An update as Eloise turns 5!

On Thursday, Eloise turned 5.  Another milestone – and another birthday we are very grateful for.

Yesterday Eloise celebrated it by hosting a party with 20 of her friends.  Eloise was very specific in some of her wishes for her party so it included a paw patrol bouncy castle with a slide (very important apparently), transferable paw patrol tattoos and playing duck, duck, goose. 

Eloise had an absolute blast and asked if we could host another party almost as soon as it was over, as she had enjoyed it so much.  It appears she’s already coming up with ideas for her party next year.

It was a pure delight to see Eloise having such a wonderful time, watching the way her friends play with her so beautifully, and seeing Eloise not only ‘keep up’ but enjoy playing the hostess (with the most-ess).

The party comes after a couple of months of lots of medical assessments, reports and therapy sessions as Eloise prepares to start school in September. Audiology, Ophthalmology, Physiotherapy, Speech and language, Occupational therapy, epilepsy, (we are still awaiting neurology) EHCP reviews, wheelchair service assessments etc etc. 

The reports show a range of things.  More medically-focused appointments remind us of how amazingly she is doing – not just for surviving, but how well she is doing in light of the tumour and the intensive treatment.  She’s a little star and we now have occasional days where ‘people might not notice/realise she has challenges’ (but hidden disabilities come with heaps of other challenges too).  That said, the reports and assessments are also highlighting some of the longer term challenges for Eloise.  Now she’s off treatment and has gained some strength, we have a clearer idea of her ‘baseline’ and therefore the long-term challenges. 

Without going into the ins and outs of it, we’d be really grateful for your prayers.  Eloise doesn’t fit a ‘typical category’ and there are several letters that effectively state ‘XXX is an issue but we can’t explain it with the tests we have available’.  Acquired brain injuries, particularly in developing children, are complex and are on the edge of medical knowledge and science. 

How do we feel:

• Chuffed to see Eloise get stronger and be ‘ready for school’.  We’re even amazed that her teacher used those words to us recently. 
• Proud of Eloise.  Eloise’s tenacity, determination, increasing confidence, being empathetic and being sociable really gets her far.  Another highlight is that Eloise is swimming independently for a few metres!  She absolutely loves (and I mean LOVES) swimming.  It’s an unusual journey – she struggles to run (and walk long distances), but appears to be mastering the art of swimming.  We are so proud of her.
• Grateful that the prophylactic antibiotics seem to be helping Eloise fight infection and prevent some of the neurological consequences of these infections.  She really has been much better since having been on them.
• That said, honestly it’s been a very, very full and challenging few months. On a personal level, Mel has started her own coaching and consultancy practice in an attempt to bring in some income – unfortunately she felt the need to leave the FCDO last year after several years on unpaid leave, as knew it would be impossible to go back and fulfill a role, even part-time. Side note: this has involved Mel studying for a diploma in the evenings and qualifying as a professional coach – which is pretty amazing. So far so good.
  
  That said, trying to fit even a few hours of work in a week around nursery and caring for Eloise (and Anna) has been good but proven much more logistically challenging than hoped due to short days, continual appointments that get booked at last minute or rescheduled, and needing to be off for school holidays.    
• Getting greater clarity of Eloise’s baseline challenges for the longer term is also hard.  Each report or assessment feels like a constant reality check of expectations – and adjusting our (or society’s or other’s) ideas and expectations is hard work.  It involves trying to be positive and not limit Eloise, but also be realistic and put plans in place that enable her to engage fully in life.  It’s being grateful, whilst lamenting what Eloise has to face and what the tumour and its required treatment have stolen from her.  It’s balancing ‘pushing her forward’ and being incredibly intentional to do all the ‘activities’ she needs to keep practicing (for speech and language, physio, OT, short-term memory etc), whilst also trying to just be her parents. It’s an unusual, and at times, quite lonely journey.
• Overall, we are grateful but often tired.

For those that pray:

• Please pray for Eloise’s EHCP.  We are still waiting for this to be finalised and agreed (she has an EHCP in place but we are still struggling to get a confirmation for her school place in September).  She loves Rydes Hill school, has fantastic teachers who really ‘get’ Eloise and draw out the best in her, has some fantastic friends and so we really want her to stay there with the 1-1 support in place.  It’s our expectation that she will, but it’s STILL not confirmed. Please pray this is confirmed really, really quickly and for peace for us as we keep ‘pushing’ and waiting for answers. 
• Give thanks that Eloise is growing in confidence, is tenacious, is caring and loves life.  Give thanks that she has been doing well recently.  Give thanks that she has turned 5 and the miracles that led up to this.  Pray that Eloise continues to grow into a wonderful girl who’s character radiates Jesus and that she has an abundance of life.
• For Eloise’s development and longer-term challenges.  Pray for miraculous healing for her brain.  All (well, very nearly all) of her learning and development challenges are all related to this in some way.
• Pray for continued protection for her shunt, protection from neurological implications of infections and protection from seizures.

Here she is, celebrating turning 5.