As I’m sure you can all guess things here are plodding along quietly and there really is nothing much to tell as 3 weeks have gone by since our last entry. After our scan on Tuesday 5th October, Massimo and I spent the following day with Granny and his new physiotherapist came to see us. The most important part of the session was that Hilary (the Physio) saw him for the first time NOT on PICU and extremely ill, but happy and smiling and on a mission to show off ever so slightly. We also discussed my new difficulties in handling Massimo and the imminent birth and the difficulties that this new addition would add to our daily lives.
I forgot to say that social services had been to assess us on Tuesday 28th September to see if we would be entitled to some assistance in employing someone to help look after Massimo and help around the house – a sort of au pair for special needs children. Apparently we are entitled to support however how much is something that will have to be assessed and which will take quite a while to sort out. Of course with the 10th December looming we don’t have that much time to play with! On top of this, the borough of Wandsworth charge its lucky inhabitants for the use of social services. This charge is also means tested. Fortunately for us they tell us that the charge for the use of social services will not outweigh the cost of the services provided – well that’s a relief! On top of this the social services occupational therapist implied (or at least this is what I understood at the time) that there was nothing much she could do to assist us with the lifting and handling of a very heavy little boy. Max’s Physio, Hilary – our star, promptly went back to the office and fired off two letters, one to each of the social services departments supporting our need for assistance and underlining the urgency of the situation. She has also set up a multi-disciplinary meeting, where people who care for Massimo from a health perspective (community nurse, physio, etc) and people who care for Massimo from a respite point of view (Christopher’s and Tadworth Outreach nurses) can sit down and discuss with social services what they feel are the family’s requirements and the nurses’ requirements in order that they may continue providing the respite care we so need.
Thursday and Friday (7th & 8th) were quiet days. Massimo and I spent lots of time together not doing anything exciting really. The weekend was also quiet with just a few household improvements getting achieved as we try to tidy up and make space for the new baby and the nanny. Monday was a lovely day as Jemma (our nanny to be) was due to arrive for 2 days work to get to know us, start learning to care for Massimo and generally help me out with the lifting and carrying. Firstly though we had a visit from the midwife and all is still well.
Jemma and I had a quiet afternoon on Monday, once she had negotiated her way through the London traffic and found her way to the house! She ended up staying an extra day and whilst she was here we went into Balham one afternoon, and above all we did lots of tidying and filing and sorting. Massimo and Jemma seem to like each other and she seems to have taken to his care easily and competently. She still needs to do a tracheostomy change but other than that she seems to have picked up all Max’s needs very easily.
On Thursday (14th) Jemma left, much to my disappointment, but Justin’s aunt came over to help out for the day and we had a fun time. We also had a session with Julia, Max’s speech and language therapist, and we are going to be working hard on teaching Massimo Makaton sign language as well as other communication skills. It is all very exciting as Massimo is beginning to really make his feelings about things known. If he is unhappy you will soon know! This isn’t that new a development, but in the past he used to just fall asleep if he was bored or unhappy, now he has a strop! The rest of that week and the following week were quiet.
The only things to report are that social service occupational therapy called on Friday 15th and have suggested three things to help us cope with Massimo’s weight. The first was with a view to coping with the fact that Massimo spends most of his time playing on the floor and lifting such a heavy weight from the floor is a strain on everyone’s back. The nurses are actually not supposed to move any weight over 10 kgs, and shouldn’t have been handling Max for quite a while, I, in my current pregnant state, find that lifting him puts far too much a strain on my tummy and isn’t something I should be doing at all! So in order not to lift him from the floor they suggested giving us a hospital bed to put in our living room for Max to play on. Of course this would totally take over the room, wouldn’t be a solid floor for him to move around on safely and would force him to spend good “well” time on a hospital bed when he spends enough time on one in PICU! Needless to say, we weren’t too chuffed with that idea. The second idea was to help cope with the fact that his bed is too low, and they can raise the bed to whatever height we wish. So I asked what was the correct height for a cot when I am 4’11” and Justin is 5’11” and our nurses are anywhere in between those two heights (and one just below that )? There is no one ideal height. The third suggestion was a full sized hoist in the living room, but of course as the hoist is quite big, and so is the hospital bed, we could only fit one or the other in so we would have to choose. I asked for some time to consider this!
Also on Wednesday 20th Massimo had the first half of his first ever flu jab. He did cry, but really only for about 2 minutes. Whilst we were at the surgery we weighed him and he now weighs a whopping 15.5 kgs (34 lbs or 2 stone 6 lbs). Actually that Wednesday was the first day since my scare when I was on my own all day, until J came home early to accompany us to the surgery. With hindsight this put quite a lot of strain on me, especially as I was conscious that J was running late, so after a day of handling him I also picked Massimo up from the floor, put him in his chair which has wheels, and wheeled him to his buggy, then transferred him to his buggy, got all his bits together and set off. All this activity, even though I had taken my time and done things as gently as possible, really tired me out and my walk to the surgery was painfully slow. J caught up with us easily and after the jab, J went to Tesco’s to pick up some bits whilst I set off home. J was home so far ahead of me he actually doubled back to take Max’s buggy off me! I seem to be walking ever so slowly these days!
