Max's Mission | Blogger
Max's Mission
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24.01.2022 It has been a while between rodeos, but this little guy was stocked with a suprise visit to his favourite place today.
24.01.2022 The sudden change in cold weather set this little champion off this morning. Luckily daddy was on it and with help from a wonderful friend, he is ok. Heading home for a quiet afternoon.
24.01.2022 He loved it. His little face when he came out and saw he had a bunny was just priceless. Easter can be really hard for kids with allergies, but its all about thinking outside the square, using safe foods, being creative with what you do have, and non food items to make traditions and treats that still make these days special. Im a huge advocate for kids not missing out! Allergies dont define these kids and they should not have to miss out because of the cards life thre...w at them. Would love to see your creative ideas and what specials things you created and found for your allergy kids this Easter.
23.01.2022 All smiles as we head home after another long night in resus. This kid blows my mind. His strength and his fight is like nothing I have ever seen. It will be a quiet day as he recovers.
23.01.2022 What a day! Its no secret that Max has a bucket load of specialists. When I first got Maxs diagnosis, I listed our issues, our goals and worked relentlessly to find the specialists I needed and frantically tried to squeeze them all in. This meant we had appointments every single day and sometimes it was 4+ a day. It took me some time, but I slowly realised this wasnt a long term solution and Maxs journey was going to be a marathon, not a sprint. If I had any chance of m...aking it out the other side, I needed to slow down. We have slowly eliminated the nonessential specialists and now we have an amazingly dedicated team who truly understand the complexities of Max and share our goals. Today we trialled getting as many appointments as possible on the one day to see if that was a better fit for us. It was a huge day, and didnt quite go as planned. To save you a novel, here is the highlight reel: Max has a new shiny button and handled the button change like a champ. He needed bloods done and 7 attempts later, they were successful. Unfortunately the stress of it was too much for Maxs body and he crashed, but his rescue medications worked perfectly and he bounced back really quickly! According to Max, the new Beyblades were totally worth it though! What a star! Maxs height has stayed consistent, which is great, but the weight and BMI have dropped a bit again, so we have a plan moving forward and the focus is now moving to not just getting him eating, but eating foods higher in fats and nutrients. The dieticians and feeding team are very happy with the huge steps forward we have made with his eating, and have some more strategies in place to continue progressing and hopefully encourage Max with some of the more tricky textures. Slow process. Everyone is happy with his progress medically and they are very impressed with Sonic. While the episodes havent reduced in frequency, the number of admissions certainly have and we are putting that down to Sonic now indicating well before Max is unresponsive. His other specialists are happy with a watch and see approach as everything seems stable. Huge day, but I am pleased it is all over and done with, with a couple of exceptions who want to see Max again to follow up on a few things in the next few weeks/months. We have said goodbye to a couple of specialists this time round (hooray!) and added a few newbies who are ready to learn the ropes of Max, but I am really excited about the team we have moving forward. As always Max has blown me away and it was great having Sonic with us for the day as he kept Max a whole lot calmer through some very stressful procedures.
23.01.2022 This is perfect!
23.01.2022 Today we got to meet "Murphy". Not even 24 hours after doing a post about having the longest run between resus admissions, today we end up in resus. After a very dramatic lights and sirens ambulance ride to the hospital, he came good and we are recovering at home and Max is loving being cuddled up with the most amazing sister in the world. It never gets easier walking into a resus bay full of nurses each dedicated to a different job to stabilise your child. Handing your ...child over to a room full of total strangers hoping they can pull your child through yet another crisis and praying with everything you have that he has enough strength to rise to the challenge once more, has to be the most unnatural and horrible experience to endure over and over again with your child. This kid blows my mind. He has more fight and strength than any child his age should have to have. Every single time he fights harder and stronger than I could ever imagine. The world truly is his oyster. As the head of Paeds ICU said, "he certainly is Max-a-million". Our friend added one more and said "he has Max Power!". Both 100% accurate and I couldnt be more honoured to be trusted to raise this incredible little superhero.
22.01.2022 After an eventful day yesterday, Max is relaxing in his new favourite place. He has an absolute ball. Lucky little duck even caught his first fish. Living the dream.
22.01.2022 One of Max's amazing kindy teachers made this hilariously awesome shirt for him. We are so lucky to have had the most supportive and encouraging teachers this year who have become a very special part of our village.
21.01.2022 Early start with the OT this morning and Max did well and even Sonic came along for the session. Max did well working on getting himself dressed, stengthening the muscles in his hands and dealing with his low tone. We also did some work with feelings and getting Max to identify other peoples feelings and how he should appropriately respond. This OT has been great for us and so much helpful information about why Max does the things he does and how he sees the world.
