The Stars Still Shine

Felix and his doll (who also has Down syndrome)

I'm still not feeling able to write that much after the sadness of this week. I have tried to write another blog but my mind is a bit jumbled and all over the place but, I did think of one really beautiful little moment with Felix, yesterday, that I would like to share.

It was that time of night when, after a day at work, you look in the fridge and think, "What can I cook for dinner?" The uninspiring contents of my fridge stared back at me so, I decided to bundle Felix up into the car, and go to the supermarket for more inspiration. It was still daylight when we arrived at the shop.

"Wearing" the little guy

Felix, as per usual, made a short trip to the shop slightly longer than necessary. In the trolley. Out of the trolley. Running up the aisle. Choosing things from the shelf and putting them in the trolley. Me, placing said items back on the shelf. Helping to put the shopping on to the check out. Finding the ride on car and sitting in it. Wanting to unlock the car himself. Escaping my clutches and climbing over the seat into the front. Me, wrestling him back into his car seat and strapping him in. You get the picture? Lucky he's cute!

Climbing a tree before school this morning

When we got home, it was dark. I was tired and in a hurry to make dinner and get it over with. Felix, being the chilled out little guy that he is, wasn't in a rush at all. He got out of the car, gazed at the sky and said, "Sun all gone!" I stopped, realising this was one of those moments when Felix was reminding me to slow down, and replied, "Yes Felix. The sun has gone to sleep now. Can you see the moon?" We both stood on the front lawn looking up but couldn't find the moon. Felix pointed and said, "Stars!" I nodded and mumbled something about there being lots of stars, and started to move towards the house with my shopping bags. When I got to the front porch I turned around and saw that Felix hadn't moved. He was still craning his neck; his face looking up to the sky.

The next moment was so beautiful. He started to sing Twinkle, Twinkle Little Star. He didn't look at me. He kept his eyes on the stars. The most special bit for me was that he spoke the words in the song more clearly than ever before, and didn't stop gazing up until the whole song was finished. It melted my heart to watch him and, all the stress I was feeling up until that point, disappeared. As usual, the little guy worked his magic and filled my heart. He always knows just what I need!

Fly High Little One

The newest little star in the sky!

In my last blog, I posted about how fragile our little ones, with Down syndrome, can be. Sadly, only a few days later, on May 2, heaven gained another angel. Little Nicholas was 4 years old. He was full of life, full of energy, and so unbelievably loved by his family, and everyone who knew him. The Down syndrome community, here in Australia,  is a tight knit one and, I was blessed to become friends with Nicholas's Mum several years ago, through Facebook, and have followed her beautifully written blog for a very long time http://mumma-love.com/. I have enjoyed watching Nicholas grow and learn, through photos, and have loved reading his Mum's warm, heartfelt stories of the family she loves so much. Only three weeks ago, I told her to enjoy the extra cuddles she was getting while Nicholas was unwell. No-one would have guessed just how sick he actually was. Now we, as a community, are united in our grief for his family, but our grief doesn't even come close to what his family are going through right now. Fly high little man x x x

I have felt so many mixed emotions this week. I have felt so much sadness and cried many tears. I have felt angry that a precious little man was taken from such a beautiful family. I have felt joy as I've watched Felix play, and I've laughed at the funny things he's said and done. I've also been frightened about his health. To be honest, I have been terrified about it. Nicholas, like Felix, had always been really healthy. None of us are promised a tomorrow, so it's another reminder to live each day fully and love deeply.  More than anything this week, I have held Felix tighter than I have in a very long time.

Nicholas's rainbow

Yesterday, as I was driving home from work, I saw a huge rainbow in the sky. The longer I drove, the bigger it got until I could see the whole arc from one side to the other. I stopped the car several times to take photos of it. Some of you might remember my rainbow story. After we were told, at the hospital, that Felix probably wouldn't survive, and was likely to pass away in the womb from issues with his brain, we saw a rainbow on the way home that day. Every fortnight, after that, as we drove 200km to the hospital for appointments, we saw another one. Seeing the rainbow brought me a peace that Felix was going to be OK. Ever since then, a rainbow makes me think of Felix. After a radio interview I did, a few years back, they played the song "Somewhere Over the Rainbow". When Felix graduated from kindy last year, what song came on as his face appeared on the power point presentation? Yep...."Somewhere Over the Rainbow".

Yesterday, when I saw the rainbow my thoughts went straight to Nicholas. When I saw that enormous, colourful arc, bursting through the clouds, I could see his sweet little face in my mind; his bright blue eyes and the blondest hair you've ever seen. It was just like he was reminding us that he's still around. I cried as I drove; tears for his family, tears for the unfairness that his body is no longer here, but thankful for the reminder that he lives on in our hearts. Sleep sweetly Nicholas x

Gastroenterology

Road trip to the hospital

We have been so lucky with Felix's health and not a day goes by when I don't think about how thankful I am that he doesn't have a lot of the medical issues often associated with Down syndrome. Fifty percent of babies with Down syndrome are born with a heart condition. Many have respiratory or bowel issues to varying degrees. Hearing and vision can be affected, there is a higher risk of leukemia, and other medical conditions too numerous to mention. That pesky extra chromosome is responsible for wreaking havoc in the precious bodies of our loved ones. That being said, with modern medicine, supplementation programs and early intervention, the life expectancy of a person with Down syndrome is now 65 years old! Only 30 years ago life expectancy was less than 30 years old. Amazing hey?

