We recently had a proper photo session done with the children, and I thought it may be a good opportunity to add a new entry.
There aren’t that many there, I tried to be sensible, but there are a few shots of each of the children. View these here.
A quick update on Max: he is now in Year 2 at Fircroft Primary School, a mainstream school around the corner from here. He is clearly behind his peers but is doing incredibly well. His biggest hurdle is his lack of speech and a lack of vocabulary in his signs. This is as much due to our lack of knowledge as a difficultly in finding out what the signs are! We are moving onto sign assisted English which uses BSL signs which should make the finding and teaching of signs much easier. His handwriting is coming along slowly (he still shows a lack of control in fine motor skills) as is his reading – as you can imaging learning to read for him is very tricky! – so eventually we hope that all this will assist his ability to communicate.
On a medical front, he has developed seizures of some sort that are not epilepsy, but more apnoeas, where he just seems to forget to breathe. He is on medication that seems to be controlling them quite well. His tumour is still there but now very much a mass rather than anything else. It has not grown for some time and is slowly becoming proportionately smaller but the change is very slight and there is no probability of anything major changing with his airway management. As he has grown, he has had many less chest infections and breathing problems. We have just been through a bout of chicken pox for all of them and he came through that just like any other 6 year old boy, except he complained much less than his brothers did!
The little boy that was put on palliative care this time three years ago has turned four and is thriving and surpassing everyone’s expectations. 
Very briefly: we are back in Balham having lived in Norbury for four and a half months. It is great to be home although things are not finished yet.
Max’s walking is so good he is practically running. We have had issues with rather frequent diarrhoea, which will hopefully be sorted by changing Max’s milk. 
Luca is now two and talking practically non-stop. He thoroughly enjoyed opening presents on his birthday and is looking forward to opening the presents at Christmas. 
Marco is still huge. He is now four months old but looks more like a six month baby. We have recently started him on some solids.
J and I have been very stressed with the move back and the total un-liveability of the house when we got here at the end of last month. J has been very busy with 
something I can’t share with you until the end of January. 
All in all things are settling down and we are looking forward to a quiet Christmas at home with our three boys, 2 dogs and my brother. As the only girl (of any species), I feel ever so slightly outnumbered!
Well although the little chap was born on Wednesday I actually went in to be induced on Monday morning. The induction is done by using tablets that basically soften the cervix; quite often the first tablet doesn’t do much and subsequent tablets are given at 6 hourly intervals. The first tablet was used at midday and had no effect at all because it did not dissolve and was discovered whole at 6 pm when they tried inserting the second tablet. 
Oh dear, I see that the last entry was rather a long time ago. Since then, the most significant thing that has happened is that we have moved house while significant works are done at home, where things seem to be progressing well, if a little slowly. Having moved, Silvia seems to have been going in and out of labour, making things rather uncomfortable for her, and uncertain for everyone else. With Max born at 32 weeks, and Luca at 37, we felt fairly safe in predicting another early arrival. Sadly he has had other ideas, and we went in for an induction of labour on Monday (14th Aug). After rather a lot of indecision on the baby’s part, he finally put in an appearance at 6:15am yesterday (16th Aug), delivered by c section. We will add more shortly, I promise!
We haven’t written much in quite a long time, but just to keep you up to date we thought we’d share a few photos and give you just some very brief details of what has been happening in the Hope-Mason household in the last couple of months. 
Before I launch into news about our trip to A&E, a few things have happened between the last entry and now. Firstly Max’s great ability to sit up unassisted has meant that the sides to his bed are too low to keep him safe especially as the bed goes quite high so that his nurses can suction him without hurting their backs. 
The Statement is Max’s Statement of Educational Needs (SEN). Children with more severe Special Needs are entitled to have a SEN but as these actually have money attached to them we hear that the state is trying hard to avoid statementing children wherever possible. There has however, never been a question about Max having a statement and we began the process nearly a year ago. 
