Massimo's story

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”

It is really very exciting! On Tuesday 14th June in the evening, Max managed to bum-shuffle just a couple of inches to reach a toy. On Thursday we had respite and Denise came with a new nurse Lisa. The two of them actively encouraged Max to bum-shuffle to reach toys and he increased his distance to about 1 metre. From Thursday he really discovered the joy of motion and he is always on the move now. There is a video below. Continue reading “We’re on the Move!”

On Wednesday 18th May we took Max and Luca to their first session at Monkey Music which Luca thoroughly enjoyed. Actually Luca got so excited he was bouncing up and down so much he made himself sick! Max on the other hand couldn’t believe that he was up and about at such an ungodly hour (it started at 9.30!) and refused to crack a smile for the entire 30 minute session! Continue reading “Monkey Music and More”

Since Massimo was born I have often been asked if I’ve seen Welcome to Holland. Finally I have received a copy and I have transcribe it for you below. I didn’t write this, I don’t know who did, but it is incredibly insightful. Continue reading “Welcome to Holland”

The new chair I mentioned in an early post finally arrived on Monday 25th April. We spent the day trying to set it up getting all the various supports and bits in the right place for Max himself. It wasn’t quite as easy or straightforward as one might think but we sort of got there in the end. We are waiting for one of his Occupational Therapists to come and set it up. Max has two Occupational Therapists, one is a paediatric OT and the other is part of Social Services and is in charge of authorising and ordering any equipment. So far no-one has been to see the new chair and we do have a few issues with it. The most important being that it will rock from side to side and forward and back, loosening all the bolts. Max thinks this is terribly funny and uses it as a passtime and also to move along the floor! Continue reading “Finding a School”

Just to let you know that the event raised a massive £11,878.14. Thank you to everyone who participated, helped and above all spent money!

Most especially thank you to Lucy, whose original idea it was and who put so much hard work and effort into organising it.

Also, congratulations to Lucy and Marco (pictured) who got engaged last weekend in a hot air balloon over Berlin!

I last wrote on Wednesday 6th April. Nothing much happened on Thursday and on Friday we went to St George’s for Massimo’s MMR. Although MMRs are normally done at the surgery, our surgery were slightly hesitant about doing Massimo’s just in case he had a reaction and they felt they would be happier if we went to the hospital for it. Although we had some tears at the time of the jab, Massimo took it all rather in his stride and as no side effects were noticed during our “watch and see” time, we left after about half an hour. The second of the MMR jabs will be done at the surgery like all other children. Continue reading “More toddler antics”

Early Tuesday morning (29th March), Max’s night nurse told us that Max had not had a very good night. His breathing hadn’t been brilliant and his oxygen requirement had gone up from his usual 0.2 – 0.3 litres per minute to 0.8 litres per minute – which in itself isn’t a great deal of oxygen but when you consider it is nearly 4 times the normal amount he needs it is quite a significant change. Continue reading “999 Again!”

On Saturday 26th March, whilst playing with his nurse Denise, Massimo proved that sitting is something he can do perfectly well. He pitches back only occasionally now but still needs someone there just in case.

What a clever boy!

Other news of note includes our new car. We have bought a V reg V-class Mercedes. It is basically the MPV version of the Mercedes van and inside it can hold up to 7 seats (we have 6). It is extremely comfortable and makes loading the children in the car much, much easier. It should suit us very well.

We spent Easter Sunday having lunch at Granny’s. We had a lovely day even though we rather missed our hour’s sleep, with the clocks changing. Max was on very good form but Luca wasn’t quite so good. Max had lots of fun with (Great Aunt!) Sandra.

Not bad for someone who wasn’t supposed to survive his next tracheal collapse! Herewith photo of the happy event, but first things first. On the Saturday after our last entry we had a visit from Sally and her three beautiful girls. Sally and the girls came to Max’s first birthday party on PICU so it was timely to see them again. We had a lovely, albeit noisy afternoon!

On Sunday the family came over for the birthday celebrations and once everyone got here Max decided it was a timely moment for a quick forty winks! That rather left us all at a loose end but luckily he only slept for half an hour. Granny had made a lovely chocolate cake for him and he was rather taken by the lit candles on it. He had some lovely gifts and cards and we all had a lovely afternoon. Mummy and Daddy’s birthday present arrived a few days late but it was a huge success at it is an activity table which supports Max but allows him to put pressure on his feet. Within minutes of being it it he learnt that he could push himself round and round and now rotates at quite a speed! Continue reading “Massimo is two!”