Felix only has two ongoing health issues. Croup, which likes to rear it's ugly head in winter, and some bowel issues which we're still trying to get on top of. I don't usually go into a lot of detail about his medical issues, but I've had so many people asking how things went at the Gastroenterologist and Dietician yesterday that I thought it was easiest just to blog about it. Poo story to follow......

That face <3

Felix's diet has a very delicate balance. As mentioned before, he has malabsorption of all of his sugars, including natural sugars in fruit and vegetables, and the lactose in dairy products. He also has a bacterial overgrowth in his bowel that has been treated a couple of times, but doesn't seem to go away. If he eats any sugar, the result is an overactive bowel which, without too much gory detail, means he spends a lot of time in the bath, sometimes several times a day. He also has a gluten intolerance. If he eats gluten; bread, pasta etc, it has the opposite effect and he gets completely blocked up. Last year, he was so blocked up, he didn't use his bowel for 8 days. He had foecal breath and wasn't responding to even large doses of laxatives. He was incredibly distressed and in a lot of pain. It was a horrible time.

Writing some words in the
waiting room

For the past twelve months, we have worked out how to keep his diet very simple and, as a result, his bowel has been somewhat normal (at least compared to how it was before). The problem is that, due to very limited fruit and vegetables; the only fruit he could have was lemons, limes and avocado, and his vegetables were limited to white potato and a couple of other things which weren't terribly appetising to a little person. As you can imagine, we weren't able to get him to each much of any of those things. Thank goodness for multivitamins!!


Yesterday we went to see the Gastroenterologist first. He explained that, as we suspected, we still hadn't given Felix enough gluten for them to get an accurate result on the coeliac blood test. He has suggested Felix eat gluten regularly for the next 4 months and then have another blood test. Alarm bells went off immediately in my head because I know what happens when Felix eats gluten and I don't want him to be uncomfortable and/or in pain for the next 4 months. He suggested that we give Felix daily laxatives to counteract the gluten. He said that, depending on the next lot of blood results, Felix may have to have an endoscopy and biopsy of his bowel under general anaesthetic to find out exactly what's going on. I know it's not a massive surgery compared to what a lot of parents see their kids go through but, he's already had about 6 generals since he was born, so I'm not in a rush to put him under again. It never gets easier and there are risks involved with any surgery. Sigh!

Strapped in for the 200km drive

Our second appointment was with the Dietician. The good news is that she wants us to introduce a few more things back into Felix's diet; cucumber, carrot, zucchini, mushroom and spinach. She even said he could try pureed apple if I added glucose (glucose counteracts the effect of the fructose...this bowel thing is like a science!) She has given me a chart and said that I can play around with the fruits and vegetables with the lowest fructose levels and see how we go. It is going to make cooking so much easier! She is a little concerned about the addition of the gluten to his diet and advised me to call the hospital if I'm worried about his bowel at any time.

I know a lot of parents will agree that, when you see a whole bunch of different specialists, it can be really confusing. They won't always be on the same page and you often need to get second opinions or just trust your own instincts. Special needs parenting is a complex business. You tend to become an expert on your own child's medical issues. You spend hours researching, making phone calls, sitting in waiting rooms and advocating on behalf of your child. It can be exhausting, but is also incredibly rewarding when you see your hard work pay off. The next few months are going to be challenging but, one step in front of the other, right?

*Special mention to those who have messaged to check on the little guy... your messages always warm my heart!

Fears Put To Rest

Such an outdoor boy

I know I raved about Felix's talking in my last blog but, wow, his speech seems to be improving by the day. He has spoken some words so clearly today; absolutely perfectly! He is attempting to construct more and more sentences and, although I don't always understand him yet, I'm excited that he's trying. We're getting there one step at a time.

A friend of mine shared something on Facebook today about how fantastic it was to watch her little boy (the same age as Felix and also rocking an extra chromosome), play on a local playground and interact with other kids there. She mentioned that it was one of the things she didn't think she would get to experience, when she was given his diagnosis at birth, and yet here he was doing the same as all the other kids. It struck a chord with me because I was thinking the exact same thing yesterday. I was waiting at a playground, for a friend to arrive, so Felix raced straight onto the playground to play with the other kids. Watching him climb quite difficult parts of the playground, race up ladders and run across bridges, it was just like watching any other child his age. I didn't have to get up and rescue him. In fact, I didn't have to help him with anything. He was a five year old boy, doing what 5 year old boys do. The other kids talked to him, took turns with him and pushed him down the slide and he did the same with them.

There's nothing he won't climb

Like my friend, I had so many concerns after Felix's diagnosis. My brain raced ahead, not weeks, but months and years. Would he talk? Where would he go to school? Was he going to be teased by other kids? Where was he going to live as an adult? Will he always live at home? What will happen to him when I'm not around any more? I had to snap myself out of it really quickly and decide that I was going to take one day at a time, and not get ahead of myself. With each little milestone he reached, I celebrated and the future looked brighter. Yes, sometimes those milestones were months later than typical children; he didn't walk until 22 months old, he struggles to drink from a regular cup, and he's still not toilet trained. Yet others were even earlier than his typical peers; he rolled from his tummy to his back consistently from 2 weeks old. He signed "butterfly" at 8 months old and had many signs by a year old (not many typical kids "talk" that early). He started to read before he turned 3 years old! Felix, as we have discovered, does things at his own pace; sometimes that pace is really fast, and other times it's pretty chilled out which can be kind of nice!

