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Our Family Stories

Phoebe Amber



Phoebe Amber Bradley was born 20.7.18 via C-section at 36weeks weighing 4lb. We didn’t know she had Full T18 until 5days after birth when the genetics results came back. There were a lot of problems during pregnancy bleeding early on, low birth weight, polyhydrominos, low pappa, reduced fetal movements, and breach.
 
Phoebe has an ok heart, kidneys are ok at the moment. She suffers from breathing difficulties mainly caused by significant scoliosis in her upper back. She has a baha to help her hear  at a reasonable level, fed by NG tube, but takes a little bit orally. There are other common problems like reflux, constipation, lack of body movements so lots of physio, small mouth and chin etc.
 
Phoebe smiles, laughs, has started to baby talk since having her hearing aid, moves her arms and hands well, starting to move her legs, loves her baby music classes we go to, loves being cuddled, finds it hallarious getting changed, enjoys baths and most of all having raspberries blown on her forehead.
 
We have nearly lost her a number of times, but she is a little fighter and proves everyone wrong. She is now 8months old. She is our little trooper and inspires us everyday to get on and make the most of life. We even got married in 4 days last September as we wanted her there. It was the most perfect day and we will treasure it.
 
 
 
 
 
 
We had her spinal appointment last week and she is due to get a cast to try and help her spine. The doctor said her curve is pretty bad and can’t get much worse. Was a shock to hear it even though we knew it was bad, but at least they have a plan to try and help her.
 
 
 
 
 
 
 
 
 
 
 
 
 
 


Created: 08/04/2019 11:52

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