my name is Sophie Reid and I was born on 10.06.2015 i can in to the world 8 weeks early after my mums waters broke at just 31 weeks but I managed to hold on for another week before i entered the world

i did not scream or cry the room was silent as doctors worked on me so i could breath seconds felt like hours as i was taken not even being able to see my mum for the first time most parents dream of that moment their baby is born when they are place on their chest and feel their babies warm breath but it wasn't like that  it was hours before i first felt my mums touch and what felt like days before she could hold me for the first time

i had to learn everything for the start i had to learn how to swallow suck and breath how to hold my own body temp everything went well and hard a long month i was finally allowed home to be with my mum dad & brothers

once i was home i struggled to feed milk would pour from mouth i wouldn't cry i slept all day and night so my mum took me to the doctors where i was quickly admitted back in to hospital i had lost a lot of weight and wasn't well but the hospital was busy and children was sicker than me so the next day i went home

few weeks later my breathing became slow i was sucking in at the ribs struggling for breath worried i was taken back to the doctors where an ambulance was called for me i was quickly taken in admitted to hospital i need oxygen box and drips i was taken for x ray as my left lung collapsed i tested positive for rsv and need suction as I couldn't breath . this is all i have know feeding tubes tests doctors & pain

i was admitted over and over struggling to breath losing weight but it wasn't till one day i finally gave up i refused to eat that was it . it was all to much back to hospital i went. it was all i knew,i spent more time in hospital than out by this point when i arrived doctors rush around me taking blood forcing glucose in me to try wake me up this was the day my ng tube become apart of me after this day i always had my feeding  tube in no matter how many times i pull it out . i went home with my feeding tube for the first time my mum & dad learnt how to hold me down against my will and force a tube down my nose along my throat and in to my tummy . doctors assumed my swallow was unsafe my mum and dad wasn't sure but all the signs pointed towards it

my mum & dad had brought me a ball pool i remember one of the last times i played in it my body froze and i couldn't move i felt my face drop time stood still as my mum and dad panicked and call my nurse who told them to take me to hospital once their they thought i had a stroke they talked around me looking down at me about putting me to sleep they wanted to see what happened inside my brain the next day the doctors done hand over then ward rounds they came to see my mum but wouldn't listen to her then sent me home telling her to see our GP

so we went to another hospital further away who told us we wasn't in their area to use the a&e as it wasn't an emergency my nurse wasn't happy so a out patient MRI was book

before this happened i was admitted for another reason i was still constantly sleep doctors want to check my blood sugars this where i become accustom to my blood sugar being taken it was here i had my first ever recorded low blood sugar lots of test was done blood was taken from me it took over a week to wean of the drip with out a low blood sugar but once i was better i got my much need MRI

I don't remember much from my MRI other than i was sedated twice in one day first for my MRI then i had an EEG where they wanted to see my brain waves while i was sleeping as they though i was having seizures too. i was luck very lucky my MRI came back normal my EEG had nothing picked up on it they put my seizures down to my blood sugars dropping to low causing me to become extremely ill .

finally after a year of pushing my swallow was tested and came clear just in time for Christmas but everything i ate was vomited i couldn't digest food it made my pains worse so i stopped eating again it was also unsafe with my blood sugars being so fragile

we had tests back and they sadly found i wasn't making enough growth hormone and i need to start injections to help me growth they are horrible ice cold being injected in to my tiny little body i was am a very sick little girl i don't understand much about my life pain is part of my every day i can bend beyond normal because of my hypermobility , i get angry scared and sad like most 2 year old but i also need feeding every 4 hours for up too an hour so i cant play like my friends i also wake in the night i rip my feeding tube out over and over in anger i can also climb my cot and pull my out by accident i don't mean to but everything get to much for me . my mum & dad test my sugars though the day and night every 4 hours before each feed its none stop it wakes me in the night i cry and scream . my mum moved me in to her room in a travel to try stop me from climbing this isn't comfy but keeps me safe

i need to sleep and at angle so milk don't enter my lungs and cause more damage this is so hard in a travel cot my dad used rolled up towels under me to help . please help me be able to sleep like a pincess again i need a special needs cot so i can sleep safely so i cant climb so my mum has easy access to take my blood and attach feeds so i can sleep at an incline so i can relax with out fear please help me

help us  also find a diagnosis at the moment nobody know what my future holds or what will happen as i grow older if i will ever talk or live a normal life at the moment what ever is wrong with me seems to be progressing so please help me find a diagnosis and treatment to stop my daily pain thank you <3

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