Tag

#teamMikaere

Oct 01
0

On the wine tasting

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Gosh, the wine tasting! We tried changing things up this year, but to be honest – this year’s wine tasting was a bit of a shambles. We were stretched in the weeks leading up to the wine tasting (having been away) and there was a bunch of things we didn’t do well (we forgot to ask for volunteers till the day before, we did it in the middle of the summer when most people were away, we gave everyone late notice etc etc) but despite the shambles, oh my days, what a great day.

This year instead of one giant tasting like a show, we had three small ‘stations’ where everyone stopped by as they went, with bubbles to start. It was a blind tasting, so each station had two wines, there was a Rosé station, a white station and a red station. Considering the heat of the day (thanks crazy heatwave) we did a chilled red (!) which was pretty fantastic. I obvs. loved the Rosé but I enjoyed the fizz and the chilled red too.

It was lovely to catch up with everyone as they came through – there was plenty of wine and we played a lot of ‘water vs wine’ (such a fun easy game). It was small, we intentionally kept the ticket sales small (and manageable!) but we had about 25 people come, we sold lots of wine and oh my days, there was lots of love.

On the day we raised £450 which is a phenomenal effort. Thanks to everyone who came and bought a ticket and drank our wine. Every single pound has such a profound affect on the research that can be done. All of those funds have been sent to Joseph’s Goal, who will send it along to Prof. Nick Greene for NKH Research. Honestly – thank you for the support for everyone who came with the crazy amount of love – thanks to you we’re making change. These funds – they give credence to what we’re doing, they give meaning to Mikaere’s life – he’s making a mark on the world with every single pound we raise in his name. I often mull over why we fundraise, and right now, that’s it. We want our son’s life to having meaning, to have made a difference. We want him to contribute to the world, and oh, how he is.

We’re lucky that we have this outlet in which to do that, so thank you for the love and support. You guys are the best x

Sep 26
0

On grief

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It’s taken me four months to post this. I don’t know how to talk about grief. I don’t know what to feel, or what’s appropriate. Is there an appropriate way to grieve? A beautiful baby boy has gained his angel wings. He didn’t have NKH, the underlying cause of his disability wasn’t diagnosed. But he was part of our special needs playgroup. He was in our Monday morning gang.

I feel so all over the place. In the beginning, I cried endlessly for this small sweet boy. But I felt out of sorts, grieving, because I also feel like I’m so far removed from their family, because it’s just a playgroup, but honestly I’m devastated. For him and his family. Is it inappropriate that I feel an inordinate amount of grief for him? Is it even inordinate?

I cry for us, too. Because I feel like, despite my best efforts, I’m now constantly looking out for signs that Mikaere is on the precipice of an acute deterioration. For the longest time, I felt that genuinely he wouldn’t pass, that all the doctors were wrong and he’d have years ahead of him. That the ‘terminal’ part of his disorder was just a label, but not really one that applied to Mikaere. But now the sweetest little boy who should be here and fine is not. And the word ‘terminal’ as it applies to Mikaere has taken on a new, scarily finite meaning.

I was unprepared for the grief I feel. The shock of it. It feels messy and all over the place and the big overarching and devastating truth is one day it will be us. It colours my grief, which perhaps is why even the merest thought causes a moment of tears.

I’m so overwhelmingly filled with compassion for this little family. But I don’t have words and I refuse to say the platitudes. I don’t want to add to their grief, so I grieve privately. And then I feel like my grief must be minuscule compared to theirs (which just seems unimaginable and huge and so unfair) and should I even be feeling this way considering how tenuous our link? A link which I’m absolutely gutted will be no more, our after group catch-ups will be done now.

Grief is messy and I feel like I’m continuously finding new depths in what I feel about death and terminal disorders. I’m all over the place. Everything feels huge and bitsy at the same time. Like I’m trying to fit the uncertainty ahead for us and the unfair and too early deaths and all of the it-wasn’t-meant-to-be-this-ways together but the puzzle pieces don’t fit, so it’s all jagged and confusing and what do I do with all these feelings I have?