Felix and his 'little' mate

I worried, just like my friend, that Felix would be the kid at the playground who no-one wanted to play with. I pictured him being pushed around and called names until he cried. With the prognosis we were given, due to the Down syndrome/Hydrocephalus diagnosis, I couldn't even picture him walking, let alone climbing up the slide the wrong way! How naive I was! At this point in his life, Felix is surrounded by friends who want to play with him. He is invited to parties, and kids run up to him at the shop to give him a high 5 or beep him on the nose. Is it always going to be like this? Possibly not. As kids grow, their values change and some, unfortunately, lose their inclusive natures. I'm sure there will be times when Felix is teased or excluded. For now I choose to be thankful for the positive experiences we are having, and to proudly watch Felix smash stereotypes every single day and do things I never thought possible.

My heart!

I'm not saying I'll never worry, or I won't sometimes get ahead of myself. I'm a Mum. It goes without saying that I will worry about my kids. I'm just going to try my hardest not to worry any more about Felix than I do about my other kids. I believe Felix will be able to do anything he sets his mind to. I can't wait to see him working in a job he enjoys, watching movies with his friends, and bringing home someone he's fallen in love with. I'm even looking forward to the day he steals a sneaky beer from the fridge. For now, though, I'll enjoy my bouncy little boy who just looked at me through his mop of long hair and said, "You're so funny Mum!" Love that kid!

Supplements

Grabbing a quick coffee before our big drive

Not only have we been camping in the last week, but I have driven over 1000km, visiting family and dropping kids off here and there. Felix has endured it all without a complaint and, apart from losing him briefly in the shopping centre (story to follow), it has been relatively uneventful!

Firstly, for something really exciting! We have started Felix on a new supplement (resveratrol; for those walking the same path as us), and have noticed that his speech has significantly jumped in this past week. It may be complete coincidence (I'm always a little hesitant to give the full credit to a supplement) but, his speech is much clearer and he has put five or six words together on several occasions. Yesterday, driving home from the city, he said to me, "Mum, help. Ipad not working." Aaron was with me and he checked and found that the app had frozen, so he was able to fix it for him. Prior to this, Felix would have just dropped it onto the floor of the car, or yelled out, "Mum, mum", and I would have had to guess what was wrong. Today, he said, "Dad, ABC, come on, let's go!" Felix wanted one of his puzzles out of the cupboard, and wanted Dad to hurry up and get it for him. Increased speech means he can make his demands known, and I'm celebrating his new bossiness!!  I had heard other parents say their kids also had a burst of speech when they started on this particular supplement, so I'm really pleased to see that Felix is reacting positively to it so far.

Helping cook his breakfast

Supplements can be a bit of a contentious issue within the Down syndrome community. As with everything, there are people at complete opposite ends of the spectrum when it comes to what supplements/dietary requirements etc to give their children with Down syndrome. Some have completely organic diets and/or supplement heavily, and others don't do anything differently than they would with their other typical children. There is no wrong or right way! I'm a big believer in doing my own research, listening to the opinions/advice of others but, ultimately, making up my own mind and deciding what I think is best for Felix. I have probably landed somewhere in the middle (and have lovely parent friends at both ends). Felix has a daily regime of supplements sneakily hidden in his food. If they taste awful (some of them smell gross), he doesn't complain about it. Some days I feel a bit like a chemist, mixing up his concoctions and, when we go away, I have to put careful thought into making sure I have everything measured out, enough to last until we're home again. It's a bit of a tedious process sometimes but, I really believe we have seen positive results. If anyone wants to contact me about supplements (my opinion only), feel free to email me!!

I made a hammock with a sheet today. He loved hanging around!

Now....about Felix getting lost.....
Yesterday, Felix, Aaron, and I caught up with some family members and friends. We had lunch together at a local shopping centre and then headed off to have a look around. Felix had been so good with all the travelling, and being dragged around, that I told him he could have a look at the toys in the shop. He headed off to the toy aisles with his oldest brother, Daniel (26) and Aaron (16). It was a bit of a "melt my Mummy heart" moment when I found all three of them engrossed at looking at Lego together.  After promising Daniel that yes, I would buy him Lego for Christmas (yes....my 26 year old), he left to go home. I asked Aaron to watch Felix for a minute or two so I could look at something a few aisles over. About 30 seconds passed, and Aaron came up to me with a panicked look on his face. I knew straight away that he had lost Felix. He had only taken his eyes off him for a second, but he is so fast. I tried not to panic, and calmly walked up and down the rest of the toy aisles looking for him, as did Aaron and a friend of mine. None of us could find him. A couple of minutes passed and I was starting to get a bit worried, when I saw Aaron with a big smile on his face. He called me over and, there was Felix. He had climbed onto a shelf and curled up behind a large toy box and looked like he was asleep. Aaron had remembered Felix's love for climbing things and had gone back to check in the exact spot he had "lost" him. Sure enough, he was in the same place...just hidden! My heart took about an hour to slow back to regular pace, and Felix was promptly strapped back into his pram....enough adventures for that day!!

Sneaky pic of my beautiful Granddaughter, Luna. Felix loved
cuddling her too!

I could write a lot tonight. Felix has had lots of fun times with family over the past couple of days. However, it's ANZAC day here in Australia tomorrow, and I'm looking forward to going to the dawn service bright and early in the morning so I better stop writing and get some sleep. See you back here with more Felix adventures soon!

Camping Therapy

Bubbles!

