It’s been a while since the last post and thats because Luca has been pretty “boring”. Boring is a good thing to be in the medical world, because it means he has been relatively healthy. No hospital admissions and only a short period of time where he was randomly throwing up.

In February, we celebrated a huge milestone- Luca turned 10! We had a party for him (which I vowed to be my last kids birthday party!) and he was happy to show off his walking skills all over the tennis court. Later in the month, as part of his birthday present (thanks fam & friends), Luca and I spent a night away together in Lorne. He took the master bedroom, with the ocean view, while I slept in the lounge room on the sofa bed. We had a wonderful time- even though Luca’s cherry tomatoes on his pizza were stolen by a kookaburra when we ate outside. We spent a lot of time in the indoor pool and minimal time at the beach (Luca is not a fan of sand).

Sadly, I received a phone call from our Genetic Counsellor, as a courtesy call to confirm, that they still have not got a confirmed diagnosis for Luca as yet. They will continue to keep trying, but I might not hear from them for another 2 years.

In better news, Luca’s most recent hip xray shows that his hips are still improving and looking as they should. The more he walks, crawls or is standing upright, the better the bones will remain in place, as they should be, without the need of surgery!

At school, there was a bit of a hiccup at the start of his Middle School years. He was placed in a class with students a bit more advanced to him. My normally chill and smiley guy, became the very anxious, yelling and screaming type in class. 😦 While speaking to his teacher, I was so sad, because Luca LOVES going to school. After speaking with his teacher and coordinator, it was decided he would go back into a class that suited his learning style (slow and fun). He is back to walking in his walker a lot more- rather than doing book work. he has the job of returning the roster to the office. He seems alot more happier- at school and home. His teacher has just told me that he knows the letter of his first name…she’s now going to work on the next letter. The other most exciting thing, is that she knows (now I know), that his favourite colour is blue. He is obviously grabbing blue things and pushing away other things.

So, 10 years on, we’re still in limboland… but he is boring and we are surviving. I’m so proud of the little guy and how far he is coming. I think of the younger him and me 9 years ago. What a hellish landscape it was. Never, did I think we would be here. Never did I think I’d be getting these huge, strong, bear hugs from my guy. I am so lucky to be “stuck” in this limboland for longer with him.

Late last year Luca was finally booked in for an MRI on his brain- in particular his pituitary gland. When we got him all gowned up, the Doctor wanted confirmation that we were having an MRI for his pancreas?! Turns out, the MRI that was requested during lockdown (2021) for his pancreas was finally about to happen. Luca had been on a waitlist that long. To have an MRI, Luca has to be sedated because he can not lie still for 2 minutes, let alone 30-40 mins. The MRI for his pancreas was to follow up on the pancreatitis he was having, which has not happened since coming off a medication- so therefore, I DID NOT CARE for an MRI on his pancreas… please brain… do brain! A phone call was made to THE best Doctor in Luca’s life- his amazing paediatrician. She sent through a request to have an MRI on his brain instantly and it was happening.

Luca has only had one MRI on his brain. That was when he was 10 months old. That was when our lives changed. Did life change after this MRI? No. It just hammered home the cards we have been dealt, that maybe I needed to hear again. As the years go by and I see Luca slowly learn new skills and be in relatively great health, I do wonder whether the Doctors got it all wrong all those years ago. He is still here and SO happy. He doesn’t look unwell?! And, I don’t think he is unwell or unhealthy. He is just built different. His brain is different and works slowly. His body does what it can.

Luca’s brain is officially small and is slowly shrinking and deteriorating. His Doctor described the “highway” that sends the messages from the brain to the body as very very thin, which is why he learns and does things so slowly. This MRI compared with the one he had when he was 10 months old, all but confirms he has a Mitochondrial disease as his brain has deteriorated in the way that Mito does. The MRI report is all jargon that I’ve tried to google translate and really sounds like they are describing the brain of someone going through dementia, not a nine year old boy.

What does this all mean for us? It means I love and hold him tighter each day. I try to make sure he knows how loved he is. I try to make him cackle laugh as much as possible. I try to feed him all the foods he loves (chips, pasta and pizza). I try to encourage all his walking with me. I try to get in the pool and swim with him. I try to get him to chase me in his wheel chair or in his walker. I try to make sure he has the best time with this sister. I just try to make this the best life for him because one day his little brain may not be able to try for us any more.

