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Cause for Cruz

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25.01.2022 This week was a pretty good one....started off mucky with a fair bit of time off school with appointments for Cruz at the hospital and therapies Tuesday, Wednesday, Thursday.....but finished off awesome with Cruz getting to see two of his friends over the weekend with one coming to play Saturday and his other friend coming to support him at soccer today As you can probably see by the pictures, Cruz is besotted with his beautiful little sister and is proving to be a really... lovely gentle big brother who gets worried if he cant see his sister somewhere or if shes crying We are praying Cruz stays well as hes due to go under general anaesthetic on Wednesday morning to have his eyes looked at, his teeth cleaned, his ears drained out and bloods done. Its been a mission to get all teams on board to get these done whilst hes under, but we finally got there late this week so Im really relieved Due to Covid restrictions Im feeling a little gutted as Im usually the one going in with Cruz when he goes under and there when he wakes, but Ill need to stay with Violet and only one parent allowed so Nath will be heading in with Cruzy on Wednesday (p.s I know this is a small thing in comparison to people not being able to attend funerals, weddings, their loved ones in hospitals/aged care..dont get me wrong there!...its just a sad feeling not being there with your child as Im sure lots of people will understand, and very hard to try to explain to Cruz). I hope youve all had a great weekend, heres to an even better week

24.01.2022 When you get pocket money for pooing on the toilet....you shake it in your drink bottle for the next hour... especially when baby sister is trying to sleep

24.01.2022 Cruz had yesterday off school as he was due to get a new button put in at the hospital...hes always an anxious mess on these occasions so a whole day off was a blessing for us all lol. Friends of ours gave us their double pram recently as I was wondering how I was going to lug both kids to hospital appointments especially (as they are away so delayed....eg Eye clinic with 3 hour waits ) so I need somewhere where I can put the baby down in (and not just a short visit where ...Cruz could usually be in his wheelchair and Violet in a baby carrier on me). Cruz is pretty much too big for the seat but as its just to get inside hospital and back to car again its great for now! It was their first voyage yesterday and Cruz thought it was great fun in the pram....like an adventure ...he was waving to everyone we passed We had Cruz weighed when we arrived, then saw the dietitian. I got some news that I had been praying we would hear after hes been on his feeding plan for a little while now.....hes put on a decent amount of weight!!! Hes now 19.2kgs!! Hes reached the 10th centile, and theyre aiming to get him to the 20th/25th centile which would be around 21kgs. The heaviest hes been before, and all still with him vomiting each day usually twice....so Im very relieved New button insertion was horrendous as usual...all went smoothly nurse wise inserting, just so sad to see how upset Cruz gets soon as we enter the room and how strong he is fighting us all holding him down and the sweating and screaming ...plus this time we had Violet to add to the mix who J think was screaming louder than Cruz as shes such a little guts that she was hungry even though Id fed her in the waiting room....so both kids screaming as loud as they could. Thankfully Nana was allowed in to help We had a call yesterday too from the dentist in Brisbane saying hes seeing clients again now so Cruzs teeth will get cleaned next week on Thursday...which is also bloody horrendous and a huge ordeal so Im extremely relieved once again Nana will be here to help us at that appointment. On a happier note ....we got Cruzs school photos yesterday and oh...my .. goodness......we have the cutest boy ever!!!! Look at his picture Have a great weekend friends xx

24.01.2022 We had a huge breakthrough yesterday!!!!! Cruz did a wee on the toilet at school Last year about half way through the year he had started going wees on the toilet at school, but once returning to school this year he hadnt been since....so nearly 8 months in (and lots of patience and support from his carers, thank you ladies) he finally had the courage yesterday!!... On the way home I asked what he wanted for a reward.... In his few words and signing he communicated: Dozer....food = Feed Dozer some food Food.... eating...= After a few questions I got to the bottom of this....he wants to go out for dinner which is especially funny since he doesnt eat When I asked who do want to go to dinner with?....Na-Tan (Uncle Nathan who is my brother) , Nana and Bubby (Violet) He was soooo proud of himself and signed "toilet" for the rest of the afternoon (P.s No he hasnt lost his front two teeth although it looks like it when he smiles these days)

