy took some steps of her own accord in the swimming pool.  The only time she has taken steps before is if we move one of her legs and she then follows with the other, or if we pull her out of balance and she has no choice but to move a leg.  But this time she was actually picking her legs right up and moving them forwards.  It was incredible.  I think this is going to be the key to getting her walking.  We just need the chief physio in residence (The Tidy Tyrant) to get home and take her swimming everyday.

Speaking of The Tidy Tyrant, it seems he fancies himself as a literary critic.  After reading my last blog he called to tell me that I had been starting a lot of my blogs in the same way with an apology for not having written anything for a while and that I needed to address this.  This from the man who will go out of his way to avoid having to write anything if he possibly can.  Notice I did take on board his criticism, sorry I mean constructive feedback, and have not done it this time!

Huxley is still desperately trying to crawl.  He is however getting more adept at finding alternative methods to get himself to where he wants to be.  Everyone keeps telling me he might be one of these babies that doesn’t crawl and goes straight to walking.  This just won’t do!  I want him to crawl.  I am desperate for him to crawl.  I want him to succeed where his sister couldn’t.  Then I want Daisy to watch him in awe and wonder and think, crikey thats mightily useful I think I’ll give that a go myself!

Where he is being very successful is in eating everything I put in front of him.  This week he has delighted in trying brussels sprouts, black pudding and pickled beetroot.  Not all at once I might add.  We were out for Patient Pop’s 70th birthday lunch today and I ordered him a roast chicken dinner from the kid’s menu.  He ate most of it.  A little 9 month old baby eating a child size portion of roast dinner.  Fabulous.  My lovely little man.  Couldn’t love him more.

Anyway, tomorrow is a new week and with it brings me a cleaner!  My positive pants are back on and I am ready to take on the world again.  Well my little worlds anyway!

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