Author: Silvia

We have been celebrating Max’s birthday now for about four days! We started off on Saturday at Granny’s and Gran Bri’s with a cake for tea. Max loved having Happy Birthday sung to him and enjoyed helping me cut the cake. Then on Sunday Maddy, Olivia, Maz and Simon came over for tea and Mummy baked a cake – Continue reading “Massimo’s 3rd Birthday”

Max last had an MRI scan on 5th July and the MLB (or bronchoscopy) was before that, so it has been just over six months since anyone has had a good look at what is happening with Max’s tumour. His oncologist and ENT surgeon are keen to continue to look at the tumour routinely on a six monthly basis. Also, a couple of weeks ago Max seemed to be losing blood from his mouth and nose and on one occasion from his ear. Continue reading “MLB and MRI”

Massimo started nursery on Thursday afternoon. He was clearly not really aware of the momentous occasion and was totally relaxed in his buggy ready to go out. Max is supposed to wear a smock top over his clothes to go nursery but we haven’t received it quite yet. As soon as we do we will show you more pictures. All the following pictures were taken on his first day at nursery and the lady in the pictures with Max is his one-to-one teacher Orlaith who is absolutely brilliant with him but before I could post any pictures I wanted to get her permission first, hence the slight delay in the entry. Jemma stays at the nursery with him as his carer and looks after all the suctioning and feeding and all things medical. At the moment Max does spend most of his time on a one-to-one basis with Orlaith although he does join in with the group music lessons which he loves. Continue reading “Red Balloon Nursery”

Our holidays got off to a good start when we broke down on the M2 on our way to Dover. It was about 8.45 pm, Luca had fallen asleep but Max was still awake. We called the RAC and as we were on a motorway they promise to be with you in half an hour. They then put us through to a recorded message giving you safety advice which includes getting everyone out of the car and as far up the verge as possible. Continue reading “The Christmas Holidays”

Just before Luca’s birthday, Max’s breathing started being a less efficient, especially at night and eventually we had to put him back on oxygen but just at night. Jemma and I kept a careful eye on him, but as the week progressed he got worse. On the Wednesday his community nurse came to see him and took a specimen of his trachy secretions for testing. Continue reading “RSV Bronchiolitis”

The last real entry was on October 6th, nearly two months ago. Jemma and I were just cogitating on our next entry when Nonno passed away and things have been fairly hectic since. Looking at my diary I see that we didn’t do that much of note. Max was due to have the second part of his MMR on 11th October but this got postponed due to a cold. It was then done on the 21st October. Max is now up to date with all his immunisations – it is incredible how long it has taken us, especially when you consider that Luca is due his first MMR in just under a month. Continue reading “Monkey has a trachy and Luca is one!”

Just a quick entry to let you all know that Nonno’s two funerals went off very well. Thank you to all those who attended and thank you also to those who have sent flowers or a donation. These past few weeks have not been very easy for any of us, it is quite hard to appreciate that Nonno is no longer with us. Of course, Max and Luca don’t really understand that he won’t be visiting any more, but their little cousins Matteo and Tiziano (both 4 nearly 5) are trying valiantly to grasp the concept. We will write a full entry soon as Max is changing daily and we have lots to report.

The funeral in Southampton will be on Wednesday 16th November at 5 pm. It will be held at St Edmund’s Church, Southampton, SO15 2EQ.

Finding the church from the M3 is very easy: take M3 to Southampton, come off the M3 (which is just about to turn into the M27) following signs for the A33. At the first roundabout go straight over (2nd exit), this road is called The Avenue. St Edmund’s Church is on your right on The Avenue. You need to go round some sort of one way system to get to it, but apparently when you see it, it will all be clear! We will be organising for parking facilities in the nearby university, details to follow.

Anyone arriving by train, please let us know your planned arrival time so that we can try to organise picking you up. Justin or I and our large car (van) can collect up to 5 people at a time and we have a few other willing chauffeurs. We will all be in Italy this weekend for the Italian funeral so please contact us from Monday onwards, either by leaving a message here, by emailing me (silvia@hopemason.net), by phone or snail mail.

There will be a memorial service here in the UK on Wednesday 16th November 2005 at St Edmund’s Church, Southampton, SO15 2EQ. The time is yet to be agreed upon as we would like it to be held at 5 or 6 pm, to allow people to come after work yet the priest thinks that 3 or 4 pm is more appropriate. Vittorio and he will argue it out on Thursday this week. As mentioned before, there will be drinks and refreshments afterwards at Vittorio’s house, 5 Ashwood Gardens, Southampton, SO16 7LF.

There will be a funeral in Italy on Saturday 12th November 2005 at the local church in Aramengo (AT) at 10.30 am.

There has been great difficulty in finding a venue for the memorial service on Saturday and the earliest we can hold the service is Thursday next week. The service will probably be in the early afternoon at 3 pm or 4 pm. Once arrangements have been made, we will let you know.

An autopsy was performed on Nonno on Friday morning and he died of a blood clot in the heart mainly due to the bad state of his arteries. He died peacefully in his sleep.

The plan is to have a memorial service on Saturday in Southampton, as long as we can get organised in time. I will post exact details and a map in due course. There will be drinks and refreshments afterwards at Vittorio’s house, 5 Ashwood Gardens, Southampton, SO16 7LF.

There will also be another service in Aramengo, but the date of that depends entirely on when we get the permit for repatriation from the Italian Embassy. This can take up to two weeks.

Like for Nonna, Nonno will be repatriated and placed in Italy next to his wife. We ask that in lieu of flowers donations be made to Friends of the Neonatal Unit by cheque or using PayPal via the To The Max website.

Massimo’s Italian grandfather died today, or at least we think it was today. Nonno was at Uncle Toio’s. As usual this morning, the two of them didn’t see each other before Toio left for work. This evening, when he got back from work, he found Nonno still in bed, hopefully having passed away in his sleep. We will know more when the various authorities have done what they need to do, possibly including an autopsy. We will be holding some sort of memorial service, details to follow.

It has been exactly 23 months since his wife died.

Luca copies Max in absolutely everything he does and so he is now bum shuffling too. At first he just noticed that Max seemed to go up and down with his torso and somehow that propelled him forwards, so Luca used to sit there for ages bouncing up and down hoping to move forwards too – unfortunately if he’d just eaten it would make him sick instead! Eventually he started moving forwards slowly, really more by default than anything else, but he has now developed a technique of his own. So now we have two little boys who cannot be stopped from getting into mischief! Continue reading “We have a copy cat!”

….. who, along with her mother, is always the first to complain that we don’t write enough entries, but above all don’t put enough pictures on the website. We met Sarah’s little brother on PICU at St George’s Hospital in the summer of 2003 and the families have kept in touch ever since. Sarah is currently studying medicine at St George’s Hospital and, having worked very hard during the summer, has taken a well-earned break and is enjoying herself in Australia. She has, however, found the time to send the boys a postcard including a request for more news! So, Sarah, this is for you! Continue reading “This is for Sarah …”

I can’t believe that it is nearly the end of August and another two months have flown past. There are more pictures to show you and the usual tales of hospital appointments and general day to day things. In the main, Max is still doing well. He has been off his oxygen at night for ages now, but the other week he had a cold and was on oxygen again for 4 nights. Considering that in the old days a cold would eventually mean a trip to PICU, we feel that 4 nights on oxygen is an incredible result! Continue reading “The tumour is still growing and other news”