More waiting :(

Sorry for the lack of updates, not much to tell as yet. I’ve spent a lot of time on the phone since our appointment last week and we now have three different hospitals communicating about next steps, which is fantastic. I sense nothing will move quickly and we have lots more waiting to do…but there’s a lot of very smart people on the case so we’re feeling pretty positive for now! Henry’s ok, had some skin irritation and been a little quiet since his hepatitis jab last week but all good otherwise 👌 x

Update after our first IVF consultation

Hi everyone, thank you so much for the love and well wishes yesterday. The upshot is, basically, we’ve been left with more questions than answers. The appointment was supposed to last for 45 minutes but we were in there for two hours just because our case is so complex and unusual. The stumbling block is that Henry has two faulty genes rather than just one and the Consultants aren’t sure they’ll be able to screen out both in our embryos. I’ve had to email over lots more information to the clinic this morning and they are holding a meeting with all their staff to discuss what they can do. We will let you know more as soon as we do x

First IVF appointment

We’ve just arrived at Guys hospital clinical genetics for our first IVF appointment. We think it’ll just be a consultation, talking through the stages. We have an unusual mix of feelings being nervous, excited and very anxious all at the same time!

But we must say a huge thank you for getting us to this point. Without your kindness, we simply couldn’t have made it this far on our journey. There’s a long way to go. Wish us luck!

Transfusion no.33 done

Transfusion no.33 ❤. Absolute star, never any fuss, just sits and eats his body weight in junk food for three hours 😂. May have celebrated the blood threshold change a little prematurely yesterday as our local Doc isn’t too keen but we’ll see if Henry can work his charm 😉 x

Nurse Henry :D

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

Frightening drop in blood levels :(

Henry’s legs are suffering from the injections.

Update – Been a busy few weeks with Speech and Language, Audiology and a mild panic earlier this week as Henry started to have a bit of a reaction to his pump. Luckily, seems to have resolved but we’ll double check it’s ok with our lovely team on Elective Care when we take him in to hospital next week. Had to bring his transfusion forward as we think his blood has dropped really quickly this month 😔 x

A well earned trip to the Zoo

Threw caution to the wind last Saturday and took the boy to the zoo despite terrible weather and the fact that it was the weekend which means crowds and germs. Bit of a reward for having a rough week with the pump and having his molars coming through (a joy to behold for all of us). He had a super time despite getting a bit worn out because he’s getting close to needing blood X