Sophia is child 6, born on time but within 2 days she became poorly. She was full of blisters from an infection and 2 weeks after the antibiotics the blisters came back. She had more antibiotics but when I finally got her home Sophia refused to take her milk. She would scream for a feed but as soon as she started to take the bottle she would scream, refuse, turn her head and arch her back. Three months in she was not gaining weight, I was so depressed where no one was listening to me and my baby was struggling to feed. Being baby 6 I knew something was not right so in the end I took her to A&E. We were referred to the child unit and tests showed severe reflux and we were given medication. At this point she was scared of the bottle, the minute she saw a bottle she cried. The doctor said it was because she knew the bottle meant pain. We eventually got her used to her bottle but I could never feed her in my arms, I had to prop a bottle up and watch her feed.
She still didn't gain weight and wasn't growing and at 4 months old she was rushed into hospital. We were told they didn’t know what was the matter but she was critical. My heart sank, they did loads of tests showing she had another bacteria infection. They told me she may not make it but she did. She was tube fed for a while but she still wasn't gaining much weight or growing so her consultant decided to do a gentetic test which showed 15q11.2 microdeletion. This can cause growth problems and lots of other problems like asd, adhd, hypomobility, epilepsy, anxiety, learning difficulties, development delay and lots of other stuff. We were also told she had a low immune system and iron deficiency .
As Sophia has grown she is behind in her development and has physio for hypomobility and low muscle tone. She has is medicated every day for her iron. Sophia does not like to sleep, she never sleeps and has very challenging behaviour. She is currently under investigation for autism but she's a lovely girl and I wouldn’t change her for the world. She benefits from sensory stuff, it helps her to stay calm and relaxes her.
If any viruses are going about Sophia will catch them 10x worse and takes much longer to recover.
Sophia is not able to walk very far as she is in constant pain with her legs so she is in a pushchair. Her consultant said the reason why she doesn't sleep much is due to the pain from her muscles. Sophia also has very bad eczema and asthma. I call my little girl my fighter as all she ever does is fight the world, she never gives up despite having her needs.