I also wanted to take a moment to reflect on Luca’s girlfriend, Ivy, who sadly passed away in February this year. Luca and Ivy met when they were babies and have had a similar path way in life. I love Ivy’s family so much and I believe that in the future our kids will be together again. Luca loves Ivy forever. ❤

You know how lots of parents say about their kids “I just wish they would stop growing” or “I wish they were little forever”?! Well, it seems my little Luca has plateaued in his growth. He has pretty much done the thing that other parents wished for.

I never wished it.

Luca turned 8 years old in February. He is pretty much the height of a 4.5-5 year old. His feet have stayed the same size as they were when he was 2. He still fits in a toddler pram. He has weighed around 20kg for the past 2 years.

There’s a lot of reasons why him being smaller has suited me. The biggest one being I can comfortably carry 20kgs up and down stairs. He doesn’t walk- I (and others) need to carry him a fair bit. Its convenient that he still fits in the pram- because it is light and folds down easily for us. On nights where he can’t settle, I can easily crawl into his cot bed with him. He also still fits in a cot if we’re away from home. He still fits in supermarket brand nappies. He still fits in the Ikea highchair. He still fits in his carseat thats made for 4-8 year olds. He still fits easily into our lives and hearts.

In January, our gorgeous and best paediatrician advised she was going to refer Luca to an endocrinologist (dr who specialises in hormone related issues) to investigate why Luca is no longer on those charts for “normal” height and weight. Last week we saw the endocrinologist and he did some blood tests. Most things looked ok/normal, but, there were a few things that now have me thinking that ignorance really is bliss. Will knowing these things bring on that anxiety I used to have when Luca was younger- trying to work out if there is a new symptom to a new health issue? Is this the start of the end?!

The first semi-concerning blood test showed he had very high sodium level. Does this relate to his kidneys? The next blood test show high urea in his blood- again- kidney related? So, of course, I’m focussing on his water intake, making sure he’s peeing etc. I’m so in the kidney zone. And the last blood test that seems to concern the endocrinologist and now me, is his “insulin-like growth factor 1” (IGF-1). It’s super low. Combined with a bone xray it confirms that Luca has almost stopped growing.

So, Luca is now on a waitlist to have a test that goes for 3 hours. He will be on an IV drip to see if he is insulin resistant. There are discussions about a future where we have the option (“not mandatory but strongly recommended”) to inject Luca with a growth hormone. My mind is racing around. I don’t want to inject my boy to make him bigger. I just want him to grow on his own. The future sometimes sucks. So for now, I am living in the now, with my darling, little boy.

Letters and a number on a scrap of paper looks like trash to most. But this is the closest to treasure we have been in the 7.75 years we have been hunting for a diagnosis. This is NOT Luca’s official diagnosis- but it is the strongest lead the team at RCH have had.

MT-ATP8
A type of Mitochondrial Disease.
It is a mutation in the genome of mitochondria. (Not sure if I got this right- all by memory!!)
NOT HEREDITARY.
This hasnt been passed on by Luca’s dad or me! So will not be a threat to Luca’s sister or her possible future kids!

There are only a handful of people in the world who have it.
Of the people who have had it, the organ that it affects is the heart.

In June, there is a Mitochondrial Disease conference in Europe and RCH (or Murdoch?) staff will be presenting Luca’s case to see if there any matches or extra info.

I am so thrilled at getting SOMEWHERE!
The tears have been flowing.

Hopefully in a few months we may get confirmation and possible connections or information.

🙏🏽♥️

It’s been a while and *spoiler alert*- Luca is still undiagnosed. While he does not have any diagnosis or info on his mysterious/rare condition, we were able to have his hips, eyes, heart and brain waves tested.

So, first up, we had his hips Xrayed. They need to be X-rayed every year, to ensure his hip sockets are in line. To ensure his hip and leg bones keep working we encourage Luca to be standing or walking or even crawling so fast (like he does) to keep that movement happening. The orthopaedic surgeon took a look at his hip Xray and was very emotional. She said that when she sees kids like Luca, she can only hope to get such a positive outcome like Luca’s. His hips are IMPROVING. They are visibly improving each year. Getting better. What does this mean? He does NOT need surgery. The possibility of him being able to walk independently is very much a reality. He LOVES to be upright. My dream of being able to walk down the street with his little hand in mine, walking along side me makes my heart swell with so much love. This is HUGE. As Luca slowly starts to get heavier (he is only 20.5kg at almost 8 years of age), him being able to walk independently would change so many lives- especially his.

