Elisa’s Dystonia Journey: The Hip Surgery

If you’ve read my previous post about Elisa’s current predicaments leading to hospitalisations, you don’t have to click this link. If you haven’t read it and don’t know what has been happening previously, I recommend you to read this first before carrying on.

Post telling about Elisa’s dystonia and hernia surgery

Spring spent in hospitals

Elisa spent the majority of April in the hospitals. She did get transferred from Southampton to our nearest hospital, Poole hospital, which made it easier for us to care for her and I was able to be more involved. During that hospital stay, Elisa’s dystonia did not get better and her dystonia rescue plan had to be constantly reviewed and altered. In the end, the doctors were trying their hardest to get the hip surgery booked in for as soon as possible.

Her hip surgery was booked in for June

Personally, I felt disheartened. It was so torturous for me to see my child in so much pain. She was in agony! All she would do was either be in drugged up sleep in relative calmness or scream like she was being tormented in medieval torture machine that stretched her limbs into unnatural positions. I am not going to lie – it was hell. I was convinced Elisa was scared of waking up, to be aware of her pain. The complaining and screaming came on like with a flick of a switch – one minute she would be seemingly calm and sleeping, the next second she would have screwed up her face and was screaming with the the full capacity of her lungs.

The reason for a long waiting time was the pandemic

I was told there were only two hospitals doing paediatric hip surgeries: Southampton General Hospital and Great Ormond Street in London. As was the case, the waiting list was unduly long for both hospitals. It was unsettling to think there could be so many other children in similar agony to Elisa waiting for the operation as desperately as we were…

This is the position Elisa was the happiest in – if we straightened her legs, she would immediately stiffen up and complain loudly. She even slept like that! Sometimes we managed to keep her comfy as so on a bed, but mostly one of us would be laying next to her and holding her in this position to help her.

Still, every single day I wished for a phone call from either of the hospital to announce: “Hey, we’ve got a cancellation – could you come in as soon as possible to get Elisa’s hips done?”

That never happened though, but I lived in hope.

We got Elisa home

In the end of April, we got Elisa home. It wasn’t because she was better; it was a trial to see if we could manage her dystonia better at home where we would have all her equipment and specialist seating in hand, not to forget the comforting stimuli of home environment. Armed with very powerful drugs and our invaluable night carers paid by NHS, we got her home and hoped for the best.

We tried our hardest. 24/7 we would cuddle our daughter, as that was the only way we could keep her as content as possible.

It nearly broke me.

I found myself thinking that I wished for her to give up. I couldn’t imagine the strength required from her to keep going, and I wanted her to find peace – even if it would only come through death. I was horrified by my thoughts. It wasn’t that I wanted to lose her or for her to die. I wanted her pain to stop so bad that I was even ready to let her go – so she would not have to suffer so damn much anymore like she had been.

If you do follow me on Facebook, the last bit didn’t come to you as a surprise, as I did post about it there. I add the post underneath for you to read now in case you’ve missed it:

My best wasn’t enough

In the end, it was too much for me. We decided to take Elisa back to the hospital, where she could have more sedatives than what we were allowed to give her at home. It wasn’t an easy decision in any means, but it was what we felt was right for her.

She spent the last weeks of May in Poole Hospital. I informed the doctors I rather had her in medically induced coma than see her suffer, but due the infection risks and withdrawals and all that lot that comes from such extreme medications, it really wasn’t a practical option. It left her being medicated as regularly as possible with pain relief, chloral and other sedatives.

Thanks to our insistent nagging though, the doctors allowed it that she didn’t need to be screaming her head off in absolute agony before giving her the strongest stuff.

Time is too slow for those who wait

It took forever, but we got to the end of May. Then she was transferred to Southampton Hospital – on Dan’s birthday – in readiness for the upcoming surgery.

The surgery finally happened in 2nd of June

and it took nearly 8 hours. I do admit, I do not know all the ins and outs of what they’ve done to her hips as I didn’t want to know – but both of her hips were done, metal rods put in, bones crushed and what-have-you, tendons in her groin were loosened and they operated on her pelvis too. She will have four big battle scars as a proof for undergoing such an operation.

If you want to know what was done, Dan found this useful video for you to view on Youtube called “Hip Reconstruction in Cerebral Palsy“.

She will need to wear a brace for 6 weeks post-operation.

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Child wearing a hip brace after hip surgery
This is the brace. It is so much better than a cast that was the other option!

Afterwards, she spent 2 nights in Paediatric Intensive Care Unit (PICU). First night she was in ventilator getting as much rest in as possible, and for the second night she was kept in for other medical reasons.

