Apr 27
1

Update on the button + vomit

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Before Mikaere had his surgery, I spoke to anyone and everyone whose child has had a gastrostomy. They all said the same thing – it was game changing for their child. And while there was a lot of positives, I was unprepared for the epic amounts of vomit.

Before the gastro Mikaere never vomited. If he did, it was very very rarely and only ever when he was ill. Now? Now I have vomit in my hair most days. I have buckets of things soaking in my bathtub to get out the vomit stains. My carpet smells of vomit. My washing machine is on an endless cycle of things that are covered in vomit. My clothes. Mikaere’s clothes. Sheets, muslins, blankets, couch covers. Today Mikaere even managed to vomit over the recycling bag, getting (and I kid you not because I had to sort it) every single piece of recycling we had covered in vomit.

Vomit rules our lives right now. Please hold off on the advice giving – we’ve done everything. Reduced the feeds, slowed the feeds, spread them out over the day. It doesn’t matter whether it’s blended food or formula or dieralyte or even just plain water. Gaviscon can suck it. He’s already on omprezole. He’s always upright when we feed him, either reclined or in supported seating. It’s not directly after a feed, it’s about 2-3 hours after. I’m not going to consider a fundo (like I said – I’m not looking for all the advice here. I’m just telling you where we are right now. Yes, we’ve talked to the surgeon, our paediatrician, our gp and all our nurses know).

We think it’s because of the gastrostomy. With the way his stomach has been hitched to the abdominal wall, which means food goes in, and is forced (because of the way the stomach is slanted) straight into the top of his intestines. This has changed the way he feels when he has food in his belly and because of how his stomach is pulled (unnaturally up towards his abdomen) it’s put pressure on the lower esophageal sphincter, which is that the nice bit at the bottom of your esophagus that keeps your food in.

There is research that says a lesser curvature gastrostomy reduces the incidence of postoperative gastroesophical reflux (aka, vomiting because of the gastro – source) so for everyone due to get a gastro – you’ve been warned. Asked for a hitch with a low curvature and make your surgeon agree.

In the meantime, I’m at a loss. I don’t know if this is going to be a forever thing (I desperately hope it’s not) or whether as his body acclimatises to the new stomach position and the stress on his oesophagus he’ll be able to hold food down.

Blah is how I feel about this. Blah and heartbroken for Kai who hates vomiting. With a passion and cries his little heart out when it happens. It’s heartbreaking.

Stupid vomit. We’re over it.

Apr 25
1

On a fundraising update

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We as a little family have a fundraising target, aiming to raise £100k for NKH Research.

Thanks to you guys we’re currently at a whopping £53k (and counting!) – and that’s the truth, the bit that it’s thanks to you guys. Most of our fundraising has happened through other people, people who have held bbqs or cake morning’s or run a marathon. Small, easy things that have added up.

So I wanted to update you really quick on what’s going on:

1. The Eva Books!

I will forever love you guys for helping me translate the Eva books and even more for buying them! I’m still working my way through the translations but there is a whopping 15 Eva books available on Amazon. Eva is available in 15 different languages. Well, I say that, but she’s actually bilingual (all the translations have the English *and* the translation, for bilingual families). Like this:

 

 

Additionally, I was able to send off the first royalty donation this month, a whopping £430 went to Joseph’s Goal. Considering each book makes just over a £1 in royalty fees, I’m pretty happy with that.

If you haven’t got your copy yet, you can buy it from booksforwednesdays.com

PS – THANK YOU to everyone who has sent in a picture of their kid with an Eva book – you guys are the best!

2. #IFHNKH Tee’s

Did you see my previous post about the amazing IFHNKH tee’s?? I won’t rehash it, but I’m pleased to say we’ve sold a BUNCH of them – if I had shelves stocked I’d say they’re flying off (buuut thanks to the wonders of dropshipping, I thankfully don’t need to store shirts. They’re printed and shipped on demand, right after your purchase goes through. Best thing ever, hey?)

I just wanted to say thanks to everyone who had bought one. Each of these tee’s has a small margin on them and you know that small margin is going straight to NKH Research. Oh yeah!

