So far this week we have had paediatrician, physio and psych appointments. Next week we have kidneys.
Ashlea's physio appointment was good - she has had a good response to the botox, and her (assisted) standing has improved heaps - being able to get your heels on the ground obviously makes a big difference!
Ashlea met the psychologist at the Spastic Centre today. We met with her to discuss some developmental testing we would like Ashlea to have in preparation for choosing a school. We didn't expect to get seen so soon as I'd heard there was an 18 month wait for psych services so we put in our referral early! At this stage we will just do a developmental assessment as Ashlea is too young for a full cognitive assessment.
On Wednesday I took all the girls to see the paediatrician for their general check ups.
Emma and Audrey had their height and weight checked. It was a relief to see that according to the growth chart Emma is actually growing - just slowly! She is growing along the 1st centile - Audrey is on the 50th centile and has nearly caught up to Emma in both height and weight.
Ashlea will get weighed and measured (and have bloods - ugh) at Renal clinic next week so we just had a general catch up with the paediatrician. We checked her PEG, chatted about her general progress, nothing out of the ordinary.
I asked the unanswerable question.
What does the paediatrician estimate Ashlea's life expectancy to be?
The doctor explained that basically the thing that would be most likely to shorten Ashlea's life span would be crappy lungs - and seeing as her lungs are pretty good this was good news. Also Ashlea doesn't have ongoing risk factors for lung problems - she can swallow, has good-ish posture, doesn't aspirate feeds, doesn't have seizures which can cause aspiration etc. Apparently children with really bad lungs sometimes only live to their teens or early twenties. So the paediatrician thought Ashlea would at least live to her twenties. Beyond that she couldn't comment - only because she personally hasn't seen older children / adults progress that far. Maybe once she has had a further 20 years in medicine she personally will have seen ex-prems with multiple medical issues grow through to their 30s and 40s.
The other thing we talked about is Ashlea's general good health at the moment. The paed said that if Ashlea were to become critically ill at the moment (eg and end up in ICU on a ventilator) - she would expect her to recover just like any other child. The only 'what if' would be whether her kidneys could handle it - but they could be supported while she was sick if necessary.
I would prefer to have heard Ashlea's estimated lifespan to be 30's or 40's from the doctor, but I don't for one minute think that she has all the answers! I will also be querying the kidney team and the rehab team - not because I think they have crystal balls, but because statistically I would like to know what sort of ball park to expect.
What is the life expectancy of someone with Ashlea's level of CP?Surely someone keeps statistics about these things???
What is the life expectancy of a child born with renal failure?
Anyway, it was a helpful discussion - even if just because it was good to hear the doctor say how well Ashlea is at the moment and how she would expect her to respond to a serious infection like any other child (I'm sure this would NOT have been her opinion when we first met 3 1/2 years ago).
I'm sorry if this topic is distressing for anyone reading it...especially other parents whose children might have the complications mentioned above. I just feel the need to know what to expect for my child. In some ways it is a ridiculous discussion to have - none of us has control over these things - only God knows the number of our days. And I don't quite know why I now have to KNOW EVERYTHING all of a sudden. After nearly 4 years of not wanting to know I have now gone in the complete opposite direction!
Maybe it is just starting to sink in that this is for real? Or maybe up until now I have been so worried that she might die imminently that I didn't really think about the future? Who knows why, it doesn't really matter why I want to know. I just do.
Stay tuned for the kidney specialist's answer next week...