On a third day she was transferred to HDU ward, where she is still today.

Today is the 10th of June 2021.

Today it has been a week and a day from the surgery.

Guess what? I went to the hospital to see Dan and Elisa today and Elisa gave me a genuine smile when she saw me. She smiled at me! For the first time this year! My heart nearly stopped, it was a such a sight that I could have cried on that very spot!

Instead, I rushed over to stroke her face and cuddle her as gently as I could.

She has some gentle physio daily and she has even managed to sit in her own wheelchair already – and the big news is that she is tolerating it!

After having to cuddle our child non-stop as that was the only way to keep her as content as possible, to see her in her wheelchair is… I don’t think there is a word for this sort of emotional excitement, wonder and happiness pierced with sadness that I feel when I see her now.

We even got Elisa out of the ward – she joined us for lunch in the hospital’s cafe!

Oh, only if we could have had her hips done earlier, back in March!

Maybe this was it?

We are so hopeful we have finally cracked the mystery of the dystonia trigger – it might have been the hips. Her sore hips causing her to go into dystonic status every single day for the past… I don’t want to do the maths for how long she has suffered. I’m just glad we’ve finally managed to do something that has made a positive difference to her wellbeing.

She is still having a lot of drugs, but not as much as she was pre-surgery. In most likelihood she will be spending the whole 6 weeks in the Southampton hospital so she can have the specialist physio she requires to heal, but that is such a small price to pay if it means we can have our happy little girl back!

Again, thank you for reading – and to all of you who has sent us messages, comments, phone calls, cards and gifts: thank you so much. It has meant so much for us. It has helped us to keep going, knowing we are not alone in this. We are so grateful to you. Thank you!

Mother at Home: Child at the Hospital.

So much of missing Elisa is guttural.

Usually, when I miss someone, I either call them or text them. Usually the latter. I can keep in touch with my stepdaughter and nieces that way, I can call my parents who live in Finland. I can even write and receive simple sentences from my 5-year-old or have a chat with her over the phone if a need arose.

With Elisa, none of the above communication methods are usable. She is non-verbal, and cerebral palsy makes it nearly impossible for her to master any sort of meaningful movement in any of her limbs or body. She is deaf, and when she is poorly, she hardly ever tolerates her cochlear implants as she prefers to heal in complete silence that her body naturally engulfs her in. Her eyesight is not a lot better, even though she can recognise people and animated characters by looking at them. Still, eyeing Elisa through a screen knowing that it is possible she might not even recognise me on the screen at her end does not provide the equal comfort than actually seeing her.

So much of communication with Elisa is done through touch. We cuddle her to shower her with love. I stroke her hair, I gently trace her facial features with tips of my fingers. I tickle her, or give her a firm, strong massage. I smell her hair, the curve of her upper lip, where I can feel her breath. I love breathing in the smell of her breath when she’s healthy. When there isn’t that sickly sense that she’s got a flu,.

I can’t get any of that through the screen.

When she is not at home, the house feels utterly empty. Even if everyone else was filling the space, the lack of Elisa’s presence is so immense that none of us really know what to do with ourselves. Even the cat and the dog look like they’ve lost the plot, wandering around aimlessly, looking for something. Looking for Elisa. Even if she doesn’t do much, she does so much more than any of us realise, and it only comes painstakingly clear when she is not around to do it.

What is the hospital life like during the pandemic as a parent at home, when your child is an inpatient?

I recorded this voice clip on the 2nd of March. I attempted to answer the simple question of: “What is the hospital life with your child like during the pandemic, when you are the parent at home?”

I made it into a little slide show, with subtitles.

There are many reasons why me and Dan have made these care arrangements; why he is the one looking after Elisa at the hospital while I’m at home with Melody. One of the reasons is as simple as me being the one with a driving licence, therefore doing the supply runs between home and hospital.

Today is 9th of March 2021.

Elisa is still in hospital. I got to go and have a cuddle with her this morning before she got transferred to Southampton hospital with her Dad.

During the pandemic, Elisa’s muscle tone has been getting worse. She suffers from dystonia, which is “unintentional sustained muscle contractions leading to abnormal postures.” The lack of physiotherapy and occupational therapy may have contributed towards the worsening muscle tone.

Two weeks ago Elisa got admitted to the hospital due a lot of stress from dystonia – she was in so much pain. We took her in for the third time this year.

While doing their examinations the hiatus hernia was discovered nearly by accident, and since then we have discovered her fundoplication has loosened up as well as her hips are not doing really that well either.