I spend hours thinking about the nature of grief. Of disbelief and how when you think you’re okay it smacks you in the face. Of how our therapist talks about snakes and ladders and shock. How you can’t know, hour to hour day to day how you feel (will you go up a ladder? Down a snake?). How I read somewhere that your grief doesn’t diminish with time. It’s that your life grows as time passes and it becomes easier to manage. I wonder how we’re meant to grow as people when our live distils down to our special needs baby and his needs. Our world revolves around Kai? How do we outgrow that? How are people meant to grieve and grow?

I sometimes think about that Frank Turner Song, Long Live the Queen. The line goes “We live to dance another day, it’s just now we have to dance for one more of us.” and I think how I’d want to live extra for everything that Kai couldn’t. And then I think back to what our therapist said, about living in the moment, enjoying the moment. Acknowledging where we are but also not denying ourselves fun and happiness right now. Choose joy, she said. I think about how hard it is to enjoy the moment when your future is so uncertain.

A friend told me once that something more than momentary happiness is intertwined quite heavily with three things, are you safe? Are you connected? Are you heading towards a purpose?

It’s hard to apply that to the special needs life, because my family isn’t safe (with a terminal disorder, not really), we’re constantly trying to manage the giant span between those with neurotypical children (the life we expected to live) and the highly medicalised special needs life, and we’re heavily isolated in the world of medical everything, and my purpose for anything other than Mikaere switched off the moment he was born, and as a special needs Mum my purpose only lasts as long as Mikaere is with us.

So, enjoying the moment feels like we’re trying to cling to the good the best we can while we wrangle with the idea that the larger building blocks of more substantial, satisfying happiness is generally denied to us.

My thoughts are all over the place, I keep jumping from one metaphor to the next, as I try make sense of it all.

Really the special needs life is utter shit for all involved.  I feel like enjoying the moment is to accept the shit, to accept that we’re headed for heartache, and I can’t do that. We’re essentially struggling with a life of grief and uncertainty and hardship and I don’t know how to feel about that. I just don’t. Instead I’m desperately trying to make time for the small moments, the moments with Mikaere where he’s feeling joy. I feel like I’m trying desperately to enjoy every moment with him, but it’s hard to relax when I’m so worried.

I feel like I’ve been thrown into this whirlpool of grief and terminal disorders and it’s overwhelming. But when I distill it down, mostly it’s been a time where I think it’s beyond horrid this sweet little boy gained his wings. And I’m so sad for his family, so upset at the loss for everyone who knew him. I hope he’s at peace. I wish his family peace and relief in the face of profound grief.

Fly high Rauirí. You were well loved and you’ll be fiercely missed by so many. You had a huge impact on our world.

(Even saying that doesn’t feel enough to convey the emotions I have for this whole situation. There are no words to convey the complexity of this kind of grief).

—-

Fourth months on I still feel as strongly as I did when I wrote this. But the upside is that I still see his Mum and I still remember Rauirí on a regular basis. I think of him most days. Grief is a multi-faceted crazy thing, and we live within it. The special needs life is such a bizarre life to live. If you’d like to donate, Rauirí’s Dad was raising funds for Small Steps with an epic bike ride with his work here or the family asked for donations to Shooting Star Chase, Rauirí’s hospice.

 

Sep 24
1

On vision

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In the last few months Mikare’s vision has become more… pronounced? He’s able to see more, he’s LOOKING at more. Before he was quite… disengaged? Is that the word? It was as if he was using his ears to ‘see’ rather than eyes. It was hard to tell what he’d react to, because he doesn’t stare really. It’s hard to tell if he’s focusing or not. His head is constantly moving, so there’s no prolonged looking in one direction. But small things would give it away, like Mikaere wasn’t really able to see you unless you were right next to him.

We did lots to help his vision – namely large black and white cards were up everywhere – in his crib, by his changing matt, in the buggy. I’d put “CVI” into the search box on youtube on an iPad and put it in his crib (I liked this one best). We’d hang black and white toys from a microphone stand to dangle above his head. We move objects with lights or bright colours slowly into his field of vision and across to the other side in the hope he’ll track. We even got referred to the local Vision Support team, who started working with Mikaere every two weeks.

I can’t say for sure any of that helped – for a long time it felt like we were doing the same things over and over with little to no progress. The problem is that we didn’t know what Mikaere could and couldn’t see. We knew from the eye test that there is nothing wrong with his eyes. We knew Mikaere could see some things, but what? We don’t know. If we don’t have a baseline, how do we know it’s improving? Do we keep going? Do we stop? Does it make any difference at all?

