Warrior Princess Luna

Dear Luna,

I’m angry. Enough is enough & I’m ready to take on the health care system as I’m sick of watching you struggle.

We are currently admitted to hospital due to you vomiting blood for 24 hours AGAIN. This happened 7 months ago, we did all the testing & it was put down to tube irritation.

Fast forward today, we are going through this exact same thing.

You have had multiple vomits between then & now which has some blood to it but things are getting worse again.

We arrived at hospital, your sugars were low, your ketones were high & so were your haemoglobin levels.

And yet I’ve here begging for the gastronomy to be placed but you have been pushed back on the list & aren’t seen as urgent.

Make it make sense!

It’s not fair sitting here feeling helpless waiting for the team to decide when is the right time to do this procedure when you are struggling.

Our health care system is broken in so many ways.

We can’t even go private health to get this done as all your specialists are at QCH & you need an ICU room after due to your heart & lung issues.

And yet you still aren’t urgent.

I’m angry. I’m frustrated. I’m over it.

My patience is wearing thin. And I’m ready to make some noise. 😡

I’ll never stop fighting for you baby girl, you deserve so much better than this!

Love always,
Mum
💜

Dear Luna,

Yesterday we got dressed up & went to an event held by one of the dunga derby teams.

The Dunga Derby by Rally for a Cause is the organisation who sponsored us while you spent your long stay in Brisbane when you were first born & had to fight for your life, words can’t explain how truely grateful I am for all that they did for us.

It’s been 12 months since we were recipient’s but we were kindly invited to attend this event & I got to tell the whole crowd your story & why their funding is so important in our community.

It’s not often I cry when telling your story anymore as I thought I was almost immune to it, but speaking those words out loud to 200 people hit my heart.

It was another reality of all that we went through. Sometimes I forget about it, it’s our normal day to day life & it’s just apart of who we are. But when I see people’s faces breaking when I spoke the words it broke my heart too.

One thing I’ve learnt in this journey is that the heart ache doesn’t ever go away, it simply gets easier to deal with. It gets less heavy.

I consider ourselves the lucky ones, we get to sit here & tell your story with you still here in our world while a lot of families don’t. And that my girl is such a beautiful thing.

Yesterday more people in the world heard your story, heard how incredible you truely are.

Yesterday I helped people realise just how important organisations like this really are.

Walking back to the table I sat down, grabbed your hand & smiled, knowing I did my part for another family who needs the support we once did.

You have made me so strong my girl & I will move mountains for you.

I’m so proud to be your mum Luna

Love always,
Mum
💜

Oxygen

I’ve been in plenty of controlling & suffocating situations in my life.

Trapped in a cage with judgement from other people or power plays from boyfriends.

But I’ve never had something control my life so much to the point of life or death.

I’ve always been so free spirited, Impulsive, Wild, Spontaneous. Yet I find myself right now so confined, cornered, trapped & imprisoned.

Bound to the walls of my home for the fear our supply may run out.

Calling a company to have them check records to see if we have enough supply for the month to receive more.

For the fear of my daughter gasping for air is far to much to bare.

Oxygen, we breathe it, we can’t see it but we know it’s there, filling our lungs up so we can breathe, so we can live, so we can survive.

What if it wasn’t there?
None of us would be here.

And yet if you require more then the average human you are limited to a certain amount of a medical supply & you must pay for it if you go over your “free” threshold.

Doesn’t really seem fair does it, when most people get to live & breathe air for free every day.

My daughter didn’t ask for the need to require medical grade oxygen, nor did she ask for her rare lung disease.

And yet I feel completely & utterly controlled by this tank.

Something that doesn’t yell, scream, judge or even criticise.

Something that makes us have so much freedom but also keeps us on such a tight rope.

Oxygen. Life in a tank. Prison.

By La Toya Redman

10 ways to help a special needs family…

1. Please acknowledge our child. Say hello. Wave. Give a high five. See them. Don’t talk about them in front of them or act like they aren’t listening or in the room.

2. Ask us questions about our child..and not just about their challenges and disability. They are a person too.. with interests, likes and dislikes, just like other kids. Accept all forms of communication. We would be happy to answer them if they can’t.

