Mitchell’s pks journey | Personal blog
Mitchell’s pks journey
Phone: +61 402 217 377
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25.01.2022 Mitchells back home we decided home would be the best for him if we are going to get him eating again, he isnt eating like he was only little bits of yogurt which takes quite a while but hopefully he will build that back up. No more vomiting which is fantastic!! We are now facing more and more issues with ndis and fighting with them trying to get home modifications funded for Mitchell in our new home they really like to make things difficult thats for sure
25.01.2022 Our poor little bubba is still sick, today Mitchell was extremely sleepy and then began power spewing insane amounts which with his diabetes needs to be monitored, he was refusing bottles hense the ng tube but has since had a bottle by mouth which is so exciting. Perth is questioning whether Mitchell has delayed absorption after the look of his spew so we will be looking into this further this week this would also explain why his sugars are so hard to manage Hopefully we can get him all hydrated and eating again then go home
24.01.2022 Mitchell has been so all over the place with his sugars but this morning within a few hours his ketones started rapidly rising, was a worry that he was heading into dka again but we have gotten on top of it fast which is great!! His ketones are finally coming down which is great but sugars are still at 23. I am hoping he will become more stable make some changes to his pump and we can go home tonight I was bringing him in already to see his paed and work out what was wron...g with him for him to be so insulin resistant so it worked out he did this while we were heading in Edit: we got to come home tonight (our own choice) Mitchell was not impressed being in a cot and since his ketones have gone back to normal there wasnt much the hospital could do that we couldnt do at home, if they start raising like today again we will take him back but at the moment hes super happy and back to normal
24.01.2022 How I hope you speak to your child about my child with a disability- Dear friends, As my child gets older, I realize we are reaching a new realm of advocacy- a...nd that is social. There are unavoidable and sometimes uncomfortable moments coming. I know this because they are beginning to happen. They include answering kids questions about my son or intervening if they are being unkind. Im reaching out to you because I am hoping you and your children will be our allies, my sons allies. With that said, Im hoping you can have an open conversation with your kids about mine. Because we need you, we need all of you. I know I would have been lost if someone asked me to have this conversation years ago. So, I am including some talking points that I hope you use about my son, Anderson. And perhaps, these will help you to have a broader conversation about children with disabilities in the process. The main thing is to not be afraid to say disability and talk about it openly. Disability is a natural part of life- its important our kids know about it. - Anderson has a disability. Andersons disability is called Down syndrome. Down syndrome is not a bad thing! It makes Anderson who he is. But it does make certain things more challenging for him. - Down syndrome means Andersons muscles arent quite as strong as yours. This includes the muscles in his mouth and tongue. That means It will take Anderson longer to learn how to talk. He goes to therapy to help him, but it will still take some time. - Just because Anderson doesnt talk like you do, doesnt mean he doesnt understand what you are saying! Speak to him like you would anyone else. But if you have questions like, Why is Anderson doing this? Its best to ask those questions to his parents when Anderson is not around because those questions may hurt his feelings. - Down syndrome means Andersons brain works a bit differently from yours. The part of his brain that manages how he behaves is not as developed as yours. This means he may do things that dont make sense to you, like: pick up a ball and run away with it during a game of soccer, knock down a tower you are working on, things that you did when you were younger- Anderson still struggles with. He will get better at this, but it will take some time. Its okay to tell Anderson no! Just try to have extra patience with him and understand this is something he and his parents are working on. - You cant catch Down syndrome. Down syndrome is something Anderson was born with and will always have. It is not a sickness. Its just something that makes Anderson unique. But even though Anderson may look, speak, act differently from you, in many ways he is very much like you! He loves to have fun, he loves TV and toys and more than anything- he wants to have friends. He wants to be included in your conversations and in your games. - Just like you, he wants to be accepted