24.01.2022 For years Cruz has been Wiggles mad and this year he had a Wiggles birthday party. He of course got lots of cool Wiggles musical instruments for his birthday and has suprised us with trying to sing into his microphone ....its the cutest Listen until the end and he sings about his girlfriend Emmas "bow"

23.01.2022 Getting in some exercise this afternoon without even realising it... showing off for Dad

23.01.2022 Cruz had food therapy at the hospital during the week. I thought Id share these to show a bit of an insight on how much of a big deal it is to Cruz to even work up the courage to put food on a spoon into his mouth.... something we all take for granted as it comes so naturally. But as you can see, its really a big deal for a child who grew up with tubes in and out of their mouths from birth, constantly intubated, unable to eat and unfortunately lost that natural ability to ...suck, chew, swallow....all the things that come naturally to children as they progress from sucking either a nipple or a bottle, then onto pureed food and meltables then eventually solids. All Cruz is able to get his mouth to do is basically swallow...so he drinks from a water bottle and water only, and will eat maybe two spoonfuls total of yoghurt every so often. He doesnt know how to move food around in his mouth with his tongue, or know how to chew. So you can imagine how frightening it is if he imagines having food in his mouth... he literally doesnt know what to do with it as his mouth doesnt naturally know how to process the food. We have worked on this so patiently over the years and Cruz still isnt a fan of eating even yoghurt or puree and no interest in food. We will continue working on it of course, and it will be interesting to see how he goes when Violet starts learning to eat P.s....do you love his new word ....NOOOOOO

22.01.2022 Some pics from the last week

22.01.2022 Horse riding is now on Tuesday mornings Heres a little snippet of him trotting this week ....go Cruzy!!!

20.01.2022 School holidays

20.01.2022 Happy Fathers Day to our one and only.... Your first present of the day has been Violet and I vacating the bedroom since 4am so you can actually get a few hours of uninterrupted sleep before Cruz calls out for you around 6am to go lie with him The kids and I are so lucky to have a Dad like you to share our lives with...youre a mix of crazy, fiercely protective, totally in love and proud of your family, grumpy and the one who has to growl since Im too soft , but also ...a complete softie with us who only we get to see this side of you and it just melts me...., able to care for Cruz and attend to all of his needs, and would literally do anything I asked you to for your children (in the end maybe after a few eye rolls). We know how much you love us and we hope you know just how much we love you too Dadda.... youre the best and I wouldnt want to be in this parenting gig with anyone but you See more

19.01.2022 I absolutely love getting pictures like this from Cruzs carers at school to show me how much hes progressing with his sensory issues Touching rice and sand and digging for things in there

17.01.2022 What a way to cheer a boy up....a day with friends at the arcade

16.01.2022 After the crap start to his week, Cruz's week got better This week he ended up going to no therapy appointments...just school, and probably just as well as he's pretty knackered at the moment. Like most kids near the end of the year, and also with his bad sleeping again at the moment. He has done a couple more wees on the toilet at school this week which is exciting... hopefully more to come , and we were very proud on Friday he came home with an Excellence Award certifi...cate and his pic was in the school newsletter woohoo...for getting better at joining in at mat time with the other kids and being able to sit still and concentrate for longer before he gets distracted and bum shuffles off Cruz's friend James came for a sleep over on Friday night too which was gorgeous. They have such a cool little friendship and James is so good with him...very patient and tries his absolute best to understand what Cruz is trying to tell him and communicate to him. They played music, had a dance off, McDonald's for dinner and played Pokemon cards in Cruz's room (awww was the cutest). Today Cruz had his first proper swim of the summer....it was very loud...lots of squealing and excited yelling lol, but he enjoyed it and he was especially excited as it was his baby sisters first swim ever so that was a bit special for us all

15.01.2022 Sunday soccer was a great success today!! He lasted longer and really gave it a good go....so proud of him. He got the rest of his uniform today too so hes already excited to put it on....look out next Sunday

