Life at home

We have finally been discharged from hospital.  We asked for this to happen as Ava was not sleeping well on the ward. It's great to be home and Ava seems more comfortable in more familiar surroundings. She is managing to get around (albeit slowly) with her zimmerframe from room to room.

She still has a few tearful episodes a day which tend to be out of frustration and the general feeling that 'this is unfair', but they are becoming less frequent.  We do know from the consultant and nurses that this is all part of the lengthening process. There will be days when Ava is in better spirits and those when she is quite low - sometimes out of pain, but more commonly frustration and isolation (not being able to do what her friends are doing and staying at home more than she previously did).  At weekends we previously would have been out a lot with both of our kids, whether this was going to the playground in the park, to soft play or swimming (Ava's favourite). But this is not possible for the next 9 months, so we need to find other activities to keep Ava's boredom at bay.

We are slowly getting to grips with how our routine needs to be adapted and have found new ways of doing things. For those reading this blog who have a child who will be undergoing lengthening this is what is currently working for us:

Sleeping
Ava is sleeping in her own bed with her leg elevated with a pillow. She has to sleep on her back as it is impossible for her to turn on her side due to the weight and size of the frame. This is one of reasons why she isn't sleeping well as she is used to being on her side.

We were considering moving her room downstairs and buying a sofa bed as we were unsure how Ava would manage the stairs. However, we have discovered that a way to master this problem is for Ava to go up the stairs on her bottom with either Simon or I holding her frame up. The same applies for  coming down the stairs.

Some may prefer not to do this, but we felt it was important for Ava to be in her own room and for us to be on the same floor as her (this is particularly useful as there has been quite a bit of night waking so far).

Washing
As I've mentioned in my earlier posts, it is only possible for Ava to shower once a week during the cleaning of her pin sites. She is not allowed any baths for the duration of the treatment as this increases the risk of infection as you are in effect sitting in your own 'dirty' water.

Cleaning of the pin sites and showering is pretty traumatic and involves lots of crying. Thankfully we only have to do this once a week. The cleaning of the pin sites took the nurse 30 minutes in the hospital, but took Simon and I nearly 2 hours. I doubt I'd make a very good nurse, but hopefully as the weeks go on I can beat that time.

Going to the toilet
Ava can manage this on her own with the use of her zimmerframe - which is good news. But does need help re fastening her knickers as these now have buttons down the side (not an easy task while standing on one leg!).

Affect on other siblings
This is quite tough as invariably Ava has the majority of our attention. We have a 2 year old  so have to devote time to him too. The test will be when Simon returns to work when I have both kids on my own (you obviously can't push a buggy and a wheelchair simultaneously).  Luckily I have my mum nearby and some good friends who have said they'll help out.

Lengthening
This has to be performed daily and we find the best time to do this is in the morning. We give Ava some paracetamol and then turn the various struts about 30 minutes later. I do the lengthening and Simon distracts Ava as much as possible. It shouldn't yet be too painful, but I can tell Ava has some discomfort by her reaction and reflex. Hopefully I'll have some better tips on what to do as the weeks progress.

For more information on how to cope with a child undergoing lengthening you can visit www.steps-charity.org.uk.  STEPs is a charity for people born with lower limb conditions.  They have a booklet for parents that provides information on caring for a child with an external frame/fixator. I found this to be really useful in informing us on what life will be like for the whole family, plus advice on what you need and ways of coping.

4mm down.  5.6cm to go........