A much overdue update

On Saturday Eloise turned 7! She/we celebrated it with a disco dance party (her request) because she loves to party, sing and dance. 

Overall, Eloise continues to do well and works incredibly hard to make steady progress on many fronts – physically, academically and socially. It has also been a tremendous joy to see Eloise get taller and start to outgrow her school shoes before the school year has finished.

But the last year has been pretty demanding too.  Anna’s unplanned school change at the start of the year, which resulted in the girls being unexpectedly (and unwantedly) separated, has been more upsetting and harder than we anticipated on many accounts. Mel has wonderfully won and taken on more work – which has been great, but at times difficult to juggle with complicated school logistics and when unexpected things happen.

Eloise’s health has generally been a lot better this year from an infection point of view, but things continue to regularly surprise us – unexpected ‘new issues’, unexpected results, and some issues continue to be unexplained.  As Eloise gets older, we are conscious to not include all the details of this in this blog, but would value prayers for continued healing. She continues to be seen by a range of specialists across different areas, including ophthalmologists, epilepsy specialists, neurosurgeons (for shunt), endocrinologists, speech and language therapists, physiotherapists, orthotics specialists, and neuropsychologists, plus more.

One great thing that’s happened over the past year is that a certain pony, Freckles, has become more central to our lives.  Freckles is a pony at the Horsley, Bookham, and Leatherhead RDA (where Eloise has lessons) and both girls now have him as a horse share on Saturdays.  Freckles is a time commitment and comes with lots of jobs but has brought many of the happiest moments to the girls’ lives over the past few months. This is particularly true for Anna who has needed an extra dose of joy.  Eloise was also very honoured when she was asked to represent her RDA group and ride at the Royal Windsor Horse Show last month. Anna wrote a blog and put together a video of the very special and memorable day for the RDA’s website, which you can see here.

Over the next few weeks Eloise is due to have her MRI and tomorrow she is going to do a ‘trial simulation’ at St George’s to see if she can do the scan without a general anaesthetic.  This may well be tricky but Eloise is willing to give it a go!

For those that pray:

• Give thanks that Eloise is full of life and fun.  She is such a joy to be around, continues to make friends anywhere and doesn’t want to let life pass her by!  She embraces life and lives up to her name.
• Pray for Eloise’s healing.  For any damage that’s been done to be healed.
• For Eloise schooling and learning.  For energy and strength as we continue to navigate EHCP processes and ensure support is in place for Eloise.  Eloise’s school are being fantastic, but the system is utterly broken.  If you know other parents of children with complex needs (medical, learning and/or other), do reach out to them.  The stamina needed to keep caring, supporting and advocating for your kids is hard and the admin list is genuinely endless!
• For Eloise’s upcoming MRI – after some more ‘unexpected’ results recently we’d be grateful for no surprises or ambiguity.
• For us all to have peace and joy over the summer period.

Thank you to you all for your love, kindness and for many of you reaching out and asking how Eloise is doing.  We are grateful for the army of warriors that have stood with us over the years, and continue to do so. 

Eloise at her party

Freckles!