Monkey has a trachy and Luca is one!

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. Max’s immunisations got delayed right from the start as he was often too unwell to have them, then once he started the chemotherapy he was not allowed any at all, and he was not allowed any for 6 months after the last chemotherapy dose. So in fact from about July 2003 until August 2004, Max could have no immunisations at all. Then of course there is a set order in which they are done, with a certain break in between each. So now, in this part of his life, Max is just like all other nearly 3 year olds.

We spent the day at Granny’s on 11th and had a wonderful time. Lots of playing and a very relaxed day. Then on Friday 14, Sarah and Moira Clews came for lunch and to visit. Again a very nice relaxed time was had by all and both Max and Luca were on top form, especially with their flirting! On Thursday 20th we had a speaking valve trial. We went in to Lion Ward, the ward for Day Surgery at about 10 am. After a bit of a social catch up with Max’s physiotherapist, Hilary, his Speech and Language Therapist came to join us for the trial. All we did was place the speaking valve on his trachy and watched what happened. Speaking valves for trachies work as a one-way valve – they let air in, but not out – thereby forcing the out breath up through the voice box and out through the mouth. Well, Max managed to breathe in but could not breathe out as the tumour really is not letting any air through at all. Soon enough he learnt just to take a big breath in and use his out breath to force the speaking valve off his trachy and across the room! Although a disappointing result, he did manage to make us all laugh! The following week was half term and Max went to another play day at Tadworth which he thoroughly enjoyed. Nonno died on the Wednesday that week.

The next day, Justin and I went to Southampton to be with Uncle Toio and to start arrangements etc. Aunty Barbara flew over from Italy to join us. Jemma took Max to Christopher’s and Luca to her Mum’s, then on Friday afternoon she dropped Luca off at Uncle Toio’s and we picked Max up on our way home. Aunty Barbara came with us and Uncle Toio and Leanne joined us on Saturday evening. It was very much a family time. As you know various arrangements were attempted and in the end we had the funeral in Italy on Saturday 12th November. The whole family went over, Max and Luca included. In the days in between we tried to have as normal a time as possible. We met our new architect – our original architect has too much on to do the next set of drawings that are needed so recommended another firm. We took the children to be weighed: Max weighs a very respectable 15 kgs and Luca weighs 10 kgs. We even phoned up a load of nurseries to see if we could find a local nursery that Max could go to. On Wednesday 16th November we had the memorial service in Southampton.

Before Nonno died, Justin and I had booked a long weekend break in Rome. We were quite determined to go and we were due to stay the night before at Granny’s so that we could drop Luca off and we could get a lift to Gatwick in the morning. This was Thursday, the day after the memorial service and only 3 days after flying back from the funeral in Italy. To say that the run-up to our trip to Rome was hectic is a huge understatement! We did get everything organised and we did go to Granny’s the night before. On the Friday Marina from Christopher’s came to pick Max and Jemma up and drive them to Guildford. With all the family organised (the dogs stayed at home and we had a dog sitter come) Justin and I were finally away!

We had a lovely time in Rome, the city is beautiful and it was so nice to be able to relax and unwind after such a difficult few weeks. We spent most of our time just enjoying our freedom, absorbing the atmosphere and appreciating the views. Rather than rushing around photographing everything we saw, so we only have a limited number of pictures, of which this one.

Our return from Rome was the day before Luca’s birthday. Granny and Luca collected us from the airport and Granny reported that Luca was “a little angel” and she wasn’t sure she wanted to give him back! In the car on the way home I discovered that Luca’s first tooth had broken through the gum and Granny told us that Luca, with no teaching from us, had learnt to do the sign for “more”! Back at Granny’s we had an early birthday cake, unfortunately Max couldn’t be with us, but we had a nice cup of tea and a slice of delicious home made sponge cake. Luca was quite taken by the candle and tried very hard to grab hold of it but once it was successful blown out, with a little help from Mummy, he had some birthday cake.

The following day, Daddy had the day off work, so we all went out for lunch. We went to Dexter’s Grill and Luca had his first strawberry milkshake, which he absolutely loved! In the afternoon, Maz, Simon, Maddy and Olivia came over to celebrate and share in some chocolate fudge cake. Luca was given a small piece but liked it so much that he kept trying to steal more from Maddy’s plate until she decided it was best if she moved out of the way. There were crumbs of birthday cake all over the floor thanks to both Luca and Olivia’s impeccable table manners which Luca then bum-shuffled through and what didn’t go all down him was stuck to his bottom. The outfit you see in the pictures is the outfit that Jemma gave him for his birthday.

On the school front, our various enquires found that all the nurseries that we called would happily accept a special needs child although not all had wheelchair access. Although Max doesn’t necessarily need wheelchair access as he can still quite easily be carried, it is the amount of equipment that goes with him that makes it easier if he can just be wheeled in on his oversized buggy. The first of the nurseries we called is just round the corner on Trinity Road and when I called, the principal said that not only do they accept special needs children but they love having special needs children because they contribute so much to the rest of the classroom. Well, you can imagine the effect that had on me! We went to visit the nursery a week later and they were thrilled to meet Max and very keen to have him. I’ll be sending off the application form this week. I have also spoken to the Special Educational Needs team and have asked to have this nursery named as Max’s chosen school on his Statement. In return they invited me to go over there to meet them and have a meeting with the head teacher of Greenmead so that we can discuss my concerns about Max going to Greenmead. I did explain to them that it really wasn’t appropriate because we had already discussed our concerns with the head teacher and that nothing in the world was going to change our minds that Greenmead is not the right school for Max. I did say, however, that I thought it would be beneficial for them to meet Max as I thought it would help them understand where we are coming from. I have since spoken to another lady there and we have agreed that we would name Paddock and Red Balloon Nursery on his statement so that he can get the benefit of both mainstream and special need.

On the development front Max has learnt a few more words, he can now sign “hello”, “goodbye”, “more”, “down”, “please”, “car” and “book”. The big change is that he is now ready to learn lots more words, but the key is to teach him words that are meaningful for him and that he can physically possible for him to do (it takes time for children to learn to control their muscles and so some signs are harder than others for younger children to do). Also when playing both Luca and Max are now interacting very well, at times playing together and at times definitely not. Usually it is Max who will take something away from Luca or turn his back on Luca whilst playing with a particular toy. Max is learning many new dextrous things, like putting a syringe in and out of a milk bottle (yes we do have normal toys, unfortunately all the medical stuff is what they prefer playing with!), building things with building blocks etc etc.

On the building front, our new architects have now been instructed to produce building regulation drawings and submit these to Wandsworth Council. They should be ready for submission just before Christmas or just after the new year. It takes up to six weeks for the Council to approve them (or not) and in the meantime the architect will start producing a schedule of works which we will then submit to builders for quotes. The quotes we have received so far are so disparate in what they cost and what they cover that it is impossible to compare them. This way they will all be quoting for exactly the same work. It is unlikely that building will begin before April next year, much to our displeasure. We do see the value of doing things properly but the delay is rather demoralising. One big advantage will be that the weather will be warmer and that will make it easier to put up with things like the heating not working as we are now planning to stay in the house whilst the work is happening.