Author: Silvia

We went to Christopher’s today, where Massimo had a grand old time playing in the little chair and table they have there, then we went swimming and then we did some messy play and we made a card for father’s day. But best of all we managed to get purple paint (in Lizzy’s honour) absolutely everywhere! The last picture is of Max in a hoist. If he continues to grow at his current rate we might need one of these at home. We also weighed him, in the hoist, and he now weighs 13.3 kgs (29 lbs 5 oz or 2 stone 1 lb 5 oz). No wonder we are beginning to struggle when we pick him up!

Since my last entry we have been fairly busy, within the limits of my now pregnant (and therefore tired) state! Wednesday 2nd June was a quiet day at home, with just a quick trip up to Balham for a breath of fresh air. Thursday heralded the arrival of Charlie and Sadie our good friends who decided to leave London last year and bought themselves a derelict castle in Scotland to move into (www.dunanscastle.blog-city.com)! They arrived with their new(ish) 5 month old baby daughter Harriet and I’m sure you will all agree she is a little beauty! It was very interesting to watch the reactions of the dogs and Massimo to the arrival of a little baby who cries, and LOUDLY! The three of them were all stunned, but soon got used to it, and in fairness she didn’t cry very much at all! Claire, Massimo’s respite nurse, arrived at about the same time as the D-Ss, so Sadie and I went running out the door for a little shopping and a cup of tea. The evening was spent extremely companionably, and the children were extremely good that night for us. Continue reading “Marwell Zoo, Christopher’s, Portage and more!”

On Saturday night, by 10.30 pm we were on our way home from the airport, Max fast asleep in his car seat, Verna waiting for us at home. We got in, Verna put Max to bed and we unloaded the car and had a cup of tea. When we finally went up to bed, we’d heard Max’s alarm had been going off quite regularly and as I walked into his room I asked “are we calling an ambulance?”. I was only joking, but in fact Max had spiked a temperature and his heart rate was getting higher and higher. When it hit 217 we also realised that he was leaking all his milk, and therefore also his ibuprofen and chloral hydrate (sedative) and that we were unable to calm him down at all. Also he was so upset that he was putting so much pressure on his gastrostomy that we thought it would pop out! We called an ambulance and in A&E they gave him a paracetamol suppository (or two!) and by the time they took effect the crisis was over. We did however leave him in overnight to say hello to the nurses as we suspected that was what he really wanted. He is on another course of antibiotics, but seems really rather well in himself now.
Continue reading “Home and straight to PICU!”

Since my last entry we had a quiet Tuesday, Amanda and Thierry had work to do, but the children weren’t at school because the teachers were on strike! We lounged by the pool and Max decided to have a bit of an off day. We never quite figured out why, the question of teeth coming is always present but we have seen no hint of enamel yet. However by Wednesday he was back to his happy self. Wednesday morning we took Verna to the airport and she returned to her motherly duties. We think she had a good time, it was a change if scenery if nothing else! Continue reading “We are home”

Hello all from Le Ticoulet, Villematier in France! Amazingly enough we have made it – or maybe it is just amazing to us!

We got up bright and early on Friday morning (4.15 am) and poor Massimo looked thoroughly put out at being awoken in the middle of the night. We piled everything into the car and off we went, late of course! Justin dropped me off at departures where Verna was already ready and waiting but we still needed the assistance of a porter (who happened to be Italian and very helpful) in order to get us all to the check-in desk. Whilst we queued, J parked the car before he joined us at check-in. Altogether we had 75 kgs of luggage, 15 kgs overweight. Our lovely check-in lady was only going to charge us for 8, but her colleague said if it is medical equipment just let it go, which was absolutely wonderful.
Continue reading “Salut from France”

I picked Massimo up from PICU this afternoon, after spending a good few hours waiting to see a surgeon about his gastrostomy. We are now home, I have an absolute ton of stuff to get ready, but it looks as though we might just make the flight. His breathing isn’t brilliant at the moment, but it is manageable. Our next hurdle is ensuring that easyjet will allow us to board the flight. We have promised PICU that we will try to put regular messages on the website, even if all they say is “still here, doing OK” – so if you see these you know why they are there! We are under strict instructions to send them a postcard and to call the minute we get back. I do believe they are more concerned than we are!

Bonne vacances!

When I went to see Massimo later on the Tuesday afternoon he seemed very settled. I was told that he had slept lots and his secretions from his trachy had become whiter in colour (rather than yellow) and his temperature was under control with little or no paracetamol and ibuprofen. We had a cuddle but he soon fell asleep again. He obviously had a lot of rest to catch up on and he was oblivious to his father visiting later on. Of course he was wide awake later on and a little unsettled, so he was given a little sedative and he went off to sleep again.

