May milestone madness (Day +442)

In the nick of time we've managed to get a May blog out the door. It has been a pretty eventful month with Max passing many milestones. Health-wise, his skin is still not flash (blotchy, thickened, flakey and still no nails) and his scalp is quite crusty. He was knocked around a little last week by a cold but he seems to be getting on top of that so that's a good sign. Max is still the master procrastinator at mealtimes, making up all sorts of excuses as to why he can't eat. However, that said, when he does enjoy a particular meal...there's no stopping him. Current favourites are spaghetti bolognaise, frankfurts and sausage rolls!

Bolognaise with the mystery hiding vegetables!

As for milestones reached:

No more masks required when visiting hospital! That's right, Max is no longer required to wear a mask in the fashion of a Japanese public transport commuter (for the blogspotters out there that reference is like all my jokes: recycled) when visiting hospital. Not that we had too many troubles getting him to wear it, but is nice not to have to worry about it.

No more nappies! Max has at last levelled up to being a fully fledged member of the nappy free kids crew. For a while now Max, despite being toilet trained still needed to wear nappies at night. After around a month of wee free nappies, Bee made the decision for Max to go to bed sans nappy. And he hasn't looked back.

No more steroids and no more Urso! Max has been on the steroid prednisolone ever since his transplant. Although the steroid hasn't turned him into a beefcake (that's a different type of steroid) they have been important in attempting to keep the peace between him and his new immune system, and have played a part in dampening the impact of the Graft versus Host disease affecting his skin. Unfortunately, like most medications, there are side effects and the steroids were responsible for his lack of growth, osteoporosis, spinal fractures and his cataracts. Max had been slowly weened down to a very low dose of the steroids. With much excitement, at the the last appointment with Dr KT, she said it was time to take the training wheels off and see how Max would handle life without the steroids. She also said we could drop the drug Urso (prescribed to lessen the risk of developing GVHD of the liver as Max was showing signs of impaired liver function) from his regime of medications.

Max is now down to 9 medicines (5 syringes and 4 tablets) in the morning,
1 tablet for lunch, and
8 medicines (5 syringes and 4 tablets) at night.

Re-vaccinations! When they wiped out Max's original immune system, prior to the bone marrow transplant, it meant that all his original vaccinations received since birth counted for nought. At some stage we knew that he would need to take them again but only when his new immune system had built up sufficiently. Well that time has finally come and Max this month received for the second time...Pneumococcal and Meningococcal C vaccines, along with an Influenza shot for good measure.

Relaxing of isolation restrictions! Dr KT has further relaxed Max's restrictions for interacting with the open world. Max celebrated by attending a couple of small birthday parties, a quiet christening, and giving his mum a hand at the local supermarket.

Emma's Christining

Our Stud at Griffins Birthday!

First time Shopping in over 1 year!

When not out enjoying a bit of the world, Max is quite content occupying his time at home with Mum doing beautiful artwork, drawings and painting!

Self Portrait

Upon asking Max what the big red splodge in this picture was, he replied "It's your big heart Mummy!"

Another portrait of Mum

and Painting...

Thank you to Paul and family for all our goodies!