23 May 2011

Blood tests

Daisy receive her blood test from GOSH, her haemoglobin is the higher end of normal, but i think its better for her than to be low... so im happy...alls ok x

Blood tests

16 May 2011

Genetic Clue to Common Birth Defects Found

Genetic Clue to Common Birth Defects Found

14 May 2011

11 May 2011

Jabs and GOSH
Daisy had her 3 last jabs yesterday, well that's it until shes 3 years. she screamed , i don't blame her!!
Well today at 12 O'clock we leave for another visit to Great Ormond Street. We are seeing the dermatologist specialist. They are going to be so impressed with Daisys progress. Where the skin has healed it keeps re-opening as its VERY thin, i will ask advice on tips to strengthen this. Also I'm going to get them to look at Daisys toe, its gone weird, and the nail has fallen off again, a skin doc is better than no doc, so I'll see what they think about it. What a long day it will be. Good old Dad , he'll bring the Sukey sweets for the car.....werthers,like they used to be..... 

9 May 2011

Social Worker is due tomorrow.............................. uttt...oooo
Adams-Oliver syndrome: How is it diagnosed? Contact a Family - for families with disabled children

3 May 2011

Whilst I sat on the toilet with Daisy on my lap,I got thinking ....... its a shame i have to carrier her straight after the toilet act, as my sink is in the bathroom. all them germs arnt good for any child. I do have a stair gate but i wouldn't trust it at the top of my stairs (its a material one, the only one i could find)...i must buy a new 1, that's more secure. but of course it cant be a barred one, and even with that, Therese still danger, as the upstairs hall is small, and the door frames are in daisy direct reach wherever you put her. ie- sitting reach and crawling reach. The play pen is crap, or my making it safe is crap, so there we sat.....on the toilet Daisy and I, its a regular thing when marks at work and the kids at school...but Ive not felt the need to share it before now....

Waiting...Still waiting...
Finally I had an response from the occupational therapist team, about the re-assessment for house adaptations, and the disabled facility grant.
I may be a day out but by my records the OT visited us on the 7th of April. I was on the understanding that a report of her NO decision would be written up and we would have to both sign and read together, I was told within 2 weeks...........
the date today is 3rd of May!!
Waiting....Still Waiting....
still no report............Left another message today,because she wasn't at her desk, apparently these messages get email to her, I've ask for the report to be sent out. I rang at least 13 times now, and its not even a free number. STILL waiting......................