14.01.2022 Today we celebrated Cruzs 7th birthday...a few days early as its not until Monday...but we just couldnt wait A Wiggles theme this year as per his request After not seeing his friends for a few weeks,he was extra excited, and even more so that Uncle Nathan and his cousin Jaxon were coming to stay the night too Such a crazy fun few hours with his friends today at Inflatable World, and then home to chill for a little bit then open his presents. He was so spoilt, thank you everyone....and was so excited opening his presents, he literally loved every single thing He has gone to bed a very happy little man tonight thank you

13.01.2022 A tiring week for our little man...but we got lots ticked off and underway which were feeling good about. This week Cruz started back going to his Private speech therapist who we used to see every fortnight for years until his anxiety/behaviour and cost got in the way. Hes now not nervous to attend speech therapy again after a year off and seems very interested in trying to communicate (with everyone) so we have restarted this therapy and are really excited about it. Its i...Continue reading

13.01.2022 Violet will be just so used to her big bro and all that comes with having a sibling with special needs...in Cruzs case the loud outbursts, quirky behaviours, clumsy and un-coordinated so needing to be careful around him, the daily vomits, the anxiety, the repetition each day of him needing to follow routine and playing with the exact same toys every day (for years!!) and watching the same tv shows/programs every.single.day .... But what I am excited to see is what a patien...t loving little sister she will be.... I am already feeling a huge relief and happiness seeing how much Cruz has turned a corner with his little sis. He just adores her now and the way he looks at her just melts our heart. He lets out genuine laughter whenever she makes a noise....a hiccup, a moan, a fart.... anything she does is hilarious to him She is even smiling at him whenever hes around...hes definitely familiar to her and its just beautiful to watch their bond slowly forming. Feeling so extremely grateful to have two children and know that they will have each others backs. Siblings are so important to each other, Im lucky I know this from experience being the youngest of 5, and Im so happy my children will get to experience sibling love

12.01.2022 On Wednesday this week Cruz went under general anaesthesic so the Opthalmology team could get a good look at his eyes as for years now...as in 6 years...he wont co-operate in eye clinic and its very very hard to get a look at his eyes as you can imagine with all his sensory issues. While under the dental team also cleaned his teeth, as thats another area where we basically cant even get to anymore. The ENT (Ear Nose Throat) team also checked his ears and helped clean tho...se out too; And he got his bloods taken to check his iron levels since theyre all things that are becoming almost undoable when hes awake. Due to Covid it was Dad who took Cruz in on Wednesday much to my broken mum heart ...as Ive never missed a general anaesthetic and trust me hes had way too many in his life already....but Nath did absolutely amazing (and even got told he should work there). He wouldnt be Nath without growling the eye team about something, it was deserved though ...but he was happy with how everything went and was extremely grateful for our new thing where an O.T will always be with Cruz when coming in for procedures where she helps distract him with things he loves (like blocks, Wiggles) and also helps prepare a plan beforehand due to his sensory issues as in: -Only parents to access Cruzs button to insert medication -No ones to touch him unless they really need to -No arm or leg bands, just a sticker on his back -Pre medication to calm him is a MUST, and he needs quite alot! -No obs done beforehand just a temp check -No blanket on him when hes waking up from general anaesthetic as he cant stand anything on him except his PJs - We are to be with him right until hes unconscious and there as soon as he wakes - The less people around him or talking to him the better - Talk to him as well when coming to see us as he understands you and is a person too....talk to us about the nitty gritty but include him as he knows what youre talking about This proved to be great and calmed our nerves knowing this was in place already and teams were aware of how Cruz behaves in hospital. He woke up quite upset Nath said, and came home very very dopey and all he wanted to do was cuddle his "Bubby" Violet bless him He recovered from the g.a really well though and went to school the next day just for a short day, and is back to new today with sparkling white teeth, he can hear good again, and we have a new script for his glasses so hell be able to see correctly soon too

