Chris from the home care team came today to sign Grandma off on her tube feeding with me - she must have done a good job as she passed with flying colours, this means Grandma can feed me anytime in case I need my bottle feeds topping up.
We headed off into the car up to Liverpool again, and had lunch at Sainsbury's - Daddy takes us to all the fancy restaurants! Here we met some lovely people that Mummy has met online, called Lyn and Tony their little boy was called Harvey, he was an amazingly little boy who had a peroxisomal biogenesis disorder like me. He was so very brave and his mummy and daddy loved him so much. They wanted to share stories about Harvey because they felt it will help Mummy and Daddy understand things about what we are all going through as a family. They were so kind and really made us all feel positive and we really hope we will see them again, they are strong inspirational people. (Editor's comment ; I'm sorry I forget to get a photo guys!!)
|Vogue cover shot?|
We then went for my big photo shoot, the genetics people said they wanted to keep some medical pictures of me on file, just cause I'm so pretty. I didn't bare all, as they weren't prepared to offer me my usual modelling fee!
Finally we got to Dr Morris, the nurse weighed me first according to their scales I'm 9lb 2/4.16kg - thats amazing!! That averages at 65g a day, thats the most I've ever put on (Mummy and Daddy not sure and will wait for Kath to weigh me on Monday to check for definite before getting too excited because some scales are different)
Dr Morris asked us to come into the office and there was a biochemist called Rachel in the room from the hospital labs 'observing'.
|Dr Morris telling me some jokes|
Mummy had requested that I have my adrenal glands checked as has some links to seizures, Dr Morris doesn't seem to think it is a problem but he likes to keep mummy happy. Thank You Karen Smith for the advice, they are going to check it out.
They also said that it is possible to do (big word coming) pregestational diagnosis if Mummy were to get pregnant again, apparently they can also check this out by at the embryo stage - because Mummy and Daddy had IVF treatment they could do this too, but the Human Embryologist Society need to give their permission - this is of course quite controversial but while this might not be relevant now, it gives them some hope for the future.
Dr Morris also introduced us to a lady called Dr Brooks who specialises in 'palliative care' see below*
Mummy doesn't believe we need to have the palliative care conversation as yet as after meeting Harvey's mummy and daddy she wants to be as positive as possible for my sake. She is determined to make sure I don't want for anything and says that she and Daddy will do anything they can to keep me safe and happy.
No matter how many people keep using the term 'lifelimiting condition' when talking about me, she knows they are just preparing her for the worst but it wont change the fact she also wants to enjoy every moment possible with me without having a dark cloud following her.
Palliative care is the active holistic care of patients with advanced progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.