And then we had a period with little to no seizures, no illness and something shifted slightly. It wasn’t a sudden change, it was gradual thing, like noticing Mikaere turn his head if someone moved down the other end of the room. He might point his head at an object, turn away and then batt at the exact right position with his hand.

Our therapists (who had the benefit of distance) started commenting how much aware he seemed. He began doing things like opening his mouth in anticipation of food, or turning his head when he didn’t want to eat what we were offering. Turning his head much more. He’d cry and stop when we approached him. Small things.

We’re still not clear what he can see, and Mikaere doesn’t stare, or track the same way we do. He won’t look and reach at an object at the same time, but there is some visual mapping happening.

We still don’t know what he can or can’t see, but there’s a definite improvement, and that’s something.

Sep 21
1

On saying goodbye to Alexander

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Alexander was the very first NKH child we ever met. We were in hospice on end of life care and they drove up, from over an hour away to meet us. He opened our eyes to what was possible. That we might survive that stint in hospice (we did) and that life with NKH was absolutely possible.

Since then we’ve made a point to spend as much time as we could with them. We drove the two hours for their Halloween party last year. When he was in hospital I drove down again. Earlier this year when they were in a London hospital, I armed myself with delicious takeout  and we sat around his hospital bed catching up. Earlier this year we did a meet up with Eloise, Neil and Doms as well as Kirsty, Jon and Alexander. What a fun day that was.

Alexander’s beautiful, with the longest eyelashes you ever did see and the most piercing blue eyes. He’s got such presence. His parents have been an amazing source of comfort for us. They’ve been our cheerleaders, they’ve been a wealth of information. And they’ve also been fun. Jon is into Formula One like Sam, and when Jon stayed at ours instead of the hospital they flew drone simulators together.

They love their son with such overwhelming fierceness it gave me hope for what life was going to be like with our son. That it was possible to live on fierce love, that it was possible to survive all the adversity on love alone.

Earlier this week Alexander died.

Devastation doesn’t have enough meaning to explain the hole he’s leaving in so many lives. The giant hole he’s leaving in ours. Alexander was a fighter and he fought such a phenomenal fight. He dictated how things went right to the very end, and was a phenomenal, phenomenal person.

He is so loved. So so so loved. So many of us are broken and the world seems like a darker place without him. Alexander will be fiercely missed.

Fly high Alexander. We love you.

Aug 10
1

On having the best of friends

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Good friends of ours (possibly some of my favourite people ever) live overseas. They’ve loved on us from a far and loved on Mikaere when they’re in London. A few weeks ago they hosted a murder mystery fundraiser for #teamMikaere. You guys – I’m jealous it wasn’t here because it looked absolutely AMAZING!

Phe and Dom hosted dinner for 10 of their (incredibly generous) friends. They did a short intro about Mikaere and why they were fundraising and holding a murder mystery event in lieu of running marathons or walking cross country like some of the other epic efforts (which made me laugh – I love they did an eating/drinking event. Phe and I once tried to run together and both of us I think decided walking was more our preferred pace).

Set in 1967 the Champagne Murders was accompanied with a very terrible fake Austin Powers DVD random clues and scripted characters. Apparently there was a lot of heated debate while they picked apart the clues and pointed fingers at each other as the potential murderer (which I also love – as a big Mafia/Secret Hilter fan I love a good Kangaroo Court!). With a lot of food and free-flowing booze their very generous friends raised a phenomenal 3,000QAR, which is roughly £633!

Isn’t that one of the most amazing things you’ve ever heard? I’m continuously overwhelmed with how our village has come together, and still does – months on, to fundraise for us and love on our family. So a big giant THANK YOU to Phe and Dom. We love you guys more than you know.

Aug 06
1

On drama with buttons

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Ahhhh. Fuck. I’ve talked before about how Mikaere’s button is in the perfect position for him to reach when his elbows are supported on the floor (so anytime he’s lying supine). He has pulled it out numerous times, and even worse – the balloon has burst and it’s fallen out.  Womp.

As a bit of a back history: this is what a button looks like. Essentially, there’s a feeding port with a balloon that holds it within Mikaere’s stomach. You deflate the balloon when you put it in, and once in you inflate the balloon to hold it in place. These buttons cost about £400 a pop and should last 5-6 months.

