Chromosome Disorders

Flying Solo. Again.

I am flying solo again.  The Tidy Tyrant has disappeared off to work again.  This time for about two months. Argh!  Hopefully we’ll get a wee holiday out to see him.  I’ve been investigating this and it is pretty much impossible to fly out on my own with two non walking bambinos.  It would be fine if one of them could toddle but the logistics of getting them both on and off the plane, along with all the cabin luggage I need to take for Daisy’s feeding equipment, is beyond me.  Thankfully Glamorous Grammy and Patient Pops have agreed to accompany me to help.  Now I just have to figure out a way of doing it so that it doesn’t use up all the money The Tidy Tyrant is out there earning.  That would just be pointless.  And that diamond ring I have my eye on would fade into the distance!

However there is a lot to look forward to in April to take my mind off the lack of husband.  I have some of my hockey mates from London coming up to visit and one of my besties is having a 40th birthday party.  She is much older than me you understand…

We were back at the Doctor last week about Daisy’s constipation.  She liked the diary I have been keeping which notes everything she eats, when she sleeps, when she pukes and when she poos.  It has definitely been worth doing as it has proved that she is less sick and is sleeping better when she is not on movicol (constipation medication).   The Doctor wants me to add one more thing to my diary.  A Bristol Stool Chart.  This is so I can make a note of the types of poo she has.  I can’t see anything on the chart for ‘absolutely fooking huge’.  Honestly, you wouldn’t believe the size of what comes out of my tiny little person.  There is no wonder she struggles to get them out.  I really never expected my life to be so consumed by puke and poo.  Anyway, we are now trying lactulose.  It’s a bit of a game of trial and error with the dose until we get it right.  However, it doesn’t seem to be making her she sick.  And thats a big, massive thumbs up from me.  That’s not to say she isn’t being sick.  It’s just that it doesn’t come after the lactulose like the movicol did so I’m happy that it is not the lactulose doing it.

I have been feeling a lot better about the whole puking situation in the last week.  It seems to be getting better.  To find out if this is actually the case or whether it is just my mental state coping with it better I decided to do a vom count.  As of today she has been sick 14 out of the last 22 days.  Now this might seem a lot to you guys but this is actually ok.  Looking back to the first 7 days of the diary she had been sick 5 out of 7 of the days.  So there is an improvement!

My wee happy Huxley is becoming increasingly frustrated at his inability to get moving.  He’s been trying for about 2 and a half months now.  He can push himself backwards with his arms.  I think his problem is that he hasn’t worked out that he needs to pull up onto his knees.  I’ve been trying to show him but he just straightens them and flops back down again.  I’ve called the physio to get some exercises to help him.  We’ve got a playdate with some of his wee pals tomorrow so maybe they can show him how it’s done.

I realised I haven’t reported on our McDonalds ban.  We have managed to stick to it.  Three whole months without a McDonalds.  Last week was the first time that I actually really fancied one.  I managed to stay strong though.  Pat on the back for me.

Tonight I shared a video of Laurel who had her second eye removed yesterday as the Doctors felt her life would be at risk if she didn’t.  I have been thinking about her a lot this week.  It puts a lot of things into perspective.  I just loved the video of her playing with her brother and her new sensory toys.  It shows just how amazing and resilient children are.  As well has having her eye removed, Laurel is undergoing more chemotherapy.  She is a little superstar.  I just know all of you will be touched by her story.  Please everyone have everything crossed for little Laurel as they have to wait to find out if the cancer has spread.  I have absolutely everything crossed that it hasn’t.  Sending you all the love and luck in the world Laurel.

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