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.

Some of you may have seen this in the news over the past couple of days …

Amelia is thought to be the world’s first surviving sub-22 week micro preemie. She was delivered on October 24th 2006 by Caeserian section at an astonishing 21 weeks and six days, weighing just 260 grams and only slightly longer than a ball point pen (9.5 inches).

Some of you will know these pictures all too well if you’ve ever had to experience the delights of the NICU rollercoaster. Our twins were extremely premature at 26 weeks and survived, but 22 weeks is phenomenal. From all accounts, she’s a little fighter and has now gone home after 4 months in NICU. Absolutlely amazing, and I am so happy for the parents that their first major hurdle has now come to an end. It will almost definitely be the first of many hurdles having been born this early, but only time will tell.

Those tiny little feet are hard to imagine, but this is what a micro preemie looks like. The redness is due to the fact that they only have one layer of skin (instead of seven), and it’s like tissue paper.

To put it into context, these are the survival rates for extremely premature babies:

Babies born at 25 weeks have a 50% chance of survival
Babies born at 24 weeks have a 39% chance of survival
Babies born at 23 weeks have a 17% chance of survival
Babies born at 22 weeks have only a 2% chance of survival …

This latest story has, however, raised even more controversy over the debates surrounding the upper limit for abortions. And then there are the significant issues that can unfortunately come with extreme prematurity (this blog being the subject of one of them). But I don’t want to get into all of that in this post.

This post is to celebrate something amazing … and I really hope that Amelia goes from strength to strength. To beat survival odds of 2%, she deserves everything that life can give …