3. Try to understand and learn about families like ours and our child. Knowledge is power for anyone. Teach your children about differences, disabilities and how to be kind and inclusive by modeling it.

4. Accept our child for who they are. Don’t expect them to mask behaviors, tell them not to stim or to be different. We love our child for who they are. We want you to simply do the same.

5. A break. Respite. Someone who can help with a household task or outdoor work. A person who could pick up something or run an errand. Someone to watch our child so we can manage self care, health and dental care. Be able to take a sibling out. Have a date night. It would be really nice to have a trusted individual as a back up.. We rarely have one and quality care for our child is difficult for us to find.

6. Include us. Don’t be afraid to ask us to join. Ask the entire family. Ask just the siblings. Ask just the parents. Don’t assume we can’t or won’t. Ask. Exclusion and isolation hurts everyone in our family. We would rather you tell us your concerns than everyone be excluded.

7. Listen. We don’t necessarily need you to say anything or offer advice. Most days we just want someone we can talk to and feel like we are being heard. Validating our feelings and just simply saying “I’m here for you” is one of the greatest gifts you can give us.

8. Adapt and accommodate our child’s needs. If we say it’s easier at our house, then please join us where our child is comfortable and familiar. If we come to you, we may have to bring things, come separately, help our child in a hard moment or need to leave early, please understand sometimes coming our way is the difference between going and not being able to come.

9. Don’t judge our child or our parenting. If you don’t live this life you’ll never fully understand and that’s ok. Please know there are multiple perspectives and ways to do something. Many of us have to think outside of the box because we are raising a child in a world that wasn’t made for them. We are in a constant state of balancing our child’s well being and happiness and the world’s ideas of what we all should or shouldn’t be doing.

10. When you make big decisions, think about us. Even if special needs and disabilities haven’t touched your lives, assume they might one day. Whether it’s for schools, medical care, insurance, government assistance, or basic human decency and rights, ask yourself how you would want you or your loved ones to be treated because those choices could affect your future one day.

What would you add?

Dear Luna,

How is it June already? Where has the year gone.

Reflecting on last year this year has been a lot calmer in our home, with more good days then bad which I’m so grateful for.

Your little personality has been blossoming & you are exploring more & more by tumbling from one room to another. You enjoy laying on the lino & stairing up at the art work on the roof of our hallway.

You have been smashing your therapy’s & building so much more tone. Your sitting is getting much better & your now managing seconds sitting up unassisted. At this rate you will be sitting all by yourself by your second birthday 🥺🥺

Today during physio we did some standing, the support you require for this is getting less & you are bouncing & locking your legs straight for longer. When we first started this you would get very upset as it would cause a lot of pain using muscles you did not have any strength in but now you enjoy these exercises.

We got some disheartening news Friday, daddy took you to a hearing lab appointment while I worked & the tests have come back that your hearing has not improved since the grommets. I had such high hopes as you have been responding to sound & expressing yourself more with baby cues but non the less your hearing loss is still very much there.

We still have no news on when your Mickey button will be placed, which is honestly so frustrating as we have now been advocating & pushing for this to happen for 12 months now. You have now started vomiting quite frequently due to tube irritation & having extra mucus stuck to your tube.

The suction pump truely is our best friend this time of year. And as you grow stronger & more self aware this is a challenging process. I hope once you have the gastrostomy procedure you will require a lot less suctioning.

You are teething, still only 8 teeth currently but there is some bumpy gums & more on the way.

You are expressing yourself more, vocalising when you are not happy & even now informing me once you have pooped! You have started smiling more & love playing any game that is sensory related. You even try throw yourself backwards out of my arms for fun! 😅

Today I had a moment where I was making a video of you & it brought me to tears. You turned looked at me, put your hand up to my face & leant into me. I honestly can’t tell you how special that moment was.

This month we head down to QCH to finally see neurology! An appointment we have been waiting 12 months for. We also see respiratory whilst we are there & who knows we may even be able to wean back to 0.25/L of oxygen! 🤞🏻

Your central sleep apnea is still well & truely there but you manage to hold your saturations well whilst you are awake.

