Chromosome Disorders · Uncategorized

Sleepy Stovs

It’s been a while since I blogged.  My time has been taken up with changing nappies, doing washing, cooking, preparing blends and feeding the bambinos.  I am very pleased to report that I have been doing very little mopping 🙂

The blended diet is still going really well.   Projectile vomits are rarer and rarer these days.  Having said that, we did have an ‘incident’ in Wagamama’s yesterday but we managed to catch it in a muslin.  It was a milk feed rather than a blend and we know it’s the milk feeds that can be precarious.  We are down to only one small milk feed a day so she is getting a blend for breakfast, lunch and dinner.  We need to keep one milk feed so she can still tolerate it for nursery feeds.  Glamorous Grammy thinks that her skin is looking healthier and the dry patches she had have cleared up.  We are still playing around trying to get the right amount of fruit and fibre in her diet as she is sometimes finding going for a number two hard work.  Next week we are going for a weigh in with the health visitor so I am crossing fingers that she has put on some pounds.

Daisy was a bit of an egghead last weekend.  She was doing some great standing but then toppled forward.  We caught her at the waist, but as she has low muscle tone, her top half flopped over and her head hit the floor.  It was horrible.  She screamed.  I cried.  I felt so guilty.  Thankfully she was absolutely fine.  I fully expected her to vomit as she had just been fed but she kept it down.  As soon as she calmed down (and I calmed down), the Tidy Tyrant got her standing again to make sure she wasn’t put off by her tumble.  The little poppet got straight back up and did some more standing.  I am tempted to put her in a cycle helmet every time she is upright!

Huxley is still devouring food.  I am getting braver and braver and giving him more lumpy food.  In fact he managed a cooked breakfast the other day.  He is definitely gaining weight and is only about 1kg lighter than Daisy now.  In fact they are now wearing the same size nappy.  He’ll be mistaken for the big brother in no time.

His sitting is now really good and he is desperate to sit up from lying down.  He hasn’t worked out that he needs to roll on his side and use his arms.  He must be working on having rock hard abs as he keeps trying to sit straight up using his elbows and stomach muscles.  The determined look on his face tells me he’ll keep trying until he manages it.

I love seeing how other children with similar conditions to my two are getting on.  One friend has a gorgeous little 3 year old girl with Down’s Syndrome and she said Mummy for the first time last week.  She posted a video of it on Facebook.  It was the most fantastic thing I saw last week.  I had a tear in my eye and goosebumps on my arms.  She commented that she finally knows what it feels like to be called Mummy.  I can totally relate to how unbelievably excited she must have been to hear that awesome little word.  Who knows when I will hear it.  I have my money on Huxley saying it before Daisy.  The race is on.  I realise that beautiful little word can become very tiresome in in a very small space of time when your little one shouts Mummy, Mummy, Mummy, Mummy, Mummy all day long.   But for me, please take a little step back and appreciate that they can say it and send a bit of hope our way that one day Daisy will say it too.

Patient Pops is 70 this year and I’ll be 40 so we have decided to go on a family holiday.  Uncle Quiet and Auntie Peaceful are coming too.  The Tidy Tyrant doesn’t yet know where he’ll be working this summer so he’ll be a late addition to the party if he can make it.  We thought about a cruise, but I’m confident Huxley will be on the move by then and I’m not sure the fellow cruisers would appreciate him tearing around the ship.  Uncle Quiet suffers from seasickness so that wouldn’t have been an ideal holiday for him either.  We have booked a villa in Portugal.  Daisy requested a pool and a waterpark nearby.  And far be it for any of us to deny her this request.  I am soooooo excited.

We took Daisy and Huxley to the cinema for the first time on Sunday.  We saw Moana.  Huxley downed a bottle of milk in the first 5 minutes and then crashed out on my knee for the rest of the film.  Which was actually a relief as he doesn’t often sit still these days.  It’s like having a jack in the box on your lap.  Daisy was super excited and enjoyed about two thirds of the film before she too crashed out.  I managed to refrain from eating my body weight in pick and mix.  Admittedly this cinema had a very poor pick and mix selection which may have had more to do with it than my somewhat questionable willpower.

As for the Tidy Tyrant and I, we have managed to stick by the no McDonalds rule.  1 month down, 11 to go.  I’ve not actually missed it.  Yet.  The fitness regime on the other hand is taking a very long time to kick in.  I’ve always been a runner (well on and off).  Just before I got pregnant with  Huxley I managed to complete the Edinburgh Marathon in 3 hours 34 mins (can you tell I am super proud of that?).  That’s an average pace of 8:08 per mile.  Currently I am struggling to run 4 miles at that pace.  It’s so frustrating.  I am determined to plod on though.  To motivate me I have entered another half marathon.  It’s in five weeks time.  It really would have been sensible to maintain the running after the last half marathon in October.  Depending on how that goes, I may or may not run the Stirling Marathon that I foolishly entered myself into a few weeks after Huxley was born.

Daisy has her first retinoblastoma check up in Glasgow this Friday.  It’s nice to know we don’t have to trek all the way to Birmingham (although we will miss the opportunity to catch up with friends and family there).  It’s an early start though.  We’ve to be there at 7.30am.  They don’t allow eating in the pre-theatre playrooms at the Glasgow Children’s Hospital out of respect for all the children that are fasting (take note Birmingham!).  I don’t think Hungry Huxley would be able to comply with this rule so he is going for a sleepover at Glamorous Grammy’s where his every whim will be indulged for sure!  We’ll be crossing everything for more good news on the eye front.

 

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4 thoughts on “Sleepy Stovs

  1. How I enjoy reading your blog!! I am glad to read about the positive progress of Daisy. You make me smile and tearful as well with your writing. And what a lovely little guy Huxley is. I am not sure if you have seen me pregnant but I gave birth to a girl two months ago. Time flies ! She changes everyday. Isaac is going to Birmingham for his exam this Friday as well. Here all goes well for both our kids!! Sending love your way, Selam

    Liked by 1 person

    1. Oh Selam, mahoosive congratulations. I didn’t even realise you were pregnant. How exciting. What have you called her? I bet she is absolutely beautiful like her gorgeous Mummy. Good luck on Friday with Isaac xxx

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  2. Hi Sally…following your updates religiously and really thrilled by the progress both kids are making. You, Stav, and your family are very special, although I’m sure you just see it as just your ‘job’…. There are so many kids, with or without the challenges of Daisy and Huxley, who have no where near the love, care and determination you clearly have to see your beautiful children thrive and develop. You are one special cookie…! Look forward to hearing continuing good news from the trip(s) to Glasgow. Love to Glamourous Grammy. Pam xx. ps hats off to trips to the supermarket with two bairns in the trolley…I struggle to negotiate the ordeal on my own with a trolley! 😍

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