Skyla's quilt    (Quilt currently being assembled)

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Mixture - JUST DINOSAURS NOW PLEASE

Biography

Skyla Mae was my little lockdown baby. She was born 3 weeks early via c section and came into the world just perfect!

Skyla had difficulties breathing and swallowing milk in her first few weeks but we were told it was a floppy larynx and that she would outgrow it. With it being lockdown no drs questioned anything else. Weeks passed and Skyla`s breathing “became the norm” and being a first time mum I didn’t know any better. Weeks turned into months and my little “Huxley” would hardly sleep and when she was asleep it was like the whole room was vibrating with her snores and gasps.

Skyla`s head started to grow at an abnormal rate and her forehead was protruding, so my new GP was amazing and got us sent straight to hospital. After lots of testing it came down to genetics and it was confirmed Skyla has Crouzon Syndrome.

When Skyla was weaning off her milk and trying solids she started to choke on foods. After a videofluoroscopy she was diagnosed with an unsafe swallow and was admitted straight away. A feeding tube was inserted and no more food was allowed orally, just special milk. It broke me but little did I know this was just the beginning.

With Skyla`s diagnosis we started to be seen at Great Ormond Street Hospital. In the space of 4 years she had tonsils and adenoids taken out, an NPA prong inserted to help her breathe, brain surgery when we found she had pressure building up in her head, and her hearing has deteriorated. Hearing aids didn’t work out for her so grommets have been inserted now for a second time. Her eyesight has also slightly deteriorated so she has a cute pair of glasses now too.

Skyla still has an unsafe swallow but only for fluids so all liquids must be thickened but she now doesn’t have her feeding tube any more. Her breathing is still the biggest struggle as the NPA brought so much trauma when having to change it monthly, it had to be taken out and she was then put on CPAP which didn’t work. She has been on BIPAP for over a year but Skyla isn’t tolerating the mask so we now may have to think about mid face surgery or a tracheostomy.

Such scary, uncertain times but she is the strongest little girl I know (which is how we all feel as parents!) The children are something special. Skyla is kind, loving, sensitive and happy, loves to sing and dance and put on shows for her family. She’s currently into dinosaurs, unicorns and Sylvanians. Her happy place is being outside and she’s looking forward to her “beach side" holiday in the summer.

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Stitched by: Anne Berg Gjolberg