It’s flu season, the scariest time of the year for us.

But so far we are managing okay, I’m praying it’s kinder to us this year than last.

You’re amazing my little moon.

Love always,
Mum
💜

Happy Mother’s Day to the Mama’s who never stop persisting.

🐦🐦🐦

Special needs moms..

How many times have you heard one of these statements?

When you’re talking about getting a diagnosis...

When you mention a difficult behavior...

When you even mention you have an autistic child or a child with special needs...

Some of them feel icky to me when I hear them like I did something wrong or I’m not doing enough.

Sometimes people say things and I feel like they dismiss my children’s challenges and diagnoses.

Sometimes people say things and I feel like it dismisses my own struggles and emotions that I also have.

Sometimes I feel like I’m made out to be a superhero of some sort just because I’m taking care of my child.

I know sometimes people just don’t know what to say. I don’t truly think the majority are trying to be hurtful and unkind.

And I think most comments come from a lack of understanding our world and our day to day because they don’t live it.

What is something you wish they would say instead?

What is something that someone said to you that has always stuck with good or bad?

This graphic has always been one of my favorites. I think it really conveys the things we hear on a regular basis.

Pic-CM Privett

Dear Luna,

Today we broke our almost 5 month hospital free streak! This is the longest stint you have stayed out of hospital in your whole life.

Our first admission at our local hospital this year.

Although it does bring me sadness it also bring me so much joy we made it this far without stepping in these walls.

You have been vomiting for 48 hours & this morning your vomit turned into blood so it was time to bring you in.

Your sugar levels are low & your ketone levels are high, hopefully once we get some fluids into you these level out & you will be back to your normal self.

Although you have been aggressively vomiting your lungs sound clear which is a great sign you have not aspirated.

Here’s hoping it’s a quick admission & we make it home for Mother’s Day.

I miss your brother & daddy so much already.

Love always,
Mum
💜

Dear Luna,

Today we finally received your supportive stroller & high low base! 🎉

After almost a 10 month process of getting it here we have it!

Of course I was excited to receive this but I didn’t feel too many big emotions until I stood & watched you & your brother tonight while I made dinner.

We put you in your “motorbike” as Forest calls it & dropped the high low base to his level. Forest went straight outside & got his motorbike & parked up right at your tray ready for dinner.

Forest was so excited he went into the draw & got “sissy’s” bowl out while Daddy got you some yoghurt so he could feed you.

For the first time ever Forest was able to safely feed you, the joy on his face while he scooped up the yoghurt & put it in your mouth was so wholesome. Although he did try shove the spoon down your throat & didn’t understand you needed small amounts & time to gather yourself he was so patient with you & listened to when we told him to slow down.

16 months I have waited for this moment to watch my babies sit together & have a meal together, yes the other stroller allowed you to sit at the table but this high low base has enabled you to be on Forest’s level with the correct support.

Tears flooded both mine & Daddy’s eyes watching you both have dinner together & engage like we had always imagined our children would.

A lot of days I still grieve the “normal” family life we were meant to live but moments like this I truely feel so grateful for the small things in life.

You have taught me so many things since you have been born & just how precious life & these small moments are!

But these moments aren’t small in our house, these moments are huge, just like many other families who have walked similar roads.

And these moments are some I’m truely grateful for!

Love always,
Mum
💜

Dear Luna,

As per usual life has been busy here, between market prep for our small business Staib Tribe Designs, Mother’s Day prep for our Mother’s Day launch, therapy’s & a Brisbane trip we have barely stopped.

This week end we will be attending our first ever market & I’m so nervous but also so excited! The weather man is forecasting showers but ain’t nothing going to rain on my parade! I have worked so hard to get so many products ready & daddy has helped me build all of the stuff to make our stall pretty!

Next week end we are launching our “Advocate Like A Mother” range & I’m so excited for that too! Being your mum I have had to stand my ground, create boundaries & push harder for you than I have ever had to do for myself. So this product range is well & truely inspired by you!

