#caring #family #Kids #nightsout #exams #daycenter #music #books #EmoTheEmotionalElf
Good evening Hope who ever is visiting this blog and reading this post is doing ok, it’s so easy to write a blog and then just get on with your life but I am always thinking about the people who give up thier precious time to visit and read what I write. PLease Excuses the link video link that isn’t working having some tecinicle issues awaiting support hopefully i will get to remove it and edit it out after publishing. maybe it was to big a file. also had to renew buisness plan though it did it automatically after I changed to monthly payments.
What brings them back again. Sometimes I get a littles writers block more this year maybe it is just that so much has gone on and so much is changing constantly life is suddenly beginning to get back to that full schedule, only it still isn’t quite the same as before the pandemic. Before we had pretty rigid routines for everything thing. Times and places were the same even down to when shopping was done we have a few more weeks till the schools and colleges go back here I am not going to quite know what to do with myself when everyone is out of the house. I will have more time to focus on writing.I love it so much though. So now I have to stop procrastinating and just write from the heart.
First I am going to start with saying the children passed thier exams you know I think not having that pressure of exams and performing on the day and all the anxieties that go with it I think has definitely worked in my kids favor they have always been better in class then exams. they have had a real confidence boost which will take them in to the new academic year on a great start. knowing that they are more then capable of receiving and achieving great grades.
Niki is going on to level three Health and social care this term the second year of her 2 year course her college phone and made sure all her needs are added onto her provisions next term and they have actually added her walking stick into that now she finally has the go ahead to take it in with her. we are still waiting for her pain management assessment and appointment.
Jake is going into 6 form and is studying business studies, film studies, Geography and music EPQ, he wants to do the music one on the emotions around music and song writing , what they make you feel think ,this is very good for him firstly because of his emotional regulation and understanding that but also for understanding others perspective.
He really gave such thought into what subjects he choose and his reasoning behind them, for him they are the best choices. something he finds enjoyable and easier , something that helps reduce his anxiety and understand more, something that will challenge and stretch his mind and something he has difficulty with. All these thing will bring his skills and resilience up. Jakes nose has healed from his op to repair the break, he also has had his second vaccine, so will be good for school, the nose op was a success and its healed straight now the swelling has gone and he is happy with how it looks. we are having issues getting him to wear his glasses, since they have been changed but again I think it is more to do with what others make him feel when he wears them super self conscious. we are still waiting for the neurology appointment for him migraines.
Little celebration treat flowers for them both and Pringle The bubbly we are saving for another time.
We were being so silly of results day , the fact the kids are proud of themselves is the best feeling Jake said if thier weren’t cars about he would of actually skipped down the road. but I was trying to capture his big smiley he had but he kept ducking just as the camera captured the moment he was laughing so much.
Whatever Life brings next for them. I have full faith in hope in my heart that this is the beginning of something special for them , a more in depth scene of self more understanding of themselves, more strength to get them through the anxieties and struggles they may face love all around them to flourish and support and continued understanding into thier health needs.
Out and about First thier was my Great Nephews $th birthday party His mum made it a day to remember it was beautiful going to the outside garden party and even Spiderman turned up to give the birthday boy a surprise visit and ride in his car. All the kids and adults loved it. his sweet reaction of running into Spiderman’s arms all the kids chasing the car down the street. then coming back and waiting to take turns sitting in the car for a photo, while i can’t share all the photo’ I have picked a few of my favorites with my own family to share.
There was games find the super Hero’s the older children hid them round the garden, there was whats the time Spiderman, Niki did a little spider web on all the children and adults that wanted it’s faces. Uncle Tony was on build a bat cave as he brought it for Noah was very humorous watching him spend an hour and half putting it together, my Jake gave him a hand Noah lost interest in watching the process after 5 minutes and played dinosaurs vs super hero’s with me . What he didn’t realize is that while we were playing i had actually got him to tidy his toys neatly for his mum to have less work after the party finished. He reminds me of Jake when he was little thier interests at that age are the same. Like Jake he could name the dinosaurs easily he even sorted them in to meat eaters and plant eaters pretty good going for a four year old. He did tell me off when i tried to ask him in a random order what thier names were made me start in the right order at the beginning of the line. He got his uncle and uncle Tony dancing to Zorba the Greek with him. before putting on the baby shark show multiple times you got to love kids when they want to show you something.
My hubby and his brother had us all confused it is so funny how much a like they are my hubby is the big brother when Tony first came in with his back to us I really though it was my good job I didn’t go an pinch his butt or give him a big hug, lol It was nice all the boys and Ellie were all together again its been so long. It was a real beautiful day.
Night out with Grandad
As Grandad wasn’t able to be thier for Niki 21st birthday because of lock down he took us all out to karaoke to celebrate her exam results and birthday we took a little cake, got all dressed up and had super fun.
I love the Picture of me and my Dad
A clip from Niki Singing bless her .
I got up too excuse the voice but I find it really relaxing to sing, it also helps me get over that stage fright a little They gave us these little covers like face mask to put over the mike we all got a fresh one at the start of the evening.