for who he is. And although he may not be able to say this with his words, he really wants you to be his friend. Dear friend, I know this conversation wont be the easiest. But Im asking you to have it any way. Not just for my child, my family, but for all children who have disabilities. We need you, they need you, too. And there is another great part of this- your child also needs this! This conversation will spur them into being more inclusive humans their entire lives. Its just one of many steps they will have to take to get there, but it is a good start. Thank you for your understanding and care. With Love and Hope, Your Friend ***Parents of children with DS- what would you add? If your child has a different diagnosis (or you yourself have a different diagnosis or DS) what you are some talking points we can tell our children about yours?*** Get the free ebook- 5 Spiritual Comforts for Special Needs Parents: https://view.flodesk.com/pages/5df181b3154bd20026a1aeaa
24.01.2022 Mitchell just had his last bottle hes fasting now and booked in for 1:55 to have his surgery They will have to some how find a vein and get a cannula in so they can control his sugars and avoid him having a hypo during this time, not looking forward to this at all
23.01.2022 Our Mitchell tried to come 6 weeks early but thankfully we forced him in for abit longer but he still fell into being prem. We are so proud of what we have overcome in our journey and so proud of how much Mitchell has fought since the beginning
23.01.2022 We are in the process of looking for a new bed for Mitchell. He is currently on a double Mattress on the floor with bed rails on the side but there are gaps which he has begun to get stuck in during his sleep which he isnt able to navigate his way out, risk assess or call out for help and its becoming quite dangerous. I have previously seen a quote another family had received for a bed like this and the problem is it was $14k!! Which is well out of our budget So what we w...ould love to find out is if anyone knows anyone who can make something like this picture, it doesnt have to be exactly the same but something similar to suit Mitchells needs. We are willing to pay for it, Im also currently working on applying for some money assistance for it, I just doubt they will fund that amount (We wouldnt expect them to either) Any suggestions or recommendations would be greatly appreciated * also a cot is out of the question he will only sleep if hes able to roll around an absurd amount
23.01.2022 What we thought was just a sunburn on Saturday turned into a trip to the doctors today thinking it was an infection, then a trip to hospital once Mitchell’s airways became compromised, he has had an allergic reaction to something but his face and everything is finally settling down now and we have taken him home to try manage him just very grizzly, sore and tired
22.01.2022 Well we have had the day from hell, I was just about to head into maternity for my monitoring when Mitchell had his biggest seizure yet lasting 6 minutes, stopped breathing and began turning purple it was horrific beyond frightening I don’t think I’ve ever cried so much! He was taken by the ambulance and after a while lots of tears and screaming he had perked back up to his normal self just very exhausted. He is currently on 3 seizure medications and bunbury Ed made a plan with pch of increasing 2 of them and continuing to increase one every 3 days and review again next week, if he has another seizure in the mean time ambulance and straight back in to Ed Here’s an old photo of Mitchell can’t believe he was ever this small
22.01.2022 Please send well wishes to Mitchells PKS sister Sophia. Her family have done everything possible to protect her from Covid but she has contracted the nasty bug. She is currently intubated in respiratory distress in the icu, She is only 8 years old. Please lift this family up, 3 other members of the family have now also just tested positive. This is what covid looks like for our children, can not even begin to imagine what this family is going through, I hope little Sophia pulls through
22.01.2022 It goes deeper than this one story. A Denver Kindergarten teacher allegedly said the following on social media: Im so tired of hearing about special needs children...They were re****** before COVID and theyll still be re****** after...Do you really think they will be any different after staying a year at home with their parents...Sorry, you f***** got pregnant and had a re****** kid. Your problem not mine. And yes, Im a f****** teacher. Of course, this is despicable. The... school board is moving towards dismissing him. Still, special needs parents are posting the story. Why? Because it goes deeper than just one mans words. You see, most people dont make outwardly horrendous comments like these about our kids. They are much more subtle. Its the in-laws friend who decides to pull you aside and explain