She will have a surgery tomorrow. They will tighten up her fundoplication and get rid of that hernia that is letting her bowels push her lungs. I can’t even imagine how painful that has been for her. I mean, I’ve seen how much in agony she’s been – but to actually know how she’s felt…

 I just hope she will recover quickly and come back to being her happy self, without pain, as soon as possible. I am also so very scared. It’s going to be a major surgery.

Today is 12th of March 2021.

The surgery lasted 8 hours, but was regarded a success. Afterwards she was on a ventilator for nearly 24 hours in Pediatric Intensive Care Unit (PICU), but has already been taken off the ventilator and moved to High Dependency Unit (HDU) . I wish we could go up there with Melody to visit, but it’s not possible nor safe. Melody has been back at school, so even if the hospital would allow siblings to visit, we would not recognise it being safe.

Finally,

It is strange being home without Elisa and Dan. I’m trying to keep Melody as busy as possible, as this time around she has found it very tough indeed. She was so used to us shielding, all of us being constantly at home together, and all of a sudden half of her family is out of reach and mostly to be communicated with through screens.

We do not know how long Elisa will be in the hospitals for this time. She won’t only need to recover from the surgery, but most of her medications need to be fiddled with again to provide the relief from dystonia and other problematic by-products of her disabilities.

Will keep you posted…

We completed the Kids Kilometre

It so closely didn’t happen for us. The plan had been for Melody to run with me and Elisa to be pushed by Dan. On the day Melody woke up feeling poorly and ended up being sick, so she was out of the game.

Elisa wasn’t though.

Once I gathered my wits, I pushed her out of the house and onto a bus. I was determined to make it special mummy-daughter time then with Elisa.

I met up with the others close to the starting point and got our T-shirts on. There were a bunch of us running for the Dorset Children’s foundation – a varied group of kids with different difficulties and mobility issues. For many of them, you couldn’t see the struggles they have gone through to be there today, ready to run for the charity that gives so much back to them.

Me and Elisa, all ready for action!

I didn’t know what to expect really – I had never done anything like this before. I didn’t have time to feel self-conscious though as my amazing daughter kept me present in the moment. She was so excited about the attention she got from our friends and people walking past: she was so happy to be out and about and meeting people. She kept me grounded, I didn’t even have time to feel nervous.

Then they started the countdown

It was time to go. First we were surrounded by people and I was conscious not to push into people with Elisa’s chair. Soon the faster runners had got distance to us and we had more space around us. I picked up speed – for Elisa’s delight.

Elisa turned out to be the best personal trainer ever. The faster I ran, the more she giggled.

Naturally I wanted to see her enjoying herself as much as possible, so I ended up pushing her faster and faster. I had her backpack on my back that had her emergency medications, syringes, hearing stuff and all the rest of it in it and on her wheelchair, I had her suction machine, saturation monitor, oxygen cylinder, feed pump and whatever else on.. Above all her wheelchair is not designed for such purpose as running. It is not the lightest or easiest to handle as you try to be agile and run, but those technicalities aside – I had fun. She had fun. I didn’t run the straight line with her but went for the uneven terrain where she would get the more exciting bumpy ride that I knew she would laugh at, and I curved the wheels like on a snakes path.

She loved it.

I got sweaty and red in a face quite quickly, but I had this silly grin plastered on my face that glowed from within. It came from seeing Elisa enjoying herself. It came from her laughter and excited posture. It came from the buzz around me, from all these kids running with their mums or dads, the audience cheering.

So many firsts…

She had been snickering and giggling the whole way, but all of a sudden she fell quiet. She had focused on the the crowd. I had pushed her near the audience and held her arm out, which resulted in her receiving a couple of high fives. It quieted her down.

As she has both hearing and visual impairment, touch has always been very important sense to her – not only we use tactile sign language called “Tassels” with her, but she gets so much comfort from cuddles and simple touches. So, to get high fives from strangers while being pushed in her wheelchair was another thrilling experience for her.

Then she heard the clapping.

She had her cochlear implants on during the whole race and when people were clapping for her, she closed her eyes and concentrated on it. Even though I could not properly see her face and all the emotions it was conveying while running, I saw concentration and awe.

Coming closer to the finish line

I was surprised to feel sad. Even though I had found it more tiring that I care to say to push her, I didn’t want this experience to end just yet. They announced Elisa’s name and how she was running for the Dorset Children’s Foundation when we crossed the finish line, and I was teary-eyed. I didn’t see anyone I knew immediately, but lovely event organisers took us to get our medals.

When she was handed the medal,

I found myself welling up with emotion. I managed to hold it in till she had got her “Finisher 2019” t-shirt and then a tear or two rolled down my cheek while I pretended to look for a way out with the wheelchair. I felt so proud of her. I know I was the one that did the sweating, but with everything we’ve gone through together, I had never imagined this moment – of her getting a medal for finishing a race in a marathon event.

