Well we had a visit from all 3 today,separate appointment.
The Nursery Nurse first advising on safe play. Also stimulative play. Poor little lady has never played so much in 1 day, daisy is finally played out!. The Physio and OT watched Daisy's movement, we have met the physio before, shes lovely and shows me ways to developed Daisy's muscle strength,Daisy doesn't roll, sit,or do much really. She smiles and she smiles big!, basically Daisy kicks her legs,but i think this is due to being in hospital alot?!. We'll get there in the end!!..x
Daisy was born with a rare genetic Birth Defect. Adams Oliver Syndrome. As a mum, I share our lives in this blog. Thanks for your support.
Hello all, Daisy trip to GOSH was an extremely good one. The specialist in feet/hand Plastic, is happy with her tiny hands,he say "Yes there small, and yes people may notice,she will not play the piano, but, they will not be an massive issue in her life."
As for the feet,hmm well they may be problems with shoes/socks etc, we already know this,hence please donate to help raise for shoes to be made for Daisy. They will review in a years times, to monitor. At this stage no operation is planned. Apparently the odd nail totally falling off is fine, so that's good as we did experience this. Now i can start concentrating on my housing issues,and where our Daisy will sleep, its starting to get a little cramp in our bedroom!
As for the feet,hmm well they may be problems with shoes/socks etc, we already know this,hence please donate to help raise for shoes to be made for Daisy. They will review in a years times, to monitor. At this stage no operation is planned. Apparently the odd nail totally falling off is fine, so that's good as we did experience this. Now i can start concentrating on my housing issues,and where our Daisy will sleep, its starting to get a little cramp in our bedroom!
Feet and hands - appointment
hi, we have GOSH again tomorrow for feet and hands, this is our first appointment so we are keen to find out there views on Daisys mobility,just hope she will be able to walk, im sure with the big toe being there it should be fine.
16/11/10 Appointments updates
DERMOTOLOGY-Last week Daisy had the dermatologists at GOSH Great Ormond Street, the appointment went well, and they are pleased with the healing(Skin) that is continuing on Daisys head. We have been given Bactroban cream to apply. This is for Strep,Staph and E'coli. As Daisys head swabs have shown course to use cream. Still on Flucloxacillin(2x Daily)They referred us to Addenbrooke's Hospital for Genetic testing. I imaging the day I have to sit Daisy down and tell her the risks of her children having AOS, that's the easy bit, but to explain we don't know how this will effect her children- IE-missing limbs/Heart/kidney defect/Skull/Skin, each AOS child stain is completely different,this is the hard bit,i feel.
PEADIATRICION-Had appointment today at NNUH (Norfolk and Norwich Hospital) Doc is also pleased with Daisy. Daisy didn't tick all the 'normal' boxes for physical development IE-sitting,rolling,laughing, so going to review in few months. Physiotherapist and Occupational Therapist is due 30th November, also Nursery Nurse to advice on alternative play IE-safe soft toys,sensory play-lights/touch/hear etc, so that should be fun for the little Dotty Daisy.
PEADIATRICION-Had appointment today at NNUH (Norfolk and Norwich Hospital) Doc is also pleased with Daisy. Daisy didn't tick all the 'normal' boxes for physical development IE-sitting,rolling,laughing, so going to review in few months. Physiotherapist and Occupational Therapist is due 30th November, also Nursery Nurse to advice on alternative play IE-safe soft toys,sensory play-lights/touch/hear etc, so that should be fun for the little Dotty Daisy.
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