Staying productive with a disabled child

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Staying productive with a disabled child is not easy. It takes some careful planning and a lot of organisational skills. Elin needed to come home early from play scheme because she was having a lot of seizures, which threw my plan for the day out. Struggling with the heat. Heat triggered seizures. Tips for coping with the heat. Talking to my cat.
I'm a special needs mum vlogger in the UK with two daughters, one of whom is severely disabled. Elin is a girl with quadriplegic cerebral palsy, she has a feeding tube, is a wheelchair user and as she can't use the toilet independently she is in a nappy / diaper.
Apart from cerebral palsy, Elin has complex medical needs and seizure disorder. She has tonic clonic, or grand mal seizures, partial focal seizures and absence seizures. She is on multiple medications every day, for her spastic muscles, for her reflux disorder and for her epilepsy. Elin is on a blended diet, which we give her through her feeding tube, and I share tips, how to and recipes.
On this channel I share our day to day life, our morning, feeding, medication and bedtime routines, feeding techniques, how Elin communicates, etc. I also showcase the relationship between Elin and her sister Alice, and how they play and interact with each other.
Elin’s medical procedures playlist: bit.ly/2HhKFsE
Tips and tricks playlist: bit.ly/2ugfoy1
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Website: www.parentxp.org
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[@TheMrKristens]

Aww... Elin you are having a rough couple of days sweet girl. I adore your princess crown hairstyle! Mum did a beautiful job. Today is a relax day for sure. I am happy to see some smiles in there. 🙂🥰🎉

[@ParentXP]

I'm impressed with that braided crown, it's not easy doing Elin's hair

[@pamelagreenfield1899]

Hello you beautiful twins! Your bullet journals are amazing lol I wish I could come up with all these details you do! I feel like I’m not that creative with it 🫤 I really hope it cools down and Elin gets some peace and rest💜😴🛏 I’m in love with Luca! feeling like I need a new baby so I’m on the search for a cream dachshund 🐶 wish me luck🍀

[@ParentXP]

Remember, the journal is a tool, doesn't need to be creative. Aw, cream dachshund, sounds cute

[@tdunkley001]

Awww! :)

[@ParentXP]

😃

[@cherylhoggan19]

Hi Tova and Elin, l hope that the rest of Elin's day went off with no seizures. It was nice to see some smiles from her. I am from South Africa, very hot summers, are normal for us, that is over 30°C/ 38° C, for days on end. It's really very draining, when it is sooo hot. Hopefully your temperatures cool down a good deal. Thanks Tova, I Learned something, "I didn't know about, that just drinking fluids dilutes, when you not eating.

[@ParentXP]

I love it when I get to impart of my wisdom 😂😂😂

[@brendalevesque6384]

Hi Tova and Elin. I’m sorry to hea that the heat is causing Elin to fit. I hope the fits remain at this level and don’t get worse. Poor Elin she looks so white. My cats provide me with endless amusement too. I have conversation with my cats too. I hope they are saying polite things back.

[@ParentXP]

Thankfully she has coped well since

[@davidtrishhope9841]

It,,s a hi from New Zealand

[@maddielangdell6496]

The heat must be horrible for her when you go from classic British weather to 30 degrees heat I hope her seizures aren’t getting worse and don’t start triggering to much vomiting I’m sure Luca cat is there to look after you both just a quick question dose elins school shut all through the summer or is it just for a couple of weeks hope you feel better soon

[@ParentXP]

Elin's school is closed for seven weeks of summer holiday, but she did get almost four weeks of playscheme

[@alexthesaintbernardlover5938]

Hey tova

[@ParentXP]

Hallo

[@NZ73200]

Unfortunately heat effects so many things. I got cooling blanket on Amazon thts been gd, I got cooling pad too if u want links I’ll do it on Instagram. How does Elin n fur child get on?? X

[@ParentXP]

We've made it through the heat, thankfully. Apart from one round of seizures Elin coped well, and Luca has been finding the coolest bit of floor to lie on.

[@shonamcdonald9825]

hi tova does elin ever wear slippers in winter

[@ParentXP]

Fluffy slippers or woolly socks, yes

[@jessiemattingly8216]

Hey tova when is Ellen getting her port surgery done

[@ParentXP]

Dad took her a while back. Everything is healing well.

[@jessiemattingly8216]

@@ParentXP I was wondering when she's getting her port placed give her kisses for me please