We gave Hayley the Job of organizing the surprise birthday cake with the staff she even managed to keep the surprise from Niki this time never tell Hayley what you do as a uprise she always reveals it.
Moving the blog on to Hayley now she is such a great person she is really very funny and sassy, she is learning so much lately and is really becoming out spoken standing up for herself making her wants heard I think this intense time I have spent with her over the last year and a bit has been so good for her just that full on one to one time, getting her the tablet and laptop making our YouTube channel and experiencing so many new changes a long the way.
Her speech is getting clearer she isn’t mumbling as much, she does still repeat thing you say , and still will play out all conversations when she is sitting alone, her Zooms with the day center have stopped now replaced by in person three full days 2 half days so back to all 8 sessions a week. this how ever means another change to my working hours but it is more or less back to pre pandemic hours but that good though.
Always smiling the pair of us.
Work with Tom and Holly
What can I say that were on a different planet this Friday when I turned up both were in happy excited moods,
Tom and me made a video for my my his Nanny who is in hospital at the time of recording she has been poorly for a week but thankfully is home now and the doctors are going to manage her care, which is a good Job as they have an increase of ovid cases at the hospital where she was and although she is double vaccinated she is at high risk of getting very poorly if she should catch it. plus she really doesn’t like being in hospital the food for her has not been accessible to what she can and cant eat, and because the ward opposite hers at the beginning of the week had a case of Covid she had to be moved she hated being put on the older persons ward, the screaming kept her a wake it isn’t good for recovery if you cant eat or sleep. she has always had a fear of hospitals anyway.
Tom was really cute he was laughing we danced and read Horrid Henry he wanted the story about Horrid Henry getting an injection, Toms 12 now so after allot off discussions with his specialists and his doctors his mum and the consultant decided tom should have his vaccine he has now received his first Jab he should get his second in about 10 weeks now. watch how he engages when you talk to him.sorry video hi side ways i haven’t figured out how to change it when I don’t take video in landscape.
After we played a little together and sang songs tom and the elves had a conversation together he was really trying hard to talk.
I played the usual night songs to Tom after we read together and then left his room five minutes later he was asleep, then it was Holly.s turn for a bit of crazy time to get rid of some of her excess energy.
She is as crazy as me we are both a little hyper but i have found with holly a burst of physical activity before she has to go to bed really helps her settle down quicker .
I find phone timers really affective for this game you have to find different poses to get into in that 1o second time space to catch the great shot. we do things like balance and push ups or just different excessive when she wasn’t screaming with laughter we got some great shots for her memory book.
Then we snuggled on the sofa for ten minute calm down time.
See what I mean totally goofing around. Tom and Holly slept all night. I sat and had a quite cup of coffee in the morning and I totally sent this selfie to hubby
Tom woke up about 7.30 so we start his morning routine choosing a song to start the day, while that is playing in the background we choose his clothes this time he chosen blue shorts and T-shirts and he also choose blue socks with a red stripe. he is pretty good at getting the colours matching. next is running bath while i get him ready and the hoist under him, I set his clothes and medical cream and new dressing to go round his peg. Tom is prone to infections in and around his peg so making sure it is clean dried and has the medical cream on is very important part of helping that get resolved quick he does have oral antibiotics but he had already finished them the day before I was on duty. I work every other Friday night with Tom and his sisters. Although the last few times Ellie toms big sister hasn’t been thier. Using the hoist is a god send especially when bathing now Tom is heavier and taller lifting him is not an option. I feel sorry for all those families that don’t have hoists. Tom Chooses his bubble bath body wash / he loves having his hair washed and likes it when you make it spiky. He absolutely loves to splash me too he thinks it is funny.
Next it is hoisting him out the bath so i can put the changing mat that is attached to the bath it is a full bath size one have his clothes and towel ready. and cream for his massage. it helps relax his arms and legs and make them loose . He has been having painfully arm spasm’s the last month. I dry him first then start his massage neck shoulders down his arms hands and fingers then repeat the same with his legs until they are loose put his bottoms on make sure his tummy around his peg is dry before applying the cream and dressing. and getting his t-shirt back on and hoisting him in to his peapod chair. Give him his inhaler with the nebulizer. Its great to do that before you try to feed him so he coughs up anything that layed on his chest over night. he can’t just cough like us some times you have to oat his back to help it come up. he wasn’t as rattly this time on previous times when he was smaller I found it affective to lay him over my legs with his head slightly low and genitally pat his back it used to help him bring up a lot of stuff off his chest. Gave him his meds via peg. and tried to get him to eat some porridge he has been off his food a little his dietitians are working on a new plan for feeding when he refuses to eat they did trial the manual pump but it kept making him sick so they recently stopped that and a decision is in the process of working what will work for Tom. His mum then sat with him while I just cleaned Toms bathroom and a bedroom and therapy room i like to leave thongs clean for when the next carer arrives to take over.
That is all for tonight Wishing you a beautiful evening
Much love Faye xxx