There’s always someone…

T+49 Friday was here! However I wasn’t heading home today so it wasn’t quite as exciting as usual. Herbie didn’t wake until 9.30pm and right from the word go, even in our filtered, air conditioned room it was humid. Outside the window stretched blue skies filled with wispy vapour trails from planes taking people to far off places. We however were staying put…again! Herbie was in a sunny mood that matched the glorious weather and eating and drinking well too. His smile got just a little wider as he noticed a nurse passing the window of his room. “Mummy I think I saw Amy the nurse out there” Herbie LOVES Amy, he hasn’t had her as his nurse for a long time and she had been on annual leave for 3 weeks but today she was back and even better, she was Herbie’s nurse! He was so happy to see her, although like Hayley, Amy was surprised to see us! At 11am Julia, one of the GOSH volunteers , arrived to ‘play Moshi’s ‘ with Herbie. He loves his sessions with Julia. They spend an hour or two each week looking through the Moshi directories (Herbie has 3 different ones!) and sorting Moshi’s. image I left him in his element and headed out into the humid metropolis. Everywhere I looked I saw happy faces, people sitting outside cafés and pubs and restaurants and laying on rugs in the park. Seems the sunny disposition was not just Herbie’s today. It does hit you at these times though that your life is on hold, in a bubble and I was envious of the carefree laughter between friends, between couples and between parents and their children. The thing about Great Ormond Street and the adjoining streets though is that they are full of patients heading to and from the hospital, very quickly any moments of envy etc fade as you see parents and their severely disabled, disfigured and seriously ill children in the streets. What do people say? ” there’s always someone worse off than you” , well they are right. When I returned to Robin Ward and saw that little bald headed smiley face grinning from ear to ear I knew I was one of the lucky ones.
Herbie enjoyed his card and sweets from Aunty Lucy et all and the letter from Hope.
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He tucked into and devoured a large portion of fish, chips and beans and shortly afterwards Dr Olga arrived. As usual she laughed with Herbie and he even, embarrassingly, smacked her bum! She was very pleased with his progress and said the larger doses of iv steroid would continue over the weekend and reduce on Monday and hopefully go back to oral. Jess the teacher came in as the doctors left and I had time to head out again. At the lift I bumped into a couple from the ward who I have become friends with over the past 8 weeks. They were headed to PICU where their little boy was transferred the day before after becoming more unwell. It’s funny how suddenly you feel so strongly for people you have really only just met. I haven’t really stopped thinking of them and their gorgeous little boy, who turned 1 in hospital. Please keep them in your thoughts, I hope they will be back on Robin ward ASAP x When I returned from my walk in the sunshine to the ward I saw another fellow BMT parent packed up and leaving. They had also arrived after us! Sigh…it has to be our turn soon. The afternoon was spent playing the Peppa Pig sports day app with Herbie and making a loom band. Dinner arrived at 4.30pm as usual and then after the two iv’s we headed outside. image Herbie wanted to go back to Queens Park and blow bubbles again.
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He also wanted to check out the book seat again (Pride and Prejudice) image We headed over to look at the statue and also found a plaque commemorating the opening of the park.
Herbie skipped about chasing bubbles and then a grey squirrel.
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We headed over to the other park to have a quick go on the slide and then headed back to GOSH to the vending machine.

With a kit kat in hand Herbie headed back to his room. There was lots of banter with the nurses before he went back in to room 2. A nice evening spent playing games and dancing and singing before he finally gave in to sleep at 10pm.

Bloods
HB 104 (yippee)
WCC 13.64
Neutrophils 11.01
Lymphocytes 1.16
Platelets 191
CRP 5

Sweet dreams all xxx

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