BiographyOur Miss Layla Jane unlike most has a roughy start to her lifes journey, my sister and brother inlaw completed all the medical genetics testing as our girl was a beautiful rainbow baby all coming back clear and normal,She wasn’t growing and issues started occurring while inside being closely monitored and specialist not knowing what was going on, Feb 23 our girl arrived with the physical symptoms becoming to light and more testing to follow spend the first 5 weeks in NICU.
The first 6months she had appts in QCH 3 times a week living 1.5 away from the hospital taking a toll mentally and physically, now that all the medical diagnoses have been decovered;
- Pierre robin sequence
- Soft Cleft palate (hole in mouth) - also resulting in hearing loss and needing a aid
-Atrial and septal defects in her heart (holes in heart)
-Laryngomalcia had surgery at 4 months to help with the airway opening.
All this causing a few developmental delays which she seems to battle through with a smile most days, being tube feed since day dot the constant appts from all back and forth to Drs and allied health staff she is still her happy and gorgeous self despite all that she has been through this year during her treatment.
2024 is going to a big yr for her under going major surgery early in 2024 to close the hole in the cleft soft plate with her having to stay in splints with her arms so she doesn’t pick at the closure and also the surgery to repair the holes in her heart ?? ?
Full of smiles and loving being around her family, friends and her big fur brother buck a 65kg Malamute we all love and support each battle she goes through as she give give me ment to be here with us. Everyone’s got a path, unfortunately hers has a few hurdles she has overcome.
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