Massimo is still out of hospital …

…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.

We had a bit of trouble just before Christmas as our night nurse who was due to come on 22nd and on 24th, had to cancel the night of the 22nd. As we had last had respite on the night of the 20th, this meant that we had 2 nights in a row without respite. How Justin managed at work on 23rd I really don’t know. Anyway, in order to avoid three nights in a row, I had asked her whether she could do 23rd but we misunderstood each other and she didn’t come till the 24th! Justin and I were absolutely exhausted at this stage and were very pleased the holidays had started so that we could recover. We sincerely hope that this doesn’t ever happen again! Or at least not until Massimo doesn’t need attention at night!

We had a lovely Christmas Day and hope you did too. We spent it at home, just us, the children and the dogs. We had such a lovely, relaxed day but unfortunately we only took one picture! The one of Luca fast asleep on his Daddy’s tummy! We spent Boxing Day at Grandpa and Mal’s and there were lots of people there. We had a great day, lots of lovely food and great company. The day was over all too quickly.

On Monday 27th December, Lisa and Phil, whose wedding in September 2003 was featured here, came to visit with their gorgeous little 6 month old boy, Sam. We had a lovely time with them before they had to rush off and try to visit as many people as possible in as short a time as possible before their return to Katonah (near NY) on 1st January! On Tuesday Massimo was due to go to Christopher’s for a couple of nights but we had such a difficult night with him on Monday that we were, at first, very unsure of whether or not we should take him. We knew he was well enough to be out of hospital but the question really was “for how long”. In the end, because Max was well during the day and just difficult at night and with long discussions with Christopher’s, it was decided that Christopher’s would get an extra nurse in during the nights and we would take him down there. We didn’t get there until really very late but it was nice to have a couple of days off. Unfortunately Massimo’s trachy blocked off the first morning but with a little saline and some judicious suctioning all was sorted!

We shared New Year’s with Jools Holland on TV and both children in bed. Max had already got over whatever was the problem at the beginning of the week so it was all very relaxing. On Sunday my brother and his girlfriend came to visit and stayed overnight, which was lovely. Jemma kindly lent them her room! Monday evening Jemma was back from her holiday and we spent the rest of the week doing nothing of note, except we did go to Christopher’s on Thursday 6th January where Jemma and I were both treated to a “treatment”. Jemma had aromatherapy whilst I had a reflexology session. In the meantime Massimo was taken swimming as you can see in the picture whilst his little brother slept soundly in his buggy.

I think we had a quiet weekend that weekend. I remember that Patrick moved into his new house on the Friday and Justin went over to inspect the place on Saturday early afternoon and then we invited him and his girlfriend over for supper that night assuming his kitchen would be in chaos. Apparently though all was under control, but they did appreciate having a meal cooked for them (we hope!). Other than that I don’t think anything of note happened. On the Monday we had a very productive session with Jackie from Portage who was very impressed by Massimo’s recent progress. We have a few new ideas and things to work on and Massimo seems to enjoy the challenge.

On Tuesday we met Katy and two of her three children for coffee on the Northcote Road. We had a lovely time but this was ruined for Max as it rained very hard just as we left the cafe and he didn’t like the feeling of the rain on his face and for me as we were treated to a lovely ticket on the car because our blue badge happened to be upside down on the dashboard and the expiry date wasn’t visible!

We spent most of Wednesday up at St George’s Hospital as Massimo had an appointment for a hearing test. A standard hearing test can’t be used on Massimo as the tracheostomy makes too much noise and would falsify the results, so they had to revert to the “distraction test” where they make a noise behind him and see if he responds. Of course many things can affect how a child responds in this sort of test it was fairly inconclusive in our case. I’m absolutely sure that Massimo couldn’t frankly be bothered to turn around for the musical box they played, he’d already done it once (on the left side) and really there was nothing to look at! What was certain, however, was that there is considerable fluid behind the ear drum (also known as glue ear) and that the insertion of grommets when he is next under anaesthetic has been agreed. We also met up with Mr Daya and together we decided that it might be a good idea to schedule a bronchoscopy for Massimo whilst he is well so that we have some idea of what is going on with the tumour and also to avoid having to be forced into doing the operation when he is unwell, which is what usually happens. As yet, we don’t know when the operation will be. A bad thing happened on Tuesday night or Wednesday which we only noticed just before going to the hospital and it was that Jemma’s car was broken into for the second time. It was first broken into in November, I think, when they stole her CD player. This time there was nothing much in the car but they had a good rummage around just to make sure. Jemma decided to go home at the weekend and ask her Dad to fit an alarm on the car.

On Thursday and Friday we had respite so on Thursday we went out for lunch with Maz, Maddy and Olivia and on Friday we pottered around in Balham and got Luca’s passport photographs done. Yes, a passport application form has been sent off already! Later, as Jemma and I were having tea indoors, between say 4.30 pm and 6.30 pm when Jemma was hoping to leave for the weekend, her car was broken into again. This time a few CDs were taken but it seems as though in their frustration at not finding anything worth while in the car, they broke the window. This time we reported it to the police.

On Monday 17th, we had an appointment with Massimo’s oncologist. Our last appointment was four months ago. Dr Brock was really pleased is to see him and she was impressed by how well he is. We discussed the fact that his tumour is probably beginning to regress now but only an MRI scan will confirm that. We also discussed the possible side effects of his drug. Known side effects relate to the eyes, but it is possible that his hirsuteness and his weight gain can be attributed to this drug which is essentially an oestrogen blocker. Most importantly Dr Brock has also recommended that Great Ormond Street reverse their policy of not accepting Max into their PICU.

On Tuesday, we went to Christopher’s. We had a lovely day and Jemma and I went swimming with Massimo. We had bought a new swimming costume for him that has integrated floatation bits but ended up putting arm bands on him as well. He loved the freedom of not being in the rubber ring and he was really, really relaxed. It was lovely!

On Wednesday we had our second multi-disciplinary meeting. Lots of people attended; there were 16 of us, Massimo and Luca included. Nothing much was concluded at the meeting except that the package of care that we currenly have is lacking on several counts but that eveyone is restricted by various rules and regulations. Having established that no-one present had the power to change how things presently stand, it was agreed that a letter would be written to someone who could and would be signed by all the professionals present. I will go in to the ins and outs of what we need and what we are being given etc in a separate entry as it is fairly long-winded!

Nothing much to report on Thursday except a lovely visit from Granny and then from Lizzy. On Friday we did nothing of note, Jemma went home for the weekend. A quiet weekend at home with Justin working whenever possible, but there aren’t many quiet moments with the two of them! Actually as the weekend progressed, Luca became more and more difficult until we realised (with a little help from a friend – thanks Lisa!) that he was suffering with reflux. On Monday we took him for 8 week check and first set of injections – he was very brave – and got a prescription for Gaviscon and things have improved immensely.

On Tuesday, we were all due to have a haircut (except Luca of course!) and Max looks very smart now, although we were getting rather fond of his long, spiky look as can be seen in the picture here! Jemma and I had our hair done too. On Wednesday I did paper work whilst Max had respite, but got very little done between the phone ringing and Luca wanting me! On Thursday (yesterday) we all went off to Maidstone, with Justin and met Marina and Fiona from Christopher’s, at a place which sells wheelchair accessible cars. We saw a range of cars and a range of options. It was all very interesting and informative but we haven’t made any decisions yet. Today my aim is to get Justin’s tax return done but I’m being distracted by Luca and my attempts at finishing this extremely long entry!

It is Massimo’s birthday on Monday and we are having a tea party with the Grandparents on Sunday. I hope it won’t be so long before the next entry and I hope you like all the pictures.