All Posts By

Ellly

Jan 26
0

On the gastro!

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The day after I posted about the previous gastro attempt we got a letter in the mail asking us to be admitted the following week – we were going to take a second shot!!

The paediatric surgeons were lined up, Mikaere was first. The adult MRI machine below the paediatric OR was booked and scheduled just before the surgery.

We signed all the forms, did all the fasting, and after a sleepless night (are hourly obvs on a healthy child really necessary?!), woke bright and early, was gratified to hear there were currently TWO paediatric intensive care beds available and we waited for our friend the anaesthetist to come by.

The look on his face when he walked in gave it all away.

The MRI Machine was broken. BROKEN. We had a choice, we could either do the gastro without the MRI or we could retry at a later date.

It was a no brainer, at the risk of it all go wrong with the anaesthetic, we’d purposely organised everything under one anaesthetic, including skipping the peg and going straight to a button.

Having the MRI under a second anaesthetic wasn’t in the plan, and we weren’t willing to risk it.

So we packed up and came home. For the second time.

When our nurse found out, she laughed. It set the tone, because of course we were frustrated but, this just seems par for the course. When I asked how frequently the MRI Machine broke, our guy said he’d never known it to be out of action, ever.

So off we go. No gastro as yet, we’re waiting for the stars to align.

Jan 24
0

On being open to the special needs baby groups

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Last year was a year of fear. It felt like we spent the entire year fighting fires and when we weren’t we were on the watch for smoke.

Mikaere didn’t spend much time around other people. We kept him inside his safety bubble as much as possible – no children’s group, no mummy and me music time, no playgrounds.

Nothing where children with coughs and snuffles could share their illnesses.

In places we had to go (like hospital waiting rooms) Mikaere was in his buggy with the rain cover on. It keeps out rain AND germs from other people.

We also had enough kit to manage any coughs or colds at home. The o2 and suction and the pulseox.

I think we did a great job, Mikaere only had one hospital stay due to rhinovirus, and only two a&e trips/stay at home dips (enterovirus I still hate you) which we weathered.

Considering how vulnerable he was a small wee babe, I think we did okay.

But Mikaeres a bit older now. A bit less vulnerable (we hope) and also doing really really well. So while things are good, we relaxed a little and started two special needs baby groups.

I still have the fear and question constantly whether doing this is a good call, but we’re trying. I think the benefits for socialising and regular ‘fun’ appointments outweigh the risks a little bit (we’re also a long way through term time when most kids are over their September illnesses, which helps).

One group is a physio/play session at our local Small Steps. It’s amazing. Our little group is made up of three boys, at a similar level to Mikaere (ie, not sitting or rolling) and for an hour or so it’s like a physio session but with toys and singing. We as parents run through a supervised set of activities and exercises with our babes and have a nice chat at the end. We’ve been to one session and while it was a mission getting there I was pleased we went. Pleased Mikaere responded so well. I’m looking forward to going back.

The second was a music and me time at an Enhanced Children’s Centre – another centre for special needs kids. This session was less structured and awkwardly the session overlaps with the time Mikaere’s usually napping. Still, we went. He enjoyed the end of the session and proper got involved. It was a lot of sensory action with music. The range of ages and abilities in this group was much wider.

Here’s the thing I struggle with special needs play centres (and perhaps neurotypical parents do this too at nursery, I don’t know) but it’s so hard not to do the comparison glance.

No one offers their diagnosis up front (cause would be weird – our babies aren’t their diagnosis) so it’s all taken in with a side look. That baby is head holding, but has vision issues. This one has uncontrolled spastic movements, just like Mikaere. This baby is grasping and exploring their mouth, I wonder if Mikaere ever will. This girl is going for her hearing aid, just like Mikaere does with his NG.

And while I’m side looking so is everyone else. Is your baby more or less disabled than mine?

It’s weird. We’re all carefully orchestrated by the centre staff, and we’re all focused on our children.

Before these groups, our world of special needs was defined by our drs, and medical appointments and therapies. There is no comparison, because it’s all about Mikaere. With NKH, our support group is online – so there is some distance.

