Thursday, 21 March 2013

Jessica's favourite colour

Jessica was at music therapy the other day, when the therapist wanted her to participate in an activity using a bell.
The therapist asked me what was Jessica’s favourite colour, as she felt Jessica would be more motivated by a bell in a colour that she liked. I hazarded a guess at red or pink (these are the colour tops she always chooses to wear, but equally most of her clothes are either pink or red, so I am not sure how much this reflects her choices or mine!) But the therapist only had 3 bells- yellow, blue and green. I told Jessica that she had to choose one of these as this was all there was, but she looked at them all, and then pointedly turned them all down.
The therapist then had to go and find a red bell and bring it back for Jessica, who immediately reached out and rang the bell, and started participating in the planned activity! So I guess I was correct that red might be a favourite colour!!

Friday, 15 March 2013

All you need is wet wipes

I know that some people can get very stressed at the mess feeding children can cause, and those who know me will be aware that, I too, can be a bit OCD about these things !
However, it is the clearing up of the mess that I am fussy about, rather than the actual making of the mess.  
But if a problem can be solved with a change of clothes and a packet of wet wipes, then there are bigger things in life to be worried about!!

Saturday, 9 March 2013

Scoliosis photos

Following my previous post on Jessica's scoliosis, here are the photos that I couldn't upload before.
The first photo shows how Jessica has adjusted to the curve in her spine, and now leans to the left when sitting or being held in a standing position.
The second photo shows Jessica in her lycra body suit. You can see how it forces her to sit in a different position, as it pulls her spine back into alignment.
Jessica leaning to the left because of the curve in her spine
Jessica sitting up straight in her lycra body suit, designed to correct her scoliosis

Sunday, 3 March 2013


Some of our more recent appointments have been to Great Ormond Street Hospital about Jessica's new diagnosis of Scoliosis.

Back in July last year, Jessica had an x-ray of her spine, on the advice of a doctor who knows a lot about Rett Syndrome. This is because it is very common for girls with Rett Syndrome to develop a curve in their spine - scoliosis. It was supposed to be baseline x-ray, a normal x-ray so that they have something to compare to in the future if Jessica were to develop problems . But when it came back, it showed that she already had a slight curve, so she was then referred to a spinal management team, as scoliosis in Rett Syndrome can have many implications. The hospital recommended that she wear a lycra body suit. This is a suit looks a bit like a wet suit, it has short arms and legs, and basically makes her look like she is about to go surfing! The aim of this is to encourage the spine to move into a straighter position while she is wearing it, but while maintaining her ability to sit and crawl. The alternative (a rigid brace) would still correct the alignment of the spine, but would have complications, such as limiting her mobility, and risk weakening her upper body strength and muscle tone. However, she is almost definately going to need a rigid brace in a few years time.

Jessica is not very keen on the body suit. It provides her with a lot of sensory input from the tightness of the suit on her skin (girls with Rett don’t “feel” things the way we do, so this must be very strange for her).  Jessica is also used to the curve in her spine now, and has adjusted how she sits and crawls. However because the body suit straightens her spine, it consequently  makes  her use different muscle groups from those she normally uses.  This means she finds it difficult to sit up and crawl whilst wearing it.

Ultimately, the hospital wants Jessica to be wearing the suit from morning to bedtime, but we need to start her slowly, just doing a few hours here and there. And so far, she is doing really well. She is learning to tolerate it (she no longer cries when we put it on) and is slowly learning how to sit and crawl in it.
I did want to upload some photos of Jessica, both with and without the body suit, so you would see what I mean, but for some reason I'm not able to. I will have to upload them another time when the problem has been resolved.  

While Jessica is trying to be brave, I know she hates it. It is so hard to make her wear the body suit when  she doesn’t understand why she needs to and the implications of not doing so. Indeed, the implications are so huge that I am not sure any 3 year old could grasp them.  I’m not sure even we have fully got our heads around how serious this all is, and what it could mean for the future.   But I am so proud of her for giving it a go, and trying to make it work for her. She puts up with so much and takes everything in her stride. She is an amazing little girl.