12.01.2022 Fathers Day soccer today....Dads got coffee and cake too

11.01.2022 Park fun with Nana....the squeals are excited ones rather than nervous ones too

11.01.2022 Getting in early as mornings are a little ridiculous here.... Happy birthday to our Cruzy boy!!! The big 7 today!! How on earth is our baby 7 already I guess the 7 years havent exactly gone that fast lol, as we learnt to treasure every little moment with Cruz and celebrate any little thing, milestone or achievement....and so many of them took years and so much hard work ...so we learnt to finally let go of any expectations or time frames and just focus on having a HAPP...Y child....and I think it worked Something that Ive heard so many people say about Cruz over the last few years is that he makes them feel happy when theyre around him...and thats something that makes me feel really proud of him as I want him to grow up being kind and make people feel happy...he doesnt need to be the smartest or best at something but I would love to know that he is nice and a good person...and I feel like we are heading in that direction and it makes my Mumma heart super proud We love you Cruzy, happy birthday my babe

10.01.2022 Look what arrived today!! Cruzs very own CAP Chair It has a removable tray and is height adjustable so it can grow with Cruz for a while yet. He loves it, and its steel so quite heavy so he can shuffle over to it and pull himself up, then sit down himself....so hes feeling quite independent Its also great news for us as be was getting much too heavy for us all to be lifting him in and out of his highchair.... We purchased this chair with some of Cruzs fundraising money that was raised this year and are so extremely grateful to everyone who helped towards this Cruz can use this as just a normal chair (and good for his posture), its his feeding chair, and also to do activities and school work in

10.01.2022 Home in one piece by 8.30am .... couldn't believe it got downstairs to order my coffee and the coffee machine was down....OMG Nurses said Mumma got 30 mins sleep... according to the machines Cruz got nearly 5 hoursThey said if not for the monitors they wouldn't be sure if he was actually awake or asleep either as he's moving constantly, kicking his legs, calling out "Mum", sometimes sobbing, but he is in a half sleep. No wonder he's so knackered each morning ...though. She said he went into a deep sleep for 30 minutes (when I got my 30 minutes ) that's when they came in to try out another monitor on that they couldn't manage to when he was awake....however it woke him and didn't go into a proper sleep after it....they said he's such a light sleeper any little noise or movement wakes him (like I didn't already know that),especially when he's in that state of sleep where he's half awake half asleep. Looking forward to report from doctors anyway. Was due to go up for clinic appointment in December but with all his apneas last night and a few really long ones the nurse is going to request they bring it forward asap. Walked through the door at home to only get projectile vomited on by Cruz and poo pants...oh well least I'd had a coffee before it. No school or horse riding today.... just resting at home for this lot

10.01.2022 Well a lot has happened since I last put anything up.... - Nana has flown back to NZ... quarantined in Auckland for another two week stint, so all up Nana quarantined for a month and was with us for 3 months We will be forever grateful to my Mum for this time, as it could never be replaced and meant so much to us all - Cruz lost his other front tooth a few days after losing the other top one...so he now has no two front top teeth...makes for a lovely smile ... - He has been home sick this week with a cold... driving Violet and I crazy All this weeks appointments were cancelled like food therapy, speech, horse riding and soccer Cruzs O.T sent us an activity to try at home which proved to be quite a success thankfully the other day! Hes been doing so well with his attempts at talking and singing, his signs are getting better and hes loving being more independent with his toilet frame and getting around everywhere in his Walker - Last week at the hospital Cruz had food therapy, followed by an eye clinic appointment. The eye clinic specialist finally gave in and said its just ridiculous trying to get a look in Cruzs eyes and has been for years..so shes going to have to do it under general anaesthesic. She wants this to happen within the next month...so while hes under we will try to arrange for as much difficult things to usually do as possible...like getting his teeth cleaned, and getting his ears cleaned out (took him to docs to check his ears and theyre both just walls of wax and need professional cleaning out) and bloods taken). So at this stage waiting on a date but 2nd Sept has been flagged as a maybe date. - Today we went to Brisbane to have a final fitting and collect Cruzs new AFO boots and are really happy with them. - Today Cruz has been a big brother for 3 months!! Happy 12 weeks Violet Will put up some videos shortly too. Have a great weekend everyone, especially ppl in Qld enjoy the long weekend

