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!
It probably isn’t anyone’s favourite programme, but tonight there is a special Challenge Anneka all about children’s hospices. A lot of it was filmed at Christopher’s with children from Christopher’s. The programme’s main aim is to raise awareness of children’s hospices and also to help people understand what hospices actually do, and therefore why they are invaluable.
Christopher’s have been extremely good to us as a family and we would do lots to try to support them. So please spare some of your time and watch the programme (and get all your friends to watch it too!)
The Radio Times says:
Wednesday 06 June
9:00pm – 10:30pm
Anneka takes up one her biggest challenges ever – to produce and record an album which will raise funds and awareness for children’s hospices country wide, all in just five days. She sets about organising some of the UK’s highest-profile recording artists to perform in a Gala concert to launch the album, and assembles a choir made up of children from the hospices to sing on the CD and at the gala.
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.
On Sunday (24th September) Max took his first unassisted steps. Of all places, we were in Marks and Spencers at Bluewater and we were coming out of the baby changing area. His walking holding onto one hand had become so good and I said “walk to daddy” and he did! He took about 5 steps altogether as Justin moved backwards – he was doing so well. The steps are confident and he has walked a little every day since. The other day he was losing his balance but instead of toppling he paused, regained his balance and carried on! We will add a video here soon!
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. Continue reading “A name and a few more details!”
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!
As we are literally between homes, the charger for our camera has gone astray, so we are limited to pics from my phone. Max was singularly unimpressed by the little chap, and refused to appear in the same frame, Luca however warmed to him quite quickly, so here is a snap from my phone of Luca and his as yet unnamed little brother.
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. Continue reading “A few more pictures”
As promised here is a short video of Max walking (unassisted) with his walking frame. It was taken quite a while ago but unfortunately since then it has been the Easter holidays and he hasn’t been using the walking frame much, so has lost some of his confidence. Now that term has started again and he will be going 3 afternoons a week, it won’t take long before he regains old ground. Over the holidays his standing has got stronger and he has started cruising (walking holding on to furniture). Luca on the other hand is practising his walking now and is getting more confident by the day.
NB If you are unable to view the video, you may need to upgrade to the latest version of QuickTime
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. Continue reading “A busy month and a trip to A&E”
We received a letter on Friday clarifying the rules under which Max would be entitled to a place at Red Balloon Nursery. Basically they will not pay for the fees, they will give us £366 per term for 12.5 hours a week (pro rata) towards the fees, which all children over 3 are entitled to. They have said that they will back date this payment to January, but the rest of the fees will be our responsibility. As this is considerably less than the fees, if we want Max to go to Red Balloon Nursery we will be left with a large bill to pay. There is no way that we can fund such high fees for the 5 terms we were intending Max to go to Red Balloon Nursery so we are now back to the drawing board and wondering what problem will arise next. If Paddock School have a space for Max in the nursery from September that might have to be the way forward, although it isn’t exactly our preference. However that still leaves us at least the problem of next term. We will keep you posted.
Other news is that Luca has learnt to walk up the stairs (it is more a walk than a crawl) and Max has walked with his walker all by himself. Up till then Max wouldn’t stand happily unless he felt somebody’s hand somewhere on him, not necessarily helping or holding, just being there. So this is a huge step forward. Luca has also learnt a few words. He has added this, that, bubbles and doggie to his limited vocabulary of Daddy and hello.
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. Continue reading “The Statement is nearly finalised”
This fantastic news came through by email yesterday from one of Max’s consultants. She said:
“This is a report, yet to be authorised, of the MRI. There seems to have been a slight reduction in tumor bulk which is very good news! I imagine that Hamid [Daya – ENT Surgeon] will forward these results to Peppy Brock [Max’s Oncologist at GOS] when he returns from leave. This report would support Hamid’s observations during MLB.” Continue reading “The tumour is shrinking at last”