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!
Max’s bum-shuffling has now taken on incredible speed and his falls are fewer and further between. His standing is getting stronger every day and where once he would only hold the position for a few seconds, with his ankles barely coping with the weight, he now willingly (which is crucial) stands for a few minutes at a time. This is free standing rather than in his standing frame. Developmentally he is doing some fun things. One day we were out in the garden and he picked up Luca’s milk bottle (it was empty at the time) and bum-shuffled over to Luca and offered it to him, teat first. Luca immediately opened his mouth to try to catch the teat. It was so sweet! A little later on he bum-shuffled over to the box of nappy wipes which was opened and helped himself to one. As he saw another appear in its place, he took the next one and would have carried on if I hadn’t shut the box. These things are small but in terms of Max’s development they are very significant.
Throughout the last 2 months Justin and I have been working very hard on our new project: a side extension to the house. When we first bought the house (over 10 years ago) it already had planning permission for a side extension. When we got married 6 years ago, we considered going ahead and doing the extension. We got planning permission, but we just could not get decent quotes from builders to do the work and as we weren’t really short of space at the time, we limited ourselves to putting in a new family bathroom and changing the old bathroom into an en-suite shower room for us. Now we are feeling rather short of space, mainly because with Jemma in our attic room and Max’s room full to the brim of equipment, Luca is still in our bedroom and really needs a room of his own. 
Also the plans include a downstairs toilet which would be ideal and rather important as we would like to start potty training Max. Lastly, but no less importantly, my father would like to come and live with us. He needs his own bedroom too, also as he has had an above the knee amputation, he would benefit from adaptations to the house that we will be including in case Max needs them in the future, for example wider doors for wheelchairs, ramp access in and out of the house, stair lifts.
We were granted planning permission on Monday 15th August and we have an agreement in principle for a new mortgage to pay for the work. We have had builders come for the plans to give us quotes and we hope to start the work by the end of September. The work will take a minimum of four months and possibly as long as six months. We will be moving out during this time and possibly renting somewhere. We need the stability of a good base to live in and although a friend has very kindly offered to have us to stay, six months is too long. Our biggest problem is our gorgeous, 
gorgeous doggies as most landlords will not accept pets: we don’t really want to be without them nor do we have anywhere for them to stay. We have found one estate agency which specialises in pet friendly rental accommodation and they told us that Battersea Dogs’ Home told them that the biggest reason for pets being given up is due to landlords refusing to allow pets.
As far as Max and school is concerned, we have been to see the last of the schools for Max that we were planning on seeing. We got there late and missed the tour of the school and then we realised that as it doesn’t have a nursery, Max wouldn’t be eligible to go there for a few years yet, so it was rather premature to be looking at it. Also, it is under threat of closure – a great pity as it is the nearest one to us. Also we have received Max’s draft Statement of Special Educational Needs and sent them our corrections and amendments by the end of July, however with the school holidays having started we have heard nothing more, as yet. Max’s need for a one-to-one carer whilst he is at school will delay his start date considerably. The school cannot advertise or recruit a carer until the statement has been finished and they get authorisation from the LEA. 
Once the carer is found, he or she needs to be trained and then hopefully Max can start going to school either two mornings or two afternoons a week. Hopefully he will continue to go to Small Steps one morning a week and to Little Chasers playgroup one morning a fortnight. With all of that and all his professional visits at home (physio, speech and language, occupational therapy, dietician, Portage, wheelchair services, health visitor) life will continue to be very busy.
Physically Max is growing well. His weight has reduced and he looks much more in proportion. A side effect of the steroids he was on is that they slow down growth and as his body gets rid of the steroids we are seeing a marked increase in his height. Max now weighs approximately 15 kilograms and he is just over 90 cms tall. Luca, as you can see from the pictures, is growing well and fast. This photo (on the left) was taken on 26th July just before Jemma and I decided to try using hair clippers on Max. 
We had it set on 4 but it looked much more like a 1! It was really very, very short!Now that it has grown out just a little and we have got over the shock of it being so short, we think it looks rather good. Most people have said that the new hairstyle makes him look very grown up, like a proper little boy. Unfortunately we currently don’t seem to have any current photos of Max so we need to rely on the ones taken by Claire! What do you think?
On July 5th Max had an MRI scan and the results are disappointing. Apparently the tumour is still growing, but it is growing at the same rate as he is growing so it covers exactly the same area. It is a wait and see game. Max’s oncologist still believes that at some point within the first 5 years, the tumour will start to recede of its own accord but it doesn’t seem to have done yet. 