These groups are all right there and I’m realising our experience and our special needs life is just one of many.

Still, I don’t think Mikaere is bothered. As long as his dummy is handy he’ll tolerate the physio and sleep through the music. Best take his lead then, right?

Jan 22
1

On honesty in fundraising

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Last year I got blasted on Facebook when a family were fundraising for an item that didn’t do what they said it did. I got really excited when they said this item helped reduce the frequency of seizures. When I asked about it, it turned out it’s just a sensory toy and has no effect at all on seizure activity.

Maybe my moral compass is a bit more north than other people’s, but when it was clear it didn’t do what they said it did I very politely suggested they change the description to be more accurate. Needless to say that suggestion was followed with a lot of name calling and sarcastic bs. I stopped following the thread after the second stupid comment and left the keyboard warriors to it.

It’s a tricky thing, because I feel like when we fundraise it’s so so so important we’re transparent and honest. That when we come to you, our family and friends to ask for help – it’s important to us that you trust us. That we’re as transparent as we can possibly be. We’re so grateful for the love and support and the donations and I want you to know we respect and are grateful for every donation given.

Because of that, we always try to be very clear where your donation is going.

When we say the proceeds are going to Joseph’s Goal for NKH research they are. They’re delivered directly to Joseph’s Goal via justgiving or mydonate (if giftaid is available) or straight to their bank account if gift aid is not.

When we say they’re going to Mikaere, they are. We have a bank account that’s set aside for his therapy costs and it’s only used for what we said it would be (in this case neurofeedback therapy and QRI/LLL therapy) and that’s it. Your money goes where we said it would, no if’s or buts about it.

When we choose therapies to fundraise for, it’s because we’ve spent so much time researching through half a dozen different options for the ones that will provide the most benefit for Mikaere. Reading endless papers and articles and reviews to make sure there is some evidence that supports the benefits, that the risks are minimal, if not nonexistent. So when we say we’re fundraising for neurofeedback therapy and QRI/LLL therapy – it’s because we’ve done the ground work and there are case studies and research that suggest it’ll help.

Even if some of it seems a bit woo-woo. It’s at least woo-woo with some nice evidence based research to back it up.

What we will never do is lie about what the therapy does. If it does not help with seizures we will not say it does. If its not scientifically backed we will not say it is (though, let’s be honest. This is us. All of Kai’s therapy is scientifically backed!)

It’s important to us that we’re honest. Any donation you make goes exactly where we’ve said it will, to therapies that are evidence based and (will hopefully!) help what we’ve said they will.

We raised over £50,000 last year. We don’t have exact numbers, but a good guess would be about £53,589.50

£49,620.50 went to Joseph’s Goal. We get a spreadsheet every month with a breakdown of how much they’ve received, and from what campaign.

Joseph’s Goal sent £85,000 to Nick Greene and his team last year, which will be used towards gene therapy specifically for NKH. Isn’t that amazing?

It’s been a huge confidence booster that our fundraising has helped. That we’ve had a direct affect on the research that can be done. It feels like we’re helping. Like we’re doing something. Like we’re not taking NKH lying down.  It gives us hope.

We’ve raised approximately £3970 to go towards Kai’s therapies. That’s not a small amount, hey. That’s quality of life changing stuff. We’re using the first of it for the LLLT laser, closely followed by neurofeedback therapy (due to start after that pesky gastrostomy comes through).

Most of all I just want to say thank you. Thank you for trusting us, thank you for the help and the love and support. Thank you for everyone that’s bought an Eva book, ran an event, or donated to Kai’s campaign. Thank you everyone who has bought a ticket to the Charity Quiz and came for the fun.

We couldn’t have raised this much money without you. We couldn’t have made such a positive change in the research that can be done with NKH without you.

You guys give us hope. Thank for the love. You guys are the best.

