Had a little victory today! Community nurse came to take blood this morning, Henry unpacked the box, found the right needles and tried to do it himself! He even took out three test tubes and put them in their holder ready to collect the sample 😂. So well trained already. Anyway, his blood came back very low as I suspected, he’s really been struggling this past week. Called our Addenbrookes consultant to see if we could persuade her to change his thresholds (how low they let his blood drop each month and how much blood they top up) and she’s agreed they will give him a bit more each month and won’t let it drop so low anymore. This sounds like a really trivial thing but it will make so much difference to his quality of life! Won’t be able to do it this month as it would mean giving him too much blood which isn’t safe, but should be on the new plan from next month. Things are looking up 🎉😊 x
Henry's Little Heroes 