If you want one, they’re available right in the teammikaere.com/shop  If you’ve bought one – send me a selfie! I want to see you in your #ifhnkh shirts! x

PS – I’m still trying to figure out a decent dropshipping for the US. Will keep you posted!

3. BV Love for the phenomenal Adam

Adam, (who, prepare yourself for a throwback: having just the company, joined Sam on the last day of his ridiculous 72 mile walk along the Thames Path AND was on the winning Charity Quiz team) is riding from London to Paris. On a bicycle. 243 miles (did any else just cringe?)

Honestly, we’re so grateful that he’s doing this, so grateful that he’s raising funds for Joseph’s Goal and #teamMikaere, we’re genuinely blown away by the support. What a stand up guy, hey?

If you’re on of the #OTOD BV family and you’d like to #bgenerous – Please donate to Adams ridiculously amazing event at justgiving.com/fundraising/lonparmikaere

 

4. Kiwi Cross Crew Love for the phenomenal Margot

Margot I met at a ridiculous French Party when I first moved to London. She’s one of the most genuine, most lovely people I know and last weekend she ran her SECOND marathon for #teamMikaere (having just run the Berlin Marathon for us last September) – this time in London. She’s set a goal to raise £1k for Josephs Goal and #teamMikaere – and SMASHED IT.

At the risk of repeating myself, we’re so grateful for the love and support shown by Margot. Fun fact, she was the first person to ever babysit Mikaere. We were so pleased that she was running for #teamMikaere, we printed a London Marathon shirt, just for her.

If you fancy highfiving her, you can donate to her campaign: justgiving.com/fundraising/margot-knight

5. Fancy helping us fundraising?

We can’t raise these funds without you. We’ve asked everyone for cash over and over and our social circles are saturated (sorry about that). But what we can ask is if you could help us – could you organise a bag pack at your local supermarket? Could you put us down as your local cause at your nearest Waitrose? Could you do a cake morning at work, 50p per slice? Or a raffle? Or a BBQ one weekend, or anything. Whatever floats your boat.

Because here’s the thing – for every £5 we raise that’s £5 towards a cure for Mikaere. There is so little funding… it costs well over £300k to run a research lab for a year, and it’s managed between grants and fundraising by people like us.

We have hope in a future only because we know the only thing between us and a cure is money. So set the bar low, if you could help us raise £20, £50, £100 – it adds up and it makes a difference. Please help us give Mikaere a future. We can’t do it without you guys.

Apr 23
1

On the Boston Conference

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I don’t know where to begin.  I left Sam and Mikaere early on a Wednesday morning and caught a taxi the airpot. I left in a rush, which made the leaving part a twinge easier (because leaving your sweet, medically fragile child is never going to be easy, even in the best of times).

Then, before I knew it, I was in a cute little church hall with facebook come to life. I can’t even begin to express how amazing it’s been to meet the people I’ve been talking to online for the past year. To meet Tarah and Eric, Drake’s Parents. Maddison and Dalton, Kanes Parents. To meet little baby Willow, Jade and Larry, Evelyn (Bella’s Mom) and Trine with Karine and Robin with the most beautifully sweet Saige. To finally finally meet Kristin, the mighty force behind the NKH Crusaders and her son Thomas. To be reunited with Emma and Paul and Joe, the famous face behind Joseph’s Goal.

I get these will just be a long list of names for you. But I’ve been reading these names daily for the last 17 months. I’ve been sending messages and liking posts and commenting on photos and asking advice. I’ve been sharing their grief and cheering their joys and until this week, I’ve only been privy to their lives through a screen. Really. In my head I was still associating people with their full names and avatars, like you see on Facebook.

There was a lot of love at this conference, a lot of kindness and a lot of people who GET it. Who live a similar life a million miles from where we do.  To be in the same room? To cuddle sweet Kane and to hold Willow and to sit with Joe? You guys. It was like my heart exploded – these kids were just like Mikaere. They were JUST LIKE HIM – I was in a room with my tribe. I can’t even begin to explain what an experience that was.