why your views on school inclusion are wrong. Its the acquaintance who makes you feel guilty for using tax dollars to get services for your child. Its the online commenter who says you did society a disservice by choosing not to abort. Its the disapproving stares from the old man at the store. Do you see what Im getting at? Its not just this one mans words. Its that over the years we have received a similar message from strangers and those who are close to us: Your child is not as worthy as others. Not worthy of services. Not worthy of rights. Not worthy of human dignity. Not worthy to pursue happiness. Its your problem. Its their problem. Not ours. Deal with it. Im not saying these comments are the norm. I cant speak for the special needs parenting community, but I can tell you that the positive outside encounters with our child have outweighed the negative ones. But the negative ones are not forgotten. And when we see something said thats so egregious like the statement above, those old memories come rushing back. Do you know why so many special needs parents are posting this teachers words? Because we know the truth- they are simply a symptom of a collective illness. Thanks to the tireless work of advocates, society has improved for our children with disabilities. And yet still has so far to go. Part of the cure is knowing this- a different life is not a less than life. Our children are worthy. Of rights. Of extra support. Of inclusion. Of dignity. Of growth. Of the pursuit of happiness. Why? Because they are human. Fully human. Like me. Like you. We know that. We want you to know it too. - Jillian C Benfield (thank you for your words ) Feel free to copy/share!
21.01.2022 Mitchell is still so unstable with his sugars, they are making a fasting plan for him tomorrow for surgery since he has very severe hypos. Waiting for palliative care to come by this morning and social work to get more food vouchers ect for the week my level of exhaustion is just beyond words, we have spent about a month now all up in hospital with barely a week home in-between and I now have to spend the morning dealing with Centrelink about a wrongful debt I swear we never catch a break!! But throughout it all he is still the most happiest baby
20.01.2022 Such devastating news our thoughts go out to Zara’s family
20.01.2022 We had almost a week of Mitchells sugars staying in range but once again he has been all over the place since Saturday, hes very insulin resistant again so we do expect hes brewing some kind of infection now we just wait for it to fully appear Its horrible during these times when hes constantly high or has lows as you would just know in yourself with low or high sugars you feel crap, you have headaches and youre generally really tired. This is mitchell almost 24/7 he would be grouchy, feeling so tired, headaches and just exhausted and the horrible part is he cant voice any of this to us we just have to do our best as parents to go in blindly and try work out whats going on hopefully we can get on top of everything quickly and get him back in range at some point
19.01.2022 Very exciting day Mitchell now has a insulin pump!! Its going to take a lot of trial and error trying to get Mitchell stable but hopefully it wont take too long. With having the insulin pump we no longer have to give Mitchell insulin injections, every 3 days we replace the tube and its a little needle which is a lot easier Mitchell has still been ridiculously unstable and all over the place even with the endocrinologists carb counting and getting the correct insulin h...es meant to have but for some reason Mitchell will sky rocket and drop ridiculously fast, he really likes to keep us all on our toes thats for sure! Mitchell is the first child on the oncology ward to get a insulin pump so its a big learning thing for everyone! (With covid diabetes ward had joined with oncology) we are in till Tuesday at minimum hopefully not much longer we can not wait to get home
18.01.2022 It’s operation Xmas Jammies time again please take a look through and if you are able to purchase some jammies for a pks child around the world, we still have Mitchell’s from last year and absolutely love them operationxmasjammies.com
18.01.2022 We are staying up here till minimum Wednesday, Mitchell should be getting a insulin pump on Tuesday and if all goes well and hes steady we should be able to go home. He showed them how unstable he is last night which is terrible but thank god he did it, they always get better when doctors are around but Mitchell went from too high to read (over 25) to too low to read within an hour randomly in the night the nurse checked his sugars and they were all normal 15 minutes la...ter he dropped so I guess it showed we arent lying he is beyond unstable and this is what we try to deal with at home every day. Mitchells sugars have once again risen this morning to too high to read and his ketones are rising he was 0.7 a few hours ago, I really do not understand why we were sent home so early to begin with He should be staying between 4-8 ideally, but hes either over 15 or under 4
