We have a copy cat!

Luca peering over the tableLuca copies Max in absolutely everything he does and so he is now bum shuffling too. At first he just noticed that Max seemed to go up and down with his torso and somehow that propelled him forwards, so Luca used to sit there for ages bouncing up and down hoping to move forwards too – The boys in a cageunfortunately if he’d just eaten it would make him sick instead! Eventually he started moving forwards slowly, really more by default than anything else, but he has now developed a technique of his own. So now we have two little boys who cannot be stopped from getting into mischief!

Luca in the kitchenMax’s bum-shuffling technique is now so sophisticated that he now moves at an incredible speed. However, and much more importantly, Max’s strength in standing is improving greatly and he can now take a few steps, aided either by holding him at the hips or by his hands. They aren’t very steady steps Max asleep on Daddy and he loses his confidence if he has any inclination that we are about to let go of him in any way, but whereas last week, if we set him up standing but either holding on to something or leaning on something, he would cry, this week we’ve turned it into a game which produces much laughter and pride.

No, I'm playing with thisWe have been up to little of interest lately. Things have been hectic as usual just with the usual run of the mill stuff. Nonno has been up to visit lots, which has been great for him and for the boys. Both Max and Luca find his wheelchair (or wheelbarrow as he insists on calling it) and his crutches objects of great interest. Luca finds the brake lever on his wheelchair the perfect crutch We'll see about that! to use to pull himself up to standing and Max thinks that pushing the wheelchair is a great laugh! Jasper thinks that the wheelchair makes a great kennel and tries to sit underneath it at the most inappropriate of times. So all in all it is fun and games. The only other real event, was that we spent a family day down at Christopher’s last Friday. We had a lovely day, we all went swimming, spent time in the sensory room and just had a lovely relaxing day together. Luca in the soft play roomIt seems such a long time since we had one of those and Christopher’s is a great place to do it. We also spent the day with Lisa and Phil and their adorable little boy Sam when they were over from the States. It is amazing how quickly the children grow – Luca was a newborn last time they saw him and Sam was only about 6 months old. Now Luca is bumshuffling and Sam is walking!

Max playing ball On the school front, we have spoken to the headteachers of both Paddock and Greenmede Schools. Both believe that they can meet Max’s needs on an educational level. Just to clarify (and I hope I remember this correctly) Greenmede School is classified as a school for children with Severe Learning Difficulties and Physical Disabilities and Paddock School is for children with Moderate to Severe Learning Difficulties. I can throw it ...As all the information we have comes through Wandsworth, I don’t actually know what classification Bedelsford School has but our impression of it is that it incorporates both the Greenmede and the Paddock Schools’ pupils.

We have recently revisited Paddock School and due to Max’s recent incredible development we are more than convinced of its suitability for Max Wheeeeeeeeeeeeee! (and they are convinced of its suitability for Max too), probably now over and above that of Bedelsford School. The advantage of this is that Paddock School is in the Borough of Wandsworth, as is Greenmede, but Bedelsford is not. Unfortunately Paddock School have a maximum number of 6 pupils in their nursery and they currently have 5 children with a 6th due to start in January. As 5 of the 6 pupils have just started there, there is little chance that someone will move up the school in the near future freeing a place for Max. Daddy and the boys swimmingAs Bedelsford School is out of borough we are going to have a tough time trying to get Max into it, but if Max can’t go to Paddock and if Greenmede proves not to be stimulating enough, we will have to fight for Bedelsford. We are due to revisit Greenmede School in a couple of weeks and we are hoping to speak to Bedelsford School again soon.

Max looking cool, calm and collectedOn the extension front, we are not much further forward and have nothing of interest to share. We are waiting to get new drawings from the architect, apparently they are building regulation drawings which are much more detailed than those for planning permission. Building cannot start until we have those and two of our builders won’t quote without them. Our architect is Luca asleep in Max\'s chair really busy at the moment and we have yet to determine if he is going to do them for us or if he is going to recommend someone else. At this point in time we would be surprised if work started before January. We have however finalised the mortgage and we are in possession of the money to do the work. So an essential element is in place.

4 thoughts on “We have a copy cat!”

  1. Hi everyone, the boys look fantastic. Max’s achievments and development are just wonderful, he is so amazing. We are very impressed with the bum shuffling! Max looks so good in the photos, very different to the baby we knew on PICU, he is all grown up, a proper little boy. Riley is also doing well, had a brief visit to PICU (3 days) back in June with a chest infection and a broken leg a few weeks ago, but apart from that all is well. We too are currently going through the very long process of getting Riley a statement so he can go to nursery. Also, Riley is on the waiting list for a wheelchair to be made for him as he is getting very big and very heavy. We are also waiting for his brother or sister to arrive as I am now almost 7 months pregnant. Riley knows there is a baby in Mummy’s tummy, but I don’t think he could ever imagine a baby in Riley’s house!
    It’s so great to see that Max is doing so well.
    Big kisses to the boys xxxxx
    All our love, Hayley, Terry & Riley xxx

  2. Hi everyone, the boys look fantastic. Max’s achievments and development are just wonderful, he is so amazing. We are very impressed with the bum shuffling, him and Luca will be running around soon! He has done so well, you must be so proud. Max looks so gorgeous in the photos and very healthy, very different to the baby we knew on PICU, he’s all grown up, a proper little boy. Riley is also doing well, he had a brief stay on PICU (3 days) back in June with a chest infection and a broken leg a few weeks ago, but apart from that all is well. We too are also going through the very long process of getting Riley a statement so he can go to nursery, which is a bit of a scary thought – how time flys! Riley is on the waiting list to get a wheelchair made for him as he is getting very big and very heavy. We are also waiting for Riley’s brother or sister to arrive as I am almost 7 months pregnant, Riley knows there is a baby in Mummy’s tummy, but I don’t think he could ever imagine a baby in Riley’s house!
    Max looks so so great, it is such a pleasure to see, what a star.
    Big kisses to your big boys XXXXXX
    All our love, Hayley, Terry & Riley xxx
    p.s. I love ‘Welcome to Holland’, it is stuck on my fridge and it does give those who haven’t been blessed with a disabled child to get a small idea of what life is like.

  3. Dear Silvia (Max and Luca),

    Just wanted to say a big thank you for taking the time to see us (the very green
    med students!) and sharing Max’s story. It was amazing to meet Max and Luca, two wonderful little boys. Your story, at least for me, put into perspective again why I want to do this and I will hopefully try and learn from your experiences (if I ever get that far!).

    best wishes

    Jay

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