Jan 19
0

On being fitted for a superhero suit

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Mikaere has low tone (also know as hypotonia). He’s floppy. This isn’t anything to do with his muscles – he’s not weak. He has muscle strength and can kick and grasp and do all the things – the problem is not with his muscles. The problem is with his brain and the pathways that say hold this muscle tight. The signal doesn’t always go where it should, and as such his body doesn’t always hold itself up like it should.

In short, Mikaere has a hard time hold his posture straight and is at risk of scoliosis. Womp.

But knowing this is an issue we work with our physio to help hold it off as much as we can. Which is why we’ve tried all sorts of things, hipp helpers, a sleep system, bilateral foot support things.

Now we’re trying a DMO (dynamic movement orthotic) suit. It basically looks like a super hero suit.

It’s a suit custom fit just for Mikaere (not even kidding, the ortho lady measured every inch of him at least twice. It took a good twenty minutes to do).

The idea is that with a custom fit, increased pressure across the different muscle groups can improve proprioception (which is the sense of you knowing where your body parts in relation to the rest of you, and the strength/effort involved in moving all those parts) and lead to a better awareness of your body. Hopefully we’ll see better posture, more stability and more intentional movements.  Fingers crossed.

He’ll need to wear it all day every day, but if it means we’re avoiding (or if not avoiding, reducing the severity of) scoliosis, then we’re all in.

Originally we thought we were going to have to pay for the suit privately. Our borough doesn’t support the use of DMOs. We accepted this, and had the initial appointment (at a cost of £130) and were saving away quietly for the other £1985 that it was going to cost. We were lucky, we had a charity donate £400 towards the cost of it.

But, even better for us, is that we got referred to orthotics at our specialist hospital (rather than our local hospital) and they’re going to cover the cost! Woohoo! It means we can get the £400 returned to the charity so it can do some more good for someone else *and* our savings can go towards another therapy for Mikaere. Happy days!!

So Mikaere’s getting his first super hero suit. It’s going to be amazing.

 

 

Jan 15
1

On the good times

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You guys. I know my posts have been light over the Christmas break. Part of that is because Mikaere is doing so well.

SO WELL.

So well, he’s having seizure free days (touch all the superstitious wood, what a miracle).

We don’t know why this is exactly. I wish we did. Mostly we speculate. It could be his meds are perfect. It could be he’s not ill and he’s had time to relax and now his body is managing his NKH systems rather than an infection or other kind of bodily stress. It could be anything.

The big thing is the knock on effect this has. Mikaere is awake and aware. His vision is improving, with him proper focusing and following on objects, even ones that don’t make noise!

He’s vocalising. Laughing and chatting and crying, protesting, using his voice (!!) to indicate how he’s feeling!

He’s eating orally. Like a champ. Not all his feeds but a ginormous portion of them. He shows likes and dislikes, too. Custard is in. Beef and vege he’s not 100% about. Broccoli is a big fat no go.

He’s more aware of his body, a lot more wriggling, and dare I even say it, for a second or two he can even hold his head up. I’ll take those seconds as a win. I’m positively delighted that’s even a possibility.

He’s even been able to move back into his own crib, and we’re even able to (very tentatively) trust the baby monitor and be in another room (!!!) while he’s sleeping. Oh my days, being in another room while he’s sleeping and only watching the baby monitor feels positively insane. Crazy. (We’re wild parents, look at us go!)

Mikaere is doing WELL.

Here’s the flip side. We’re on a peak at the minute. A glorious glorious peak where Mikaere smiles (!!) and we’re all beyond delighted with his progress, because there IS progress. He’s developing (!!). Thriving(!!!!). Times are good! (!!!!!!!!!)

But we know that everything comes in waves and I’m on edge waiting for everything to slide down into that trough. Waiting for the downslide has me tense. And worried and watching every small move like a hawk, wondering if this is it. Every time we do something I wonder if it will cause that downslide.

I’m enjoying the blue skies that come with this peak, but in a very tense waiting-for-the-next-thing kind of a way. It’s hard to relax into the good times. Hey ho. I’m more than happy to keep practicing 🙂

So, our little baby guy is doing so well. Long may it last!