To leave my little guy with Sam and fly across an ocean was tough, but what I didn’t understand was that I was going to be with what essentially is my NKH family. It sounds mushy af but it was wonderful. To be with people who understood seizures and blowing up noses and were happy to talk out anti-epileptics and b-vitamins and how there has to be more going on in the folate system than we know about. It was like being thirsty for company and arriving at an oasis. And I drank my fill, believe you me. So many beautiful people, so many beautiful NKH babies. It was AMAZING.

Dr Van Hove and Dr Halder were also there  to share where they are at with their research. I was very interested to hear the directions Dr Van Hove was exploring. Dr Halder was less straight forward with her work – there was a lot of holes in her talk and she’s hasn’t made as much progress as either Dr Nick Greene or Dr Van Hove, but it sounds like she has a lot of support and financial backing which is positive.

Essentially, Van Hove is looking at Chaperone Therapy, which is to say he’s looking for an existing FDA approved drug that will be able to help stabilise the proteins our kids make, allowing them to part-process glycine. This may even allow them to take a step down on the severity scale, drastically improving quality of life for our children. He’s also looking at the Serine hydroxymethyltranferase system, which is a system that keeps serine and glycine in equilibrium.

It was a very exciting conference, I feel like there was a lot of moving parts that came together in a positive way, particularly in terms of the charities and the researchers, and how we as #teamMikaere fit in, and how we can support the bigger players.

Unfortunately, the main theme that shone through was funding, and the lack of it. It costs approximately £200k a year to run a small lab at bare bones. What’s more, between the three researchers funds from the usual family charities are now diluted. Its difficult, because I know NKH families are already stretched, and have already reached out to their social circles for donations.

Funding, it’s always going to be the bottleneck between us and a cure. It just kept coming up again and again, how much funding is required and how little there is – some of our researchers are seriously struggling to stay afloat, which really was difficult to hear.

When the conference drew to a close I was sad to say goodbye. We’d only been together for three days but a lot happened. There was a lot going on and I’m grateful we got the time we did. What a whirlwind trip.

I know there will a UK Conference later this year and I am beside myself excited to be at that one too. It’s important, hey? This time with people who get it. I’m glad I went. Being away from Mikaere and Sam was rubbish, but I’m still glad I went.

From Left to Right: Kari and Maddison (Kane’s Grandma/Mum), Me, Jade (Willow’s Mum), Emma (From Joseph’s Goal, Joe’s Mum) and Evelyn (Bella’s Mum)

 

Dalton (Kane’s Dad) with Kane and Joe, and cuddles with Kane (honestly, the sweetest little guy!)

Me, Tarah (From the Drake Rayden Foundation – Drake’s Mum) and Emma (From Joseph’s Goal, Joe’s Mum)

 

Dr Van Hove and Dr Halder presenting at the conference.

Apr 16
1

On the Art Exhibition

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Mikaere’s Grandma is in an Art Group. Earlier in the year they ran an exhibition, where a percentage of sales would go towards NKH Research, and they would collect donations, run a tombola and have a coffee/cake morning.

Well. What an AMAZING event!

We arrived late in the day. It was one of those snowy beast from the east days, and the weather was horrific. We half expected the morning to be moderately busy and the Hall to be empty by the time we finally got there. Except when we walked in and with an hour left to go, the hall was PACKED. Loads of people were still there, drinking coffee, viewing the art. It was phenomenal. We even managed to purchase a piece before everything closed down, and as always we enjoyed the visits and talks. We can’t help but feel the village community is behind us.

We found out after that the event raised over a whopping £1600. We’re so grateful that entire groups of people come together to support us. All of the money raised at the event goes directly to Joseph’s Goal, which in turn goes towards NKH Research.

So thank you to everyone who came. Thank you to Toddington Methodist for donating the space, the Toddington and Westoning Art Group for running the exhibition, for donating a portion of your sales, for selling cards and coffee and donating cakes, for running the Tombola and for helping set up and take down. Thank you to everyone who came and donated, who bought a painting or ate some cake.

