My Weak Muscles

We’ve just had a Rosie regime shift and it is turning out to the best thing we’ve done for a long time!

Rosie’s sleeping habits have been far from ideal. Unable to roll over or move herself in bed, Iain and I have to get up and physically turn Rosie every 1 – 2 hours throughout each and every night. It’s tough going – especially after almost three years.

Rosie has always have a lunchtime nap at around 1pm for about 1 – 1 1/2 hours. When she naps in the day and sleeps at night we need to put her on a ventilator to help give her body a rest and allow the ventilator to do the hard work of keeping her oxygen levels up and her lungs and airways open.

It might have worked a year ago, but for the last few months we’ve really struggled to get her into bed before 9pm. Either she just wasn’t tired or she’d go straight off to sleep but be wide awake by 4am demanding to get up and watch Frozen, Toy Story or any one of her favourite films! The stress, lack of sleep and time lost in the evenings to do anything together or for ourselves has really taken its toll!

We tried a lot of different tactics (Iain drew the line when I subjected Rosie to a night of Enya!) but couldn’t seem to find the happy balance – that was until now! Last weekend we decided to stop Rosie’s nap altogether to see how she would cope without going on the ventilator for her lunchtime boost. The difference it’s made to all three of us is amazing.

Not only is Rosie sleeping much better throughout the night, but the amount of times she wakes up to be turned has reduced to every 2 – 3 hours which makes a HUGE difference to us. We’ve now been freed up to enjoy whole days out doing fun things rather than just grabbing a couple of hours here and there in-between feeds and her nap, and she now goes to bed at 7:30pm – RESULT!

The weekend just gone was the first time Iain and I felt like a normal family. We enjoyed a visit to the aquarium to try and find Nemo and Dory…

          

(found them!)

We had fun at the fair…

We’ve been painting…

And getting in the Christmas spirit at the Jessie May charity Christmas party where Rosie had her photo taken with Anna and Elsa of Frozen…

her face painted…

met Santa…

watched a magic show, listened to a beautiful choir and also managed to pick a winning ticket in the Christmas raffle giving us a bar meal for 4 people and a swim in the health club of the hotel the Christmas party was being held – cool! Not forgetting of course a quick spin on the dancefloor!

Suddenly it feels like we’ve found our happy place. We’ve all been sleeping. We’ve all got more energy, Iain and I have our evenings back which we’ve so missed and best of all Rosie is happy.

Long may this feeling of normality continue!