…let us hope we aren’t tempting fate by writing it! He has now been out for 4 months (except for the blip the day Luca was born). We are very proud of him especially as we have survived a few minor coughs and colds and most of the winter! Apologies for the lack of entries but I’m sure you can appreciate that a newborn and Max makes for a lot of work, even for two people. We have lots of pictures again too and I hope Max doesn’t mind if we include a few of his little brother too – this being his website.

The first few photos were taken on 18th December at our Christmas lunch at Granny and Brian’s. There is Massimo with his Granny and Massimo opening a gift with his Daddy and Luca with his cousins Dan and Emilie. Then there is the photo of Massimo with Jemma when we took Jemma on the London Eye as part of her Christmas present on 23rd December. Luca asleep on his Daddy on Christmas Day; Grandpa, Luca and Massimo on Boxing Day; Massimo swimmimg at Christopher’s while Luca slept on his buggy on 6th January; Jemma and Massimo sharing a bath on the 10th; Massimo and his Mummy swimming at Christopher’s on the 18th; Luca then Massimo smiling at their Daddy on the 22nd; Massimo laughing with Horace and displaying a fine head of hair on the 23rd January. Continue reading “Massimo is still out of hospital …”

… at least among members of the Pediatric Otorhinolaryngology community!

He is the subject of a study published in the International Journal of Pediatric Otorhinolaryngology.

If you feel like splashing out $30 on a document you are unlikely to understand, you can download it.

Sorry about the lack of updates recenly – Max and Luca are a full time job for 2 people. I am sure we will have news and pics up soon.

Hectic has finally calmed down. As far as the decorating is concerned, all the painting and electric work has been finished, but the back door is still missing a dog-flap. We have finally begun the slow process of cleaning and tidying. Unfortunately our Christmas tree has suffered due to the large amounts of dust and paint fumes (and lack of water!) and was in such a state that on Monday Jemma and I chopped it down and Justin came home with a replacement. Luckily the old one burns quite well and smells rather nice in our open fire!

Since we last wrote not much has happened. On Sunday 12th we went to the Neonatal Unit Christmas Party. There were so many people there! We saw Alfie and Kim, Kirsty, Robbie and Ned and Serena and Wilf – the usual suspects photographed at the NNU party last year! Of course all the children have grown up quite considerably but we forgot the camera so no pictures this year. Continue reading “Christmas wishes to all”

This week started with the painter and electrician arriving on Monday morning and the house still hasn’t recovered! We’ve had new spotlights put in the hall and living room and are redecorating the living room at the moment. On Thursday and Friday we also had the back door replaced as the old one was falling apart. So everything has moved into the dining room and we have been holed up in the bedrooms all week! Luca has a cold which is getting worse, but Massimo seems to be very well.

On Monday Jemma’s mum came up to London to meet Massimo and Luca (and possibly to see her daughter!) and Massimo flirted as usual and had her wrapped around his little finger within seconds! On Tuesday we went off to Christopher’s where Massimo decided to be in a grump all day. We are coming to the conclusion that Max can’t cope with the level of heat that Christopher’s has but maybe he was just tired. He had a long nap when we got there and was a little better after that. Luca, on the other hand, was fought over by all the staff and I only got to hold him when he needed a feed. Massimo had great fun in the afternoon with Fiona, the occupational therapist, in the soft playroom, but I was given time off for a very welcome nap! Continue reading “Hectic just got worse”

Yes, we have finally decided that Massimo’s little brother is called Luca Roberto Hope-Mason.

Luca had lost 200g (7 oz) of his birthweight after the first three days but by his eighth day he had regained it all. He has since put on another 200g. I think it safe to say that he is thriving! Massimo is also growing well, however maybe a little too well. Having reached 18.3 kgs (40 lbs or just under 3 stone) and as he is beginning to look a little chubby, his dietician has agreed with us that he needs to go on a little diet. He has become too heavy for us to take him up and down the stairs. Continue reading “Massimo’s brother has a name!”