Our Brisbane trip was great, we caught up with some of our beautiful friends, had a great ENT review & managed to get there & back with no hiccups. ENT has cleared you to yearly visits & they are so happy with how your grommets have healed. We need to go see hearing Australia to see if your hearing has improved but I’m convinced it has as you are responding more to sound & a lot more interactive.

Although you woke up vomiting Tuesday morning on the day we headed home you managed yourself well in the car & we didn’t have a repeat of last time we were travelling home.

You are definitely not fond of long car trips anymore as your wind gets trapped in your belly & can’t be released, so that obviously was not fun at all for you & you are so glad to be home back to rolling around on the floor.

You are trying to pull yourself up onto things & tumbling everywhere, you’re getting so quick at it! You can mange a hunched over sitting position for 10-30 seconds & you are smiling at people you recognise! With everyday you are getting a bigger personality & getting sassier too!

We have finally found a dietitian & have your first Telehealth tomorrow. Your supportive stroller is booked in for delivery next week too! Yay! Finally! 🎉🎉

Things are good here & it’s so nice to be able to say that.

Your amazing little moon!

Love always,
Mum
💜

So greatful for this amazing organisation, they truely were the Home away from Home & still are on our trips for appointments.

Anyone who has stayed at RMDH knows just how incredible it is, from a roof over your head to a hot shower & so much in between.

Ronald McDonald House Charities South East Queensland Truely are doing great things!
💜💜

Dear Luna,

Today marks 12 months since we brought you home after your long stay in hospital.

Today I feel mixed emotions, it’s such a happy day after all of the trauma we went through we finally got to be home as a family of four.

But it also marks the day when everything got really heavy & hit me like a ton of bricks.

I was so angry at the world, so hurt & didn’t know hot to process all of what we had been through. I was angry at myself for not being happy & feeling detached from you after wanting this moment for so long.

Something no one talks about is how coming home after enduring a life changing event can be so triggering. When all the dust settles & you are left with your own thoughts. It gets really dark there somethings.

The calm didn’t feel so calm, it was actually excruciatingly loud, filled with flash backs of memories of fighting for your life.

It took months for the hospital monitor machines beeping to leave my head.

But as I sit here & reflect on all that we have accomplished in your life I feel grateful that we get to celebrate these anniversaries with you here in our arms.

16th of December 2022 is the day I realised just how precious life is, if I’m being honest I took a lot for granted before you were born & now half the things I used to worry about don’t even cross my mind.

Health, Happiness & my little family is honestly the most important things in my life. And although you may not be a typical “healthy” child our home is filled with so so much love & you are here happy & thriving after all that you have endured. And for that we are so lucky.

Happy 1 year of being home my sweet girl

Love always,
Mum
💜

Dear Luna,

I’m sorry it’s be a few weeks since I’ve written life has been busy.

Between sickness after sickness, therapy’s & running my little business we have been flat out.

It’s been a roller coaster here, with gastro, Covid, gastro, some other tummy bug, your reflux playing up severely & what I believe you to be having cyclic vomiting, then throw teething in there.. it’s been a lot. But we have managed to keep you home with no hospital trips although we were very close Thursday morning.

This NG tube. I’ve 100% had enough of this tube & I just want the Mickey button placed already. But we have gone from a CAT 2 back up to a CAT 3 which means it could be another 12 months.

I’m so worried with the amount you are pulling it out you are going to aspirate & get pneumonia, Thursday morning was a key example. I woke up to you crying, alarm going off on your oximeter & your saturation levels were low. You had almost pulled your tube out which brought milk & secretions to nasal passage & it was sitting only a couple of centimetres in your nose, as you are fed at a continuous rate over night your feed was still running which is extremely dangerous as you struggle to swallow & aspirate on thin fluids.

So I woke up to you vomiting up your feed, distraught & a borderline temperature. I needed to get Panadol into you so your temp would not climb any higher but you had no tube. So while you’re in the state I have to put a feeding tube down your nose into your stomach 33cm by myself as daddy is at work & here I am asking your brother who is 2.5 to get me things.

It broke me.
It’s been a while since something broke me. I’ve built up quite a tolerance to the amount of s**t we go through but Thursday it was heavy. Sometimes it’s just a lot to carry on my own.