18.01.2022 Surgery went well!! Mitchell has grommets both sides and his abr after was perfect hearing Mitchell took a little longer to wake after surgery and required some assistance with breathing for abit but he has really perked up now Hoping all of this doesnt affect his sugars too much
18.01.2022 We are very excited to finally announce we are having one healthy active baby girl
17.01.2022 Finally announcing Mitchells going to be a big brother January 2021
17.01.2022 Sorry I havent really posted any updates it has just been crazy up here, Mitchell is still far from stable its normal for sugars to be everywhere during the start but Mitchell is an extreme so tomorrow he will be getting a insulin pump put in so they can give him lower doses and try to find a balance through that they generally dont like to go to an insulin pump with a new diagnosis but it may be the only way to balance his sugars and safely have him back at home. At the ...moment we should be home by Friday maybe Saturday if he is stable, its been a lot on us its so mentally and physically draining being here , its financially draining not only up here spending money on food/fuel/parking ect but just because you are here it doesnt stop all of your normal household bills at home so its definitely been overwhelming and we cant wait to be home and get on top of everything eventually again Love the nursing staff here they have been absolutely amazing letting me go stay up stairs in parent accommodation so I could sleep in an actual bed while they watched him last night and this morning
17.01.2022 We are finally getting discharged Mitchell spent 2 nights with us at rmh and they went pretty great his levels are a lot more stable. We are all beyond excited to finally go home its been a long month
16.01.2022 Can you help support medical families in need? We have used this service for cleaning and it has been such a huge help!! We will definitely be using this service again in our future as I am already having complications with this pregnancy and caring for Mitchell on top of it the housework has just piled up and this service has helped us immensely to get back on top of things
16.01.2022 Wednesday Mitchell will go into surgery to get grommets put in and have an abr so thankfully nothing dramatic but everytime Mitchell has come out of anaesthetic he gets sick usually a chest infection which is going to be a very dangerous time with his sugars so we hopefully we will go home on the weekend. Tuesday palliative care will come up to meet us and have our first appointment with them going to be a very long week
15.01.2022 On our way to pch Mitchell had a bad hypo tonight reaching 1.8 and was unresponsive we had to come in by ambulance, we will now stay up in Perth till his sugars stabilise
14.01.2022 Mitchell enjoyed his little trip to the park absolutely loves his car
14.01.2022 We have exciting news if Mitchell stays stable today and tonight we get to take him for a sleepover at Ronald McDonald on Saturday he will just be so happy to get out of the hospital for a longer period of time it will be amazing!! One step closer to eventually coming home
14.01.2022 Did something I never thought I would do its so daunting but I did my first patient opinion about Mitchells experience at bunbury Ed, our goal from sharing his experience is to get some diabetes training into bunbury hospital! It should not have taken so many doctors over the span of a week to diagnose dka, and we hope this never has to happen to another child and that no other family has to go through what we went through nearly loosing Mitchell! I do want to add how amaz...ing the paeds nurses and pcas were and how they could see there was something wrong knowing him prior and advocated for Mitchell before any diagnosis was made!! They have edited it abit before it was Shared, advocating for our children is such a huge part of being a special needs parent and I will continue to advocate for Mitchell and be his voice and push for diabetes training to be put into place at BRH https://www.careopinion.org.au/76689
13.01.2022 Such an exciting moment today!!! Mitchell doesnt have any toys like this as we have just thought he wouldnt be able to balance or enjoy it, and hes never been at the point of being able to balance especially while moving but he loved it. It was amazing to see him on a toy like a normal child now we have to buy one