 

In the last 3 weeks Mikaere has had three (to the tune of £1200. W.T.F). I literally don’t understand why they’re not lasting.  When I was trying to explain to our nurse what was going on, it was very confusing. In the end I had to write up a breakdown just to get my head around it:

– 14th – Button got pulled out in the carseat fully inflated. (Button A). Went into A&E for a replacement, which we put in (Button B)
– 21st – Mikaere pulled out his button fully inflated (Button B). I put Button B back in.
– 22nd – Picked up a replacement button (Button C) for just in case
– 1st – Mikaere pulled out his button (Button B) fully inflated. I put Button C in.
– 3rd – Button C had a leak and fell out. I sterilised Button B and put it in.
– 3rd – Button B also had a leak and fell out. I sterilised Button A and put it in, and taped it so it couldn’t come out.

Just in case it was hard to follow:

Button A – Currently in. Inserted twice.
Button B – leaked. Inserted 3 times.
Button C – leaked. Inserted once.

I’m getting really good at putting the button back in, but YOU GUYS – it’s always a moment of panic. It’s so terrible. First it’s because someone notices that Kai’s onsie is wet, and there’s a wet spot on his onsie right over his belly button (which is a weird place for a onsie to be wet). Whoever is nearest will jank up the onsie to check, and sure enough, the button is out and vomit is leaking out of his stoma.

It’s a bit of a race to get something – anything – into the stoma to prevent it from closing. We currently use leftover NG tubes. We have so many and they’re thin and easy to get in and tape. The concern is that if the stoma closes then 1) we’re back to the NG for meds and feeds (boo!) and 2) he’d need surgery again to put another button in. Considering the huge risk of general anaesthetic and the emotional upheaval of the first round, I’m not keen.

Once we have an ng in the stoma we can relax for a moment and figure out next steps. Sometimes that’s going into A&E if we don’t have a replacement button on hand. Sometimes it’s sterilising the existing button, letting it cool and putting that one back in. If we do have an unopened, sterile replacement we’ll usually use that.

But oh, putting it back in. It’s not as bad as the NG, but it’s not fun. Because typically Mikaere pulls out the button fully inflated, his stoma is sore and a bit tender. When I attempt to push a new one back in (deflated, obvs), Mikaere screams and clenches his abdominal muscles, essentially stopping me from pushing it through. I have to wait until he takes a breath in – when he takes a breath in his lungs expand and his abdominal muscles relax for a millisecond. Listening to your baby scream because of something you’re doing is horrid. It’s heartbreaking and I hate it. But it’s necessary, so necessary, so on we go. Eventually it’ll be in and we aspirate stomach contents up to make sure it’s in the right place (testing with a PH strip).

Having to do this 5 times in the past three weeks has definitely upped the daily stress factor of our lives. The most current button is physically taped to his body, so he’d need to get through several layers of hyperfix to the button out. We don’t have a spare at the minute, so I’m really really hoping he doesn’t pull it out. I don’t fancy a trip to A&E for another one.

We’ll see. Hopefully things will get better soon. Fingers crossed this one will stay in longer than a few days!

Aug 03
0

On more vomits and our magic osteos

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After my victorious post about Mikaere putting on weight… I’ve had to retract all that joy and positive forward momentum. As of this morning, Mikaere is 10.37kg. Which is to say, he’s the same weight he was three months ago. Except that now he’s longer, and he’s lost all of his beautiful baby chubb. You wouldn’t know it to look at him – he looks so well. Like a happy little boy. Except that most people don’t see him without his clothes on. You can’t see his ribcage or the way his little vertebrae stick out.  Now, just to clarify, he is underweight, but he’s not in emergency, dire situations. We’re sitting at about the 20th percentile.

Even more relevant, is that we know *why* he’s not putting on weight, and it’s because he can’t keep food down. Oh the vomiting. The vooooommmiting. It’s everywhere, all the time.

Here’s the thing. Mikaere has a not-cold. He’s not really ill, he doesn’t have a chest cold or a temperature or a touch. What he has are secretions. From teething, maybe? From life? And every time he can’t handle a secretion he vomits. His body and his stomach is so sensitive. I spent a long time talking to our osteo about the structure of the stomach.

I’ve said it before and I’ll say it again – here is research that says a lesser curvature gastrostomy reduces the incidence of postoperative gastroesophageal 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.