On Thursday 7th July, Max was supposed to be going by to St George’s for an eye appointment which we have been trying to have since Max started chemotherapy back in the summer 2003. Firstly, the particular lady we were due to see had an 8 month waiting list. Our first appointment was set for February 2004. The day of the appointment at Great Ormond Street, Max was paralysed, sedated and the intensive care unit at GOS. When we attempted to get a second referral we were told that the lady was now on maternity leave and Dr McGowan wrote to her asking for another appointment. 
This was set for 7th July 2005. That morning the bombs went off in London, and like all other hospitals in London, St George’s Hospital was in a state of alert, which means that all non-essential appointments and operations are cancelled. We now await a new appointment. We are lucky in that we do not know anyone (or are unaware at the moment of anyone) who was directly affected by the bombs on that day.
With most of Max’s bits and pieces under control from the hospital, no-one has really paid any attention to his teeth, mainly because they have taken so long to come through and he still doesn’t have a complete set. I had a dental appointment and so I thought I would take Max and see if the dentist had any thoughts about how things were going for him. She said that because he teethed late, the teeth have much further to grow than they would normally have to, which explains why it is all taking so long, but she was concerned about the strange order in which they have appeared and suggested that the best thing to do was to get an early appointment with a paediatric dentist at the hospital so that any intervention can then be timely. We now await a referral and an appointment.
On Monday 18th July we had another appointment with Max’s oncologist. It was a disaster of a day as our appointment was at 12 and we didn’t get seen until 2. Whilst we were waiting Max’s suction decided to cut out on us, it was one we had been lent whilst ours was being repaired, and clearly the battery gauge on it was faulty. Luckily GOS had a charger we could borrow. Having seen the oncologist, Max proceeded to empty her tissue box onto the floor with great gusto. She was very pleased to see how well he was doing and we are to see her again in four months time. On the way home the traffic was appalling and I didn’t get home until 5 o’clock, where I proceeded to sit down for 5 minutes before setting off again to take my Daddy, who had been visiting for a few days, to Waterloo station! Exhausting!
A visit to Christopher’s is responsible for the first three photos of this entry. We were most impressed by Max on the pushalong train and we also spent some time in the soft play room. The fourth picture shows how Max has taken to emptying any container, including the washing basket and other than the bin, his other great pastime is emptying and refilling Jemma’s handbag! The next three pictures are just general pictures of the boys and then there are the pre- and post- haircut pictures, although the one of Max with his hands in a big box of toys was taken one of the playdays, but more on that later. The next three pictures were taken at Granny’s where we went one Sunday as the boys’ French cousins Dan and Emilie were visiting. They cousins had a great time together and Luca even went for a quick dip in Granny’s pool.
During the summer holidays, the Outreach team from the Children’s Trust, who we get our respite during the day from, often organise play days during the summer holidays because it means that they can give more respite to families, who all need more help during the summer holidays. Max has been to two play days so far and he has enjoyed both thoroughly. There are four photos here which were taken by one of the nurses (Claire) on the playday on the 9th August. The first is the one of Max fishing for toys in rather a large box. 
The next is one of the children sitting around a table. Max has his back to the camera but the little boy sitting opposite has a trachy too. Apparently the two of them play very well together, even though normally the other little boy won’t share toys with his siblings. The next is of the two of them playing together. The next two are of Max’s trying to put icing and decorations on some biscuits. He got icing everywhere, even on his eyelashes, but he had such fun!
The next three pictures are of my friend Deanne and two of her four children. We went to visit them one day and six children together make for a rather noisy encounter! The first picture is of Deanne and her third child, Ben; the next is of little Katie (baby number 4) who was born 10 weeks premature (2 weeks more premature than Max) but who has come through the ordeal absolutely fine; and the last is of Deanne holding Luca and showing signs of being broody – you would have thought that with four children she would have more sense!
The only other thing that has happened of note is that we had a visit from a chap from Scanmobility. We are concerned that the cot sides on Max’s hospital bed are really not secure enough nor are they high enough. Max thinks that throwing things over the cot sides and looking over to see where they have gone is a fascinating new game. Once he learns to sit up on his own and he grows just a little more, he is likely to fall out of bed. Apparently beds are a nursing issue not an occupational therapy issue, at least in the borough of Wandsworth. Of course the nurses can offer us nothing more than what we already have and it really isn’t good enough. So this chap came from Scanmobility and we discussed Max’s needs and the bed that would suit him costs about £3,500. 
We are hoping that we might be able to get this funded by a charity and then when Max grows out of it either but not needing this level of support or by becoming too big for the bed (it should last him at least 10 years) we can donate it to Christopher’s. If we get the extension done, then it would be good timing if we could get the bed delivered in time for us to move back into the house. First we need to find a charity willing to pay for the bed! Mind you, if you compare it to the cost of an incubator (£12-15,000), the bed is cheap.
Amazingly enough it is now nearly the end of August.