Evie’s Everest Update

It’s been a while since the last post as we’ve been extremely busy with Evie’s therapy, doing two extra sessions every week with a new physio on top of our regular activities.

Sadly, Rachel’s mum also passed away late last year, leaving behind Rachel’s dad Neville – husband of 40 years. Myra (pictured) was a fantastic Grandmother to Evie and will be greatly missed by all.

However, the funds raised last year have been keeping everything going for Evie’s Everest and we are planning more intensive therapy over the course of the year, so thanks again for the continued support from all the kind and generous people in our lives.

We have found a number of charitable organisations who are helping us, in addition to private funding. There are many costly services out there for disabled children that the NHS do not fund, so we take time to decide which are going to provide the most benefit for Evie, using funds raised as wisely as possible (details of Evie’s therapy current programme below).

Evie is doing well, she has learned a number of new signs now (e.g. home, biscuit, driving, wash etc…) and has a handful of words now too which is encouraging (more, mummy, daddy, and Jam to name the most important ones!) although doesn’t use them consistently yet. She does love her food!!

She also keeps growing – so continually needs to re-adjust to her new height/size again, and needs on-going core strength training to help her engage the muscles needed to walk, and grow her confidence to support herself. She also has specialist shoes and in soles to provide support for her hyper-mobile (overly flexible) ankle joints.

We have also had a trike adapted for Evie under the re-map charity, they have a number of engineers who try and solve problems for the disabled with practical solutions to adapt the home and make life easier for those who need help. It’s a great organisation and by making some minor adjustments, Evie now loves here trike, we take her for walks in roundhay park regularly on this which we all enjoy. http://www.remapleedsbradford.org.uk/

Latest on Evie’s diagnosis: we still do not have a specific diagnosis (reason for Evie’s white matter brain abnormality) so continue to have no real prognosis for Evie’s future. However, we are now in the 100,000 genome test where they sequence Evie and both parent’s full genomes with others with rare conditions in the hope they can find patterns / generate diagnosis for undiagnosed conditions in the future.

However, as Evie gets older, her learning disabilities become more apparent as other children around her develop. This is probably the hardest thing for us, as parents to get our head round and accept – why Evie? Professionals and supporters who see Evie always encourage us that given her neuro-developmental challenges she is doing really well and continuing to develop, which helps to motivate us.

She is in the main a happy little girl but one who faces significant challenges/frustrations both now and in the future. With support and daily therapy we are confident both her cognitive skills and her mobility will improve and our aim is of course for Evie to walk independently and be able to talk to us.

We want to thank all Evie’s supporters for their generosity – and with particular thanks:

£628 – fundraised monies from an anonymous donator via ‘tree of hope’ and a further £250 from an anonymous donator – we are touched that people we don’t know are helping our daughter.

A number of Christmas donations also came in after our last blog –

The Simpson family, friends from the U.S.A

Cake Bake/Christmas donations from YBSG – Vicky Brennan, Sean Kenefick, Richard Taylor, Duncan Milne, Dan Topley, Dan Buck, Caroline Brannan, Louise Fox, Janice Barber, Vicky Brennan, Chris P-Haim, Christina Bailey.

Upcoming fundraising events – Woodlands Nursery are holding a dress up fundraising day next Friday, and Lee Steer is planning to do a long distance run later this year. I am also considering doing a 100 mile cycle – however, we welcome all ideas for 2017!

Evie’s Current Programme:

Local weekly neuro-physio – Liat is fantastic with Evie. She puts together obstacle courses both in the gym and in the water, building strength and prompting communications through activities.

SNAPS (Special Needs and Parents Support), a charity that supports local families of those with children with additional needs – a big part of our support network and weekly hydro therapy (for just £7 each week!). https://snapsyorkshire.org/about/

Donkey Sanctuary – (free) weekly donkey riding programme which promote core strength and simulate the movements required for walking. RDA – regular horse riding, which we have just started, 1st few sessions have been tearful but we are hoping she gets into it like she has the donkeys!

Brainwave North West – we have just taken Evie to two days intensive assessment, therapy, and action planning for us to follow over the year. This consisted of speech and language therapy and physio, Carol and Felicity were excellent and we plan to follow up again in 6 months’ time.

This is all on top of both Woodlands nursery and our daily focus on Evie’s developmental support needs.

Top priorities at the moment are:

  • Promoting core strength / training
  • Developing Evie’s attention and understanding (to minimise frustration and aid future communication)
  • Developing communications strategies/systems – using signing, symbols and re-enforcing known words
  • Looking into specialist and mainstream schools / what forms we need to complete now (Education, Health etc..)
  • As Evie is growing fast, we are looking at some minor house adaptions to help her mobility around the house (and our backs)

 

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