I’m positive that because Mikaere’s stomach has been hitched high to his abdominal wall, this has pulled his stomach up at an unnatural angle, changing the way food sits in his belly and puts pressure on the lower esophageal sphincter, which is that the nice bit at the bottom of your esophagus that keeps your food in. The outcome of this is that he’s a trigger-happy projectile vomiter now. All the time, everywhere. In the buggy, the car seat, the crib. Sitting up, or down or side lying. Moving, not moving. On the blended diet, formula or dioralyte.

I thought we were getting somewhere with reducing the frequency of his feeds and the rate at which we feed him, but now we’re going even slower, because fuck. The vomiting. I thought we were on the up but I was wrong. Womp.

Anyway, like I said, we see an Osteopath every week thanks to the amazing charity Osteopathic Centre For Children. Side note: Osteo is essentially concerned with the mechanical arrangements/movements in the body, particularly in terms of alignment. They do a lot of soft tissues massage and joint manipulation, though to be honest, sometimes it literally just looks like they lay their hands on Mikaere and close their eyes. We see the same therapist every week and every visit in the few weeks has included a projectile vomit. It’s so so horrid.

But this week, this week Stuart was in the clinic. He’s the director of the Foundation for Paediatric Osteopathy and is essentially one of UKs leading osteopaths. Stuart is essentially magic. He came to see Mikaere and we talked about the vomiting. Leading an additional two osteos, they did their hand laying/eyes closed trick and talked about medical terms (the sacrum, the vagus nerve etc. They later translated to say Mikaere’s insides were a bit twisted around the hitch, which caused his body to work a bit like a spring. They were trying to untwist all the things).

I’m hopeful, as always. I wasn’t convinced they were going to stop the vomiting, but Mikaere enjoys osteo, he always relaxes and they’re not doing any harm.

Oh, silly disbeliever me. After his appointment, we went FOUR DAYS without a vomit.  Considering we had normalised at to 2-3 vomits a day, four days of not changing sheets or cleaning carpets or multiple baths – what a relief. You can be sure I showed up the next week with a ‘more please’.

After every visit, we’re seeing longer and longer vomit free times. I don’t fully understand it, but I’m grateful. Mikaere is not yet back up to where he was, weight wise, but if he can keep food down it’ll start, right?

Magic Osteo’s. Definitely recommend.

Aug 01
1

On small wins

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Mikaere’s on two antiepileptics and a supplement to help with his seizures: Zonisamide, Phenobarbital and Omega 3 (with all of it’s fantastic DHA seizure support capabilities). Now, it turns out that phenobarbital is one of the most frequent drugs used to treat neonatal seizures, and considering Mikaere is palliative it seemed like a good choice when nothing else was working.
 
But here’s the thing, long-term use of Phenobarbital has enough studies to suggest it has a terrible effect on a developing nervous system, it has a detrimental developmental effect too (with developmental quotient declines (in both cognitive and motor skill) which are thought to reflect a slowed neurological growth rate) and causes an increase in the probability of a cerebral palsy outcome.
 
Whats more, side effects include a decreased level on consciousness (it’s essentially a sedative) and it’s addictive, causing withdrawal symptoms when weaning. Aaaaand it would make Mikaere vomit. If it wasn’t diluted and given really really slowly he would vomit immediately.
 
Also, it turns out phenobarbital is used in the lethal injection of death row inmates and also prescribed to terminally ill patients to allow them to end their life through physician-assisted suicide. Always nice to know we’ve been giving this drug to our baby twice a day for last 14 months.
 
A good 9 months ago now Mikaere’s seizures started becoming a bit more, dare I say it, under control? Mikaere started having a handful of seizure free days. At first, it was sporadic, one day here, one day there. It was amazing, so amazing to see. The fewer seizures he had, the more gains he was making. Eventually, he worked himself up to two or three day stretches. I was ecstatic, to say the least.
 
It was at this point we discussed weaning with our palliative care team. There wasn’t much harm, they said. As long as we went slowly. If there was an increase in seizures we could put the dose up, no problem. So we started a very very slow wean. Every three or four weeks, we’d reduce the dose by 2mg (which is about 0.2ml – a tiny tiny amount). We’d wait, and watch. We already track Mikaere’s seizures and I’d hold my breath waiting to see if there would be more seizures. Sometimes there would be if he had a cold or was having a tough time. Sometimes you wouldn’t have noticed the dose had dropped.
 