20.01.2022 National FPIES Awareness Day. This is FPIES. Raw, unedited and unfiltered.
20.01.2022 Sonic had some trianing at Maxs kindy today. We focused on making sure he knows he doesnt leave his mat. He did really well. Mat trianing is something we have spent lots of time on since Sonic arrived, and now we are just making sure he understands the concept in lots of different environments with lots of different distraction. Hopefully not long until he is able to go with his bestie to kindy. Max is settling back into term 2 kindy beautifully. Today they were talking about what superhero the kids are going as for dress up day. Max decided he was going as a Super Shark. He drew it all by himself. Great effort I think.
20.01.2022 How is this gorgeous little soul 5 already?! COVID rained on our big family party tradition, so we celebrate with a couple of his closest kindy friends at the beach instead. I found a new range of food which is totally safe for Max, which meant he got to enjoy his first ever chocolate chip cookie (no dairy, soy, eggs etc)! Looking at the photo for the grazing platters made me tear up. I can not believe how far we have come with Max and the progress we have made. Keep being you my amazing little fighter! We are proud beyond belief of you and honoured to be raising a little man as incredible as you. Happy birthday my darling boy.
19.01.2022 Early start for us this morning which meant it is the one morning Max slept in. My heart melted when I saw this though. The bond between these 2 is something special.
17.01.2022 This photo came home from kindy today. What a milestone! Coconut yoghurt has to be one of the textures and flavours we have struggled with the most, and today Max ate it! We have been getting closer with it starting to get to his lips, but today he actually ate it and even told his teacher he liked it. Its a long, slow road, but the progress we are making is more than evident in photos like this.
15.01.2022 Well that was an eventful morning! Our gate was left often and Sonic took himself for a walk. The whole community rallied and Sonic was found at the school where both Max and his sister go a few hours into the adventure. We live in a really special place and everyone goes above and beyond when someone needs help. Not sure if Sonic is more excited to be home, or if Max is more excited to have his bestie back. They haven't left each other's side since.
15.01.2022 Look what I did today! Peeled, played with and ate a banana. One of our biggest wins in a while!
15.01.2022 No explanation needed.
14.01.2022 Making the most of being back at the happiest place on earth.
14.01.2022 This kid! He just explodes with personality and joy.
13.01.2022 And we are back and racing! After 5 months off and a big week our BMX Bandit is back at it and couldnt be happier.
12.01.2022 Tonights dinner request...tomato sauce and honey. At least he is eating, hey!
11.01.2022 As most would be aware, about 12 months ago we purchased a dog with the incredibly large dream of making him an assistance dog for Max. Sonic arrived and we immediately started working towards what many would have considered a pipe dream. Along the way we thought about the possibility of trying to train him as a medical alert dog and have him pick up on Maxs episodes before Max was crashing. With the understanding this was going to be a huge amount of work and with absolutel...y no guarantees, add some incredible support and my own determination, I was prepared to do whatever it took to get there. Over the past few months, I have seen Sonic indicate more and more on Maxs episodes and Sonic is reliably indicating 20-30 minutes before Max is reacting. This has resulted in me trusting Sonics indications more than myself as he is getting them well before I am able to. In the video below, I had someone hide a sample (which we collected while Max was reacting) in a place I was totally unaware of. I told Sonic to "find it", and you can see he is able to pin point exactly where it is and he finds it well before I did and does the drop and bark, which is what we taught him to do. This is a game changer for us. By Sonic indicating early, it means I am able to preload Max with the emergency medications as soon as Sonic gives us the indication and this is now the longest we have gone between hospital admissions. This has been the most amazing process to be a part of and while it has taken more hours and work than I could possibly imagine, it has been life-changing. Beyond grateful for everyone who was involved in this process. Cant even begin to express what this means for us.
11.01.2022 This amazing milestone was reached tonight thanks to a beautiful friend. The enormity of this is not something we will ever take for granted. Go baby go!
09.01.2022 Sorry for the lack of updates, and I have tried to keep up with everyone who is messaging, but we are home! Max is doing well. He is on 24 hour continuous feeds at a very low rate and lots of anti nausea medication while we try and get his tummy settled again. We will slowly titrate the dose up until he is back to what he was on before the last reactions. It was a tough admission, but we are very grateful to be home and for all the support we have received this week. ... I know I have been slack in the updates, but we will try and post a little more frequently as we know how much you guys adore our little man. Thanks for the calls, messages, thoughts and prayers. We have read and felt them all!
09.01.2022 Loved writing this piece for My Food Allergy Friends for World Allergy Awareness Week. It has been a long few years, but I wouldnt change a second of it for the world. Love this little superhero!