13.01.2022 Im asking please have the conversation with your children about disabilities. Take the time to explain things about them and maybe learn something along the way. Acceptance requires understanding and understanding requires knowledge. We are afraid of the unknown even as adults so we cant expect anything less from our children unless taught other wise. - saw this on another page and couldnt help but share, us as parents are petrified of our boy being bullied there has already been comments made just in his short life from ignorant people. We know it will never be a easy road for him but if this pushes at least one person to teach their child to accept people with disabilities, thats one less person out there who could bully our boy start the conversation
12.01.2022 No body can possibly begin to understand what goes into somebodys daily life/routine in a short 15-20 minute observation absolutely ridiculous! I personally prefer to have my planning meetings without Mitchell present, its too much stress trying to care for him and focus on the billion questions they ask. You would think the countless amount of letters from specialists, therapists, gps and your impact statement would be enough
12.01.2022 Please if you know anyone who could help families like ours (us included) please share this opportunity with them
11.01.2022 Some physio to start the day off definitely does not enjoy the standing frame but hes getting better at it
09.01.2022 Merry Christmas to everyone!! We hope you had an amazing day and have a safe end to Christmas and New Years Mitchell had an amazing day with all his family, had yummy treats and loved being in the pool! We hope this new year runs smoothly for our little man we can’t wait to see how much he achieves this coming year and we can’t wait to see him be an amazing big brother
09.01.2022 Glimpse into getting Mitchell up for the day, his sugar levels have been very off lately the last few nights we are woken by the alarms that he is hypoglycaemic. When this happens we get up do a finger prick to confirm, if low give glucose (20 ml water 5 g glucose powder is Mitchell’s) wait 15 minutes, check again, if still under 4 repeat once above 4 follow with a bottle The actual morning starts with getting Mitchell’s bottle ready so 1x pediasure, 1.5ml keppra, 5 ml trileptal & 50 mls boiling water We go in do the normal nappy change ect then we do a finger prick and calibrate his dexcom on the iPad, then we put his glucose level and carb amount for the bottle into his pump and deliver the insulin, he then gets his chew bracelet put on drinks his bottle and then he’s ready for some yogurt and to start the day
08.01.2022 So grateful to the health hub and everyone who nominated us, feels amazing to head into the end of the year with some joy Mitchell loves his little gifts and I’m super thankful for mine
07.01.2022 We are in hospital Mitchell is borderline dka again so bunbury is debating whether they will continue to treat him or send him to Pch We find out in 2 hours with his next sugar/ketone check They have managed to get scalp iv access in so we are protecting that with our lives
07.01.2022 After so much hard work, headaches and major support from our family and friends we have been able to take this huge step for our family We are so excited to be able to provide Mitchell with an accessible home (once the renovations begin), we were getting really worried about how we would be able to care for and provide for Mitchell in the future after many knock backs from banks we are so incredibly grateful and excited that we have been able to get to where we are Mitchell is beyond excited about the pool he will create such amazing memories here
06.01.2022 Big thank you to sally Poole for donating the money to purchase Mitchell one of those ride on cars he loved up at Pch can not wait for this to arrive he will be so happy
06.01.2022 Absolute joke we experienced during covid the diabetes ward was closed so we were on the oncology ward and it was so hard for the oncology nurses having to deal with illnesses ect they arent used to, the specialist were spread thin running around from ward to ward as kids were just put in random places. Mitchell wasnt seen for a couple days as they put us on the surgical ward and the specialists had no idea where he was This is going to cause so many problems its ridiculous Mitchell has respiratory problems but we thankfully havent had to spend any time on 2b but we know many families who this will directly affect, so sad
06.01.2022 We have one sick little boy, all week hes been insulin resistant we thought it was just a tummy bug but Saturday hit and he started becoming wheezy. Sunday we took him in to see his paed at the hospital hes crackly on one side of his chest so we have started antibiotics now for him. Hes been having massive cuddles, lots of sleep and loads of bottles we hope these work and we dont need to keep going on different ones & steroids so happy they have a action plan for when Mitchell gets a chest/throat thing they dont like to wait and see/treat at home like a normal child, he deteriorates too quickly. Mitchells sugars have been extremely hard to control which happens when they get sick, Hopefully once hes better we can find a balance again and avoid going to pch.
