[PR] Gain and Get More Likes and Followers on Instagram.



New post on the blog! I was left standing the waiting room with a handful of my babies clothes and his dummy, my heart in my throat. Walking away was rubbish, watching four strangers crowd around my baby, looking so little on the giant adult sized bed, blue gloved hands busy attaching probes and doing medical things as Mikaere lay there unconscious as we were ushered out the door. Leaving was hard. Trusting them to do their jobs and their jobs well when my little guy was asleep on the table... difficult.

I was unprepared for the leaving part. We'd been waiting so long for this all to finally go ahead, that I was more focused on tee-ing everything up, half believing it would, again, be postponed that when it was go time, I was unprepared. But there you have it, after months and months of waiting my son was right this minute being put under and I was being gently pulled out of the cubicle.

I wanted to cry when we left him and I almost caused a motherly fuss - my fear was overwhelming. (I don't know exactly what I'd be fussing over, the right to stay? It doesn't make any sense, because I know we'd never be able to stay. Emotions - not always logical). And as I sit in the waiting room for the first of this long drawn out waiting process of my own, I feel like it's best to just get on with it. Waiting is rubbish and my fear of it all going twisty and wrong is high, but there is no point making a fuss. I don't want to go on and on, when I have the power to emotionally move myself forward. So instead I sit quietly and write you guys a blog post.

Mikaere's under the general anaesthetic and is having an MRI. Up next, gastrostomy. I can’t sit still and I keep repeating that Mikaere will be fine. He will be. And I wait for the MRI doors to open.

#medicallyfragile #nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #scienceWillWin #teamMikaere #seizures #epilepsybaby #nicugraduate #ngtubebaby #londonmama #ukparentbloggers #speacialneedsparenting #teammikaere #MRI #gastrostomy #gastro #surgery

New Post on the blog! We got the suit! It’s only been a week so far and we’re easing into it but oh my days, what a difference. I know that it makes sense, with a supportive suit he should be able to support himself more, and he DOES. Sitting is better, it’s like his whole trunk is supported so he doesn’t have to work as hard, which means he can work on holding his head or swinging his arm or whatever it is he’s trying to do.

The only downside is that it is quite warm - making Kai warmer than usual. Difficult, with the helmet, which also holds all the heat in. We’re taking temperatures like nobodies business to make sure he’s acclimatising okay (and he is, what a champ) but it’s just something we’re aware of when we dress him in the morning. Thinking about layers and all the things. Checking his body for red marks to make sure the compression suit isn’t compressing him in a way that causes pain, or leaves red marks.

It’s weird to think about all these extra things, and what a difference it makes. It also makes me feel like we’re worlds away from the neurotypical path. Hey ho, onwards we go. I’m glad we’ve found something that helps Mikaere, that makes his life a little bit easier.

Hurrah for Superhero suits, hey?

#medicallyfragile #nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #scienceWillWin #teamMikaere #seizures #epilepsybaby #nicugraduate #ngtubebaby #londonmama #ukparentbloggers #speacialneedsparenting #dmoSuit #lycraSuit #compressionSuit

New Post on the blog! I want to share a thing. Before I do, before I share - I want you to understand that these two photos were taken in The Moment. You know what I’m talking about, right? How in The Moment everything is good and perfect and everything looks positive and rosy. I want to share with you all the positive and rosy things, because I always want to delight in these beautiful milestones. But I want you to understand that either side of The Moment did not look like this, and that The Moment? The Moment was fleeting.

So, for a few seconds, during physio, Mikaere held his head up.

For a few seconds, he held his head up all by himself. He was able to keep his head in midline AND look to one side.

There was a moment, a beautiful beautiful moment where Mikaere smashed out another milestone, because for those few seconds, my son could hold up his own head.

This one is bittersweet, because a neuro-typical baby learns to hold their head at around the 2-3 month mark… Kai has a full year plus some on that. But you know what? Dr Doom and Gloom told us we’d never get here. That we’d never see this - my sweet boy holding up his own head.

