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.
Also, about a week ago (Saturday 25th June) Max did his first Makaton sign of “more”, eg. Do you want to watch more Pingu?. As with all children it is an approximation of the correct sign but he looks so cute doing it and as long as we understand then that’s fine. The really exciting thing is that Max has discovered how to communicate with us. He does actually know how to make himself understood in many ways, but as he can’t speak, hand signals is going to be his way forward for communicating much, much more and above all independently from us. What I mean by this is that at the moment all he can do is either cry or react to something we are doing. Sign language will enable him to initiate dialogue as well as ask for things independently of what the adults around him are offering or doing.
Another area of development recently has been Max’s play. He is exploring his toys now in a way he never used to. We always used to really introduce toys to Max and teach him how to play with them, now with toys aimed at children around 6-12 months that doesn’t happen any more as he explores them all by himself. Also, his new independence means that he can choose the toy he wants to play with rather than relying on what we offer him. His ability to play on his own is also an improved new skill. Now he can move from toy to toy independently and there is plenty to explore around the house so he can keep himself occupied for hours at a time.
That is the exciting, exciting news. Other than that not much has happened in the last month or so. On 3rd June we went to Marwell Zoo for the second of the Dreamnight at the Zoo events. We went last year too. Unfortunately this year it was a bit of a wash out! On the way down in the afternoon we had torrential rain, but it had stopped by the time we got there, only to start up again a couple of hours later. Max was not in a very good mood and the giraffes enclosure which he had liked so much the year before was packed full. Of course as giraffes are very big and you can get close to them, they are excellent viewing for disabled and delayed children. Animals in big cages that need to be spotted are just too difficult for most of the children that attend the Marwell Zoo event. We’re glad we went but it was much more fun last year when the sun was shining. Hopefully next year the weather will be kinder to us.
As Marwell Zoo is down near Winchester we decided that we would brave our first weekend away with Max. Although we have been away with Max for a week or so on a couple of occasions, both times Verna came with us We’ve never just tackled the one or two nights away, mainly due to the complete upheaval that going away for a night with Max means and the fact that it seems a lot of effort for such a short time. However, with the new car, moving so much stuff around is really so much easier! This time we bit the bullet and planned to stay at my brother’s down in Southampton. We packed for the possibility of staying away two nights even though we had on planned on the one night. So after Marwell Zoo we drove down to Uncle Vic and Leanne’s. After unpacking the essentials and putting the children to bed we had a lovely meal all together. Although Max’s monitor beeped quite often in the night (and frightened the living daylights out of Leanne before she realised what the noise was!) we managed a bit of a lie-in as both children had gone to bed late the night before and were quite tired.
In the afternoon we were going to visit some friends in Winchester except they had to cancel as she was ill with flu. We therefore decided to go and spend the night at Grandpa and Mal’s who live not far from Winchester. So we packed up the car and unpacked the car and had a lovely evening and following day there. We came home on the Sunday pleased with our expedition and vowing that next time we were away for the weekend we would spend BOTH nights in the same place!
Max has been going to Small Steps regularly on a Wednesday morning now and I’m sure it is doing him some good. The main thing is that he is quite different to most other special needs children as they are more likely to have stiffness of the limbs, especially children with cerebral palsy, whereas Max has no stiffness, just developmental delay. A lot of the exercises we do with him there are focused on stretching and repetition which really is of little value to Max, it just makes him cross that we are forcing him to do stuff he isn’t interested in! Where he does get great benefit is the work that he does on lying on his tummy – which he loathes due to both the trachy and the gastrostomy; the standing and walking practice and above all the interaction with other children.
On Thursday 9th June we went to Bedelsford School for Max’s assessment. We had a very nice morning which Max spent flirting outrageously with all and sundry, especially Becky who is in charge of the nursery there. We have been conditionally offered a placement there subject to his statement, funding and acceptance by the school nurse. The morning we went they were having school photos taken so Max has had his first school photo already and apparently it is a very good one!
On Monday 13th June we met up with a couple of the NNU Mums and children. We went out for lunch together and then I had organised a session at the Brush & Bisque-it. It happily coincided with being a week before father’s day so the children 
(with mummy’s help) painted things for their father or grandfather and Max did something for Helen, our community nurse, who is moving on to a new role at St George’s. We had a lovely time and it was great to meet up and catch up with how everyone is doing.
On Tuesday 14th June, my Daddy (aka Nonno) arrived over from Italy with my uncle. They were on their way to my brother’s in Southampton from Luton Airport, so they took the train to Streatham Station where I collected them, they spent a couple of hours here so Dad got a chance to meet Luca and be amazed at the change in Max since he last saw him on Easter Saturday 2004!
On Thursday (16th June) most of Justin’s office came around for a barbecue – luckily a full complement is only 14 or so people – and the weather did hold out for us. Everyone got a chance to meet Max and Luca who were on pretty good form. We had a lovely evening but I think there were a few sore heads the next morning! On the Friday we went off to Christopher’s where Marina and Tania took both children off my hands whilst I had a lie-down. What utter bliss!
On Sunday was Father’s Day and our wedding anniversary. Justin and I both managed to forget the latter and we had agreed to ignore the former, so a pretty uneventful day. On Monday, Max’s one-to-one nurse from Frederick Hewitt Ward, St George’s popped round to visit and we had a lovely few hours playing and showing off with her and on Wednesday, one of Max’s respite nurses Claire came to visit and introduce us to her brand new little baby, Harvey, who is a cutie!
On Thursday (23rd June) Jackie from Portage came to visit and she was really, really impressed with how his play has developped. She also introduced two new Makaton words, car and ball. It is difficult to describe how his play has progressed but he is constantly problem solving and figuring out how things work in relation to each other, which is wonderful.
We had a very eventful weekend with Tati Lucy and Tonton Marco came to visit and help us hang pictures in the living room on Saturday and Patrick and Mary coming to help clear out the garage on Sunday. It is so tidy in there now it doesn’t look like our garage! On Monday Jemma, the boys and I went off to visit Granny and GrandBri in Cowden. We had a lovely, lovely day. 
The sun was shining and Max was on top form. Luca on the other hand was a little whingy but never mind, we had a marvellous time. There are a few photos here as evidence of our day. There is nothing else to report since then and amazingly that is a whole month covered. As I’m sure you can see in the photos, Luca has grown lots and can now sit up and fight for toys with Max. Our friends Tony and Simona had a little boy (as yet unnamed) on 27th June, another Italian/English mix and a friend for Luca.