It's school holidays here right now, so I decided it would be nice for us to go camping with some of Felix's older siblings. We're really lucky to live ten minutes away from a forest in a national park, which is absolutely beautiful and, once there, you feel like you are in the middle of nowhere. Usually we would go further away but we had too many people to fit into our car so needed to do a few trips. The forest was the perfect solution!

Felix has been camping before and really enjoys it. I think there is something magical to a 5 year old about playing out in the open, digging in the dirt, poking things with sticks and being able to pee on a tree. There's something fun about getting back to nature. Personally, I love it too (although a lot of my friends weren't as excited as I was about the long drop toilet and won't be camping with me any time soon).

A boy and his dog

On this trip, we were happy to have Felix's nephew (our handsome Grandson, Noah), join us again. Felix and Noah are only a year and a half apart in age and get along really well. It was nice that they had each other to play with. We went for a big walk to try and spot some kangaroos and found a few, although we found a lot more roo poo than we did actual kangaroos. There were reminders on the ground that there had been some deer close by too, but we didn't see any during the day. The boys enjoyed listening to the kookaburras in the trees, and looking for bugs and insects in the wood pile. Our puppy spent one of the days out at the campsite with us, so Felix and Noah got lots of exercise playing with her too.

A bit of bush painting

Due to Felix's hypotonia, he tends to tire very easily. This is something we constantly work on with therapies and, although he is a lot stronger now, he still has a long way to go to have the stamina of his peers. Camping was a fun type of therapy for him. He did lots of walking up and down hills, he helped carry things when it was time to unpack, and he ran with the puppy. Unfortunately, when he gets physically worn out, he can tend to become a bit clumsy and trip over things; a sure sign that he needs a rest. One night, he tripped and smashed his mouth against a wooden bench. His teeth bit his tongue and his top lip and there was blood everywhere. He cried for a minute but calmed down quickly so I could inspect his mouth and clean it up. Thankfully, his teeth were all still intact and, by morning, he had a slightly puffy lip, but he was fine. What's camping without at least one injury, right?

Noah and Felix

Felix is a perfect sleeper.....IN HIS OWN BED. If he is away from home and we're staying with friends, in a hotel, or anywhere where he doesn't have his own room, he sleeps terribly which means I do too! The first night camping, he was overtired and very unsettled. I lay down next to him and, between midnight and 2am, endured little whispers saying, "Mum, wake up! Mum open eyes!" He also spent time stroking my face and whispering, "Aaaaaah." He then pointed out my eyes, nose, cheeks, chin, lips etc. Just the education I needed in the middle of the night while laying half on, half off a tiny mattress. Sleeping next to Felix is not for the faint hearted. The kid does not lay still for more than a couple of minutes at a time. He kicks and thrashes and, if you're lucky, you might even get a ninja kick to the face! I managed to get a total of two hours of sleep that night, so felt slightly haggard while cooking bacon and eggs in the morning. Felix, however, was at full speed like he had slept deeply all night. Incredible!

Love!

I took a lot of photos while we were camping and, one of my favourites was of Felix sniffing a tiny little flower he found on the ground. I know I talk about it all the time, but I love how Felix makes me stop and look at the things I would normally miss in the busyness of life. He always points out the moon when it is still in the sky during the day time. He hears a plane flying way before I have heard it. He notices little bugs crawling on the ground and squats down to have a look. He works to his own time frame and I have learnt (for the most part) to let him set the pace. Patience really is a virtue, and it is something Felix teaches me every single day.

Party...Take Two

A selfie from yesterday. Nothing like getting our sillies on!

Yesterday was party, take two!! I got the date right this time, although we still had an issue with his costume. A friend kindly bought a Superman costume for Felix this past week; a size 3-5 because he's so small. Perfect right? No. The costume was so big for Felix, you couldn't see his hands or his feet. I roughly hemmed up the sleeves about 4 inches and the legs about 8 inches, and it looked about right...hahaha! I think I'm going to get good at sewing hems with his short little limbs!

Felix had a great time at his party. He enjoyed playing with his friends, and spending lots of time on the playground. He had a few swings at the pinata, and he loved singing happy birthday. I prepared him a (boring for me, but fun for him) plate of party food. A sugar, gluten and lactose free cupcake, a gluten free bread roll with some nutalex and gluten free vegemite, a sugar and lactose free chocolate, a banana, and some gluten free chips. It didn't look particularly appetising, but he thought it was great!

Gosh...he was so tiny!

Today Felix has done lots of reading and writing (his choice; strange kid!) The latest thing he likes to do is go through the alphabet and say something which begins with each letter. He says, "A is for apple, B is for ball...." etc. It's interesting that he changes up the words he says each time, which is a great way to see, not only how much his recognition of first sounds has grown, but also his vocabulary. I never get tired of watching him learn, and get so excited with every new word I hear him speak. He's come such a long way with his speech in the past couple of years.

One of his very first friend's parties.

Another one of Felix's big brothers is staying with us for a few days. He arrived today, with his girlfriend, and we are heading off to go camping tomorrow. Felix loves having his older siblings here to visit. He talks about them all the time when they're not here, so he is so happy when he gets to spend time with them. This afternoon we went out for a walk, with the older kids being dragged along by the three dogs, and Felix in the carrier on my back again. When we got out to the scrub, Felix got off my back and ran with the dogs. His coordination is improving so much, and he is able to run a lot further without getting as tired as he used to. He does a lot of shouting out, "Sit, stay, good boy!" It's pretty cute!

