Our Brave Warrior..

Hi there fellow Bloggers!!!

Thanks again for joining us, it’s pretty late tonight as I start to write but just wanted to make sure we keep you lovely people out there updated on Phoebes progress.

Today has been one of our best days since arriving at Manchester. Phoebe has improved with no visual disturbances today and managed to spend a couple of hours in the play room. She has managed to play for a little while and then clearly said that she needs to rest. It’s been great to see Phoebe taking small steps, her balance is slowly returning along with the confidence to stand by herself.

Already we are seeing huge differences in our experiences of hospital stays and this time it’s profoundly different because Phoebe can describe how she is feeling. We are also seeing a new...shall we say.... assertive side to Phoebe as she has started to instruct us on how she would like her lunch presented and which DVD to play...mainly Peppa Pig. This is largely exaggerated by a wonderful medicine called Dexamethasone which has some interesting effects being ...assertiveness and an increase in appetite..mainly cheese, grated and eaten from a cup with a spoon!!! Bless her!!

Phoebe has been phenomenal taking her medicines and I am trying to teach her my concept of ‘not letting things have a control of you but to tackle them head on and they don’t seem that bad after’ which is proving fruitful as she is coping much better taking them now. She is holding her drink and deciding to put the straw in when she is ready to take the taste away. She has so little control over anything that is happening to her right now, one of the best things I can do is to empower her to take some control over her meds.

We have a busy day tomorrow as Rob has arranged for a Hickman line to be fitted again under general anaesthetic. Just need to confirm if we are starting further immunosuppressant treatment immediately or waiting for further info from the donor. We will press on with her steroids, antibiotics and other meds and wait to hear from the team for the next stage in the plan.

Rob has made plenty of visits to see us in the ward and it has been nice to update him today with good progress. Still being mindful that we are in very early days and this will be a long journey, it’s these days that we grab onto with gusto and look forward to the next hour with slightly less apprehension, it’s like being on a constant rollercoaster.

Thanks so much again for all your incredible messages of support, it means so much. We have the troops coming each day which helps us as it gives us a chance to grab a bite to eat, cuppa or a shower and I’m still loving the starchy towels...oh the strange yet simple pleasures in life!!

Thanks to all our family and friends who have made the trip up to see us and I know we will probably be seeing lots more the next few weeks, it means so much and provides us with a small sense of normality which is vital here. Being able to communicate through the blog, emails and texts really helps us and I know Ade is also receiving lots of messages through the Stoke City Forum, so a special thanks to you guys, it’s very much appreciated and I know Ade will be looking forward to returning to the Brit as soon as possible.

Thanks to all the team for the wonderful care we are receiving here and thanks to our teams in Stoke and our girls at The Donna Louise Trust who continue to support us as a family. Bless you.

So for now folks, we bid you goodnight and after I publish this blog and close down, I will reach across to Phoebe and give her a gentle kiss from all of you xxxx

Rest easy dear friends xxx

Much love

Lynn, Ade, Phoebe and Spirit Eleanor xxxx