Close your eyes and make a wish…

Things are starting to ‘hot up’ now as we draw ever closer to ‘the date’.

This week we have been to Great Ormond Street again for a plethora of tests, dental checks (to ensure no signs of infection or possible infection before transplant in the mouth/teeth), a lung function test to get a baseline of his lungs capacity and ability, blood tests, medical for Rufus (who is super fit and ready to go apparently) and a baseline ECG. All of this was documented by the cameras. Paul Veys once again put us at ease and answered our questions honestly but calmly. Herbie is to drop his steroid intake again before transplant and during his medical they seemed pleased with him although slightly confused by the random temperatures he keeps getting. My mum, Mimi, came too as she wanted to familiarise herself with the hospital as she is going to be our third named person. Once in isolation Herbie can only have three named family members in his room to help lower the risk of infection. 


We got home from GOS AT 7pm that night, next week we are there again. This time for Ru’s HTA assessment to ensure he is not being coerced into being a donor and for Herbie to have his PEG feeding tube inserted. I feel a bit apprehensive about it all, I know this is the beginning of it …no turning back. 

On a happier note, Herbie’s wish from Rays of Sunshine was delivered on the same day as the GOSH visit. On Good Friday Dan’s family arrived to help put it together. After many hours, lots of drilling, cups of tea and reading of instructions it was done! Herbie was thrilled! 


He has spent many happy hours playing in his “treehouse” (as he calls it) and the customisation is almost complete, solar twinkly fairy lights added, blackboard, telescopes and a play phone. Rainbow hammock and ships steering wheel are on their way too. The hope is that on his return from transplant he will have this to amuse him through the summer when he is having to stay home.
Big thanks to Rays of Sunshine charity for granting his wish!

So fundraising update is that in just a week we have almost raised £1000 for GOSHCC (Great Ormond Street Hospital Charity) and another family member has joined Herbie’s dream team!
If you want to support the team as they run 10K click below and donate!
JustGiving - Sponsor me now!

I think I will need to step up my posts now as there is too much happening to just post once a week.
I leave you with an anecdote from today’s family Easter Egg hunt. Herbie’s great friends , the twins Lily & Sam, were so thrilled to see him today at the Easter celebrations. Lily & Herbie spent ages sitting closely playing on the ipad
And as he left Sam asked “when will Herbie be back to school every day? ” adding “I hope it’s soon”
A wet eye moment… “Soon Sam, when my immune system works, soon” replied Herbie

Yep the boy was forced to take a break from his treehouse...
Yep the boy was forced to take a break from his treehouse…

Support Primary Immune Deficiency awareness week this coming week. Check out their website

One thought on “Close your eyes and make a wish…”

  1. Loving you all always, sending you positive thoughts,especially when we have our chilli con carne and chicken ticker?! Xxxxxx

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