08.01.2022 After a long few nights and an even longer day today, Sonic is on the job and getting Max to settle. I have no idea what is going on, but Max is in a really difficult phase. Its like we have gone back 6 months. His sleep is all over the place, he is really struggling to regulate and control himself, his meltdowns and aggressive outbursts are back with a vengeance and he is having lots of smaller episodes. Sonic the wonder dog has been a huge help though and is getting exce...ptionally good at giving us the heads up when something is off. We have also been working on getting Sonic to lay across Max when he is overwhelmed and unsettled and the pressure he provides is proving to be invaluable in getting Max to calm down. Tonight Max went into a meltdown, screaming, hitting and kicking the door in, to laying down in bed and calm within minutes once Sonic lay on top of him. See more
08.01.2022 I know we have been really quiet lately, and we will get back into sharing more now that life is slowly returning to normal. We are having some huge wins with this little legend lately. The most exciting one might actually be though his growth. We measure the kids on their birthdays and 1/2 birthdays. Today he turns 4 and a half so it is measuring day! Max has always been about a year behind Zoe in his size. Today though, he is 1/2 a centimetre TALLER than Zoe was at the sa...me age! His growth has always been slow, but this is yet another reminder we are heading in the right direction. Little victories, but we know how much work has gone into achieving this one.
08.01.2022 Great video about how to use an EpiPen!
08.01.2022 Tonight: Spaghetti Bolognese and grapes! If Max ever becomes a chef, I dont think the world will be ready for it.
06.01.2022 A very last minute attempt to make Max an Easter treat. I wasnt able to find a store bought Easter egg that was safe this year, so I attempted to make my own. And what could possibly go wrong when you leave it until the night before?! Apparently I forgot how to temper chocolate (a skill I have successfully completed many times before tonight ), so my homemade chocolate Easter egg was a total failure. Quick think and flashed back to this little cutie from a few years ago.... Not your traditional chocolate bunny, but I actually think Max will like this better. Puffed rice, rice malt syrup and rice bran oil...one of my first ever really creative recipes. Happy Easter everyone!
06.01.2022 Sonic has his first day of kindy today. He did so well, he even got invited back for tomorrow. Max loved having his buddy with him. These 2 are just the most beautiful team.
05.01.2022 Living with FPIES
05.01.2022 Back in the swing of things. Max did really well at our first OT session back today. Pushed my luck and tried for a haircut too and to everyones shock, Max was amazing! No tears, no screaming. First time we have had a positive experience getting a haircut. Lots of things to work on from the OT and lots of ideas to try and help Max regulate himself a little more. All in all it was a hugely positive day.
05.01.2022 I often get comments along the lines of "I have no idea how you do it all". Other than the obvious answer (the alternative not really being an option ), this article is one of my favourites! "LOVE is our why." It is as simple as that! There is nothing in this world that could possibly stop me from getting my little superhero to live all that life could possibly offer him. Nothing will ever stop that and it is truly the greatest honour to be trusted to parent one of the most special little boys that has ever been placed on this earth.
05.01.2022 Sometimes they wont eat. Sometimes they will. Max comes up with some strange combinations. Today its Easter eggs and Vegemite. Whats your top combination?
03.01.2022 I was looking back through old photos last night and something about these caught me. The bond these 2 had from the day Sonic arrived in our house is mind blowing. The decision to get a dog was big. Like I needed more work to do. Once Scott and I decided we would add one more thing to our crazy life, we showed a few different dogs to Max. The moment Max was a photo of Sonic, he fell in love. It didnt matter what dog I showed him after that, he wanted "the dog with the spot on his head". Sonic arrived and the bond was instantaneous. What we have achieved in Sonic is amazing and I am still pinching myself we did it, but we wouldnt have made it if the bond between Max and Sonic wasnt there. Nothing I did could have created that, and I am loving watching the story between a boy and his dog play out.
02.01.2022 Look mum, I'm a walrus.
02.01.2022 Not quite how I pictured we would be spending Sonics first birthday, but Max wasnt missing out on saying Happy Birthday to his bestie! Sonic has become such a huge part of our family in the last 12 months and it is hard to imagine a time when we didnt have this 4-legged legend looking out for Max, and even harder to be away from him for an extended period of time. This will be the 3rd day of this admission and it has been a tough one. We were brought in by ambulance on Fri...day morning, and Max has had several huge episodes a day since we were admitted. Something big is going on for Max, but as usual we are all a bit unsure what and what is causing him to crash so often. It has been a big few days, but Max is one hell of a fighter and he has certainly risen to the challenge this time. Happy birthday to our Sonic Boy. You are one hell of a super pup!
01.01.2022 Mummy forgot about super hero day at kindy, so thank you to our beautiful teacher for the last minute reminder that Max was very excited to be going to kindy as a "Blue Super Shark". Not bad for a last minute costume throw together.