Thank you everyone for the love and support. We’re overwhelming grateful, really we are. It hits home when we realise we’re not alone in this fight. That there are others that care about Mikaere, and about us, enough to help run events like this. We feel like the only thing between us and a future with our baby is money (which is infuriating, right?) so when a group of people – some who we hadn’t met – pull together an Art Exhibition like this – overwhelmed with gratitude doesn’t even cover it. We feel loved and so fortunate that there are so many people on #teamMikaere.

So thank you to the Toddington and Westoning Art Group – you guys are the best.

PS – if you’d like to fundraise with us – let us know. It doesn’t have to be a big event like an art exhibition, but could be something simple like a fun run, or a bbq or picnic. If you can throw a dinner party, you can throw a fundraiser. Help us raise money for charity?

Apr 11
2

On the MRI

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Mikaere is doing really well, for the most part. We know this. We know his eyesight is improving and his tone and abilities are improving. We know Mikaere is doing the best he can and we’re currently in a time of forward momentum when things are good.

Except that we went and saw a neurologist who said that Mikaere’s MRI showed a loss in brain mass. A loss in BRAIN MASS. There is less of Mikaere’s brain because his neurones are dying.

Despite knowing this was likely intellectually, seeing it spelt out on a black and white MRI scan felt like a punch to the face.

We are doing everything, everything we possibly can to help him. And still, NKH is robbing Kai of his brain matter. His brain is being damaged, constantly. All day every day parts of his brain are dying. It was very very clear, even to me (someone who has no knowledge of neuro-radiology)

flicking between the scan he had with his gastro and the scan he had when he was born just how much damage has happened.

It makes me feel like I’m not enough.

The truth is that there isn’t anything I can do to slow the brain damage that’s taking place.

But I can fundraise for a cure. I can support Josephs Goal who in turn supports Nick Greene, who I feverently believe is closest to a clinical trial that will help he most number of NKH kids. They also support Dr Van Hove, who is the researcher with the most experience in NKH. It’s his research and knowledge that has opened the field for other researchers.

I believe between these two, they’ll find a cure for my baby.

I know I keep banging on. And on and on and on. But, if you’re able please help. Buy an Eva Book. Donate. Volunteer, if you’re able. We’re always looking for help to run fundraisers.

Help us find a cure. Help us find a way to stop stupid NKH from killing more neurones off in my sons brain.

Please help. It’s hard to sit in an appointment to hear his brain is deteriorating.

Apr 09
1

On the #ifhnkh Tees!

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There’s an acronym that NKH parents use when we’re struggling. IFHNKH. Short for I fucking hate NKH. Typically used when our kids are struggling and in pain and there’s nothing we can do. That feeling of helplessness and rage and just… I hate NKH. I really do. It’s a horrific disorder, and it’s caused us no end of grief with Mikaere. When there are no words left to say, IFHNKH is it.

So, I put it on a t-shirt. And now you can BUY that t-shirt (in a number of different colourways), with a small portion going towards NKH Research. (Take that NKH).

If you want one, they’re available right in the teammikaere.com/shop

And while this won’t make much sense to a lot of you – this one is for our NKH family. For the other mamas who are in hospital with their babe, who are facing surgery’s and seizures and vomiting. For all the mama’s whose babes have passed. For all the mamas who are struggling with all the shit that comes with NKH – this one is for you. I’m with you. #IFHNKH

Side note: I also threw together a ‘Perfectly Imperfect’ and a ‘Beautifully Broken and Perfectly Made’ Tees for our beautifully perfect kids with their teeny tiny imperfect genetic mishaps, which is also in the shop.

Note – these drop ship from the UK, shipping to the US is available but the conversion is done with PayPal and I have no idea how that magic works. I’m trying to find an appropriate vendor to drop ship in the US to make it cheaper, so stay tuned!

Note 2 – each of these tee’s has a small margin on them. You know that small margin is going straight to NKH Research. Oh yeah!

Note 3 – Do any men want to see #ifhnkh on a shirt? If you do, let me know. I’ll make it happen for you.

Note 4 – YOU GUYS! These shirts are going crazy! Thanks to everyone who has bought one – if you have, send me a selfie, I want to see you in your #ifhnkh shirts!!