I live for these days, the ones that contain The Moment. Today was a good day.

Side note: Not shown: the moment Kai pulled out his ng tube just before physio started. Also not shown: the screaming fit that happened at the end of physio that caused a giant vomit. Our days are always up and down.

#medicallyfragile #nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #scienceWillWin #teamMikaere #seizures #epilepsybaby #nicugraduate #ngtubebaby #londonmama #ukparentbloggers #speacialneedsparenting #teammikaere

Who can tell where he started? LOL. I have a strong suspicion that he'll have some level of mobility as he gets older even if it's floor mobility only ❤️❤️ #nonketotichyperglycinemia #epilepsy #tubie #specialneeds

New Post! On not having a paediatrician because the NHS is underfunded. Everyone knows Mikaere is medically fragile. I’ve talked before about how large our medical team is and how we have an appointment of some kind every day of the week. Our life is a series of appointments and therapy and special needs groups.
Of all these services, our paediatrician is the most utalised. He’s the person who knows Kai the best, who is our first port of call. He orders our meds and the bloods and all the checks. He’s our go-to person when anything is wrong, if the meds are out or there are more seizures or we need something. He’s the person we work with, the person we make a plan with and who helps us work the system. We’re lucky that our paediatrician is covered on the NHS, as are most of the services Mikaere uses.
Here’s the thing though. The NHS is chronically underfunded. It may not look like it from the outside, but it is.

Mikaere’s paediatrician was a locum, which means he was temporary while they found a permanent person to take that role. Which is fine, we knew this and accepted it. However, a month or two before end of the financial year the paediatric locums were let go as a cost saving measure. And – get this – there was a gap in care. There was a gap where there was NO ONE to pick up the case load, where Mikaere DID NOT have a paediatrician – our first port of call, someone to prescribe his many meds or chase anything (like that gastro we’re waiting for). We didn’t know where to go for all the things Mikaere needed.

My small, medically fragile and vulnerable son did not have a paediatrician because the hospital trust was told it needed to save some money.

NHS underfunding is happening and it terrifies me.
More on the blog.
#medicallyfragile #nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #moreMoneyMoreResearch #scienceWillWin #teamMikaere #seizures #epilepsybaby #nicugraduate #ngtubebaby #londonmama #ukparentbloggers #speacialneedsparenting #teammikaere

Story time! Zander decided he should tell me a bedtime story tonight. I wish he was this happy always ❤️ #nkh #glycineencephalopathy #nonketotichyperglycinemia #epilepsy #tubie #chatterbox #zander #zandersstorynkh #love #sweetboy #storyteller #batmanpjs

We have amazing scented novelty oversized bath bombs in stock including our “bees for Madden” bath bomb. 20 % of sales will be donated to SickKids Hospital, Toronto in support of a family member with a life limiting rare disorder called #nonketotichyperglycinemia
You can get one and bathe for a cause! #bee #bees #nkhbee #support #donate #sickkidshospital #Maddensjourneywithnkh #tealandhoney

Zander discovered he has hair today. He has forsaken all his sensory toys for his hair. 😂 #nonketotichyperglycinemia #epilepsy #tubie

Nothing better than snuggle time with my little love. ❤️ #nkh #nonketotichyperglycinemia #stormtrooperpjs #epilepsy #tubie #sundaysareforsnuggles

New Blog Post! On the Charity Quiz⠀

I feel like we've got a few charity fundraisers under our belts now, but the quiz was one of my favourites - a proper good fundraising event. People came, we had a great time, we made lots of money for NKH Research.⠀

It was a fantastic afternoon. We had two fab quiz masters (thanks Tony and Tess!) - who provided several rounds of hilarity. Some questions required some thinking but there was enough knowledge in the room that the questions could be answered (because there's nothing worst than a quiz where you can't answer any questions). There was a round about music, and pictures with landmarks and general knowledge. Lots of delicious pop culture questions (I'm no good at knowing the answers but I still enjoyed those rounds the best).⠀