This week I've spent a bit of time looking back at old photos of me and Felix. I love reminiscing and enjoying all the old photos over and over again. Now that he's older, and very technologically savvy, he enjoys taking selfies, so we've taken a lot of fun ones recently. I hope you don't mind me being all sentimental and sharing some old ones with you!

Superpowers

Monday night was a "Come and Try" gymnastics session for little ones at the local gym. I took Felix, knowing that he loves to be active and enjoys being with his friends. I've been looking at getting him into some kind of sport but, because he's so tiny, I haven't been too keen on sending him out to play soccer or football because he'd probably get knocked over and I really don't want to see him get hurt. When I heard about gymnastics, I thought that would be perfect for him; something he could do at his own pace, and use his bendy, hypotonic little body. I think he has natural ability with balance and flexibility. I was pretty excited!

Felix had a great time. He loved the beam, and the coach commented on how well he could balance. He "jumped" on the trampoline. Felix's jumping looks a bit like Igglepiggle from In the Night Garden. He lifts one foot off the ground as he enthusiastically throws his arms into the air. We've got a bit of a way to go before he gets both feet off the ground, but it's pretty adorable to watch him try. He enjoyed the warm up session of running races and stretches and even shocked me with how far he could stretch out his legs; almost the full splits. Pretty impressive.

For me, it was really hard work. Felix is still working on concentrating for a full day at school so, to have to concentrate for an extra two hours after school, was a bit much for him. There were a lot of kids who came out to try the gymnastics, so they had to line up for quite a while and wait their turn. Felix did his best to try and jump the queue, and I did my best chasing him and bringing him back to stand in the line. It's times like these that I realise how much younger Felix is, in development, compared to other kids his age. I'm totally OK with that, but it made me realise that he's not quite ready to join gymnastics on a regular basis yet. I think we'll give it another try next year. Hopefully I can find something a bit less structured for him to do in the meantime.

Some extra musings for today....

My Superman

One thing I wanted to mention about Felix, is his intuition. Felix has this amazing way of knowing how people are feeling. I have heard many other parents, of kids with Down syndrome, say the same thing.  He exudes happiness and revels in the joy other people are feeling but, when people are down, he knows exactly what to do to bring them comfort. I've been a bit flat and unwell this week and Felix has been my little rock. He has known when to come and snuggle up to me, or ask me for a kiss. He has hugged me tighter, and spent longer sitting next to me, cuddling up against me (which is no mean feat for someone who is usually a complete wriggle bum!)  I've heard some people say it's an almost supernatural awareness. I wouldn't go that far, but I do credit that extra chromosome for some extra insightfulness that a lot of us "typical" people don't have. I'm thankful for his sensitivity and, when all else fails, he's sure to bring a smile to my face.

Batman (Well Kind Of)

You're making me wear this?

Our party at the park

It was a wacky kind of a start to the day today. Old age must be getting to me because, my usually very organised brain, was kind of scrambled this morning. I looked at the calendar to see that Felix had a birthday party to go to. That was OK because I had bought a present already. However, on closer inspection of the invitation, it said Felix had to come dressed as a superhero. My heart sunk....I don't tend to buy "character" type clothes or costumes, and Felix hasn't shown the slightest bit of interest in them either. I raced to his bedroom drawers and "Bingo", found a Batman tshirt his Granny had bought him for Christmas.  Next stop, the craft cupboard. I pulled out the hot glue gun and some velcro, a pillowcase and some yellow material and threw together something that really didn't evoke Batman at all but, hey, I tried right? A pair of black jocks over his track pant completed the look (Hahaha!) A friend offered a Batman mask for Felix to borrow...I just had to pick it up from her house. Perfect!

I made Felix some party food (his restricted diet is a nightmare at parties). I defrosted some of his cupcakes and iced them with sugar free icing, and raced out the door to pick up the Batman mask. I drove past the park where the party was going to be held and there wasn't anyone there yet. I called Felix's Dad to get him to check the invitation....yep the 10th of April. They must be running late. I picked up the mask and drove back up to the park. Still noone. I phoned him back again to double check the invitation. It was the RSVP date that was the 10th. The party isn't until next weekend!!! Sigh! Oh well....at least I can work on improving on his costume in the meantime!!

By this stage, Felix could see the playground and really wanted to get out of the car to play. It was such perfect weather so I decided that Felix and I would hang out there for a while anyway. He had a great time on the swings...."High Mum, high!" When my arms couldn't take it any longer he went and played on the slide, and climbed everything he possibly could. It would have been nice to have some company, and some friends for Felix to play with, but we had a fun morning together despite the frantic start.

This afternoon, I decided to take Felix for a walk to try out a toddler carrier a friend had loaned me. He loved it!! We (or should I say I) walked about 3.5km, stopping so he could reach up and pick leaves off the trees or sniff the flowers growing there. He enjoyed being up high so he could see things better. He gets a bit bored in the pram and usually wants to climb in and out, but the carrier worked much better. He was happy just to sit and watch the world go by, chatting in my ear the whole time. He got out for a little run when I let the dog off her lead. They chased each other until Felix was worn out and happy to climb onto my back again. I'm thinking I might have to save up and buy one of my own now. It sure beats taking the pram everywhere!

Since having Felix, lots of days haven't quite ended up as expected, due to health issues, sensory issues, or just the fact that Felix likes to take his time. We've become experts at going with the flow, and whereas once I would have got annoyed when things didn't go to plan, I've learnt to roll with it and make the best out of situations when they change. Felix and I ended up having a great day today. We are both sunkissed and worn out. We'll sleep well tonight...a perfect end to the weekend!