Apr 06
1

On finally finding the right bath support

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When your son can’t hold his head up, let alone sit in a bath unaided (and almost a year ago grew out of his baby bath) what do you do?

For a while we’d just get in with him. And that worked well until bath time was combined with toilet time (I’ve never jumped out of a bath faster). Then we tried a towel on the bottom of the bath, and filled the tub with an inch or two of water (imagine lying naked in a puddle). Blah. It works in a pinch but it’s not especially enjoyable for Mikaere.

We tried an otter seat. An expensive £200 seat with straps that looks like it’s made from pvc pipes. Not super ideal, because it’s got legs and because the bottom of our bath is rounded, those legs push the seat pretty high, so to cover Mikaere’s legs with water we have fill the bath to the very brim. Epic fail. All round fail.

Then our OT suggested the Bealift Chair. It’s a frame that sits on top of the bath, and lowers Mikaere gently into the bath. Perfect. She bought one over to trial (Mikaere really didn’t love it the first time he was in it)

Now, if we could have afforded to drop £420 on a baby bath seat I would have just bought it. But there are other things we’d rather spend the money on, so it was through the NHS we went. But the thing with sourcing anything through the NHS is that you have to wait for everything. It takes about six weeks to wait for the fitting appointment, and another six to get approval through all the chains of NHS management. Once approval is through, they order and at some mystery point in the future it’s delivered.

So you wait and wait and wait and wait. Then, when you’ve given up on the bath support seat ever arriving and are trying to figure out how to change out the bathtub to fit the chair, you get a call from medequip delivery, who want to deliver an unknown parcel in approximately a months time.

It arrived. Eventually. And it worked like a treat.

I think using the support was the first time Mikaere had ever had a proper, submerged bath. Needless to say he fell asleep in its warmth and screamed when it was time to come out. But he was supported and in the bath and came out clean. Win! Thank goodness. Bathing! Now a fun thing!

It’s insane how funding the right piece of equipment can alter the quality of life your kid has. It makes all the faff worth it. To put it in perspective, it took approximately 8 months to from looking to arrival. I suspect that moving forward, finding that right piece of equipment will happen a lot in our future. We’re absolutely living the special needs life.

Apr 04
1

Fly High, Sweet Halle Mae

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It feels surreal. I’m having dinner with Sam, Mikaeres asleep in the crib nearby and everything is just going onwards as if it’s just a normal day. We’re talking and discussing the weather. It feels surreal because I know, up in Manchester there’s a family feeling all the grief and pain and missing their sweet baby girl, as today they laid her to rest.

I’m devastated for them. I sobbed when I found out she’d passed. Which sounds weird, because I didn’t know the family well, only in the NKH circles online. But it hits home because this sweet girl was only two weeks younger than Kai. Because NKH is horrific and I feel like we’re all waiting for our turn. That one day, NKH will take Kai and it will be our turn to feel the grief and loss and pain. I sobbed because when we lose an NKH baby, the entire NKH community feels the loss. It reverberates around and we all grieve. She was one of ours, and one day it will be Mikaere.

We work so hard to keep Mikaere safe, to minimise the risk and give him the best possible shot. All NKH families are doing this. But the truth is that Nonketotic Hyperglycinema is terminal.

This is why we fundraise. The idea of a viable treatment is what gives us hope, that Mikaere won’t be taken from us and we’ll get to enjoy a future with him.

Please help us find a cure. Please help us fund research into NKH treatments. Please donate, or buy a book.

Please help us prevent our babies from dying too early. Because our kids are, genuinely, they’re dying.

Fly High Halle Mae. You were so loved and you’ll be sorely missed.

Apr 02
1

On being post gastro

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We’ve had the gastro for a while now, and I was surprised at how some things have changed.  The biggest being Mikaere doesn’t have the NG tube anymore, which means there is nothing on his face. Spelling it out – when he’s in the buggy you can’t tell that he has a metabolic disorder. He looks neuro-typical.