Jan 12
1

On Introducing the Chair

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Mikaere has outgrown his tumbleform – it’s a special blue that reclines. It looks like a kids chair, and it’s wonderfully blue. The tumbleform looks fairly innocuous. It’s like a bigger version of a bumbo. Something that wouldn’t look out of place in a home with children. It looks like this:

Technically he still fits in it. The problem is that he’s so wriggly, he throws himself out of it. By that I means he throws his head forward, waves his arms about and his top half topples forward. He doesn’t have the tone to pull his top half back and once gravity has hold his head continues, his shoulders and torso follow over the side of the chair and he’s lying crumpled face down on the floor. (Sidenote: I have only allowed him to fall out of his chair once. I wanted to know if he knew there was an unpleasant consequence whether he would do it again. No such luck. I put him back in the chair and immediately he threw his head forward headed for the floor).

The tumbleform was no longer safe. (Second Sidenote: yes we have straps. They’re not particularly comfortable and squawks like a banshee until the straps are off. It’s a rubbish experience for everyone).

Not having safe and confortable seating is a problem. Kai spends so much time on his back and unless he’s being held or doing physio he’s not upright. Which means unless I’m holding him he’s supine. Booo! So we talked to our OT (which was such a mission because she was ill and away frequently) and eventually, with much emailing and quiet advocating we got a chair.

I was pretty shocked when I saw it.

This chair looks like a giant piece of medical equipment. And sure, it goes up and down and has wheels and a tray and all the fancy medical support you could want. Except that it is intimidating af (despite the bee on the side). And I know, I know we already have the oxygen tanks and stat monitors and suction machines and all the syringes and medication… but you can hide those away in drawers, cupboards or spare rooms.

This giant piece of medial equipment would be living in our lounge. It outted us as a special needs family. It feels like one small step away from a wheelchair. Emotionally it’s a bit of an adjustment. But if I latch on to the idea that it’s good Mikaere, if it’s good for him my fear and grief about being further away for the neurotypical path can get on board with what we’re doing.

So. Kai has a bee chair.

It’s not perfect, and it’s fiddly to set up and his chin is almost always on his chest… but he’s sitting. Supported and safe. The hydraulics mean he can be at standing height, table height or on the floor. The wheels mean he’s easy to move about the flat (and to wheel out of the way when he’s not in it). It’s also been good for dancing in the kitchen.

The best bit is having him at the table with us at mealtimes. That little tidbit has been the nicest. He’s tolerating it better and better. It’s not perfect (trying to figure out a way to keep his chin off his chest without tying his head back is a problem I haven’t yet solved) but it’s better than lying supine many hours of the day.

So. Our first piece of giant obnoxious medical equipment. We have it.

Jan 10
1

On that time we almost got a gastrostomy

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It had taken months and months of planning – Kai was going to have an MRI and a gastrostomy under one general anaesthetic.  We need the MRI to set a baseline for any treatments we have going forward. We need the gastro to improve Kai’s quality of life and reduce the risk of drowning him every time we feed him. But getting the radiology team and the paediatric surgery team on the same page to do both procedures under the same anesthetic has been a massive wrangle. In the end it was two wonderful anaesthetists who we met in our time in intensive care who came to our rescue.

They agreed – because of the dreaded NKH and how kids with NKH respond to anaesthetic and ventilators we want to reduce the risks. So doing both procedures under a single anaesthetic was a good idea (woohoo!). They got the surgeons to agree it would be best, for Mikaere, to go straight to a button so he wouldn’t need a second anaesthetic down the line. They found a spot in the schedule of one of two surgeons who were willing to skip the PEG and go straight to a button. They convinced the radiology team to let us use the adult MRI machine, because it was directly underneath the paediatric OR’s, and they wouldn’t need to transport Mikaere across the hospital unconscious (something that is quite frowned upon). They convinced both teams to be free on the same morning, and to bump Mikaere’s procedure to first thing to reduce the waiting time and the time Mikaere would be under.