Over the day Massimo’s CPAP settings had been reduced in two stages, from a peep of 10 to a peep of 5. Then this morning he was taken off CPAP and put back on his thermovent (Swedish nose – the white filter that sits on his trachy protecting his lungs from dirt and cold). He was originally on oxygen, but as this is his favourite toy, he was playing happily with the tubing and saturating well (maintaining good oxygen levels) so they turned the oxygen off. He remained like this all day, and although his breathing is still a little wheezy and he is still working hard to breathe out, he has managed well. We could have brought him home tonight, but we decided that we need to get a little more input from the doctors as we want to discuss putting a longer trachy tube in and we would like a surgeon to have a close look at his gastrostomy, which is currently behaving, but the hole doesn’t seem to be healing properly.

So it looks as though the trip to France is still a possibility so today I packed all of Massimo’s medical equipment and we have one very large and very heavy box, and a further two smaller, lighter boxes. I have also packed his clothes. Tomorrow morning I will attempt to pack the rest. I have little hope of getting any sleep on Thursday night as we need to leave the house at 4 am and there will be lots of last minute things to do!

Fingers crossed.

In the last post I mentioned that Massimo was really very grumpy on Sunday morning, but that he was better in the afternoon and OK overnight. However, on Monday around midmorning he started being really grumpy and wanting to sleep but not staying asleep and constantly wanting to be held. Then at 2.30 ish he went very purple and clammy. He was doing a poo and I put it down to that but even after he had recovered he was still very unhappy, very restless and clearly in discomfort. The paracetamol and ibuprofen I had given him seemed not to have made any difference at all. At around 3.30 I called Justin in despair and he came home to help. By 5 pm, with no improvement and signs of a temperature starting I called PICU for advice. The sister on duty and myself decided that he probably had a bacterial infection (on top of the viral one) which would definitely account for the grumpiness and that a course of antibiotics would be the next step – clearly not a PICU requirement. We went to the GP who listened to his chest and prescribed the antibiotics. She was very concerned that his breathing wasn’t good and that if there weren’t signs of improvement by the evening we should take him to casualty. It was 6.30 pm at this point. Continue reading “Early morning neenars to PICU”

Justin has decided to upgrade the website and this will also mean that in due course we can properly fix the problems we have been having with the photos not appearing as thumbnails and the old photos not being there any more. A little more patience on that one please! We hope you like the new look but any comments positive or negative, please send them directly to Justin! One change which is important is that from now on you will automatically receive an email with each and every post rather than just with the important ones as we have been doing in the past. Should you wish not to be hassled by constant emails, please feel free to unsubscribe yourself from the notification list. (The email notification and subscription bit isn’t working yet – sorry – J)

Back to Massimo. Continue reading “Welcome to the new look website”

Last Friday we spent a lovely day. In the morning we met Katy and her three terrors (they are all absolutely adorable!) and then spent a lovely hour at the Paint and Bisque-it with Maz and Maddy painting ceramics. Saturday and Sunday were spent quietly at home and all was going rather well, then Monday came along…
Continue reading “A blue episode, neenars and a trip to PICU”

This last week has been as busy as ever. On Tuesday we spent the day at home with Tatie Lucy discussing and preparing for the charity event of the year to be held in September to raise money for the Neonatal Unit at St George’s Hospital in honour of our little man. For now all I will say is that it should be a fun evening and there will be an auction of promises and a very good raffle (at least that is what we are hoping for!) Continue reading “Another busy week”

After our visit to Christophers on Monday 22nd March, we had two quiet days at home, then on the Thursday we were planning to go to the butterfly house, but that particular day they had three groups of some 30-60 schoolchildren coming, so we decided it would be wiser to postpone the outing. Massimo’s Granny was due to come and spend the day with us so staying at home wasn’t a hardship. Granny came loaded with a paddling pool and 300 coloured balls. The ball pit was put up as fast as our puff could blow up the pool and Massimo has been enjoying kicking the balls out for Jasper and Horace to chase after ever since!
Continue reading “We’ve been having so much fun!”

Whilst exercising and learning with Anne at Christopher’s we were introduced to the versatility of the stuffed snake in helping Massimo improve his positioning and learning to sit up. We duly bought a snake, largely thanks to Sheila who was going to IKEA anyway! On Sunday we placed Massimo on his mat with the snake behind him to teach him to lie on his right side. I went off to get Dad from St George’s whilst Justin got lunch ready. On coming back into the living room, J found Massimo had completely moved and was showing how pleased he was with his new snake, as demonstrated by this picture!

After a rather peaceful weekend, with lunch at Dexters on Saturday with the Viñas, Massimo and I set off this morning to go to Christopher’s with Maz and Maddy. As you can see from the pictures both Maddy and Massimo have grown enormously since this picture was taken!
Continue reading “Another magical day at Christopher’s”

We have come back from a fabulous day at Christopher’s and have booked in to go twice next week!

The day started badly as J and I overslept and didn’t leave home until after we were supposed to have arrived, but the traffic was good to us and Marina didn’t mind! When we got there we immediately got into our swimming things and into the pool. As you can see from the picture, this was a complete success! In the pool we held him gently at first on his back and then in a rubber ring on his front but the biggest success was in the ring on his back, as can be seen in the picture with Justin. He also really enjoyed the jacuzzi but all footage of that is on video.
Continue reading “What a great day!!!!”