This means that the attention he gets has dramatically increased when we’re out and about

The scared ‘there is something wrong with this baby’ looks and side comments and fear when people peer into the depths of the buggy has gone. Other parents give me knowing smiles (what is it they know? I feel like there’s a shared secret I don’t get) and people now want to ask about how old he is and how tall he is and tell me how precious he looks. That annoys me, because Mikaere hasn’t changed, just people’s perception of him. Initially I wanted to explain about his disorder, tell them in detail about NKH but I soon realised that one, they don’t want to hear it, and two it takes up waaay too much time and all I really want to do is finish shopping and get Mikaere home away from possible-germ-carrying strangers.

It’s not all bad though, Mikaere still goes for his nose when he’s upset, but we don’t stop his hands anymore. Which means he’s got full access to touching his face. We don’t have to pass tubes anymore and I’m delighted we’re not dealing with the screams from that. Not trying to get an aspirate has been liberating. We’ve started a pseudo-blended diet, which has been good for Mikaere, I think.

The wound is healing nicely, slowly but surely. I’m positive it would have healed even faster has Mikaere not pulled out his stitches yesterday. We’re a few weeks past the gastro now and the button is at the right spot for him to reach without having to support his elbow or move his shoulder in a big sweeping movement. It’s in the sweet spot of reaching. So reach he did and with one big yank had pulled the stitches off the top of the button and almost pulled the whole thing out of his stomach. I had a heart attack and my poor sweet boy screamed. Good thing we were already in hospital for another appointment. And rushed upstairs to the ward to find the on-call surgical reg, who pushed the button back in and restitched what he could.

So cheeky. Mikaere’s clearly been a bit more sore than usual and on top of that he’s not tolerating his feeds/meds as well as he usually would. Which means we’re in the world of all the vomiting. Like, projectile out the nose vomiting. All the time. Everywhere.

We’ve slowed down the rate at which we feed him, the volume and what we’re feeding him (no advice needed, is what I’m saying). Everything is gentle gentle. We vent frequently, the feed goes across three hours (previously took half an hour). He will eat a tiny amount orally, but no where near where he used to. So we spend a large portion of our days feeding.

I’m getting really good at getting baby food vomit stains out of things, too.

Hey ho. Give us a few weeks of healing time and I’m positive things will be better.

I can’t believe we’re on the other side. Mikaere has a gastrostomy. Hallelujah!

Mar 30
1

On the ward

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I’ve never been so grateful to be on the ward. Back to shared rooms and small cubby’s and nurses shared between three beds.

Mikaere tolerated his meds on a diarolyte solution. He tolerated his formula. He did NOT tolerate food. Womp. There was vomit. So much vomit. And with every vomit we tack a day on to how long we’re in here.

It’s not so bad though. We’ve got our own cubicle at the minute, having moved out of the shared room. We’ll revert back to formula at a rate he can manage (slow and steady). And our days are slow and easy as Mikaere recovers.

We take walks around the ward, and set up a rotation of toys from the play specialist. We read books and sing songs and take naps. (Best tip I ever got was asking for an adult sized bed instead of a crib. Mikaere doesn’t roll, let alone climb over everything so is in no danger of rolling off with the sides up. It means we’ve got more space to manoeuvre him, space for us to sit and a nice spot for a joint nap).

The other bonus is that we’re still doing the meds ourselves (it’s a bit of an ongoing thing, Kai’s meds are complex, and the nurses and the chart are always wrong, so we do it to make sure it’s the right med at the right dose at the right time).

We’ve also continued our at home nurse help, which has been amazing. Because the hospital nurses are there for emergencies, we haven’t had to stay the whole time – knowing that there is someone Kai knows and we trust has been amazing. It meant I was able to come home to sleep once or twice (a proper 6 hour sleep in a bed after a shower is pure bliss).

We’re in no hurry. We’d obviously like to be home, but this doesn’t feel like our other hospital visits. Mikaere is not sick. He’s not fighting for health. He’s not struggling.

There is the the occasional vomit while his stomach recovers, so when the surgeons suggest another day I’m not heartbroken. Kai is going to be okay, and once he goes a full day without vomiting we’ll be discharged.

Update: later that very day we went home. Five days end to end we were here, from fasting to discharge. I’d expected to be here at least a week or two, five days feels swift. Hallelujah we’re home!!