Next up was getting his eyes tested. This is a tricky and tedious test for Luca. They put drops in his eyes to dilate the pupils. Then they hold up certain boards and look at his eye reactions with special equipment. It blows my mind how they can work out what Luca can and can’t see. His eyes have not got much worse in the last 12 months. He is +3 or +4 -long sited, and they don’t think it would benefit him/his life by adding glasses to the mix. It may frustrate him. So for now, no glasses or intervention needed.

We also had his routine heart checked out. That was fairly simple and seemed to be happily ticking along as it should be. Last time he was in hospital, he had a heart murmur- but that seems to only be if/when he is ill.

I had noticed over time that Luca was doing more and more facial expressions and also laughing randomly at nothing. At first, I would think he was “seeing dead people” and laughing with ghosts… then I Googled and saw that there is such thing as a laughing seizure. So, I asked Luca’s beloved paediatrician if we can come in to get an EEG- Brain wave scan to show any seizure activity. Luca was discharged from the neurology department years ago… but because I missed his absent seizures in the past, I worried I was missing them now- or he was having different seizures. The morning of the EEG, I got Luca up at 4:30am so he would sleep for his EEG at 10:30am. He did not sleep. He did come close- but as always- fought the sleep. He did end up doing the weird facial expressions and laughter that I worried about- so at least we could tell if they were seizures or not. Weeks later we go the results, that he was not having “textbook seizures” or that they were clear seizures- but of course, his brain being built differently meant that the brain waves were “abnormal” but not something to worry about. If I was still worried we could be admitted for 3 days for a seizure/sleep test. For now, I am not worried.

Luca also went and had allergy testing for his Egg allergy. And after a few hours, we can now safely give him cooked egg in his meals. He is still anaphylactic to tree nuts.

So, thats our most recent medical update. Still in limbo land, but the boy is relatively healthy. He did manage to get Covid again last year- but showed no real symptoms compared to his first bout. We’ve been to RCH Emergency department with suspected pancreatitis, but both times got to go home because it was NOT pancreatitis but a common bug or something else.

On the home front, we added a kitten to the family. We could not add a dog to our family, of the simple reason that Luca crawls everywhere and dogs tend to either jump on him or lick his face. If Luca walks independently, or has the need, a therapy dog could be a good inclusion- but for now, we have a kitten that is VERY interested in Luca, but Luca shows NO interest in AT ALL. It is very funny how he completely ignores the kitty as she walks on past.

Yahoo! 2022- a new year and a new world of possibilities. A holiday that originally booked for September 2020, then changed to July 2021, then September 2021 was ACTUALLY going to happen for my little family! But, I didn’t believe it until we got on the plane. It was the first week of January we were booked to go to Cairns with a bunch of my family to celebrate 70th birthdays and 50th Wedding anniversary milestones. To make a plane trip and holiday go as smoothly as possible, I have learnt the hard way what I need to say and do. I need to make it VERY VERY clear that Luca is disabled. I need to call ahead to book in special assistance for Luca. To ensure- there will be a wheelchair that can take him to the gate. And another one to meet us on arrival. I need to ensure that we get on the plane first to attach his “Firefly” chair that goes on top of a normal plane seat- to ensure that he does not slide off and onto the floor. Most of all- I need to be ASSERTIVE – with staff and passengers alike- that this is what happens when my disabled son flies. I know what I’m doing.

30 Mins before the flight is ready to take off, I give Luca a sedative to help him sleep. I have a bag full of food, crackers, toys- all the stuff a parent would ordinarily pack for a toddler. I sit between Luca and my daughter on the flight. Luca’s dad is on the other side of the aisle. Once we’re in the sky, I feed Luca many crackers to help his ears from popping. He gets restless. I pick him up. He wants to crawl on the floor. He wants to crawl up the aisle. Nope. Back on me. Crawl up over my head. Scream. Cry. I give him more food. Scream. Cry. Give to dad. More food. Look at his favourite toy. Back to me. Cuddle on my lap.