08.01.2022 No he hasnt been in a pub brawl........just a big ordeal losing a front tooth....I may have been laughing so hard I cried today watching this unfold as just minutes before he was being silly trying on his sisters headband and dress that got sent over from NZ then things escalated quickly

08.01.2022 First week of school holidays done already!!! Thank you Nana for helping keep Cruz occupied and happy especially when Im feeding and busy with Violet Cruzs Uncle visited this week, weve done a few day adventures, had some boy time with Dad, he got to go visit his friends who were staying at a campground, saw his buddies at a birthday party yesterday and then had a family day with Dadda today which topped off the weekend ... Im so so happy to report that Cruz is in love with his little sister now too He is constantly asking to cuddle and hold her, always asking for his "baby" and trying to play with her and show her things/programs/toys and kissing her gently. If she cries he bum shuffles over to her and pats her tummy its very sweet. Weve only had a few little taps to her head from him...and obviously hes never left alone near her and isnt allowed to hold anything in throwing distance to her (or in the car) as our Cruz is a thrower and has THE BEST aim!....so we are always playing it safe! Heres some pics from the rest of this week

08.01.2022 This week has been a week all about Cruz and especially me getting my head back in the game again about getting focused on Cruzs goals and making sure Im not letting things slide with my baby brain We had a meeting at school with all of Cruzs team (Head of SSC and inclusion support, his carers, Physio, O.T, Speech and Cruzs class teacher). We went over how this last term has been and the new things Cruz is doing and what theyve done. All the different areas shared wher...Continue reading

07.01.2022 Progress this week ... holding the reigns at horse riding for 15 seconds!!! And; Food therapy today, drinking 20 sips of chocolate Pediasure drink (liquid food basically) from a cup, a sippy cup, and a cup with a straw ...he even had a chocolate moustache at the end So proud of you Cruzy!!!!

06.01.2022 Horse riding on Tuesday

05.01.2022 Sunday morning soccer Slowly building up confidence

05.01.2022 A good week this week....busy as usual but thats our "norm" Really pleased with Cruz at all his therapies this week...he did well at Horse Riding, Food Therapy and Speech...and he knew it I feel like he falls in love with his sister more each day and the constant request to cuddle her goes on like a broken record ... I think his highlights of the week (by the amounts of excitement and squeals ) was having a bath with his sister and I....and going to Bunnings as a family (with Dozer too) today bless him. He was just so happy

04.01.2022 I too am one of the lucky ones who has always been able to never miss a moment with Cruz. Reading this article is how I have felt on so many occasions where I felty so lucky to be really present in the moment with Cruz and experiencing everything hes experiencing and celebrating the little, and big things with him. I will also be forever grateful to my hardworking hubby who never put the pressure on me to go back to work, even in tough times, as we both knew that the best person to look after Cruz was me and that Cruz needed me

03.01.2022 And thats a wrap for school holidays!!! This week we managed to get outside for most of the days that it was sunny and get that important Vitamin D We had some special visitors this week too which made Cruz super happy Didnt get pics of all our visitors but you know who you are Thank you making Cruzs week... Uncle Nathan and cousin Jaxon stayed over this weekend so there was lots of excitement in the house and gorgeous little giggling fits going on Those two are going to be trouble together when theyre older....just like their two "Nathan" Dads Nana has gone home with my brother and Jaxon now for a week or so, and Cruz is back to school tomorrow, so back to reality tomorrow

01.01.2022 As of Sunday, Cruz is officially part of a soccer team, an Inclusive Soccer Team through the Musgrave Mustangs. As Cruz isnt at a point just yet where he can understand the rules and do everything that the other players are doing, for him its all about having some fun and being with a group of friends in his cool little uniform, kicking a ball around the field, getting some fresh air and exercise and hopefully learning to be a part of a team Each week we will try to pull back more so that hopefully at some stage we can watch on the sidelines when he gains his confidence out there and wants more independence Such a lovely group of people and players, looking forward to our Sunday activity as a fam So proud of you Cruzy

