Monday, April 15, 2013

16 degrees



16 degrees and a day at RHSC:



 


16 degrees is all it took to make me feel as if I am not doing enough for Eilidh.  16 degrees of plantar flexion at her ankles; gastrocnemius stretches well when the knee is bent or flexed, but soleus, darn soleus, is so tight it could ping! when her knee is extended or straight.
 
So new AFO (ankle-foot-orthosis) it is - purple ones this time with butterflies and flowers; Eilidh is delighted so why is it that I don't feel that I am doing enough for her?  Because there isn't enough time in the day and her physiotherapy is one of the first things to suffer, leaving it up to nursery to do the necessary stretches on a daily basis, where they don't stretch her enough because she doesn't enjoy it if they do, where they don't understand the implications of not stretching her...  I don't know how I can make more time in my day and with E starting school this year it means that much more of the physiotherapy will have to be done at home, in the time that we, as a family, don't have.  It just makes me feel like such a rubbish mummy, trying to juggle work and home and the needs of my two gorgeous girls, one who happens to have additional needs.  And it makes me sad that I cannot do more to help her: I need more time in my day. - why is this not possible?

Same day, different department...  From orthotics we went on to see the respiratory physiotherapist as E has struggled a little more with her cough this past month, unable to expectorate or "cough-up" her phlegm (yuck!).  After a course of antibiotics she's better but still struggling in the morning, despite her blowing bubbles... 






We talked through how Eilidh has been and the physiotherapist listened to her chest, "all sounds good with lots of air entry".  I nodded in response, saying to myself "I know, I've listened already".  I felt a little silly for requesting the appointment, it was obvious she was on the mend but the reason why I was there was not that she needed treatment now but rather that we want to be better informed for the future; we want to know what to do when she's unwell.  Our community physiotherapist referred us some time ago because she felt we needed additional input and it took me phoning Dr Neuron directly to get an appointment.  We want to be proactive, not reactive and this is why; this is the SMA that scares me: a child struggling to breath and needing admitted and ventilated, spending nights in this hospital with other scared parents, hoping and praying that their little one is going to be ok.  I need to be armed with the knowledge and skills to prevent this from happening - if I need to do anything, this is what I need to do... I cannot be the parent in the hospital watching as the ventilator works.  I cannot be the parent in this hospital hoping and praying...

So, respiratory physiotherapist, do you see now?  Do you understand why I was there with my little girl with SMA?  Please don't make me feel as if I have wasted your time; this is very important to me because I am scared of losing my precious daughter too soon...







 

2 comments:

Midlife Singlemum said...

So difficult. Why can't we just explain to the doctors why we needed to see them, about our fears? We don't though, we just sit there and let them assume we are hysterical mothers who just need a bit of reassurance. Why do we do that? Lots of love and good luck with finding the time for the physio. xxx

Mrs K said...

Right... Firstly you are not a rubbish mummy, you juggle so many things the cat in the Hat would be shamed! And the Physiotherapist will surely know that you are a mummy who wants to empower herself with all things she can to ensure you gorgeous lady is safe.... After all "unless someone like you cares a whole awful lot, nothing is going to get better, its not." And, 3 years on this bad mummy still has not done enough physio with The Superhero to get his legs flat when lying or to stand up from sitting properly. X