“Is he falling asleep???” Nope. Scream. Crawl on head. Cry. More food. Sit on own seat for a bit. Slide onto floor. Crawl. Back to daddy. OK- you get the point….. That was 3 + hours worth. He doesn’t stare at a screen. Oh how I wish he would. He also doesn’t seem to fall asleep despite having a sedative. Get off the plane. Wheelchair on arrival- life is good. (Not looking forward to flight home).

Go to apartment. The apartment is perfect for our family. 2 bedrooms + sofa bed. Luca’s sister is so happy to get the sofa bed and the huge lounge room tv to herself. Luca has his own room. Luckily he is still tiny- and sleeps on his knees- so fits in a timber cot! I don’t have to worry about how to keep him safe while sleeping. The pool at the hotel is also PERFECT. It has a shallow end that Luca can crawl around in. I sat there while he safely crawled to and on me. Keeping cool in the 37 degree heat!! I was so happy that we were able to enjoy the water together. I didn’t have to hold him. He didn’t scream- he enjoyed the water WITH me. He splashed a lot. The pool was also shaded in the morning and afternoon. So there wasn’t that anxiety of his very fair skin turning red.

It was SO hot in Cairns. 37 degrees and ridiculous humidity. But, I was very thankful to be surrounded by my family who understand that it IS stressful doing things with Luca and getting out. His little body can’t self regulate his temp. We had a cool necktie thing that helped keep him cool. Any place we went had to be inside or cooled in some way. The time spent in a restaurant is always very limited with Luca. He is 7 now, and I still eat in a restaurant like he’s a newborn. On edge. Never know when he’s going to scream the house down protesting that he wants to leave. I’m very thankful that he enjoys chips now- so they usually tie him over- but if the service is slow- he’ll tell me about it. Again, being with family gave me that freedom of saying “I’m going to go back to hotel with Luca” and being able to relax with him. They get it- somewhat. I got to have a break from Luca too. My parents offered to take care of him while I did amazing things like swim after turtles with my daughter, brother and nephew- something not possible with Luca in tow. The holiday was absolutely magical and what I needed. Surrounded by those I love and have no judgement. I’m pretty sure Luca had a great time.

The holiday was perfect. The flight home was a fricken nightmare. I gave Luca some extra sedative to ensure he slept on the way home. It was afternoon- he always naps in the afternoon…..Spoiler alert: he did not sleep on the flight home. He screamed horrible, blood curdling screams for 2/3 hours of the flight. The trauma from that flight alone, has created a new rule that Luca does not fly more than 1.5 hours from Melbourne.

Moving right along…. Luca turned 7 on February 21st. We didn’t have a huge shindig for him. Very subdued. 7 years of lots of questions. 7 years of treading water- wondering what the future holds. We have a genetics appointment next month. Maybe something will come from that. Still undiagnosed- but living a pretty good life. Maybe this is his year to walk or talk…

Not long after his birthday Luca has returned to not being the best sleeper. Screaming at night. Screaming early morning. It is torture for the whole family. What is going on in his little brain. How can we help? What can we do? We ran lots of blood tests- and there was nothing to be seen. He has been on a waiting list to have an MRI on his gut area- but the list is still so backed up from all the MRIs put off due to Covid. There are kids out there with brain tumours who are waiting for MRIs- the backlog is so big. So, yeah- my feeling is that something is going on in Luca’s gut area… but who knows! I have absolutely no idea. So, Luca was given more sleeping meds to help him sleep…. which did somewhat.

Last week, my daughter came home from school with a sore throat. 2 days later she tested positive to Covid. As a super healthy, active child, she went down very hard. Sleeping 75% of the day away. If anyone knows me, they will know that I have been doing everything in my power to avoid bringing Covid home to Luca. I had declined face to face exercise classes, lunches and birthday parties- and said I wouldn’t go back to “normal living” until Luca was double vaxxed. Well, he got double vaxxed on the Friday and on the Monday tested positive to Covid. His normal temperature is usually 34 degrees. His temp got up to 38.4. He was pale. His breathing was off. His pulse was very erratic and pumping hard, out of his neck. So, I packed our bags and took him to hospital. My mind was thinking how bad it affected my daughter, what would it do to him. We spent the night there under watchful eyes of beautiful nurses and doctors. He was monitored and eventually after 16 hours we were sent home because he was doing better. I have no regrets about taking him in to hospital. I would not have slept well at home while he was in bed. I would be fearing the worst. I am so proud of his little body, that it was capable of dealing with Covid. And to think, 7 years ago, he was in ICU because of a UTI.