Communicating Pain

Although Felix's speech has come along really well, he still has a long way to go before he can communicate enough to express his thoughts and his feelings. I often see him frustrated with me because he's trying to tell me something, but I'm not understanding him. One of the hardest things, as a parent, is that he can't tell me when he's feeling sick or if he's hurt himself. If I see that his toe is bleeding or he has a graze on his leg, there is no way for me to know what he has done.

I know a lot of parents of kids with Down syndrome will agree with me when I say that our kids have an incredibly high pain threshold. Some people say it's because of their low muscle tone, and others say it's a sensory thing. Who really knows? The problem with a high pain threshold is that people with Down syndrome can hurt themselves, or have a significant medical issue but, because they don't appear to be in pain and may not communicate it, serious injuries and illnesses can go unnoticed for longer than they should.

After five minutes

Both the speech issues and the high pain tolerance were an issue here yesterday. Felix was grizzly most of the morning; not crying, just generally upset and sooky. He has had his usual stomach issues, so they can make him behave that way. Anyway, he had been making sad little whimpering noises for about ten minutes when I thought I better stop doing the housework and just sit and cuddle him for a while. I went into the room and he said, "Mum" and held up his arms. That's when I noticed his hand was completely purple, and I'm talking eggplant purple, and freezing cold. He had wrapped some ribbon, from one of his toys, so tightly around his wrist that it had cut off circulation. Thankfully I was able to untwist it quickly, but his hand took quite a bit of time to regain colour. It was one of those, do I need to take him to the hospital, moments. After 5 minutes, a few of his fingers were still purple at the knuckles, and his wrist was still marked, but he was able to wriggle his fingers and seemed to have sensation in all of them. My heart still hasn't completely recovered, but I'm getting there!
There were also positives, as far as speech goes, yesterday. I'm choosing to celebrate the positives and not dwell on the negatives too much....


When I tucked Felix into bed for his afternoon rest he said to me, "blue blanket please!" He has a knitted blanket he likes to weave his fingers through. Anything with threads has always been a strong sensory thing for him. The completely unraveled car seat covers in my car are testimony to that fact. It was so awesome that he was able to communicate that to me, enunciating it perfectly. He had the biggest smile when I spread the blanket out on top of him. He looked so proud of himself for speaking so well.

His hand was working well enough to ride today.

Earlier yesterday, Felix was playing with some little animal counters. They are all different colours and used for practicing maths, colour recognition and sorting. This is the conversation we had:
Felix: "Good morning everyone!"
He looked at me and said, "Mum...sing!"
I obviously looked puzzled so he said in a sing-song voice, "Good morning Felix!"
"Oh sorry," I said, realising he was doing show and tell. "Good morning Felix!"
He smiled at me and picked up two of his counters, "red cow, yellow chicken." Followed by some Felix jibberish.
I said, "Oh wow, a red cow and a yellow chicken!"
He smiled, and this continued for about 15 minutes with different animals. We had to swap roles every now and again because it was "Mum's turn." He must have been missing being at school because, as well as our show and tell, he was talking about his teacher and his friends all day. So cute!

His "accent" sometimes makes words hard to understand. Yesterday, he sat next to me signing "cake" and singing something over and over. I couldn't make it out until I heard him say "hip-ray" and blow on his hand. He had been singing "Happy birthday!" He was very pleased when I finally worked it out. I'm sure he thinks I have problems with my hearing sometimes. He almost rolls his eyes at me when I finally get it......it's about time Mum!! Once I had worked out the song, it was now time to take it in turns to sing happy birthday to each other. I had to sign "cake" while I sang happy birthday to him, and then he blew the pretend candles out, and then we'd swap. I don't think I've ever sung happy birthday that many times in a row!

It's funny that that I had been so focused on speech yesterday. After lunch I got an unexpected phone call from Felix's new Speech Pathologist. She had gone to the school to have her first session with him but, as he was home sick, she asked if she could come to the house for a visit, which she did. It was encouraging to hear her praise Felix for the way his speech is developing and to see her excited about how much he could read. I needed that affirmation, so it ended the day on a really positive note.

There were definitely some "wins" yesterday as far as speech goes. I really relish those moments because with each new word or sentence it's a step towards independence for him. I have no doubt in my mind that Felix will speak well when he is older. It's just going to take a little bit longer to get there. As I have said many times before, Felix has taught me that it doesn't matter how long it takes, it's all about enjoying the view along the way.

All Worn Out

Good kicking today

I am sitting up in my bed, electric blanket on, and Felix snuggled up next to me. The house is quiet and we can hear the rain on the roof. These special times are probably the only things I like about the cold weather. I can't really argue about extra cuddles now, can I? The rain is beautiful too. Felix has looked out of the window a few times tonight, and said, "Mum, it's raining!" He enjoys watching it from inside the house, but he's not so keen when he's outside getting wet!

Felix went for hydrotherapy, with his Physio, today. It was probably his best session yet. He really worked hard at kicking his legs and was consistent with it for the whole session. It really tires him out so I was pleased that he pushed himself. His Physio is amazing! She comes up with all sorts of creative ways to get Felix to work his arms and his legs in the water and she knows what will keep his attention. Today, she dropped a small bucket into the water. It was attached to a rope, and Felix had to drag the rope (which was really long), as fast as he could until he could grab onto the bucket. I was surprised at how quickly he was able to do it!

