The changing of the guard

T+24. The changing of the guard as I arrived back in GOSH and Dan returned to the shire. Almost 5 weeks since we arrived at Great Ormond Street to begin the BMT journey. Another week notched up and a new week under way. By the time I arrived back in London the Monday morning routines were complete , NPA done and Herbie was with the teacher, although today he had Danielle, his ‘Friday’ teacher as Helen wasn’t well. Dan and I caught up in Costa (thank you Gay & Colin x) and on the way back in to the hospital saw Catey with the camera and had a brief catch up. How lovely to see my boy again after a few days away, especially looking happy and cheeky. I arrived to find him enjoying a windfall of mail of this sunny Monday!

Thank you Mary & Larry x
Thank you Mary & Larry x

A parcel from America caused great delight, he was particularly thrilled with Batman and announced “How funny that in America they have a doll of me dressed as Batman! It is me isn’t it mummy?”

Thank you Uncle Sam & Auntie Pam
Thank you Uncle Sam & Auntie Pam

A big thank you to Pam & Sam for this amazing pop up book of London. We all love it!

Thank you Maureen & David
Thank you Maureen & David

Lots of lovely stickers from Grandma & Grandpa’s friends, and

Thank you Jo and family
Thank you Jo and family

Daddy can’t wait to get started on the World c sticker book from Auntie Charlie’s friend Jo & her family.

"Look at this one mummy"
“Look at this one mummy”

Gay sent a lovely letter and Moshi cards for Herbie.

Thank you Oliver
Thank you Oliver

brilliant Moshi goodies arrived from Oliver at school, and Ethan used his own pocket money to purchase a gift! How sweet is that! image

Thank you Isobel!  Xxx
Thank you Isobel! Xxx

Isobel sent brilliant Lego figures, two he didn’t have! “She’s very clever” he said

Thanks Mark, Mel, Ethan and  James x
Thanks Mark, Mel, Ethan and James x

The robofish will be a welcome edition to the bath tomorrow!

Bloods were in

HB 96
WCC 1.35
Neutrophils 0.68
Lymphocytes 0.30
Platelets 77

The neutrophils had slipped back again under 1 so despite saying they wouldn’t give GC-SF again he had it tonight!
Engraftment bloods went off again today, we didn’t ever hear about the other that were supposedly taken but results from today should be back in 48 hours!

The kidney function was still a bit skewed so it was another drink frenzy. Sadly we didn’t make target, despite drinking until 10pm bless him whilst we read the new books from Jo Fisher & family and Mary. So a milk feed is up now.
Hoŵever on a positive note the ciclosporin is now oral too so we really only have three iv’s.

He is doing so well, tomorrow is superhero day at school, Herbie will play a part in that hopefully from a distance. Mimi and Papa are visiting and I need to get him to drink almost two litres! Busy busy busy!

Herbie asked again tonight
“When will I get to go outside, I want to as I can’t remember it”

Soon Small, I feel a change on the wind and I think it’s closer than ever.

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