We had a great turn out, maybe 40-50 people? I love fundraisers, if only because our nearest and dearest make the effort to come and support all the things. It also meant that since the Quiz Mastering was taken care of by Tony + Tess, the bar by Sam + our friend Gareth managed the bar, once I'd got the food sorted (which was nothing fancy - mini cheese boards and pizza pinwheels, one for each table, assembled not even by me but by helpers (thanks Hari and Becky!!) I got to sit with Mikaere and chat. Full, proper conversations, with adults, actual friends, with nowhere else to be. (Isolation: it’s a thing). I drank my full of social goodness, it was amazing. So many wonderful people came - we're blessed. Seriously. ⠀

Thank you to everyone who came. You guys are the best. We managed to raise £1450 on the night, which will be matched (!!!) to a total of £2900. Not bad for an afternoon, hey? What an amazing event. Stay tuned for more fundraisers throughout the year. We're thinking the next one should be a wine tasting - who's in?⠀

#charityEvent #moreMoneyMoreResearch #scienceWillWin #medicallyfragile #nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #teamMikaere #seizures #epilepsybaby #nicugraduate #ngtubebaby #londonmama #ukparentbloggers #speacialneedsparenting

New post on the blog! On NKH Severities⠀

There was a giant kerfulfle in our NKH facebook group the other day. Feelings were hurt, dramatic proclamations were made, some people left the group. I didn’t dive in, knowing full well that there was nothing I could say that would ease all the grief or anger. We’re too remote, separated by a keyboard and screen and our feelings about NKH are big and personal.⠀

At the heart of it, it was about grace with the different severities. NKH has a sliding scale of severity which is loosely split into groups with the unfortunate names ‘mild’ and ‘severe’.⠀

The “mild” kids, they walk and eat and can communicate. The severe kids, they don’t. That’s what the grouping, from the outside, looks like. The different kinds of lives they lead. Both sides are still worlds away from a nuero-typical child, and we still are bound by the complexities that every NKH child shares, but there you have it.⠀

Mild. Severe.⠀

But what you can’t know is that while the severe kids clearly have a tough time of it, the mild kids are having a different, but equally tough time of it. Of behavioural problems and rage and self harming and aggression. “Mild” is not really mild. It’s horrific.⠀

That was a tough thing for me to learn – because when Mikaere was born I heard the severe diagnosis, and I saw photos of the mild NKH kids and I had a surge of hope. That Mikaere might be able to live, really live, and enjoy life. To be able to eat ice cream and run through grass and swim in the summer and sing along to bad pop songs. To have choice and communicate.⠀

I also saw that it was unlikely for Mikaere. Womp. To find out why - and where we land now, there's more on the blog. #linkInProfile

Also, the bulk of it is that severity aside, we have hope. If you’re looking for a way to help support the research, you can donate or purchase an Eva book. Every little bit helps. #linksInProfile

#medicallyfragile #nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #moreMoneyMoreResearch #scienceWillWin #teamMikaere #seizures #epilepsybaby #nicugraduate #ngtubebaby #londonmama #speacial

New Blog Post - On The Helmet⠀

Last year, when Mikaere was in his end-of-life seizure coma and it was all doom and gloom, he spent a lot of time on his back. As in, 24/7 on his back. Because he was terminal, no one saw the need to reposition his head. This meant Mikaere developed an epic flat spot. Like the flat spots of all flat spots.⠀

The NHS told us it was cosmetic, nothing to worry about it. Except that because his flat spot was so epic there was a RIDGE. And Mikaere didn’t have the tone to push his head over that ridge, so he never looked left. Ever. Which meant all his muscles on one side developed, but not the other.⠀

Cosmetic my behind. This is one of those lessons that hit me in the face: as much as you want to trust your doctors and therapists, always make the point to ask if an answer is NHS policy or evidence based. Because there is PLENTY of evidence that an epic flat spot like this is not just cosmetic (I’m fuming, can you tell?)⠀

