A few little somethings about life, kids, pretties and cake. Always cake!

Tuesday, 7 December 2010

Sleepy Roses (sorry lots of reading here!!)

This time of year is really bad for making you sleepy. Central heating, less daylight hours and less daylight in those hours, its little wonder that half of us get a bit Seasonally Defective and Disorderly really is it!!??!! 

We try to stay on top of it here at Rags HQ because it used to get me something rotten when i worked in the city. Inside all day bar half an hour at lunch and even that wasn't the full half hour, who wants to eat lunch sat looking at the traffic on Cheapside or Cannon Street!!! So we make sure we go out everyday for a while but there's not so much to do outside in the cold when your trying to keep small rose buds warm in their pushchairs and you live in a very small place. 

Chloe's not been well on and off for the last week or so and that means not sleeping properly. Its always the first thing to be affected when shes coming down with something because its always been her weak point. Shes now taking a sleep hormone called Melatonin which is helping when shes well but when shes poorly I'm right back to being up half the night with her. 2 and a half years of broken sleep is hard! 

 Chloe doing the clever walking with her current walker, 'chooo chooo'

Its helping though, the sleep, when shes well, shes doing very well in generally. Her walkings coming on nicely and her physio wants to try her with a walking frame that she pulls rather than pushes to give her more stability in her legs. Shes doing very well with it in her sessions so hopefully we can have one at home soon.

She will be getting her new splints for her legs next year too. She was prescribed extra calorie drinks in the summer to get some meat on her bones so they can start thinking about surgery on her heart again. She had not put any weight on for nearly a year at that point and looked like she was just stretching as she got taller, very strange! Its helped loads and she'd put on nearly 2 kg in 10 weeks that last time she saw the dietitian in the Autumn so the Cardiologists should be happier this time when we see them on the 15th. It did mean she suddenly had a growth spurt though, all those extra calories, and in 5 weeks she had out grown her leg splints so we had to make do with a sturdy pair of Clark's Boots and some insoles which support her arches while we waited for an appointment. 

New Boots!!

Well not so new now but that's what we call them still!!

That was in September. Our appointment (the earliest they could do) is the 4th of January!!!!! I think the NHS does a fabulous job and it is really stretched with the resources it has. This is clearly not enough and they go and make more cuts!!!! 
Anyway splints, they will help, her legs are so much more stable when she wears them her little ankles don't roll and she has more confidence to walk and move so hopefully they will fit them when we go and we might get them by March :|   

Her last ones were leopard print!!!!

We're hopefully seeing the speech and language therapist again next year too so we can start building up Chloe's understanding to using PECS, Picture Exchange Communication System. Basically Chloe will use pictures to show us what she wants. This would make a world of difference as her communication is limited at the moment. Although i and others that spend alot of time with her know what she wants she would struggle to show someone new, teachers, TA's etc and given that she can start at the pre school at Highfields in September, statement allowing, i would like to start as soon as possible. 

One major stumbling block though, Chloe does not point to things when we are practicing identifying pictures, she kisses them! My daughter, gotta love her!!

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