He is so strong. He is back at school now and I am still in isolation typing this. I am very thankful that Luca’s bus picks him up to take him to school. I am very thankful he is a healthy boy going to school.

We find ourselves in lockdown again, but instead of getting locked down with negative thoughts of things I can’t control, I have started thinking of how far Luca has come. At the end of the first term of 2021, I had an SSG call with Luca’s teachers. (An “SSG” is a Student Support Group call/meeting at a Special school. Similar to a parent teacher interview- except Luca has his teachers and therapists that are all involved. Together we discuss how he is going at school and we make a plan together of what we can do to help going further- truly wonderful). The teachers told me how settled Luca was now at school. They told me, “it was like he grew up over the holidays”. This makes me so happy, to know he is going to school and he is settled and not screaming for attention or being grumpy. He’s being a good settled, student.

Every day when he comes home from school, I open his communication folder that comes home with him. This is how I find out how his day was. His teachers let me know what they did in class and how Luca was. Its often the first question we ask our children after school “how was your day”… so its just as exciting for me to open up that folder and find out about how much walking he did at school in the schools walker. I think I’ve mentioned it before, that the walker Luca uses (Hart walker) is not able to used at the school due to OHS concerns, so I rely on the walkers at school to get him going…. well going he is! There have been times this year, where he has almost been the only child in class- so the teachers have given him extra walking time. One day, reading his communication book, I cried tears of joy. His teachers described Luca as “being a great little helper who walked to the office to deliver some paperwork”. Oh the visual. Oh the pride that my son is helping out his teachers. The walker he is using at school still has chest support, but is pretty simple for anyone to strap him into- less “intimidating” than his Hart walker…. so we’re trying to get one of these walkers for home, so that he can definitely do more walking. Oh and the teacher said the other day, once they had finished walking and were reading a story, Luca crawled back over to his walker- ready to go for another walk. I can’t stress enough how much I love Luca’s school.

Another mode of transport Luca has been choosing is a bike. Luca’s school corridors are nice and wide to make sure there is room for wheelchairs and the bikes. Imagine cruising your school hallways on your bike and sick stack hat! I’m not sure how much he loves it, but he’s doing it. Just before this current lock down, Luca was able to get back to RDA (Riding for the Disabled). Last year, he was barely able to last 10 minutes on the horse without whinging. This year, he sat on Charlie (the horse) for a full 20 mins. No whinging except when Charlie stopped moving- Luca likes to be on the move! Its a huge improvement- and great for me to be able to enjoy watching him, with pride, as he goes around on a horse.

Luca has always been a quiet one. I’ve always focussed on trying to get him to walk. I’m ok if he is non verbal- his sister does enough talking for the both of them. Since January, Luca has started “saying” “di-di”- now of course, his dad is claiming it as Daddy… But who knows, all I know is that it is a happy sound. One that we all repeat with laughter when it pops out. Sometimes if he says “didi” when eating, I’ll wear some of his food that he spits out. Speaking of food, he’s able to feed himself finger food. He is able to feed himself with a spoon- but still not 100% great with scooping up the food himself. In the past he would yell or scream when he was ready for more food- but these days, he quietly grabs hold of my arm and squeezes- the same way your parents did to tell you to behave- without using words. He drinks from a sippy cup with handles. We still have to hold the cup for him, or otherwise he will cheekily grab it and throw it on the floor- like a cheeky toddler would.

The biggest improvement/progress for Luca and our family has been, having a carer FINALLY in our home. Every Saturday morning, for 3 hours, Luca has his carer play with him, take him for walks, read books, do art, do physio and speechy exercises with him. Now this isn’t just any ol’ carer- this was Luca’s aide from when he was at kinder. The love and respect they have for one another is intense. The moment his carer came to our door, after a 13 month absence- Luca’s face was filled with joy. The 3 hours she spends with Luca, is not only beneficial to Luca but also a gift to Luca’s dad, sister and I, who spend that 3 hours together going for a walk, bike ride, movie or cafe. Its brilliant.