On Thursday, Massimo was looked after by Claire who ended up being here an hour past her official leaving time as she hadn’t seen Massimo for so long she wanted to spend time with him getting to know him again. Once she left, however, Massimo was clearly overtired and had a bit of a tantrum, which lasted until he fell asleep at 6.25 pm! Unfortunately my attempts to settle him meant that I was picking him up, putting him down, cuddling him and trying everything I could, and this was just too much for me. The following morning I woke up with the most incredible lower back pain and many contractions. I thought I was in labour.
That morning Social Services Occupational Therapy came to meet the Tadworth risk assessment lady. The original Social Services Occupational Therapist was actually leaving the post on that day, so she came with her replacement. The lady from Tadworth came with Claire, so the four of them descended upon us at 10 am. Justin and I were due to be witnesses at a civil wedding ceremony at 11.30 am, with Massimo as the only guest. These visitors had been warned that we were going to be leaving them to it, and finally at 11.00 am they all left and so did we. I was still having contractions at this point but they weren’t very strong or very often so I figured we still had plenty of time to go even if I was in labour and that we would go to the hospital later. The wedding went off without a hitch and the happy bride and groom came back to the house to drop Massimo off with his nurse then the four of us went to Chez Bruce for lunch. We had a bottle of champagne to celebrate and the alcohol sent the baby to sleep and my contractions mercifully stopped! What a HUGE relief.
Of course this means that I have to slow down even more which is a real bore.
That weekend, my brother and Justin’s step-brother were here and the three men attacked our attic. Taking 6 car loads to the dump, we practically emptied the place, and we can now clean it up in preparation for storing proper stuff rather than 14 years of accumulated rubbish belonging to 3 people (myself, Justin and my brother)! We also made much more space in Massimo’s bedroom, which will soon be taken over as a result of our multi-disciplinary meeting on Monday.
Monday morning, 11.30 am, 10 people plus Massimo met to discuss Massimo, my, Justin and the unborn babies needs over the next 3-6 months. Unfortunately although Social Services Occupational Therapy came, Social Services Special Needs sent their apologies. The meeting was very good and the upshot of it was that we discussed what will happen when I go into labour – where Massimo will go (hopefully to Christopher’s), what will happen if Christopher’s can’t have him, and how we get him to Christopher’s. We also discussed contingency plans for either an early labour and NNU or a complicated labour requiring time in hospital for either myself or the baby. So lots of things in place or requested to cope with all of that.
Then we discussed Massimo’s moving and handling issues. This is when we discovered that the budget for the whole of the borough to spend on specialist equipment is £1,200 per month. As most specialist equipment costs at least that, this seems a ludicrously small amount. The problem is that special needs equipment isn’t a vote winner and therefore is cut down to the minimum. This means that although no-one disputes our need for equipment there just isn’t the budget to pay for it. Also all new equipment has to be requested, authorised, ordered and then hopefully delivered within about 6 months. As our needs are urgent, this doesn’t really fit the bill. So it was agreed that in the short term we would be given a hospital bed for Massimo to sleep on. In the longer term, Marina from Christopher’s would look into funding from Charities to help us buy a smaller cot bed which has the same height adjustable capacities, but which wouldn’t swamp Massimo’s room. In the short term, the OT would organise the hire of a stair lift. In the longer term, the stair lift would hopefully be purchased, however Social Services might deny this to us as Massimo is unable to operate it himself, a ludicrous piece of red tape which has frustrated many families in the past. Of course we can always try and buy our own, or continue to rent it – we shall see in time. In the short term we are to get a standard hoist in the living room to help with lifting Massimo from the floor. As these are quite large, in the longer term the OT or Christopher’s will look into funding/purchasing a smaller foldaway one which won’t swamp the living room. We will also be given a special needs potty which is on wheels and which, in the short term we can use for getting Massimo from his bedroom into the bathroom, in the longer term we will be looking into a hoist and tracking system. Also I have asked for a short term increase in the hours of nursing care we get to cover more nights (we currently get 4 nights a week) as one night we kept a tally of how many times we had woken to assist the little chap and it came to 14 times between the two of us. It is now taking me a good few minutes and huge struggle to get out of bed with the bump and therefore Justin ends up doing the lion’s share, which is unfair on him as he still has to get up in the morning and go to work. We shall see what happens.
On Tuesday the hoist arrived but without the paediatric sling, today the bed arrived. Tomorrow is our charity lunch. For those of you who haven’t heard about it, please email me and I’ll send you a copy of the invite. Also I will ask Justin to attach one here in some way, if it is possible.
You are all now up to date. Well done for persevering to the end. I’ll try not to leave it so long, but it is hard to get the urge to write when nothing significant is happening. The best thing that has happened is that Massimo has been at home for a full 4 weeks for the first time either in ages or ever!