06.01.2022 Mitchell’s new plan was meant to have 22+ per week & at least 1 respite night a year (we all need a break some times) but we received the plan and it had around about 2hrs per week things were getting quite bad mitchell was not receiving the care he needed, due to myself not being able to lift him it’s been an extremely difficult few months but We are so grateful to southwest emergency care who are now currently helping us while we wait for his new new plan to come and fin...d a support worker! Just having someone around to carry Mitchell to his high chair, put him in his standing frame just help so he is fully cared is incredible l After a lot of fighting, a few mental breakdowns and a horrific person from ndis saying that there will be no increases and Mitchell is our responsibility because he is two this broke me I was at breaking point not being able to provide Mitchell with what he needed and I asked for help and just got turned away I kept fighting for what he deserves and finally we have gotten somewhere, we have had word that we are approved for 17hrs per week Mitchell is two but he is 16+ kgs, to feed him every meal time is about an hour, requires daily physio and placement into his standing frame, he needs you to hold his bottle still to feed him as well as the management of his diabetes now. He is no typical two year old we can’t just put him in daycare or hire a babysitter like you would for a typical child it should not be this difficult to get help with someone’s daily care
05.01.2022 Such an exciting moment we just saw in the window of the family resource centre at pch they put up the pks brochures I brought up they were only meant to be in the kalparrin office and with genetics
05.01.2022 Baby Mitchells Story "Mitchells diagnosis of Pallister-Killian Syndrome had us boggled because well, it is extremely rare. Our boy is less than 500 reported... cases in the whole WORLD, less than 30 in Australia! A little bit about Pallister-Killian Syndrome, it is a genetic condition that occurs during conception, its not hereditary or environmental. The malformation is that chromosome 12 has 4 short arms instead of the normal 2. It is a mosaic syndrome which means not all cells that contain chromosome 12 will contain the malformation. The severity of the syndrome is determined by how many cells contain the extra genetic material and sadly we wont know how severe it is till Mitchell grows up and shows us" - Jaya & Matija You can follow Mitchells journey here; https://www.facebook.com/Mitchells-pks-journey-403309293563471/ And you can donate to his ongoing treatment here; https://www.gofundme.com/f/mitchells-pks-journey
04.01.2022 One very crazy day!! We noticed Mitchell becoming insulin resistant the past couple days but today he woke with ketones rising and even with multiple corrections via pen injections, carbs and temp basals his ketones have been rapidly rising they more than doubled an hour after his most recent correction Perth have set multiple plans but they have now given us 2 hours for his ketones to go down and if they dont or at least start coming down Mitchell will have to go to hosp...ital. We dont know what he has brewing, if hes going to get sick, if he has something contagious or whats going on Always happens after a Pch visit
02.01.2022 After a huge couple days and night we have gotten his ketones down to 0.1 hes had fluids potassium and whatever else he needed for the time being, so thankfully we can now take him home and manage his sugars at home and try to manage any ketones that arise So lucky we got in when he was borderline dka otherwise this would have been a huge Perth trip
02.01.2022 Big Pch visit today full ent review so poor Mitchell has to have the scope up his nose and a diabetes review not going to be a happy baby Little Koby is having a grandma visit so he doesnt destroy our yard
02.01.2022 HUGE FAVOUR NEEDED Mitchell is struggling quite bad with the heat, we have 10 more days till we were able to get an aircon put in. We have tried multiple fans in his room and a strong fan thanks to another medical family but this house holds its heat too well To get over these few days we are trying to find a cooling fan, water fan or portable aircon to borrow and ust get us by till the 5th So if you yourself or if you know anyone that has a spare one we could please borrow, please let us know
01.01.2022 Here is a GoFundMe for little Sophias family
