Daisy Update

Daisy was born apparently healthy and thrived up until she was 3 months old. We had some concerns about her hands as she kept them in firsts but she was due to see a physiotherapist to establish if there was any issues.  Before we made that appointment Daisy became unwell with a cold and stopped feeding.  After a quick check up at the gp we were rushed to Maidstone hospital and then to Pembury where she remained for 3 weeks. From there we were taken to the Royal Brompton in London where we remained for 9 months. 
 
During her stay it was established Daisy had a very serious congenital condition that effected her breathing, muscles and bones.
 She was fitted with a tracheotomy and is ventilator dependent 24/7.
 
From the Royal Brompton we spent a fantastic 2 months at the Children’s Trust in Tadworth for step down – this was to establish ourselves in the day to day life with a child with complex needs. 
picture of Daisy as a baby
From the Royal Brompton we spent a fantastic 2 months at the Children’s Trust in Tadworth for step down – this was to establish ourselves in the day to day life with a child with complex needs. 
 
Daisy is now nearly 5 and truly thriving with a character and determination that shocks many professionals when they meet her after seeing her disabilities on paper.  Since being home she has been diagnosed with a rare genetic channelopathy than causes severe seizures that have landed us in Great Ormond Street a few times, this isn’t our diagnosis but does account for a number of issues she has. 
 
She is able to take independent steps – something we were told would likely never happen, she gets around the house on her bottom and even climbs onto the sofa!  She eats and drinks orally for snacks – again, something we were told she would never do.  She is dependent on a feeding peg for the majority of her nutrition but it’s something that we can aim for when she is big enough to trial without. 
We have been blessed to have had the support from the Provence on may occasions as well as local Masonic lodges and also the Masonic charitable foundation. 
 
The first item we received was seat that enabled Daisy to join us at the table for meal times and play, we also received an Upsee Walker harness which we truly believe gave Daisy the motivation to want to walk – you could see her processing that one foot goes in front of the other.  Also a suction unit that allowed us to take daisy out in her pushchair and give life saving airway clearance, these devices from the NHS are big and bulky and as quoted ‘the CCG do not provide portable equipment’ so these items are ideal for home life but not outdoors. 
 
The MCF funded a massive project to transform the front of our home to allow us to get daisy in and out safely.  The lift installer was the largest this company has done in a residential property so that shows how big of a project this was.  Not only did we receive funding for an agreed amount but also additional funding when we ran into trouble with structural engineers reports.  I hear you are a not too distant neighbour so you may have driven past our home and seen our impressive lift! 
picture of Daisy on a swing
So I have attached some images of Daisy, (see above) sometimes at her best and what she can do now and also at the beginning of our journey when we were unsure of her future.  
To say she has taught us a few lessons in life is an understatement and it certainly makes us appreciate the good things in life!