July 2016

An update as its been a really long time with no posts!!
Aaron stopped using the tube around 2 months ago and had it taken out completely around a month later at the end of June, he still uses the formula to retain his remission and also keep up his nutrition but manages this as hot chocolate, and cereal mainly, making his diet 50% solids 50% formula milk.

cup for running with feeding pack on!

lost teeth

1st solid(ish) food in nearly 4 months!

He seems to be doing pretty well, despite a long strep throat infection, some thrush, something with his nose, maybe an infection, giving him daily tiny nosebleeds and a sickness bug sweeping through the family.

He has had a couple of occasions of blood in his poo, so I am keeping an eye on that and hoping its the others things he has had upsetting the delicate balance.

being brave post injection, with his devices; dummy bunny, mummy and buzzy

He is coping ok with the fortnightly injections, they still sting excruciatingly but he is very brave, recently he has had some tricky blood draws to add to the stress and his other medicine is still being balanced out as he seems to be metabolising it too fast. There have been quite a few little and not so little ups and downs to sort out too, eg a blood test showing low platelets which might have accounted for his fatigue and nosebleeds but righted itself, and a worrying petachie rash which was nether meningitis nor low platelets but the virus he had but required a trip to the hospital one weekend, and head to toe hives for no obvious reason but just after an injection so a concern it was caused by that but he seems ok now.

hives

non blanching rash review

It has been a somewhat quieter term than the previous 2 but that isn't saying much! There was the month I put my back out and couldn't manage much, which was tricky with the tube feeds and prob caused by the bending to do that too. Currently we are putting another bathroom in upstairs, ensuite, it'll be useful to have another toilet!

Viking day

Josh has had several appointments; urology says his medication to relax his bladder is now causing him  not to empty properly so we have to keep an eye on that in case that causes an infection and maybe discontinue which would be a shame as it has really helped. We had an external review at GOS by Liverpool which was quite intense, but still no good answers why he needs continuing medication. Also his muscle strength has shown some improvement with the physio he has been doing, but is still borderline so he is still on the waiting list for GOS residential physio for now.

Evacuee

Ethan is fine, coming to the end of primary school and getting ready for the transition to secondary in September, his last audiology appt showed cleared glue again from his ears so he is without hearing aids for now but will have regular reviews.
The summer looks set to be busy with painting in the house and other redecoration and arrangements. We would like to try and fit in a holiday between that and he fortnightly injections

Ripleys Believe it or not pre-GOS appt

tiring farm trip (in the cafe)

farm trip with feeding pack