Such an absurd idea!

When she was in NICU and we feared she might be brain-dead or when she almost died because of a nasty chest infection when she was 3 and was in medically induced coma in paediatric intensive care unit in Southampton… or even just 2 years ago when our daily routine of medications and feeds took 24/7 in a way that we had no rest at all, before we had sufficient support in place.. If then someone would have told me that in just few years she would be handed a medal for finishing a race in Bournemouth marathon event… I am not sure what I would have thought.

When we’ve only been concentrating on surviving for so long, doing something extra curriculum like this is so out of the hat crazy that it is hard to wrap my thoughts and feelings around it.

3-year-old Elisa fighting for her life in PICU in Southampton, only 3 years ago now.
But look at us now!

After I had found the others and exchanged couple of emotional words, I found refuge at a cafe in Lower Gardens. Once I had given Elisa her midday medications and put her lunch running through the gastrostomy tube, I just hugged her and cried. I cried of joy, pride and for the amazing experience we just had. I cannot even explain fully why I was crying. I was just so freaking emotional.

Want to see the DCF group run on a video?

Alex, who supports the DCF’s work, ran with our group of kids taking video and photos of us. Elisa loved him and posed for him every time he came close with his camera, and all the footage show the atmosphere – she was so happy to be there. By the beach, breathing in the salty sea air, feeling the wind and making Mum run. Most of the photos of us by the beach are from him!

This is his video:

Not to forget,

All the children that took part in our group “challenge” really overdid themselves and had fun. With that, through our donation page we’ve raised a staggering 1 622 pounds with Gift Aid! How amazing is that?

That all will go to Dorset Children’s Foundation “Accessible for All” initiative. Read more about it here.

Elisa with Patsy, the co-founder of the Dorset Children’s Foundation (DCF).

I am not sure how much longer the donation page will be open for donations, but last time I checked, it still was. If you want to donate a pound or two after reading our experience, I would be so honoured if you did so in here: Kids Kilometre. It all goes for very good cause; it gives families like us opportunities to play together, to make family memories. Thanks to the Dorset Children’s Foundation Accessible for All initiative, that this money is raised for. The DCF does other important work too, check it all out from their website here.

Thank you – I’m just off to dry my tears away. Again.

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Dream Come True: Introducing Freya the Labrador

Freya arrived to our family in March 2019. It was made possible with rigorous saving up – we committed putting aside tiny amounts of money weekly in to a savings account for a very long time – and research.

In my teens I had had a dog, but ever since I moved to UK I haven’t had a furry friend of my own. It was almost a dull ache in my existence, not having the sound of four paws pounding next to me at all times.

As with Elisa’s complex needs,

I realised I could train the dog to help her. I looked into many breeds, trying to narrow the choice down to what we wanted and needed and what needs the breeds have.

My favourite breed is a shetland sheepdog – my previous dog was a sheltie. Even though I knew that breed very well, I crossed it out from the list. I wanted to teach the dog to help Elisa with her dystonic episodes by laying next to her and maybe even on top of her spasming arms, so the dog needed to be strong and heavy. Lightweight sheltie would have flown off Elisa once her forceful dystonia kicked in..

Taking everything into account,

we decided on a working type Labrador (read from Labradorsite.com about the two types of labradors). It would be agile enough to jump on Elisa when she’s on her wheelchair and strong enough to hold her down if needed – also the eagerness to please and learn were definite positives. I was aware of the negatives, the mouthing (the “need” to grab everything and anything and the constant chewing) and the endless energy, but I was ready to crack on and work with those in mind too.

When I went to see Freya,

I liked her curiosity and calmness. She didn’t yap like her brothers. She wasn’t shy and she was keen on examining me and Melody when we sat there on the floor getting to know the pups. She did mouth, but I had expected that anyway. She let me roll her around, didn’t protest or get anxious, and there I was sold. Freya seemed like the confident little addition that I wanted to have in our family.

After couple of more weeks, she came home and fell in love with Elisa almost instantly.

Freya has proved herself to be a sassy little lady, who only barks at neighbours cats and is endlessly interested in everyone. She loves cuddles and wants to be with her humans at all times.

Freya keeps testing my patience in daily basis,

and we have walked a long way together already – from learning out of the habit of mouthing to walking nicely on a lead. We are not perfect yet, but we are so getting there.

Above all, the kids love Freya.

Elisa is calmer around her – when Freya is close to Elisa, her dystonia seems to ease up.
Melody has an “always-ready-to-play” playmate out of Freya – they’ve got the games of their own from the start.

