We’ve had a busy week here at Stov HQ. Huxley somehow picked up the norovirus last Friday that has since taken down Grammy, Pops, and some of our friends who were over for dinner at the weekend. I must add that I did warn them that Huxley had been ill and they could cancel but they felt that worst case scenario they’d lose a few pounds before Christmas. I am sure they have regretted that decision since. Thankfully, so far, The Tidy Tyrant, Daisy and myself have escaped unharmed. Thank goodness as we are off on our cruise on Friday. A cancelled holiday does not a good Christmas make!
The physio came to assess Huxley on Monday. He’d been referred by his paediatrician. For no other reason than he has Down’s Syndrome. She seemed a bit perplexed as to why she was assessing him and asked us what we hoped they could do for us. We said we were really rather pleased with how he was progressing physically and the referral wasn’t because of anything we’d requested. She gave us some top tips though. Things that when explained seem really rather obvious but I hadn’t thought of before. For example, she said parents tend to place babies into sitting and standing positions rather then support them to move into those positions so they learn how to do it themselves. She showed us how to help Huxley move from lying down on his back to rolling on to his tummy. Already I can see him making better progress with his rolling. It also gave us ideas for helping support Daisy from lying down to the sitting position.
Today we met with the dietician to have a discussion about trying the blended diet. I didn’t want to go ahead with it without some professional advice. She was really supportive and is going to give us breakdowns of how to make up her calories with the correct ratios of proteins, carbohydrates and fats. We are hoping to start giving this a go once we are back from our holiday. Did I mention we are going on holiday on Friday?
We had Huxley with us and she was asking how he was doing. We told her we are happy with his eating as he is a bit of a gannet but that he is sick an awful lot and it seems to have caused a terrible rash on his face. This was diagnosed as eczema by the dermatologist but we’ve been using hydrocortisone since the middle of September and it just won’t clear. I had contacted a mum I know who has a little boy with Down’s Syndrome as I remembered he had a similar rash on his face when he was younger. Eventually they discovered he had a milk protein allergy. I asked the Drs if this could be the case with Huxley but they had dismissed it as unlikely. The dietician watched him do his usual puking up (2.5 hours after his last bottle) and asked if he also suffered a lot from mucus and catarrh. He does. A lot. He permanently sounds like he is choked with the cold. So we’ve been sent away with some milk that has the milk protein broken down to try. If it doesn’t we are then to try a milk without any milk protein. If he will drink it. Apparently it’s pretty disgusting. It feels good that we have something we can at least try. Fingers crossed.
I did my usual googling when I got home to see if a milk protein allergy is found more commonly in children with Down’s Syndrome. I discovered that nasal congestion and catarrh is very common amongst children with DS. This is because the skeletal structure of the mid-face to the throat tends to be cramped causing difficulty with normal mucus drainage. One strategy that they suggested might help is to try a dairy-free diet. I’m guessing the dietician knew this and that’s why she sent us away with the new milk. Fabulous dietician.
I realise I’ve not done a projectile vomit update for a while. It has been better. A little. When she has been sick there hasn’t been so much of it and it hasn’t been quite so violent. We didn’t manage more than the 4 days without a vomit though. Seems I tempted fate. Since then it has still been about once a day. Though currently we have had two full vom free days!
I have also been packing. What a mission. Because Daisy is tube fed, we need to make sure we have all the equipment needed to feed her and enough of her specialised feed. We need to make sure we can take this on as hand luggage as we can’t afford to have it go missing or she quite literally would starve to death. The airline were great and said that we could do this but I had to have a Dr’s letter to support it. No doubt it’ll take hours and hours to get through security with 14,000ml of milk on Friday even with the letter. And that’s not taking Huxley’s into account.
The other thing you don’t think much about when your kids don’t have any medical issues is holiday insurance. It takes a 30 minute phone call to disclose all Daisy and Huxley’s medical complications and ensure they are all covered. They won’t give us annual insurance and they don’t seem to be able to just pull up the file from the previous trip and roll it forwards each time. Out of interest I got a quote for a policy for a regular family with no medical issues I was quoted about £80/90 annually. It cost us £220 for 11 nights. Ouch. But we will go safe in the knowledge that if anything happens all will be well. I certainly didn’t have the time or inclination to call around and get more quotes.
The next task on the holiday to do list was to chase up the spare buttons for Daisy’s tummy. If it was to come out on holiday we need to have spares with us. Again not something you can pick up at the local shops. They had assured me 2 would be with us today but there was no sign by lunchtime and I gave them a call. Seems they are out of stock. Less than ideal. Anyway I explained the situation and the lovely lady went away to see what she could manage for us. Thankfully she has managed to get two released from their emergency stock and they’ll be with us tomorrow. Phew.
This afternoon, the community nurse came to the house to train me how to change Daisy’s button. This was the first it’s been done since it was inserted in October. It has to be changed every three months. It’s been done early this time because we are going away. It was felt it would be better to have a brand new one as there would be less chance of anything going wrong with it. I really, really, really, really hope nothing happens to it on holiday, despite us having spares and me now knowing how to change it. It was fairly simple process but it doesn’t slide in quite as easily as I expected. You have to give it a bit of a shove and it kind of pops into place. Daisy let out a bit of a squeal as this happened which wasn’t pleasant. But, hooray, another achievement for me.
We have a bit of a motto in our house. Always the hard way. Why would you take the lovely meandering path to the beautiful view when you can climb the rocky mountain to get there? It wasn’t enough for The Tidy Tyrant that we are going on holiday and have a million things to organise to get there. He’s been sent on a course in Denmark. He flies back tomorrow (Thursday) at 10pm. We fly out on holiday on Friday morning at 10am. I really hope his flights do not screw up. There is no way I can get two children that don’t walk, myself, two buggies, two suitcases and three pieces of hand luggage to Tenerife on my own. Actually I am sure I would find a way. But I hope I don’t have to…