The anaesthetists suggested a loophole to fasting – which we trialled beforehand. Just to see how Mikaere would react to a stomach full of dioralyte with his caustic medications instead of food (because we know he doesn’t tolerate them on an empty stomach, and if he doesn’t have them we run the risk of seizure comas, which is the opposite of what we want to happen when he’s under an anaesthetic). We went into hospital a day before the surgery was scheduled to make sure the fasting went without a hitch. And if it didn’t they had the back up plan of IV meds, ordered in especially for Mikaere at great cost.

It took several months of planning, cajoling and begging to line up all the dots, and we finally finally finally got the go ahead.

And so, we were in hospital. Waiting for our gastrostomy.

Except (there was always going to be an except, right?) – it’s the middle of winter, and kids all across the country are having a tough time breathing. There was not a single intensive care bed free for after the surgery. Because Mikaere is likely to have difficulty coming off the ventilator, he needed a PICU bed. And with no PICU bed, there could be no surgery. And there was not a PICU bed available. (Well… that’s a bit of a lie. There was a PICU bed, but it was needed for a child with a malignant brain tumour. I think it’s absolutely right that child got the bed rather us, with our elective surgery).

To hammer home how slammed intensive care is at the moment, we were told they just sent a child down to South Hampton (an hour and a half away…) to the last intensive care bed they had. The next closest intensive care bed available for kids was Nottingham. NOTTINGHAM. It is unbelievable how slammed the paediatric intensive care is right now (and how horrifically underfunded the NHS is that no centre can afford to open up a unit with more beds).

So. No gastrostomy. Our anaesthetist was so frustrated about the lack of intensive care bed spaces. It’s a real problem, hey. I didn’t even know. For me… I was a bit sad and quite a lot relieved. Sam and I had to have one of *those* conversations before the procedure. We sat in the dark by Mikaere’s hospital bedside and had one of those Quality of Life discussions. There is the real possibility that Mikaere won’t make it off the vent after going under an anaesthetic. One of the decisions we have to make was how long do we allow Mikaere to stay on a ventilator without waking up before we try extubate. It’s a very scary decision to have to make, and sitting in the dark I really didn’t want to make it. I still don’t want to make it, not really. Trying to make a decision of letting go is tough.

Call me silly, but I’m grateful we don’t have to make that decision right this minute. That we’ve got a small reprieve away from risks and quality and the medical everything. We’ll tackle it all when it comes.

Jan 09
1

Happening Next Week! Charity Pub Quiz

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The first week of 2018 is over (so quickly already!) and we’re gearing back up into the world of medical appointments and therapies and all sorts. We’re also having our first charity event of the year – Let’s Get Quizzical. It’s a pub quiz (!) and it’s going to be amazing.

We’ve got two stand up folks (the phenomenal Tony and Tess) who are clever, insanely hilarious and understand that the fun part of the pub quiz is being able to answer at least some of the questions. We’ve got spot prizes and raffles and some fun time hampers. There will be snacks, and wine and beer available for a small donation. It’s going to be a great afternoon, and an easy way to spend a Saturday.

I’m super looking forward to it (though don’t you worry, while I enjoy pub quizzes I’m fairly rubbish at them. Your competition in me is light at best!)

Teams of 8 can book an entire table at the event for £100 which can either be booked online here or you can contact Tony, Tess, Sam or Elly directly. If you can’t get a full team together, book a single ticket for £15 and we can organise you into a team on the day.

It’s going to be grand. All proceeds on the day go to Joseph’s Goal – we’re relentless in funding a cure for NKH (Non-Ketotic Hyperglycinemia). Every small bit helps, and every pound brings us closer to a cure for Mikaere.

Buy Ticket Now

Buy a ticket, and come join us. It’s going to be amazing.

Jan 07
1

Happy New Year!

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What a year, hey?

We saw 2017 in on the 5th floor of the children’s wing, looking out the window of paediatric intensive care step down unit. The London fireworks were going off along the skyline. We’d been told that hospice and end of life care was Kai’s best option, and I couldn’t possibly have imagined the year ahead. I was so full of fear, that the new year would be one of grief and suffering and goodbyes.