Luca has never been as happy as he is now. His sister has always been able to make him laugh, but recently he’s been so eager to laugh with everyone. I stare deep into Luca’s eyes and really breathe all of him in. He is such a unique little person. He is well loved and he adores me and those around him. I have stopped mourning the boy that I may lose in the future. I have really started enjoying him for the boy he is now. Sadly, just over 3 months ago one of Luca’s little friends died. I still can’t believe he is gone. They had so many similarities. In the middle of most nights recently, Luca wakes up. He is up for an hour or more at a time. He is not crying or upset. He is screaming with laughter, cackling, giggling, chuckling and just so happy. I truly believe that his little mate is with him and they are having fun together. I never disrupt Luca or try and get him back to sleep, I just let him have his “playdate” until he puts himself back to sleep.

Sending all the love to those doing it tough. Try focus on the now or the good things that have been achieved.

Luca turned 6 on 21st February. We just had his first genetics appointment in 3 years.

Results have come back- still can not find a diagnosis. Whole genome, whole exome, RNA tests all lead to nothing. I am gutted. I am exhausted. I have never craved for a label in all my life. Just something.

This lockdown thing in Melbourne is HARD. Hard for everyone. No matter how easy someone’s life may seem – this is hard. We’re currently in our second lockdown- stage 4. We’re allowed out of our houses for 1 hour a day. I choose to exercise in my garage- mask  free- for an hour, so I may then spend my hour outside my house with my children.

24 hours a day with children is hard! The one thing that has made it “easy” is seeing the absolute love and bond that has occurred between my daughter and Luca. She is absolutely besotted by him. I listen in on her class Zoom calls and there is not one day that goes past that she doesn’t talk about her brother. She often mentions that he has disabilities and/or is sick. Sometimes I think “tone it down a little”…. but most of the time I think, that it’s great that she’s SO proud of him and wants to tell her friends all about him. She is not ashamed or embarrassed of her brother. It also exposes children  to words like “disabilities” and “additional needs” etc so they can ask further questions.

In the current COVID-19 climate, I jumped through a few hoops to allow me to have Luca at school two days a week, so that I may actually get some work done. My weekdays start at 4:30am- so I can try get some work in before kids wake.  It’s near impossible to homeschool one child and work, let alone a second child and one that does not understand or care about Zoom meetings or school work. The moment Luca wakes in the morning, she tries to make him laugh. This is their HUGE connection. She makes him laugh so hard, I’m sure it hurts his belly. On the days that Luca goes to school, his sister is very sad to see him go. She loves seeing him in his school uniform. When he comes home, crawls through the door- his sister is there again ready to make him laugh again. And then after dinner, when there is no more food left in his bowl, my daughter will crouch down and scream “BOO!” and there he goes, my little man, in absolute hysterics. We’ll move from the dinner table, to the couch and, it’s there, that for the next 30 minutes, she will crawl all about the room, hiding and jumping and screaming to the delighted 5.5 year old boy who is squealing, excited and amazed. Bopping up and down on his knees. He always laughs and reacts as if he has never seen this before. Absolute JOY every.single.night. “Groundhog Day” of happiness.

One morning, recently, Luca didn’t laugh at his sister. He also refused to eat- which is a big alarm bell for me, as he’s always been happy to eat anything that goes near his mouth (including Grandma’s finger!). He’d had a cold for a few weeks, (which we got tested for- negative for COVID). He was starting to do these weird shakes things and facial expressions were a bit off- so I emailed his paediatrician. I really DID NOT want to go to hospital in current climate. His amazing paediatrician told me to go to ED “just to be on the safe side”. Just days before, I had bragged to someone about Luca not being in hospital for almost 2 years. I DID NOT TOUCH WOOD.

History has taught me, if going to ED with Luca, pack an overnight bag- just in case. So, I packed our bags, drove to RCH and was greeted by staff in PPE, taking my temperature, giving me a disposable mask and providing hand sanitiser. The waiting area was empty. We went straight through to triage. Luca’s temperature was 33 degrees. He was super cold. We went through to the resuss area, where they tried to keep him warm with blankets, while many blood tests were taken. One of the blood test showed that he had high pancreas levels. They should be under 160. Luca’s were over 25,000. Super high. Inredibly high. The doctors could not find the reason for it. The first night there were so many beeps all night. The Drs asked me confronting questions about how far did I want them to intervene if Luca’s body started to crash…. WTF?! I casually walked into ED thinking it may be a chest infection, now I’m considering his end of life (again). They fed him by IV drip to give his pancreas a rest from digesting solids. We were there for 4 nights. For those 4 nights, 5 days, the ward was very quiet. The nurses insisted on changing his nappies. So- if Luca was fed via IV, had nappies changed and was chilling in bed with his toys and watching tv….. this could almost count as a holiday for this mama during lockdown! Almost.

