Ella has quadriplegic cerebral palsy (all 4 limbs affected) with her upper arms affected more so than the legs. However, in quadriplegia, it’s usually the other way round, legs affected more than arms. I often wonder whether she actually has double hemiplegia, but the fact still remains that it’s hard work for her to do things.

The standing frame is excellent for helping to strengthen her neck muscles and experience different arm positions for playing with toys. The poor head control needs improving before she can begin to strengthen her trunk and stabilise some of the other movements. She certainly knows what she wants to do, whether it’s grabbing or moving an object; it’s the helping her to do it that will take time.

One aspect of the poor head control involves a preference for turning her head to the right. In hindsight, we remember she used to do this a hell of a lot during the months she spent in the NICU incubators. Since then, many physiotherapists have commented that they wish (as a profession) they had more input into helping babies that are holed up in NICU, but I guess it’s just one of those things that’s overlooked when preemies are fighting for life.

The good news is that Ella does have a good range of movement in her neck, so it’s important that we encourange her to roll her head left as often as possible. One of the best ways of doing this is to simply ensure that activities/play/objects are taking place to the left of her body. Luckily for me, Ella is a born footy fan, so an excellent way is to shove the footy on and ensure she has to turn left to see it! She also loves Delia Smith; it was on the other day and I have never seen her be completely silent for an hour other than when she’s asleep! And before I get shouted at, no, I don’t make Ella watch the TV all day!

More recently, we obtained a Squiggles Seating System. Again, another excellent piece of kit for providing support whilst sitting to play/eat etc., although we haven’t used it for feeding yet, as she sits reasonably well in a standard high chair and can eat alongside her brother.

The next thing is the sleep system, but I’ll post about that once it’s in a we’ve tried it out.