It felt tricky, weaning. We eventually got to a sub-therapeutic dose. We high fived that day. And today? Today, after months and months and months of tiny, incremental weans – we’ve managed to get Mikaere off phenobarbital.
 
It’s been amazing. He’s been more awake and aware, making more developmental gains. I have seen an increase in seizures if the Omega 3 is a bit old (and has oxidised) or his Zonisamide dose is later than it should be, but generally, as long as we’re on the ball he’s a happy little guy who is still having some seizure days.
 
I’m stoked to have Mikaere off one of the medications. Phenobarbital is still on our list of emergency meds, but I’m delighted we’re no longer giving it on a twice-daily basis.
 
Celebrating small wins, woohoo!
Jul 13
1

On The NKH Car Sticker

By | #teammikaere | One Comment

Did you know the ‘Baby on Board’ sign isn’t so that other drivers will drive safer around your car? It’s so that if you’re in a car accident, the emergency team know there is a baby in the car and to adjust their priorities appropriately.

I’ve been thinking about that for a while, not sure how to help in that situation. We carry emergency medication and emergency files with us everywhere we go. But if we were in a car accident and I was unable to advocate for Mikaere… what would we do then? Mikaere is on six hourly medications – or what if he was in so much pain he started seizing? There are a bunch of medications he’s not able to have – most which are first line seizure medications.

What would happen if I weren’t able to advocate for him?  It scares me.

So I’ve been looking at medical alert seatbelt things.

Then another NHK Mum posted a car window sticker (thanks Amber!). It was pretty brilliant, so I altered it slightly and got more printed. Now on our car window there are stickers to let emergency teams know specifically about Mikaere. We haven’t got the seatbelt alert yet, but at least there’s a sign in the window to indicate something’s wrong. I’m positive that if worst came to worst, he’d be taken care of the best he could.

PS – NKH family I have extras. If you want some, £1 each + p&p. I’ll send them to you! All proceeds go to Joseph’s Goal + NKH Research.

Jul 09
1

On finally putting on weight!

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Woohooo!!!!! Thank fuck – Mikaere is gaining weight again. It was scary to watch his weight fall off, the beautiful chub of his cheeks disappear, his little arms and legs get more defined. That with every vomit I knew he was losing calories, and I watched at our weekly weigh in as the numbers went down and down and down. He got to under the 20% percentile – which isn’t a huge deal. He looked healthy (everyone kept saying he he was growing up, but it was because he lost all his baby weight!) and was still alert and aware, still active. There was a reason he was vomiting (#borderlineGastroRegret) and so we were reassured by our team that it was okay.

But as a mama, it was NOT okay. There was always the fear from our dietician that if he couldn’t get his weight up a ‘nutritionally complete’ formula was in Mikaere’s future, and as someone who hates the idea of processed anything (particularly when some of the ingredients are high in glycine aaand its stored in plastic bottles – so terrible!) I went on the offensive.

The first trick was getting the vomits down – we reduced his feeds from 4 meals with three snacks to four meals period, increasing the calories and the feed time, reducing the volume. We got to three hours on/three hours off. We hadn’t been on this schedule since we were on end of life care in hospice.

We moved away from regular formula to the blended diet where I painstakingly worked out the calories of each blend, going for high calorie low volume (he eats a lot of avocado, peanut butter, coconut oil and coconut yoghurt). It’s hard work and I have spreadsheets coming out my ears but you know what? It WORKED!

Because my baby is putting on weight. There is something beautiful about all that hard work and extra effort paying off in tangible numbers. Something beautiful that is mostly epic amounts of relief.

It’s even more likely that his was putting on weight had little to do with me and more because Mikaere very gradually stopped vomiting as frequently. For every feed he kept down he gave himself a better chance of putting on weight. That’s not to say the vomits have stopped, because they haven’t. We’re still at at least a vomit a day. Sometimes too. But against the 4-5 vomits we were having? I’ll take that improvement. In fact, even yesterday he had his first vomit free day in forever, so that’s positive!

I feel like I’m on high. When he reaches the 50th percentile, I’ll reduce the calories to a more appropriate level and start adding in more nutrition. We’re not there yet but that his weight is going up? I’m pleased. So so pleased.