It’s simple we need more support.
My sweet girl you are a high care child & we don’t have enough support in home.

We receive 8 hours care a week & our carer isn’t trained to look after your needs as we are not funded by NDIS for specialised care. Which means I am completely house bound & can’t even go get groceries let alone drop off Forest to daycare, especially when you’re unwell.

Later Thursday we had a meeting with Cross Care, a nursing group who will hopefully get us the right support for us, the trained support for us.

Now don’t get me wrong I am grateful we get 8 hours help but anyone who has a complex medical child would know that’s simply a sprinkle in the pool of hours we put into caring for our children & going out to simply get groceries or post parcels knowing you are being cared for safely would do my own mental health the world of good.

When we first got your diagnosis I was so grateful for NDIS as I thought it was going to be this amazing system that would help us & although it has helped us it’s a constant battle proving why we need the help or equipment & things move so slow. By the time we get your stroller it’ll be 12 months almost since we trailed it which is a prime example.

We have almost been home for a year since you left hospital & we are still yet to find an OT & have only just started seeing a Speechie.

There needs to be more support for children like you!
We are nailed into our heads early intervention is key & yet we struggle to find the resources or have the equipment to do so. Make it make sense.

On the positive side of things you are getting so curious, looking around more exploring more & rolling all over your play mat. You LOVE toys & anything that fits in your mouth as those chompers are just chomp chomp chomping! The curtain is one of your favourites 😂

We haven’t done any more purée tastes as you have not been 100% but you are starting to watch us while we eat which is great you are so curious with food!

Even though you haven’t been well you are still putting effort into physio & even fell asleep with your bum up in the air & knees tucked under you! You have never done that & struggle to keep your body in that position normally. Your tone is slowly getting stronger & your head control is getting so good on your tummy! Holding your head up for longer at 5+ minutes sometimes!

I’m hoping the sickness stays clear of our house for a little while so you can get a break!
I’m so anxious for winter & all the viruses it’s going to bring.

I’m praying your immune system can handle them better this year & we don’t spend as many days in hospital as we did last year!

You truely are amazing my little lady!

Love always,
Mum
💜

P.S how cute are the little moon tapes I made you 🥺🥺🥺

Dear Luna,

Happy International Women’s Day.

I promise to always make you feel empowered, loved & supported in everything you do.

You may only be a small lady but you have climbed more mountains then most in your time & im so grateful I get to be by your side while you do it.

Your strength is admirable, your determination is inspirational & I’m so proud of you.

So let’s do some updates while we are here.

In the last 2 weeks we have had gastro & Covid in the house & your little immune system has been strong enough to miss out on both!

You have cut another tooth & now have 7! they are so stinking cute I can’t even deal.

We have got a hired stroller now so you can actually sit supported. You & Forest are interacting much more now you’re able to sit on his level!

We had a nursing assessment today in hope to get more specialised help to support you as our support worker is great but due to our NDIS funding they are not trained to meet all your needs. We are hoping this brings some relief in the home & maybe me & daddy can have a date night for the first time in over a year!
L
We have been sticking to physio weekly & you are still trying to master sitting up but your low tone is still making it very difficult.

You are reaching for things more, knowing your surroundings more & even started recognising who is holding you & knowing who you want to hold you, poor daddy 😅 I’m definitely your favourite person at the moment.

You are loving your purée tastes & even holding the spoon & putting dips of purée into your mouth! Your even pulling your oxygen tube into your mouth, your new favourite party trick 😂

We have been doing a few days at EDCP & you even pressed a button to say hello all by yourself! Safe to say I balled my eyes out in front of everyone in the room.

Things are good here, things are calm & it’s such a nice feeling. Almost 2 months since we have seen a hospital which is our longest stint ever!

Let’s hope things stay this way for a little while longer

Love always,
Mum
💜

Feeling very blessed to have Luna’s story shared in one of the greatest organisations that saved us.

https://rmhcseq.org.au/staib-family/

Ronald McDonald House is honestly such an amazing organisation, they kept our family together, a roof over our heads, hot showers, beds & even food sometimes!

We are so blessed to have this in place for families who need it
💜

Dear Luna,

Happy Heart Anniversary!

