Tiredness, school, pin sites and clothing

It's been a tough few days.  Ava continues to sleep badly (averaging about 5 hours a night) so it's having a huge effect on everyone in our house. This lack of sleep means that Ava is very grumpy and tearful.  It also means our days are very long.

Without doubt this is one of the hardest things we've ever had to go through - its physically and mentally draining on everyone and its only been 3 weeks.  It's going to be a long 9 months!  We have to keep reminding ourselves of the end result, although this offers little comfort to Ava who 'just wants the frame off'.

Despite the lack of sleep Ava has managed to attend school for a number of mornings. This has been instead of the home schooling that we were initially told about.  This has come about following several meetings between us, the school, the hospital and our county ESTMA team (educational support team for medical absences). Hopefully this continues as Ava is so much happier being in the school environment surrounded by her friends. It provides a sense of normality for her which is a good thing at the moment.

She is, however, very embarrassed and self conscious about her frame in public. While she is ok with her classmates, she covers her face with her hands when she sees any of the other children as doesn't want them to look at her. Little does she know that this draws even more attention to herself.  I'm hoping this will become easier for her over the next few weeks.

Some good news is that the pin site cleaning only took us an hour this week. The pictures below show the equipment needed for this. The hospital provided enough material for a few weeks, but the rest has to be ordered from the GP.  I've included a picture of what the frame looks like minus the foam pads covering the pin sites so its possible to see what needs to be cleaned.  Although it was quicker this time, the whole process is still fairly stressful for all involved and is definitely a 2 man job in our house (i do the cleaning and Simon tries to distract Ava as much as possible).

A few tips on clothing for parents who have a child who will require lengthening, although this is more appropriate for girls.  The best item of clothing is obviously dresses as they go over the head. However, if your child is wearing the frame in winter months (or like us is experiencing the coldest March for 10 years!) then a dress is not always suitable as its impossible to wear tights or leggings with a frame.

We have bought a variety of track bottoms which we have had altered so they can fit over the frame. I had been told by the hospital to cut down one side of the trousers and stitch in Velcro. We found a dressmaker who did this, but Ava found it quite itchy on her skin and when she sat down the Velcro often unfastened. The solution has been to put a zip down the side - from top to bottom. This means you can zip up the trousers from the waist down to the start of  the frame.  In terms of knickers, the dressmaker has cut down one side and stitched in poppers. So far this has been working really well.