Apr. 19.

New Parent Governor

Just before Easter Daniel’s school, South Downs Special Needs School, sent home a letter asking if anyone would be interested in the role of Parent Governor. I thought this would be a fantastic opportunity, having a say in the running of the school, helping to shape the vision of the school’s future. So I applied. I heard nothing over the Easter holidays. We coped relatively well with the Easter holidays. We had a few meltdowns during the latter part of the second week, but I think Daniel and Matthew had had enough of each other by then and were pressing each other’s buttons non stop. We got through it and out the other side though, relatively unscathed. A couple days ago I had a telephone call from the school saying that the Head would like to meet with me to discuss the role of Parent Governor. I was very excited. And nervous! I prepared for the interview really well. When I went along everyone was so friendly. It’s such a wonderful school. I was made to feel welcome from the minute I arrived. I went in for my meeting with the Head. We had a good chat about my vision and my reasons for wanting the role, and about how I see the role of Governor. I was so suprised when he offered me the role on the spot! I thought I would have to go away and wait at least a week to hear anything, but he said immediately that he would like to have me on board on the team. I guess they did a pretty good paper sift before meeting with me. I am so pleased. And so excited! I get to have a say on what the budget is spent on, how the curriculum is set out, who is appointed in senior teaching posts and much much more. I get to join a committee as well, once I have decided on what area I want to focus on, and I attend regular meetings throughout the academic year. I will be a parents’ advocate. My first meeting is next week and then the first Governors’ meeting is the end of June. So I shall let you know how that goes. I am looking forward to the challenge. Something I can really get my teeth into. And as the Head said to me, with Daniel being in Reception, I have the potential to be on the board of Governors for the next twelve years. A lot can happen in twelve years!

And whilst all this excitement has been going on I today found out which Infant School Matthew will be attending. We got our first choice which is Stone Cross School and we are really pleased with this. He goes to Stone Cross Pre School now so hopefully a lot of the children will follow him to big school in September! He is really looking forward to wearing a green jumper. Bless him. Brilliant news.

Andy has been unwell recently. One of the main reasons I have not written a post for a while. He has been diagnosed with Hypertension (high blood pressure) and high cholesterol. He is now on anti-hypertensives and statins and an Aspirin a day. Not good. He had chest pains over the weekend and was admitted to A/E via ambulance. They believe he may also have Angina. He now has a GTN spray. All not good and pointing to a major lifestyle change. Andy wants to be here for many years to come to look after the boys. So we are both now on serious diets in order to lose weight and bring down the blood pressure and the cholesterol. For all I know I may have the same problems, but I have not been checked. Andy was checked because he kept getting such severe headaches. However, my mother has just been diagnosed Glaucoma so I need to keep a regular check on my eyes. So I have just been online to book an eye test! You really can’t take your health for granted. It’s scary stuff.

Tomorrow I am taking the boys to a local Gym at tea time. The local charitable group Battle SuperStar Kids have organised the gym to be made available for children with special needs for 90 mins and we are going to go along and let the boys have a run around and a go on the trampolines etc. The school say that Daniel is getting more agile at PE and is enjoying it more, so I am hoping that he will enjoy this opportunity to have a run around and burn off some energy. I am sure Matty will love it! Fingers crossed there will be no meltdowns. Andy can’t attend as he has a function to go to so I am taking my Dad with me. At least if Daniel does have a meltdown and doesn’t enjoy it, it will give my Dad more of an idea of what I am up against every day. I think it is hard for my parents to understand. We shall see. Wish me luck!

I hope you all had an uneventful and happy Easter hols.

Sally xx

Mar. 16.

Daniel’s Started Eating!!

Huge news! Daniel has started eating!! He had a cold and a nasty virus the same time I was struck down ill. And he really started taking on board less formula. We were worried, but thought it was simply because he was ill so he wasn’t hungry. But since then he has not really built back up. He often flatly refuses formula. This is his only source of nutrition so it’s a big thing to be refusing. He has gone from five or six bottles a day to say three a day, and not drinking all of it either. So probably equating to two bottles a day. This is a massive drop.

But, alongside this, he has started eating loads. Now when I say eating loads, I mean yoghurts, Ambrosia custards and mousses. Nothing solid. But it’s a start. And he has been eating stacks of the things. He is finally eating me out of house and home! He is finally costing me money to feed. I have been buying these desserts by the truckload. And he is still licking his crisps too for savoury input. I have been trying to say first formula, then mousse. Sometimes this works, and we are still getting a few Fortinis in a day. But most times this doesn’t work. He just refuses. So I got onto the Dieticican. It was always going to happen that Daniel would get bored of solely taking on board formula. Who wouldn’t get bored of just essentially milkshakes.?? She was actually available on Friday to speak to which I am really grateful for. I thought it would take two weeks to get any response from her knowing the NHS, but she was in her office and they put me straight through! She was more than helpful. The plan is that he is now being prescribed adult nutritionally complete desserts and juices. We are to try a combination of these and the desserts that he is eating from the shops like yoghurts etc and see how we get on. The prescription was faxed over yesterday afternoon and it has been ordered and will arrive on Monday morning. This kind of stuff is not kept at the pharmacy routinely. They have to get it in. So wish us luck for Monday evening!! I shall be trying Daniel with this new diet. Basically he can’t have too many of the adult ones as they are high in protein, which will be detrimental to his kidneys. But he needs the calories and nutrients that are not in off the shelf desserts. So he needs a combination of both, with the nutritionally complete juices, to keep him going. I think if we offer him them and no alternative, he will start to take them. He will be fine. He is coming on in leaps and bounds. It is so exciting!! He has finally turned a corner. It is basically like having a weaning infant in the house. He is starting at the beginning. Who knows where we shall end up? I have confidence in him. I think he will do well. I must let the Evalina Hospital know of his progress. They will be so chuffed. He is coming on in leaps and bounds. And so much of it is the perseverence and expertise of the South Downs school. They are brilliant.

He went on a school trip yesterday to the local zoo and had a whale of a time apparently. He even went on the Thomas train, which he always refuses to do with us, so he is obviously gaining in confidence. All really exciting stuff. I am thrilled. So nice to be able to post such positive news. His constipation seems to be under control again at the moment too so that’s a huge bonus. He has been really chirpy today. He is eating and pooing and all is right with the world!!

Sally xxx

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