Goodbye to Luna today

About a week ago I mentioned about the Doctor wanting to see me about Felix's blood test results. I found out that he is really low in iron at the moment. This could be because of his ongoing bowel malabsorption issues, or it could be because of a supplement he is on which can be known to lower iron levels. I really want to keep him on the supplement because it's one, of a few he takes, that may slow the development of the plaques on his brain which will cause Alzheimers disease when he is older* The Doctor and I agreed to keep him on the supplement, but give him iron each day as well and we'll retest him in 3 months to see if things have improved. The good news; his thyroid levels are fantastic, and there is no sign of leukemia (also a lot more common with kids with DS).

This afternoon, Felix was really flat and grizzly so I've decided to take a day off work tomorrow and keep him home from school. He seems to have an upset stomach; the usual issues, plus the addition of iron supplements. He's been waking up super early; 4.45am this morning, and is ridiculously tired. The combination of tiredness and not feeling well is making him miserable so, I think a day home in his pajamas is just what he needs!! Whoever said "People with Down syndrome are always happy" hasn't met Felix when he's tired!

Some pajama selfies before bed.

In the time it has taken me to write this, a certain perfect (but grumpy), little man has fallen asleep right next to me. His foot is draped across my leg and he has his head on my pillow. His mouth is hanging open, his hair desperately needs a cut, and I can see a big graze on his chin from where he fell off a swing. He looks like a such a boy! I remember watching him sleep, as a tiny baby, and getting tears in my eyes because I was so thankful that he was mine. Nothing has changed. I'm looking at him tonight, and can't imagine my life without him in it. Sweet dreams!




*All people with Down syndrome will develop Alzheimer's disease at some point in their life. Some as early as their 20's and 30's, although there have been a lot of medical breakthroughs in this field in recent years. Hopefully, in Felix's lifetime, a cure will be found. In the meantime, we will try anything we can to try and slow the process.

Show and Tell

Morning cuddles

Did I ever tell you how awesome it is to be a Granny? It's pretty fantastic! I'm absolutely loving having a sweet little newborn in the house. I can't get enough of baby breath and gummy smiles. Lucky I stopped after baby number 9 because I'm going to be clucky until I'm 90 years old. I could have ended up with 35 kids!! I'm counting on a house full of Grandchildren now.

The best part of having little Luna here is watching the interaction between her and Felix. This is the longest time they have ever spent together and they have developed quite a little bond. Luna can't take her eyes off Felix.....talk about make my heart melt! She smiles and smiles at him, and he leans in and gives her little kisses and hugs. Just gorgeous!

Proud Granny

Yesterday morning I realised, as we were walking out the door to school, that Felix didn't have anything to take for Show and Tell. Oops!! I was still a bit jet lagged from the end of daylight saving and Felix's 5.47am wake up, so my brain wasn't quite functioning. I was scrambling for an idea, when Bekah suggested Felix take Luna to show to his class. I'm so thankful she thought of something because I'm never at my most creative on a Monday morning.

Show and Tell

Felix stood at the front of his class and said clearly, "Good morning everybody!" He then proceeded to shyly jabber in his own little language while the class listened. I helped him to hold Luna, and I explained to the class (with Felix repeating after me), that Felix was an Uncle and so Luna was his niece. The kids were very active listeners, and thought it was so funny that Felix was an Uncle even though he was only little like them. There were lots of giggles and lots of questions. Before things got too chaotic, Felix said, "Thank you for listening" and, after I gave him a quick kiss goodbye, we left him to his day.

I'm so proud of him. He has come a long way from the little boy who used to lay, face down on the floor, covering his ears because there were too many children in the room. To see him standing up at the front of a class of his peers, and show his special things is so wonderful!

Proud Uncle

So proud!

I've just got back from driving to the city...yet again. Days like today make me hope they hurry up and design a car that can drive itself. I'd be quite happy to sit back and relax for three hours instead of dodging kangaroos and bad drivers!

"Look at my fire station,
Luna!"

Today's trip was extra special. I drove down to pick up Felix's sister, Bekah, and our beautiful Granddaughter, Luna. Little Luna is only 3 months old, and doesn't usually like being in the car but, she was an absolute angel the whole way home and didn't make a sound. It must be her Granny's fantastic driving!

Felix was so excited to see his sister and niece. He ran to the door with a huge smile on his face, saying "Bekah, Luna" over and over. He's always been a bit wary around babies. He doesn't like it when they cry and actually gets quite distressed, dropping his lip and putting his hands over his ears. I wasn't sure how he would greet Luna, but he went straight into the room and sat next to her. He helped change her nappy, and zipped up her sleeping bag. He asked to hold her, saying "careful" as he wrapped his arms around her. He kept giving her little kisses and touching her really gently. I was so proud of how nurturing he was.

It hadn't occurred to me that Felix hadn't seen Bekah breastfeed Luna. He usually stays away from her, just in case she cries, so he hadn't been close enough to notice. The look on Felix's face, when he saw her feeding, was priceless. He looked absolutely horrified! He kept saying, "No, Bekah, no", and looked really worried. Even after I explained that Luna was drinking milk from her Mum, he insisted, "No, Mum!" I have a feeling we are going to have some fascinating conversations as he gets older. I can only imagine the things he's going to come out with!

Horsing Around

When Felix turned 3, we enrolled him in Riding for the disabled. We were really lucky that there wasn't a waiting list, like there is in other places, so he was able to start straight away. He was a little bit apprehensive when he first started. Some days he wasn't too keen to get up onto the horse, and other days he liked to mess around and pretend to fall off because he knew someone would catch him. He started with one person leading the horse, a couple of side walkers, and sometimes a fourth person to hold onto him so he didn't fall.