Ruby is eager to teach Freya tricks.

Me?

Freya is my therapy dog. She calms me down when I feel anxious, and she is my pass to get outside for a long walk daily.

She is a dream come true. Not perfect, but we are all learning together.

So what does Dan think about the dog?

“Oh it’s alright. Whatever makes you happy, it makes me happy. No big deal.”

.. says the one cuddling the dog every night before bedtime.

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Our best ever Summer Holiday yet

I do feel inferior talking about our holidays even though it was the best yet for us. We did not travel within UK or abroad , nor did we visit any museums or amusement parks. We didn’t go camping or glamping and we didn’t go to any festivals.

Such things are expected of the “best ever holiday”, right?

Even though we did not proceed on doing mentioned activities, we still did have the best summer we have had yet as a family.

So what did we do?

Monkey World with the DCF

The Dorset Children’s Foundation “DCF” funded a fun day at the ape rescue centre called Monkey World at the very start of the holidays. We were ecstatic – well, I was at least as I’ve never been and Melody was all keen to see chimpanzees!

Notice sleeping Elisa on the background… She slept through the whole thing.
Melody enjoys travelling in the Tula toddler carrier, that I got from Finnish shop called “Ipanainen.fi“.

We had a lovely day, never mind that Elisa slept through the whole thing.
Maybe she dreamt of monkeys though?

Played Football with the DCF

These football sessions are such a safe place; there are footy related games for those who can and want to join in, but no-one is looked on badly if you decide to run around the hall playing chase with your Mum instead or have your very own game going on with a wheelchair football.

Neither are you judged if you happen to fall a victim to your emotions and have a temper tantrum.

There are only few opportunities where all parties of the family can join in the activity fully when one is physically disabled – it happens so easily that the disabled is on the sidelines or then the siblings. 

These football sessions are for all; all of our three children love to join in the fun. Well, after all, this is “Accessible for All” Football arranged by the Dorset Children’s Foundation. 

Colour sorting is very important for our 3-year-old.. So at one session she managed to gather all coloured practice plates and balls and sort them accordingly.

The DCF Fun Day

We only came for the afternoon part of the fun day – so we managed to get some lovely cake, then burned off those calories with playing indoor football and dancing to the beats of the amazing DJ Nose It !

Saying thank you after a nice game of football!

Launch party of the DCFFC

As we already had been enjoying the football sessions arranged by the DCF, we were excited to attend the Family Fun Day that celebrated the launch of the new football team.

Can you spot Elisa and Ruby in one of the photos from the Dorset Echo’s news article? You can check it out here.

Most importantly – we saw friends and Elisa got some lovely cuddles with a younger friend of ours!

We went swimming at BH Live Leisure Centres

Littledown

We do like the pool in Littledown. It is all wheelchair accessible and we go for a swim there every so often.

Pelhams

Our favourite Leisure Centre has to be the closest one to us though, but not because of it’s proximity. We love how the changing area for swimmers is an open area and so we can get changed as a family. The disabled changing facilities include an essential hoist, and there is a hoist to the warm pool too.

About to go for a swim!

Mummy – Daughter – quality time with Elisa

It’s rare that I get to spend one on one time with Elisa. So on a day when Melody was in nursery, I took Elisa out. Just me and her.

Elisa needs an escort in a car in case she needs support with her breathing or dystonic episodes, which is why it’s not safe for me and her to drive anywhere alone – I need another adult with us. That naturally limits our options for quality one on one time, which is why we went for a walk.
We went through Slades Farm and the woods – Elisa loves a “bumby ride” and it’s good exercise for Mummy to push her along the naturally uneven sandy pathways.
We went shopping to the Julia’s house charity shop at Wallisdown. Elisa loved the guitar and I found some clothes for the kids too.

Attended Julias House event called “Housemates”

Julia’s house arranges these events called “Housemates” during holidays and half-terms that are designed for the whole family. The events are relaxed, offering parents a chance to enjoy a cuppa and a chat with other parents when their children take part in supervised play.

Melody was so independent and went off to play with the Julia’s house staff and other children. She enjoyed some arts and crafts (like in the photo) and decorating cupcakes.
That gave me an option to enjoy uninterrupted cuddle and play with Elisa..
We even managed to have a civilised cup of coffee together, me and the father of my children, while our offspring played happily with Julia’s house in the next room.
Not to forget who is the favourite here for Elisa.. Even as she does enjoy Mummy cuddles, she is such a Daddy’s girl!

Picnic at Moors Valley

Dan arranged to see a friend of ours at Moors Valley. We walked around the pond and then settled for a picnic.

