Just a very quick update for you all, Austin is doing fine as we approach 8 months post transplant and his latest results have come back very good, particularly his Lymphocytes and CD4 count. As far as his engraftment goes, he is still a mixed chimerism and there has been little change – but at least it appears stable where it is. We are carrying on with the Immunoglobulin infusions every fortnight. His IgA and IgM are still below normal range at 0.14 and 0.3 respectively.

As far as his development goes, he clearly understands a great deal but his speech is still delayed. We continue to go to the Chatterbox class which he has really settled into much more now. At snack time they are individually given the choice of apple or banana and yesterday Austin very clearly and out of nowhere said “apple” – his face lit up and his hands waved in the air as everyone applauded, he was so happy with himself (as was I). He is vocal though and he has been making a number of new sounds this week. Most commonly used is “hey!” when he sees someone or something he recognises.

His daredevil antics continue and both a curtain and a wall full of pictures have been removed from the living room. Plus I recently discovered why there is always so much crashing and banging in his cot at bedtime every night – I’ll let you decide for yourselves whether he will become a breakdancer or circus performer. Take care all, Kerry x

Time for another update. On Monday 28 March (almost 6 months post transplant), Austin had his Hickman Line removed. It was only being used every other week for blood tests and therefore was deemed more of a risk of infection than a benefit. It was a long day, leaving home at around 9.30am (thanks to the Rainbow Trust for transporting and accompanying us once again) even though we were on the afternoon list for theatre. We got home in the early evening. The removal itself is a much quicker procedure under general anaestethic than the insertion but there was an awful lot of waiting around which was spent by and large by Austin in running around mode, up and down the ward and in and out of the play room. I must point out that this was both pre & post the operation – there is no holding him back! Right up until we were there, we were not actually sure if the procedure would go ahead as he’d been having cold like symptoms through the weekend. They were happy to procede as there were no signs of a fever but did an NPA (aka snot test – urgh) to check for viruses. So all in all, a successful but exhausting day and to top it all we were due back in just over 24 hours for his first clinic appointment with the Immunology Team, having now left the care of the BMT team.

I should explain that ever since the Hickman Line was inserted back at the end of September last year, every time we have bathed Austin we have needed to wrap the ends of the line (lumens or wigglies as we called them) into a plastic glove and seal the ends with plastic tape so as to keep them dry. I’m sure the dressing covering the entry point on his torso was also meant to be kept dry but we never actually managed to stop Austin splashing and pouring water over himself, so we do count ourselves incredibly lucky that he didn’t ever get a line infection. Day in, day out he has also had to wear a stretchy string vest which is actually a tubular bandage but was used to hold the lumens in place around his body instead of them dangling down and potentially entering his nappy (definite disaster zone!). The lines have also had to be flushed & dressing changed by a nurse once a week, regardless of whether bloods were being taken. So this also sees the end of our weekly visits from the Community Nursing Team. A huge thank you goes to Alison who has looked after us since the early days of the dreaded Eczema right up to now & also Susy & Janice who came in her absence. I miss your visits a lot although obviously its a positive move forward for Austin. The day after this surgery,