Henry sleeps in his ‘big boy’ bed for the first time

Hello! People keep asking how Henry is doing and reminding me that I’ve been utterly useless at keeping everyone updated over the past few weeks so I’ve promised to do better. He did us proud last night, first night in his ‘big boy’ bed and he slept through. This is quite a big deal for us, Henry’s always been a terrible sleeper because of his tummy problems and his pump, so we were taking a bit of a gamble! We’d kept him in sleeping bags for longer than we wanted to to stop him from pulling his pump out or getting it tangled up, so for him to manage with it in all night and no bag was amazing  x

40th blood transfusion today! Also some rather difficult news

40th blood transfusion today! Also some rather difficult news. Henry’s iron levels are just going up and up so we had a chat with London today and they’ve said that we have to make some changes before Henry’s organs are permanently damaged by the iron. Henry will have to have a ‘port’ fitted under the skin in his chest, a little device that means blood and medicine can be fed straight into a vein close to his heart. He will need this so that he can be attached to his pump and have his medication running 24 hours a day, 7 days per week, to try and get rid of some of the excess iron. We’re desperately sad it’s come to this but obviously have to do whatever we need to to keep him safe and give him the best chances, we’re hopeful that it’ll be a short-term thing of up to 12 months and then Henry will be in the position to have his stem cell transplant as his iron levels will be low enough to make it a bit safer for him. We’re also having to move him on to a 3-weekly blood transfusion schedule as the amount of blood that can be safely put in just doesn’t last him 4 weeks any more.

I think I must’ve known what was going to happen as I bought him a new Hey Duggee back pack last week, we’ll be putting that to good use when he has to carry his pump around on his back all the time!

We’re trying to be upbeat about it but quite honestly, we’re deeply upset as we know it’ll really affect his quality of life (he lives in the water and won’t be able to get wet when he has his pump attached). It feels so unfair but Henry always makes the best of everything so we’ll follow his example 💪 xx

Feeling better!

Normal service has resumed! Thank you very much for all the love. Henry’s feeling much better, they think it was gastroenteritis but he’s almost back to himself 😁 (am wondering if we may have introduced Jurassic Park a little too early…😳) x