01.01.2022 We got phoned again at 1pm, well it's now yesterday, to ask if we could come to the Children's Hospital for a sleep study for Cruz. This time I felt more ready and he had had a great night sleep the night before....so I said yes so we could try get it over and done with before Christmas. It's now 4am and Cruz still hasn't slept..... He wasn't allowed his sleeping meds obviously so they could see what his brain behaviour was on its own and what's going on....so after a torri...d night he's still fussing around in bed grunting, kicking the sides of his bed, already had a few vomits, cries, throw in Violet crying and needing feeds and her Mumma too....and it makes for a great night He did so extremely well at being brave at the start by letting them put all the cords and stickers on him, although resisting it and causing a scene, but not getting so worked up that he vomited for once (as there were two amazing nurses who were so kind and patient and did it at Cruz's pace). However 90% of it all had to be removed by midnight as he was starting to pull things off and sweating and vomiting and sitting up so things were coming off etc .... So now he has just a few things on that are essential. It's so hard doing things like this now that he's bigger and stronger and oh so much more vocal.... He's literally screamed the place down and had to have two nurses holding him while hes going bazurk and I'm trying to calm him to even just put a sticky on his toe. They both commented on how strong he was when he's angry I've just had the nurse who is watching Cruz race in as she said she wasn't comfortable leaving him as he's stopping breathing constantly and his grunting and kicking his legs is him snapping out of his apnea episodes. She wanted to talk to me as she said she's never seen anything like it....his behaviour and noises and breathing....she's very interested to see what the doctors make of it tomorrow. She said it's probably a good thing they're seeing him at his worst too and what he's like on no medication to calm him There is going to be a very tired Mum and her two babies leaving here this morning Sneaking out to eat my dinner at 11pm in the parents kitchen and half way through hearing him screaming and vomiting.....I don't miss this hospital life one bit!!!

01.01.2022 This week has been a pretty mucky week...but its got better as the week has gone on Started off with both kids looking like they were getting colds Monday afternoon so weve kept Cruz home from school most of this week just incase, and had to cancel this weeks appointments of food therapy and Speech therapy Luckily he came right by the end of the week so we could go to horse riding on Friday Some cool things that have happened this week are: - We purchased Cruz a bigg...er car seat as he had finally got too big for his normal one. I thought the only other option was a special needs type car seat so I arranged for a quote from a local supplier....much to our disgust we were quoted $10,000 plus installation costs I put the word out on a few group pages for advice and found out there is a G Type car seat you can purchase that can fit kids up to 8 years old (sometimes older) if they are reasonably small. We went straight to Baby Bunting and found one...for $370 so much much more affordable - Nath and a friend made Cruz a toilet frame to promote independence going to the toilet...he also has one at school so its great having consistency. Got a quote for one of these too and it was $600...thankfully Nath is a handy man and we now have our own frame for a box of beer for a friend and spent under $100 at Bunnings Cruz loves it and is signing to go to toilet all of the time He walks up to it in his Walker, holds onto rails, steps up and turns around and then we just need to take his pants and nappy off. He can then sir down go toilet, we still need to wipe him and pull up nappy and pants, then he can get himself into walker again and walk to the hand basin to wash his hands. Hes feeling very grown up - Hes done lots of physio at home this week and its actually going really well....hes almost enjoying it even - He had a great day today taking us girls out due lunch and just loves all this time with his Nana and getting to see her all during the week too Tomorrow is going to be so exciting.....hes starting his soccer team!!! Expect lots of proud Mumma spam

01.01.2022 Still on his 8 week program of a physio plan to strengthen his legs to try to help them not turn out so much...here is he being a good boy doing his physio on his birthday night A few other snaps from during the week at horse riding, and at home being such an amazing big bro to his little sis Violet

01.01.2022 After 4 months off (due to Covid) Cruz was able to get back in the saddle on Friday!!!! He did so well too!! Only abit anxious mounting his horse Flake....then right back to where he left off!!! Was so proud Then an early finish of school and up to Toowoomba to see the family and go to Cruzs cousin Jaxons 2nd birthday party Our first time away being a family of 4....car was pretty full lol... We picked up Nana too so my Mum is back with us for a few weeks until she makes the journey back to NZ (where shell have to quarantine somewhere again for two weeks before she can actually get home). Lots of excitement today so a very tired boy tonight