My daughter was very sad that her brother was in hospital (although, felt better once she received a toy when he got back!). She acknowledged that if/when her brother dies, she at least spent the most amount of time with him this year. Before this year, it was easy for her to ignore her brother. He doesn’t talk, or steal her toys, or throw things at her, or eat her food or challenge her tv show choices. She is so heavily engaged with him now. Seeing them hang out on the couch together- is such a simple, small thing- but absolutely makes my heart explode with love. I didn’t think the bond could happen. But it has and continues to do so.

Lockdown is hard. It can make or break relationships. I’m thankful that the relationship between my kids has been made. Unbreakable bond.

Stay strong Melbourne/Victoria.

 

What a world we’re living in at the moment- all of us. I’ve been meaning to update this blog for many months- but there’s never been a good time to sit down and write… and here we are- all of us, together at home.

A whole new world started for us on Tuesday 4th February, where my son, Luca STARTED SCHOOL.  Surprisingly, there were no tears that day. I expected to. Perhaps its the fact that (luckily) Luca is happy to go to anyone… he does not cling to me or only want me. (I don’t take offence to that!) So, we dropped him off that morning, saw his other 5 class mates (thats right -6 in a class!) and said goodbye. In the afternoon his allocated school bus dropped him home. From day 2 his bus collects him from home at 7:40am and delivers him home 4:45pm (parents of kids with disabilities need all the perks they can get!) Its a very long day for a little boy- but he is so happy! The bus driver and attendant on the bus give him so much love. And of course all the teachers and therapists at school also adore him.

When Luca gets home, I run him a bath and get him to tell me all about his day. Oh wait… he can’t talk! So, luckily there is a communication book that comes home that his teacher fills out everyday. I read about him “walking” and being very “chatty”. Not bad for a kid that can’t walk or talk. This walking and talking business comes up again at “Student Support Group” meeting which is equivalent to a parent-teacher interview. Apparently Luca has been “very loud in class and always has something to say” (makes lots of noises vocally) so the teacher has been encouraging him to raise his hand if he has “something to say”! LOL! In regards to walking, they have a walker at school. At one stage the teachers were talking, the next, Luca and his class mate had walked straight past them and into the courtyard! Luca plotting an escape…. just casually walking out the door. LOL!!

This communication book, I read every night. It gives me a glimpse of my boy who wasn’t meant to make it past 2 years old, who is now a school boy. Is he being cheeky with the teachers? Is he learning new skills? Is he making friends? Is he living his best life? Going by this communication book, I’d say YES. Luca IS living his best life. He is happy.

There are so many layers of trust when I put Luca on that bus to go to school. I trust he’s secure and safe on the bus. I trust that he gets to school and into class safely. I trust he is not in any danger at school. I trust his teachers, therapists and fellow students to respect and make Luca happy during his time at school. When you have a child that can not talk or walk- you have to trust the people around him. You have to trust your instincts and you have to trust Luca’s moods. My boy is happy and sleeping well. He IS safe and healthy.

Term 1 is done now. His school shut one day earlier than other Victorian schools, with a staff member being suspected  of having COVID-19.  DHHS don’t believe there were any close contacts at the school- so the kids should all be OK. I’m still watching Luca like a hawk- because he does have a compromised immune system and could prove fatal if he did get COVID-19.

I’ve looked back at photos recently. Ones where I have fear in my eyes that any day could be Luca’s last. That horrible future ahead of me. With the current COVID-19 outbreak, people not being able to control certain parts of their lives, I’m seeing that same fear in a lot of peoples eyes. That unknown- yet horrible future. Its taken me many years to do it…. but you just have to try and live for now. Today. Take every day as it comes. Stay at home. Love your family (and friends online!).

*NB We still don’t have a diagnosis or any real answers to Luca’s condition. All research results came back negative to all the known genetic conditions. It has been 4.5 years since we first started searching for answers.