It was my first time to travel on the Moors Valley Railway. I was so excited!
Elisa didn’t travel in her wheelchair but had Daddy cuddles the whole way through. She loved it!
Our labrador Freya was excited to be with us on the train ride.

Random moments

We had had a lovely swim session with other families with disabled children. We were hungry and it was raining – so we had a picnic in the car. Why not?
We enjoyed a lovely pub lunch with family in celebration of Ruby’s birthday.
We attended “Noahs Fun Day” that was organised to raise funds for essential housing works for our disabled friend. Here Melody is having a break from the bouncy castle and enjoying a lovely cupcake.
While Melody was in nursery, we had a shopping spree with Grandma at Castlepoint. Here we are about to enjoy some well deserved coffee and cake! Well, cinnamon swirl for me.
The DCF had organised a Sensory Disco, which we enjoyed. Here the sisters were having a breather in the sensory room – one chilling, other not.
Our friend Dani took Melody and Ruby out for an afternoon of minigolf. Here Melody is all ready to go!
Other day and walking hand in hand with a friend..
Icecream after Elisa’s appointment at Poole Hospital. Ruby, Daddy and Elisa had attended the appointment, and me and Melody had spent that time at the playpark.

Moments at home

Melody is helping Daddy to make dinner.
Building with Dublos..
Painting nails as a reward for letting Mum to trim them first…
Loads of lovely cuddles..
Baking biscuits with Mummy…

How come was this the best summer holiday yet?

This is something any family with a child with complex medical needs will agree on.

Canford Park Sang

This was best holiday yet, as we all stayed home. Elisa didn’t end up being admitted to hospital once. She was poorly with a tummy bug for couple of days, but that is so minor that is not even worth properly mentioning. Honestly – even as we lacked the confidence to book anything and make certain plans because of last years experiences, we ended up having the most active and loveliest time we’ve had during holidays. Happy, content time, as we were all healthy enough.

Isn’t that amazing?

Did you pay attention?

Most of the activities we enjoyed as a family were arranged and funded by charities like Julia’s house and the Dorset Children’s Foundation. Both of these charities are really close to my heart and our lives would be so much poorer in so many ways without them.

Which is why we are raising money for the Dorset Children’s Foundation.

Did you read about that here yet? Most importantly, if you could spare a quid or more, have you donated here?

Our new Facebook page is booming with new likes already – thank you so much for that! If you haven’t liked us yet, please do so here. If you are more of a Instagrammer, we do have an account there too here.

Mummy Blogger reveals her children’s real names after 7 years

This is a big deal for me.

I have kept a public blog for more than 7 years and my children have always been known by nicknames in it.

Not anymore. My blog’s long term fans would have noticed a huge change in my blog since yesterday.

I am very proud of my children’s names.

Still, I wanted to hide them from the world. While I’m revealing so much of myself here I could not help but try to wrap my kids in with a fluffy anonymity blanket.

As I start blogging again,

I feel more connected to the local people, businesses and charities than I did before, and more than previously I do want to work with them and for them. I want to promote amazing charities and help to bring recognition for them, for all the hard work they do for families like mine. We already have let some of them use our kids real names in their leaflets and websites, and to prevent confusion, I’ve revised my nickname policy here in my blog.

My blog’s fans have known my eldest as “Elsa”.

Her real name is Elisa, pronounced like the name “Eliza”.

I had known for more than a year before Elisa was born, that my first child with Dan would be called Elisa. I didn’t want to have any “foreign” letters in her name to honour her Finnish background, as in Finnish letter z is hardly ever used. But Dan didn’t want the pronunciation that comes easiest with this spelling, so we went with “Eliza” with s.

She is as special as her name.

My youngest has been known as “Anna” in the blog.

Her real name is Melody.

Melody loves her name, she promptly and proudly introduces herself to everyone whenever needed or not. Her name comes from a twin who sadly didn’t live very long – I didn’t even ever have the honour to meet her. I met her mum when I had been told the worst news possible; that my child, Elisa, might die. It was then that I bombed into Melodee’s mum, who knew exactly what I was going through. We have been friends ever since.

When I was expecting my youngest, we made name lists, and name Melody just kept popping up. It was the one that just felt right.

Ruby

has always been known in the blog with her real name as according to her own wishes.

Weirdly,

I feel like a weight has been lifted off my shoulders. It appears protecting the names of my children had been a sort of a battle that I had been soldiering through… and I don’t have to do that anymore. Strange.

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We are taking part in the Bournemouth marathon

On the 5th of October 2019 I will be chasing after Melody, 3, while Dan will be pushing Elisa, 6, in her wheelchair. We have entered them to Bournemouth Marathon Festival’s “Kids Kilometre” -event and we’ve never done anything like it before.

