Elin is growing fast

Elin was weighed and measured at school recently and she is growing so fast.
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
Come and join us on other social media platforms:
Instagram: / parentxp
Twitter: / parentxp
Facebook: / parentxp

[@BelladonnaSupreme]

You're meals are so inspiring. I can cook but I get decision paralysis and get all the gear to discover I have no idea. My cupboards need emptying into a pot!

[@ParentXP]

Thanks. I surprise myself sometimes with what I am able to cook from "nothing" 🤣

[@davidtrishhope9841]

Watching from New Zealand

[@nicolekelaher1979]

You have a really pretty singing voice. I agree with you over the pad issue my son was the same as ive said before he is disabled. Hope you all had a happy fun day. Sorry I had a giggle at you telling the dietitian off. Xx I've had a similar experience

[@ParentXP]

Never, ever question a medical mama!

[@nicolekelaher1979]

@@ParentXP agree 👍 lol

[@brendalevesque6384]

I understand about you’re wish to protect Elin’s privacy regarding pads, but as you were talking about taking other things into account not just a child’s waist measurement when deciding on a size this didn’t. I’m glad Elin is having such a good time on her playscheme. I hope you and Alice enjoyed your swim.

[@ParentXP]

Thanks Brenda, glad I managed to keep the topic informative.

[@BelladonnaSupreme]

My friend has a friend with a 19 year old daughter who sounds like they have the same extent of brain injury and levels of disability as Elin. I'm not sure how she's navigated life or coped with lifting for example but I'm sure it's insightful. I can put you in touch if you like. ❤️

[@ParentXP]

Thanks.

[@alexthesaintbernardlover5938]

Hey hope you had fun

[@ParentXP]

Yes we did

[@cherylhoggan19]

Hi Tova, Elin and Alice, nice to see you all.. Elin seems to have really long arms and legs. She is looking older, so is Alice. Glad you got your way with the size of pads for her. She is a little girl, of course she needs some underwear. Elin's top b looked so good on her. Hope you all had a great time, at your different activities.

[@ParentXP]

Thank you. I love seeing the girls grow and change.

[@JessicaHarrison-ty8fr]

I watching from uk

[@janetdonald9801]

Hi lovely, I just want to bring to your attention a controversial idea. I watched a doco on KZbin of parents with disabled children who were treating them with hormones to stop them from growing. I know, it sounds terrible but hear me out. Their argument was that if they grow to their full adult height potential, then as their parents, caring for them will become so difficult that it will force them to put their children into care homes. I had never thought about this and it does seem counter intuitive for a loving parent to limit their child’s growth but after watching I could totally understand why they were going down that path. What do you think? Have you ever heard of this? I know it’s an ethical dilemma of massive proportions. I do know for sure that you are a fabulous mother and a medical warrior and I respect you enormously.❤

[@ParentXP]

Hi Janet, Yes, I have heard of it, and you're right, it is a controversial topic. I have also heard of parents who use hormonal contraceptives to switch their daughters' periods off because they don't want to deal with the mess. But then, the mess in question may be extreme period pain and bad seizure activity. I don't think there is any real right or wrong answer here. It is extremely physically taxing to look after a disabled person, especially a disabled adult. Every caring parent do what is best for their family.

[@maarithaapapuro8620]

Yes, that's exactly what I was thinking, how when Elin grows and starts to weigh more, how will you be able to lift and move her yourself?? When he becomes an adult and turns 18, how will things change, can he still live at home?? And even going forward as an adult, what can be expected?? Oh yes, when I have subtitles on in English because I don't know the language perfectly and I can't get it in Finnish. So if you don't even know ordinary words very well, you would get it wrong when you say Elin, for example, and it says ALIEN and many other funny things!!! I translate the comments into English and also read them that way.

[@ParentXP]

Well, not 100% sure how we will navigate the future. She will never be able to live independently so she has to either live at home with her dad or me, or in a residential home that can care for her. It's never going to be an easy decision.

[@EvieCrowston]

Hi! Love your channel - Have you ever through about a J tube? Thanks xx

[@ParentXP]

Hello, thank you, I love reading comments like that. A J-tube has been discussed but it's a big operation so we have held off (in collaboration with gastro-team) to see how things develop.

[@NZ73200]

The girls look so grown up. Has having Elin hip changed her height?? Does Elin need leg braces?? Even tho she’s in wheelchair do u still get her shoes?? Xx

[@ParentXP]

She really is growing fast! Her left leg is now significantly shorter than her right, but when they do the right hip too they will be more even. But yes, they have to shorten the leg as part of the surgery. And she wears both leg braces and shoes. I'm filming a vlog on the new bits of her wheelchair today so will include that when I do.

[@rhondaphillips7471]

My friend has with a -19-year old Daugher, who sounds. like they like they have Same, extent o rain -----------------------------------------------------

[@felicia3041]

I have a question has your kids ever seen the ocean where you live do you guys have ocean there just curious

[@ParentXP]

Yes they have. I live in a land locked county but I'm from the West Coast of Sweden so both girls have seen the ocean. I doubt I'll travel to Sweden with Elin again but I'll definitely take Alice.

[@rhondaphillips7471]

My friend has with a 19-year old Daugher, Who sounds like they like they have Same exteant, ofbrain

[@BelladonnaSupreme]

@5:22 1.2kg = 2.6lbs 🙂

[@ParentXP]

Thanks

[@danina1996]

Do you get Elin’s pads for free

[@ParentXP]

Yes

[@rhondaphillips7471]

My friend has with a 19. year old Daugher, Who sounds like they have Same exteant, of brain

[@rhondaphillips7471]

My friend has with a 19 year old Daugher, Who sounds like They Have. The. same exteant, of brain

[@rhondaphillips7471]

My friend has a with a 19 year old daughter. Who sounds like. They. Have the same exteant. of brain example but I’m sure it’s insigthuful I can put you in touch if you liike

[@rosemarysanchez3900]

They

[@emmafeldmar8896]

Why don't you houst her thinking of your back

[@ParentXP]

Because it is still easier in many ways not to...

[@rhondaphillips7471]

My friend has with a. 19-year old Daugher, Who sounds like they like they have Same. exteant,ofbrain