Today marks 12 months since you proved all the drs wrong & beat open heart surgery.

I’ll never forget the day they told us you were too sick to make it & that the surgery would kill you. It’s not an easy thing to hear & then having to advocate hard to push for it knowing it was the only thing that could save your life.

But here we are, I’m so glad me & Daddy faught hard for you to have the surgery & didn’t just trust what the Drs said. We both knew in our guts that it was the only chance we had to take our little girl home.

And just like we faught for you, you faught to be here. You came out the other side. The longest 6 hours of our lives. Waiting. Wondering. Hoping.

So much for your 10 week old little body to go through but just like the absolute Warrior you are you made it.

It’s crazy to think that every bead represents something you have gone theough, every blood test, X-ray, surgery, day in ICU, NG Tube, etc. Putting them onto the fishing line was more triggering then I thought it was going to be, no one so small should have to go through so much.

I had big plans today to take some really nice photos as I’ve been prepping heaps of things for this day but I have been struck with Gastro & we have spent the whole day in bed cuddling. Which honestly has been so nice to just slow down & lay next to you all day. Cuddle you when ever I want too, something we couldn’t do 12 months ago.

So hears to your first Heart Anniversary, here’s to my little warrior & fighting everyday to show us you are meant to be here. You have over come more then an average human in your short 14 months of life.

I’m so grateful you chose me & im so proud to be your mum.

Love always,
Mum
💜

Dear Luna,

I received a phone call a couple days with the results of all your tests while we were at QCH.

The dr on the phone informed me everything had come back normal, bloods, biopsies & the EEG.

Today we went into your paediatrician appointment where we were informed that was not the case. Yes your bloods & biopsies were in normal but your EGG was definitely not.

You did not have any recorded seizure activity during the time you were connected to the EEG but the central part of your brain showed “mild & mixed slowing intimately rare epileptic form activity seen in sleep. Findings indicate epileptogenic potential in the central regions.”

What this means is although there was no documented seizure activity during the EEG there is a high potential you will have seizure activity due to your abnormal brainwaves.

How can the dr who rang me 2 days ago get it so wrong? Going from thinking everything was fine to it being pretty much the complete opposite. Shocked but honestly not surprised at this point as I’m learning medical professionals seem to sugar coat results & only the ones who you have built a relationship with actually tell you the whole truth in full detail.

You are having episodes of CSA & usually desating into the 70/80’s once a night atleast. But having our new monitor I’m much more at ease knowing we have hospital grade equipment.

You are showing early signs on a UTI, another one.. and today we have also discussed putting you on preventative antibiotics, urine samples have been sent off & I’m waiting a phone call to see about that & weather we start the preventative antibiotics. (Waiting to hear back from the renal team)

What this means is you will take a small amount of antibiotics everyday to hopefully help your body fight the infection & reduce the amount of UTI’s, you have had 5 in your short 14 months of life. The only downfall of this is you can build up a resistance. But as you are so hard to gain access & such a high risk of blood clots, this is the lesser of both evils.

We talked about putting a port (a medical device under the skin which runs straight to an artery in the heart) in which would grant us easy access but due to blood clots & the port being access to your heart this is too much of a risk. Last time you had a central line in it clotted & were at risk of a stroke if it reached your heart.

You were up from midnight - 6am vomiting last night but you have kept most feeds down today so hopefully it doesn’t end up in a hospital trip. 🤞🏻

We have heard from the stoma nurses & anaesthetist in regards to your Mickey button! So hopefully you will have the surgical gastrostomy placed in the next few months! Which I can’t wait to get rid of this NG tube & I’m sure you are definitely feeling the same. I had to change it 3 times yesterday due to you pulling it out.

A big day of updates. Things are all happening here you even tried some gravy the other night & absolutely loved it! I had to fight you to get the pork chop back 😂

The fact you have such a love for food when you have been NIL by mouth your whole life is honestly incredible. Most children develop oral aversion & you have not. I pray that one day your body lets you enjoy food properly.

Keep being the sweetest little girl I know!
You truely amaze me everyday.

Love always,
Mum
💜