We are raising money for a charity that has helped our whole family so much and keeps doing so every single week.

Why the Dorset Children’s Foundation?

As charities go, I have yet to find another charity that is as approachable and friendly as the Dorset Children’s Foundation. The charity supports local sick and disabled children by funding medical expenses, mobility equipment and therapies not covered by the NHS. They get to know the family as a whole and their approach is really hands on. Their mission is simple – “to provide what is needed for a better quality of life”.

They’ve helped us already in numerous ways.

Not only did they fund Elisa’s p-pod that is comfortable seating for home..

Your standard supportive chairs for disabled are like dinner table chairs – they are necessary, but they are not what you call cozy. P-pod is the equivalent of your sofa. Supportive enough to help a good positioning for the disabled, but more comfortable than your standard special needs seating.

More than that, they’ve made us all active.

We didn’t even realise how isolated we were before we took part in the DCF events. We didn’t know any different, as Elisa has always been disabled and we’ve struggled with its knock-on effects from the day 1.

accessible football

Thanks to our friend Emily and DCF’s co-founder Patsy, there are now weekly events for families like us to do different activities. As an example, we now go and play football weekly with the other DCF families.

Here is a video of us spending quality time with our children in different DCF events :

Not only Elisa is included in the activity with the rest of the family, but the siblings too. I cannot press enough how important this is; that the whole family is involved and feels safe and supported to take part in a way they can.

I’m sure you agree,

the Dorset Children’s Foundation is one small but mighty charity that changes lives within our community. It definitely has improved ours greatly.

You can learn more about the charity on their website here.

How to Donate

Emily has set up a Virgin Moneygiving page, where you can securely donate money to our worthy cause. Please spare what you can to help the Dorset Children’s Foundation to support families like us – to keep us active and our kids happy.

So please – donate here.
Thank you so much!

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Who is Elisa?

What kind of a person is she? What does she like or hate? Who is she?

Elisa is funny & cheeky little git.

She has a wicked sense of humour. 

Watch her, as she will try to cause havoc. She will try to pull the leads attached to her knowing you will come to tell her off, which she finds hilarious! In similar fashion she will try to flick her implants off her head knowing that you will soon appear to put them back on her.

She loves rough and tumble. She loves making a mess. She loves water: she loves swimming and splashing and playing with water. She loves sensory play and bright lights. She likes exploring with her sense of touch. She finds bubbles fascinating. 

Elisa is happy 5-year-old.

She is a content little girl, who only cries when there is something terribly wrong. Crying is her last resort; if you hear it, you go running to her.

She cries if she is in pain. She cries, if you keep doing something she has tried to say “no” to numerous times and she cannot think any other way to get out.

Usually, you see Elisa smiling and laughing. That is her. A happy little soul. 

Elisa loves Futurama. 

TV has always mesmerised her. She could easily spend the whole day watching cartoons. Though she is picky! She will protest to Peppa Pig or anything too babyish. She used to love Frozen, but that does not take her fancy anymore. 

She likes the films Moana, Coco and Angry Birds. 

But she absolutely loves Futurama. Her favourite characters in it changes periodically. It used to be Dr Zoidberg, now it is Bender. 

She cannot speak, but she won’t stop talking 

Even though there is no language as such that she can use to communicate with, she expresses herself colourfully with facial expressions and body language and audible squeals. 

She will make choices by smiling at the object she prefers and following it with her eyes. If she doesn’t really mind, she will not react either way to the presented choices. 

She says yes with a smile.

She says no with a frown. Sometimes she closes her eyes and pretends to be asleep, which is another way of saying no.

Elisa does not like 

heavy metal and/or rock music. She prefers clear melodic music with simple instruments that is easy to listen to with coclear implants. She loves Frank Sinatra’s voice! 

being left alone. With her medical conditions it is vital she is not left alone anyway, but if she realises she is alone it terrifies her. She is happiest when someone is touching her, when she can sense someone’s attentiveness. 

there are a couple of episodes of Futurama she does hate with passion. She will cry if you make her watch the whole episode of  “Yo Leela Leela” (Season 6, Episode 19) – especially on the bit where the other TV shows are trialled on the orphans.  Her absolute favourites are “Why Must I be a Crustacean in love?” (Season 2, Episode 9) – especially the bit where Dr Zoidberg lifts weights in a gym – and “Clockwork Origin” (Season 6 Episode 9), especially the bit where robo-dinosaurs are fighting and Fry is almost killed. 

She hates being on her tummy. With poor head control, her face is pretty much squashed against the floor if she is put on to her tummy. She hates it. 

