Healthy Hip Week 2015 and moving forward.

The treatment was challenging, both for Erin and us as a family.  There are financial implications when you suddenly take a year off work. There are emotional costs when siblings see what their baby sister is enduring. There are many many tears when you keep having to take your littlest to theatre,

Every

Six

Weeks

However we rode the storm, we wore the badge of spica, she has scars that tell a tale. And now…..

Nearly three years later we smile.  Erin is such a trooper and she is blossoming. Many regular readers will know I worried oh so much about her starting school. I wasn’t ready to let her go and I worried how she would fare.  But this girl well, she knows no bounds.  She is simply excelling.

Erin is bright, like really bright. She reads and she only needs to be shown something once. Parents evening tonight was enough to reduce me to tears.  My girl who was stuck in spica learnt so many other skills during that time. She learnt patience, she developed her fine motor skills and she completed puzzles and spent hours colouring and watching Mr tumble. What this did was fire up her potential to learn.  We talked more, we used her other senses when her legs were not ready to walk. Now I can see that a reduced mobility meant we focussed on other parts of her development. I worried that too much Mr tumble was not good enough for her when we are told to limit screen time.  The apps we played on an iPad passed the time of day but we’re they harming her development. It seems not. Erin is  top of the class in everything according to her teacher.

Erin is still in bed by 6.30 / 6.45 week nights as she gets so very tired.  Her little ankles are supported by insoles because they are still too bendy and weak. The hypermobility makes her body work harder.  The hip is looking good but for how long is still anyone’s guess. Yearly X-rays will tell us more but the thoughts are there will be further surgery at some point. Late diagnosis does that you see it complicates everything and makes makes the journey longer harder, more unpredictable.

Not only is Erin excelling at school but in September she started dancing.  I checked with her surgeon who said it would be good for Erin and especially for her core muscles. She wants to be like her big sister who is a beautiful and graceful dancer.  Erin’s dance teacher saw Erin in spica and knew what she has faced and took her on with my whispering in her ear that she wouldn’t be like Chloe! What I didn’t realise is that Erin’s flexibility means that she has beautiful turnouts. Her feet go into wonderful positions for ballet! At the end of the month Erin will take to the stage alongside her sister.  She will dance on a stage both in ballet and to dances and I will probably sit in the audience and sob. Not only will I be there but do will her dad, her siblings and grandparents.  All of us will have our private thoughts but I know all of us will find it emotional, as I m not being dramatic when I say there were times we ever wondered if she would walk.

Ddh is spiteful, it stole from Erin and it stole from me. I will forever be angry that she never had the chance to be fixed by a pavlik harness before undergoing theatre. I will forever be cross that she was let down by the newborn health screening programme. However I will always be grateful for th support we received from Steps and from family and friends that held my hand when I cried.  For those that took Dylan to school for me, for those mums that chatted to me at mother and baby groups, for those nurses and her surgeon that stood by us through treatment. For those I am grateful.

This week is healthy hip week and I want to tell all those just starting the journey that the sky is the limit and that although it might be horrid and scary right now and the future may be uncertain your child will be developing other skills whilst in spica and after spica who knows you may just be at a ballet show in a few years time.