Putting on his reins.

RDA isn't just about riding a horse from point A to point B. The instructors play games with the riders to help with their balance and encourage them to use their legs and core to stay on the horse. Felix, as we all know, is a bit cheeky sometimes, and will do things to get attention or to make people laugh at him. At RDA, I am always amazed at how they manage to get Felix to do the right thing, even if he starts off being silly. An example is when Felix's horse is led to a stand with a toy on it. The idea is that Felix picks up the toy and holds it until the horse has walked to a second point, where there is a bucket. Felix then has to throw the toy in the bucket. Initially, Felix picked up the toy and threw it straight away (and then laughed maniacally!!), which defeated the purpose of the game. The response of his instructor? She didn't say "No, that's naughty, don't do that!" Instead, they walked Felix's horse over to the bucket and said, "Oh no! Now you have nothing to throw into the bucket! Next time you need to hold the toy." He only did it a couple of times before he realised that it wasn't much fun having nothing to throw into the bucket. Now, he hangs on tightly to his toy until he reaches the bucket and then throws it. They are so good at what they do!!

We have really noticed how much stronger Felix has become through his legs and core, since doing horse riding. When he is asked to let go of the reins and put his hands up in the air (as the horse is walking), he is able to balance beautifully, with a nice, straight back. He doesn't need support on the horse anymore and his side walker is only there just in case anything unexpected happens. He likes it when the horse trots. It always makes him giggle and he looks a bit like one of those bobble-head figures. His hypotonia means that his neck isn't as strong as other kids his age, so he doesn't have quite as much control. The trotting helps strengthen those muscles, but it also makes him laugh his head off. Today, his horse decided she didn't want to trot....she was having a lazy day. Maybe next week!

I'm so thankful that Felix has the opportunity to do different therapies which, although helping him with his development, are also a lot of fun and don't seem like hard work. The great thing about horse riding is that, in addition to be physically good for him, it is increasing his confidence, teaching him a really cool skill, and is a great place for social interaction. Everyone at RDA has noticed how much Felix is talking while he's riding. They encourage him in his speech and also use signs he's familiar with to make it a really positive experience for him. If you know any kids you think might benefit from this type of therapy, make sure you mention it to them. It's so beneficial. Felix just loves it!

Silver Lining

Ever have one of those frustrating days? Nothing major goes wrong, but lots of little annoying things? Yep. I've had one of those days!!

It started off pretty normally. I dropped Felix off at his classroom and he happily did his jobs and ran off to play on the playground. When the bell went, he refused to come down from the playground (throwing bark down the slide is WAY more important than getting to class on time!) I had to manoeuvre myself up onto the playground and hold onto his foot (the only part I could reach), before he took off up to the next level, then drag him close enough to be able to grab him. That was my exercise for the morning and, like I said, that was a normal start to the day. I went off to work, slightly puffed out, but knowing Felix was happily settled in class.

Just after recess, one of Felix's support workers came to find me because she thought he didn't seem like himself and might be sick. I went into his class and saw that he was pretty flat and didn't look very well so, after a phone call to Felix's Dad, he went home for the rest of the day. He was pretty miserable most of the afternoon, so it was a good decision to send him home. I'm thankful that the staff; his teacher and support workers all know him well enough to be able to see changes in his behaviour. He still can't communicate when he is feeling sick or when he is hurt, so it's great that they observe him so carefully.

WARNING.... if you don't deal well with "poo" stories, skip over the next paragraph ;)

New tricks!

The fact that Felix was unwell again was my first frustration. Walking in from work to a "poonami" was my second. As I've written previously, Felix has struggled with some gastrointestinal issues for the past couple of years. Nothing life threatening, but he still experiences some pain and discomfort at times although it is controlled quite well with his strict diet. Unfortunately eating gluten, which he has had to have a bit of lately prior to his blood tests, tends to block him up. He can't tell us his stomach is feeling upset, but he gets quite miserable and cranky and, after the absence of number two's, we finally figure it out. That's what was up with him today! Thankfully, after a little rest in his room, things got moving. The only problem is that Felix doesn't like the feeling of having a dirty nappy so, his solution is to take it off! Yep....taking off a nappy containing a few days worth of build up is never going to be tidy. His quilt cover, his quilt, his sheet, one of his favourite teddies, were all coated and that was my greeting when I got home from work today!!  The silver lining? Felix has been happy and settled ever since!!

The rest of the night has been a series of frustrations. All Felix's washed bedding ended up coming out stained and dirtier than when I put it in the machine, so I'm off to buy a new washing machine tomorrow. My computer crashed three times before I was able to upload photos and write my blog, so I wasted an hour. Finally, the internet dropped out, just as I was about to start typing. Sigh!

Can't get enough of this kid!

However.....
One of the many things Felix has taught me is to look for the positives in everything. Sometimes they're hard to find but, if you look closely enough they're there. In amongst the frustrations of today, there were so many little things that made me smile. The phone conversations with people I love. Bumping into friends I hadn't seen for a while. Sharing milkshakes and donuts with Aaron (16) and our dog, Atlas, while we were out for a walk. Felix's laughter and huge smiles when I pushed him on the swing (after his much needed bath) and, the fact that, despite the mess, he is feeling much better now and has fallen asleep comfortably and pain free.

I've got so much to be thankful for!