She picks favourites.

Mummy used to be her favourite, but for years now she’s been a devoted Daddy’s girl. She picks favourites from all the people who care for her, from school to hospice and respite services. She reacts in bigger measure to people she likes more.

She will give me a nice smile – she will grin like a maniac to her father.

Elisa loves people and attention. 

It is best if she can have as many people admiring her as possible. She’s never been shy, and unlike her mother, she loves being in the centre of the attention. She loves watching people’s reactions to her; she loves big smiles and expressive faces! 

She understands tassels – a tactile body sign language which is used to let her know what happens next. Touch is important to her, not only in comforting way, but as a way of communication too. 

She is interested in others and likes people watching. She gets entertained by watching kids running and jumping.

Traffic has always fascinated her: she is never bored at a bus stop if she is able to watch the cars go by.

She loves being out in fresh air, she adores the sunshine and wind on her face. The best place to be is being cuddled; though do not overheat her, she does not like being hot and sweaty.

Elisa is diagnosed with

  • cerebral palsy, which makes her immobile. She cannot walk or sit unaided. Her cerebral palsy is described as dystonic and dyskinetic, meaning uncontrollable and involuntary movements of her limbs; also, she gets really stiff and suffers from cramps.
  • deafness; she cannot hear a thing without her cochlear implants 
  • cerebral vision impairment: she is registered blind. She can see, but her brain muddles the visual sensory input a bit. Also, she’s short-sighted.
  • epilepsy
  • reflux and unsafe swallow; Elisa is completely tube-fed

But as you now know, she is not her diagnoses. 

Who is she? 

An outdoorsy little geek, who loves being in the spotlight of attention.  A sassy girl, who likes a violent robot Bender and adores Frank Sinatra’s deep voice. She is my precious first-born, who is perfect just as she is. 

PS. You might know her by a different name – read here why she carries a nickname here in the blog!

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She is home.

I am so happy to announce that Elisa was discharged from the hospital ward on Sunday. Elisa couldn’t be more thrilled herself, even though she does love all the attention she gets from the staff at our local hospital.

Elisa laughed and giggled the whole way home.

I wish we would have had the cameras already filming when we had Elisa settled down on her beanbag. Usually, Melody would keep a safe distance from Elisa’s dystonic hands and legs, but this time she cuddled straight up to her. It was so sweet we were paralysed by the sight of it, only able to coo and aaw on point. Elisa was surprised and happy about her little sisters approach, and as usual, tried really hard to control her jerking limbs. 

It feels so good to have her back home.

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Under the Strain

Before it was all on us adults – and Ruby. Ruby was old enough to understand, and if not, we were there to listen and talk to. Every time Elisa was in the hospital, us parents played ball, conveying our feelings and doing what needed.

As said, taking Elisa to the hospital is so routine to us that it’s more of an annoyance than painful procedure.

There she is again, looked after by nurses and doctors who we know very well. She’s got chest infection: she is prone to have those.

Capture from the old Facebook-page.

First, it did not hurt much.

Then the terror on the youngest cry shook me, awakening me to see the situation with fresh eyes.

Before, Melody was too young to understand. She was easy to distract and she took comfort in continuing routines.

She is fooled no more.

She can clearly see her sister is not here and wonders why. She asks after her, not understanding why Elisa cannot come home. She misses her father, who is looking after Elisa during day hours. She knows something is not right.

She was quiet when we walked on the long hospital corridors. When we found her sister, she looked confused. There was too much going on in the room, nurse doing observations on the patient that is Melody’s big sister, a carer giving a report on Elisa’s being, Daddy asking for cuddles. Melody hid away behind furniture, found carers snack stock and helped herself. She couldn’t make sense of the situation, so she made distance to it.

It pains me to see her sisters confusion, her longing to have her family back. Her reactions to this is a unwelcome reminder of how this is not okay, how this is so unfair. Every day we endure apart, the more it hurts. In a way it is odd; Elisa’s record stay in the hospital is 101 days. So it “shouldn’t” hurt this much.

I keep fighting tears.

“She will be okay,” Dan keeps saying, misreading my emotionality for being worried for Elisa. I am, but I know she is going to be fine. She is on the mend, her colour is already better, and she is happy.
“I know,” I say frustrated, “but this, this is so unfair. Going in and out of the hospitals like this.”
“It is her life,” he says.
“It doesn’t make it more fair now, does it.”

Even though it is only the third night apart, I try not to make any assumptions about when my first-born could be discharged from the hospital. We just.. have to take it a day by day.

Sometimes
you have to be at your strongest
when you are feeling at
your weakest

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