But hey ho. Breeeeeeath out. Be calm. Wooosaaaaaaaa.⠀

We went and saw a private craniologist who scanned Mikaere’s head and confirmed the presence a flat spot. A severe severe flat spot. You can tell just by looking, so this was no surprise.⠀

So we got Mikaere measured up and now he has a fancy helmet. We were very very lucky to get it funded by The Boparan Charity (so very generous!!!) which we’re grateful for, because the cost of a helmet is almost two months rent.⠀

He tolerates it quite well, which is handy because he wears it for approximately 23 hours a day. It’s not so bad, it’s slotted into the routine no problem. It’s been a wee while now and we’re already seeing gains.⠀

Even better is that since we’ve started the helmet treatment Mikaere has started looking left as his ridge gets less severe. How good is that?!⠀

So yes. I know so many people are on the fence with plagiocephaly helmets, but it’s been good for us.⠀

#medicallyfragile #nkhawareness #nkhcansuckit #nkhfighter #specialNeedsParents #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #teamMikaere #seizures #epilepsybaby #nicugraduate #ngtubebaby #londonmama #ukparentbloggers #speacialneedsparenting #team

New post on the blog! On The Stander.⠀

It turns out your hip sockets aren’t fully formed at birth. They’re flat and somewhere between 8 and 10 months, when babies first start standing, they start weight bearing on their beautifully chubby little legs. The more weight they bear through their legs, slowly but surely their hips begin to form sockets.⠀

That’s all well and good, except that Mikaere can’t hold up his own head, let alone stand and bear weight.⠀

So finally, after months of waiting, we got a stander. A beautifully green, giant piece of plastic special needs equipment (if I was upset about the chair, it’s got nothing on the stander. At least the chair is recognisable as a chair. The stander is more like a kid friendly Hannibal Lecter restraint. But without the straight jacket. My lounge is being overtaken with equipment with neon ‘special needs household’ signs all over it. This is our life now, my emotions and grief are scrambling to get on board, but hey ho. Moving on).⠀

So the stander was fitted and now, for a minutes a day – Mikaere stands.⠀

My kid? He’s tall. Super super TALL. I didn’t know that. I knew he was long, but I’ve never seen him upright. And while he’s lying down, sure, long. But he’s standing now. And he stands TALL. It’s an absolute delight to see him upright, he looks older somehow.⠀

It’s early days yet, but we’re trying. If he’s in the mood he’ll tolerate it well. If he’s not in the mood he really really won’t (I don’t blame him, being strapped into a thing and not being able to move anything but your arms must be tough).⠀

Here’s the thing though, if Mikaere doesn’t spend time in the stander, he’ll never form hip sockets. If he doesn’t form hip sockets he’ll be at risk of hip dysplasia (read: frequent dislocation) and osteoarthritis (read: pain and stiffness).⠀

So, standing. It’s a preventative thing we’re doing.⠀

At this point it’s only minutes a day, but eventually it’ll grow up to an hour or so, we’ll make it happen.⠀

The things we do, hey?⠀

#medicallyfragile #nkhawareness #nkhcansuckit #nonketoticHyperglycinemia #glycineencephalopathy #raredisease #specialneedsbaby #nicugraduate #ngtubebaby #londonmama #teammi

Sunday was such a special day. Zander met a wonderful new friend named Lucy who also has NKH!

Lucy had a great chair called a special tomato seat that allows her to more easily go places with her Mom and Dad while staying comfortable and in better positioning. I'm hoping we can obtain one for Zander soon too.
They had such wonderful advice. It was such a treasure to meet another family who are kindred spirits. I can't wait to see them again 🐝 #NKH #nonketotichyperglycinemia #glycineencephalopathy #littlebees #specialneedsparenting #specialtomatochair #lagunabeach #epilepsy #tubie #tubies #epilepsy

Since it's the end of feeding tube awareness week, I decided to post an invitation to ask me any questions you have or things you are curious about regarding g-tubes. Ask away! #feedingtube #Gtube #tubie #nonketotichyperglycinemia #epilepsy #zander

Most Popular Instagram Hashtags