A thoroughly enjoyable day...

Hi there everyone,

Hope you are all well and enjoyed your day.

We have had a great day here at the hospital; it’s been full of really positive progress mainly by the fact that Phoebe has walked the entire length of the ward corridor..which I have to say is a fairly long one too!

May have to start bulk buying on the old cranberry sauce and fresh sliced turkey though, the steroids are making Phoebe eat like a horse and she is asking for food constantly which started from about 5.45am this morning until now at 9.21pm when she’s just requested yet another cheesy oatcake...maybe Phoebe should be the new face for a regional Oatcake campaign bless her! Cheryl our new friend on the ward has been here with her daughter Emma and was very taken with her first taste of oatcakes...so glad you enjoyed them!! Emma has now gone home for a couple of weeks break so go enjoy yourselves and we’ll see you soon xx

Phoebe has been in a great mood today and even passed a kiss to me for our Consultant Rob when he joined us for his ward round...he felt very honoured and even had a little blush. The doctors bless them, suffer rather a lot of rejection, not usually getting a great reception from the kids just in case it means they have to have something done, pleased they never take it to heart...its a good job really!!

Here on ward 84, we have a classroom and our music therapist Becky was here today. Phoebe wasn’t too keen to go and spend some time there but after we sat down and had some gentle songs she slowly warmed up, it was so lovely and we really enjoyed it, erm... well maybe I enjoyed it a little more than Phoebe!!

After lunch, Phoebe was due to see the physiotherapists, again she wasn’t very keen initially but after a little while and some skilled diversions from the team, finally she began interacting albeit very reluctantly at first, maybe it will be better tomorrow with a better nights sleep!! One of the things we have noticed and may have mentioned a couple of nights ago is that we don’t make a great fuss about her walking now and it seems to be working, she is slowly gaining her confidence and walked a little on her own today. Can you imagine though after I had promised so many times that I wouldn’t let her fall, she slipped and had a bump, she was totally beside herself, just couldn’t manage to reach her in time...devastated wasn’t the word but after a few moments and a little talk and being profoundly apologetic she forgave me and forgot about it, bless her...typical Phoebe, just bounces back. It makes me truly humbled to be her Mum.

After the physio session, we received a call to say that the cardiology department had an appointment for Phoebe to have an Echocardiogram, which is routine procedure before transplant. It has been noted before that Phoebe has a slight heart murmur but today they picked up on the fact that she has a very slight hole in one of the walls of an artery, our lovely sonographer Gail just wanted to get a second opinion and called in a cardiologist. He explained that this is something that should seal over in time given her age and should not be any real cause for concern as there would be no surgical intervention for this and would be happy that she came for a routine annual check. Ade and I didn’t expect to be so long as our time out of the ward was booked for physio only, Phoebe just couldn’t last any longer without food and Ade ran up to the ward to make a...yes you guessed it, a turkey and cranberry sandwich, he actually brought it down to the clinic as it was gone 5pm and the delight on her face was a complete picture, oh the simple things in life.

We finally returned to the ward and Phoebe was so tired but decided to join us in the family room for some dinner and promptly started tucking into some spaghetti bolognaise and broccoli which I had collected from the restaurant on our way back. It is so good to see her eating as at some point it may be the opposite, so we enjoy it while we can.

Rob called us into his office this afternoon for a chat, something that I find very difficult as it’s a time when we have to listen and come to terms with what’s happening. Rob is certain in his diagnosis that Phoebe has HLH in the brain and even though this is so very rarely seen, he remains confident with his team in the plan chosen whilst continuing to gather well respected opinions from around the world. He is always very honest with us even when the news he needs to deliver is difficult, Rob has an incredible way of reassuring us and shows he is determined to do the best he can for us as a family. We feel in very safe hands here.

Thanks for your emails, calls and texts guys. Hi Owen and thanks very much for your question you typed yourself..and well done too, it made me smile...’Is Phoebe Ok or not’...In answer to your question Charlie Farley (my nickname for Owen), she is doing just great and it won’t be very long before we can go out and have a lovely day together and finish with a pizza for dinner...would you like that?

Phoebe sends a big kiss to Great Granddad Ed who has shingles at the moment, Ed we hope you are ok and look forward to seeing you very soon xxxx

Big Birthday Wishes to Phoebe’s friend Charlotte who has celebrated her 3^rd birthday, hope you had a lovely time on Sunday. So sorry we couldn’t be with you but will see you very soon. Keep a look out in the post xxx

Special mention to our friend Cheryl and Emma, its quiet here now...sorry we didn’t manage to catch you earlier to say goodbye for now but will no doubt speak to you in the next few days xxx

A big hello to everyone at the Tollgate who have been so kind in their support with Phoebe, I’m sure it’s much quieter there but rest assured she’ll be back soon behind the bar sorting everyone out!!! Thanks guys for your constant love and support.

Hello to everyone at the www.themotherhood.com website who are following the blog, thanks Deborah for joining us and it’s lovely to read your messages.

Hi to Den in the US...you are a constant source of strength and humour...we look very much to catching up again soon...how’s the secret cleaning going? You are funny!!

And to all our Bloggers, friends and family, a huge hello, you are all amazing, thanks for sending all lovely messages of support. God Bless xxxxx

Night for now...Rest Easy xxx

Lynn, Ade, Phoebe and Spirit Eleanor xxxx