Instead we had a very different year. Still with the fear and suffering and the grief, but there was joy. And love, and happiness. I’ve said it before, but I really wish someone had said that despite that hard times there would still be love and joy and good times.

Thinking back, this year was full of firsts.

The first time Kai smiled (a milestone many nkh kids don’t get to). The first time we heard him laugh. The first time we were home for good. The first seizure cluster, the first a&e visit, the first round of therapies and appointments and the first time I had to advocate name bear loud. Our first NKH conference. The first set of fundraisers, the first time we spoke publicly to strangers. Kai’s first birthday.

There were many firsts. We survived, and I can’t even begin to explain how huge that feels for us. We made it through this year. We made it, all three of us, despite being told at the outset it wasn’t going to happen. Take that doom and gloom paediatric neurology consultants.

We love Kai. It’s ridiculous how much, and 2017 was all about love for him. Taking the little moments of snuggles and chatter. Intentionally stealing moments to love on him in his world instead of rushing through the day (you’d be surprised at the number of appointments where Kai is more an accessory rather than the star. He’s often talked over and about rather than to).

In our yearly review we worked out how many appointments and things we’ve had. It’s a doozy. Kai’s had over 47 hospital appointments, 9 A&E visits, saw 28 different consultants/therapists across 853 appointments across 4 different hospitals, has 4 support nurses who visit weekly, spent 11 days in intensive care, 51 days in hospice, had over 900 seizures and had over 9040 medication doses. We also raised over £49, 572.00 for Joseph’s Goal and NKH Research.

It was this year that we truly learnt what it was like to be special needs parents. It took us a while to find our feet, but we’re pretty confident now. Kai has the support of so many, which means that we can spend less time being his person admin/nurse/advocator and more time just being his parents.

We saw 2017 out at home, with our little baby boy nappy between us on the couch while we celebrated with champagne. It was perfect.

What a year. Here’s to an even better 2018. Happy New Year you guys x

Dec 24
1

Merry Christmas

By | #teammikaere | One Comment

So, it’s been a while. We fell off the wagon a bit since Kai was ill. He was ill so for long, and we’ve been laser focused on him. On making him comfortable, doing everything we can to help him recover all skills he’d lost.

It took *weeks* – weeks of gentle gentle everything. Gentle feeding, gentle stretches, gentle patterning, gentle encouragement. Eventually Kai came back to us, recovered some tone, regained his eating skills, started vocalising again.

And while all this happened I held my breath. I didn’t trust the upswing and was super tense waiting for the swift down to follow. I didn’t want to share how good he was, in case I invoked Murphy and his law (The Fear makes me more superstitious than I ever thought I could be). So haven’t shared, and I’m sorry for that. You all have been our biggest cheerleaders, so I’m sorry for depriving you guys all the good times we’ve had. Here’s a happy Kai:

And then there was the book. Oh my days, the BOOK. I’m overwhelmed with the amazing response we’ve had – we’ve sold over 200 books (!!!!) I don’t have all the languages out yet, but I’m working on it. Some of the translations aren’t perfect so I’m working on fixing those already in print before ploughing on with the other 20 languages waiting for me.

But you guys, it has been so heartwarming to see photos of Eva with your little ones. Honestly, it makes me SO HAPPY. And reading the reviews has been so nice – you guys are the best!

(Sidenote: if you bought a book and could leave a review on Amazon, that would be amazing!)

And then, we had a journalist from our local paper talk about Kai and NKH and Eva (here) which was amazing.

And before we knew it, it’s Christmas Eve. Time, it’s run away with us.

Kai is good right this minute. He’s vocal and wriggly and has all the opinions. We love him so so much.

Thank you, all of you, for love and support and kindness this year. Tomorrow marks the day we were admitted to intensive care, and in the following days we were told that we should say goodbye Kai, and move on to hospice.

What a difference a year makes, hey?

Merry Christmas you guys, we love you x