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!

School Days

New sight words. He was more
excited than he looks! :)

Felix was SO glad to be going back to school this morning. He couldn't get his uniform on quick enough, and was chattering away about it all morning. First it was "School...playground", followed straight afterwards with a long list of all of his friend's names. I love seeing him so happy to go to school. It makes all the nerves and anxiety I felt, in the months leading up to him going to school, fade into the background.

Felix is a stickler for routine...with everything!! School is no exception. I work at his school a couple of days a week so, on those days, he likes to help me get organised too. He takes my car keys and locks the car, then walks to the staff room with me and puts my lunch in the fridge and makes sure my bag is put away. It's adorable! I love our mornings together. We then head up to his classroom where he unpacks his bag and puts everything in the right places; communication book, library books, lunch box, reading folder, drink bottle and fruit, all in the correct spot. He has learnt it all so fast. After he has unpacked, he gets his school hat out of his tray, puts it on, and races straight outside to the playground for a quick play before the bell rings.

"Mum...stop with the camera flash!"

I was a bit worried that Felix would get lost in the crowd at school....literally. He's so much smaller than any of the other kids that I was sure he would be bowled over all the time. I shouldn't have been worried because he is so well looked after. All the kids know him by name, from the youngest kids to the high school ones. If he starts to head off to a part of the school where he's not meant to be, there is always someone willing to guide him back. If he refuses to come down from the playground, one of the bigger kids will climb up and slide down the slide with him. There is always someone walking past saying "hi" to him or giving him a high-five. It's just beautiful to watch. He's quite the little celebrity :)

Felix was very proud that he brought home some new sight words today. He read those and then wanted to read all the ones from previous weeks as well. I still can't believe his vocabulary. I'm honestly blown away by how many words he knows. He has always been interested in reading, but that brain of his has obviously retained so much of what we have read to him and exposed him to through lots of reading activities and games. It has taken time and hard work, but has never been a chore. Felix has always loved to learn and, to see it paying off now that he is at school, is so rewarding. He has been smashing stereotypes since he was just a tiny little guy. He signed his first word, "butterfly" at 8 months old, and hasn't stopped since. Super proud!

Cuddles with his puppy before bed.

I'll miss picking him up from school tomorrow. I've got to head to the city to spend some time with one of my gorgeous older boys. He's not quite as cute, but he gives pretty good hugs! I'll probably be too cranky and tired to blog tomorrow night...so hopefully I'll have some interesting rambles in a couple of days!

Bouncing Back

Those eyes!

One of the things I was worried about, when Felix started school, was how his immune system would cope with all the extra bugs and germs that he would be exposed to. Winter, during kindy, was often tough, but that was only 5 days a fortnight and school is 10. It is currently week 9 of an 11 week school term and, amazingly, he has only missed 3 days with sickness despite his restricted diet that doesn't allow for a lot of fresh fruit and vegetables. I'm very thankful for an excellent multi vitamin, probiotics and other supplements. They're definitely worth it!

Sound asleep.

His nemesis has always been croup. He starts off with the slightest runny nose, and by night time can be barking like a seal! He had one night of suspicious coughing last week, but was fine the next day. Yesterday, I prepared myself for the worst when he fell asleep in the middle of the day. Felix never sleeps during the day. He is like the Energiser bunny and bounces around from 6.30am, until he goes to bed at 7.30pm. Within an hour or so he had a fever, so I held my breath and waited for the coughing to start. It didn't. Instead, he threw up once...thankfully, not too much, but I wasn't looking forward to washing sheets and changing bedding all night! He seemed a bit better when he went off to bed and, I was so happy when he slept all night with no more vomiting!! Yaaaay!!

He stayed home from school today and, when I got home from work, he was back to his usual energetic self. He was keen to do his homework and read his readers, and do some other reading activities on his ipad. He ate a bit of dinner, and rode his little bike around while wearing my boots (as you do). The funniest thing was his game of "Duck, duck, goose!" He made a circle, using halves of his plastic Easter eggs. They were the other "people" in the game. He sat in the circle and touched the eggs and said "duck" a few times before one of them was the goose. He then made the egg chase him around the circle until he sat in that egg's spot. Sometimes he had to chase the egg, and other times the eggs chased each other. I love watching him improvise when he doesn't have other kids to play with. He's such a funny kid!

I mentioned in a recent blog that Felix has just had blood taken to test for a whole bunch of things. I got a call from the medical centre today to say that the Doctor wants to see me to talk about the results. They said it wasn't urgent, so I'll breathe easy, but I'm interested to hear what she has to say. In the meantime, I'll enjoy the fact that I have my healthy boy back again. Hopefully he'll be off to school tomorrow, wearing out his teacher instead of me ;)

Easter Bunny

Felix with his haul

These plastic eggs were a hit!

The Easter bunny had a bit more of a challenging time, trying to find little gifts for Felix this Easter. In the many months break I had from writing my blog, Felix has had a lot of issues with his bowel. He was diagnosed with SIBO (Small Intestinal Bacterial Overgrowth). This was treated with an aggressive course of antibiotics twice, but is still causing him issues. Also, after a series of hydrogen breath tests, we discovered he had malabsorption issues to lactose, lactulose, sucrose and fructose (as well as gluten for other reasons). We have had many appointments with Gastroenterology and with a Dietician, As a result, Felix has been taken off all sugars. The hardest sugar to remove from his diet has been fructose because it's in pretty much all fruit and vegetables, limiting his diet quite drastically. Felix has always LOVED his fruit, especially grapes, bananas, strawberries and apples, so it has been really tough. There have been days when he has sat by the fridge crying because he couldn't have fruit. We stuck to the new diet very strictly for a couple of months and, since then, have been able to slowly introduce a few basic things. We seem to have struck the balance now. A banana a day seems to be OK, and he seems to be tolerating some veggies like spinach, mushroom and zucchini. Fingers crossed!! We're currently waiting on results from yet another bowel test, and some blood tests so, hopefully, nothing new rears its head over the coming couple of weeks.

Anyway....back to the Easter bunny.....
Due to all of the above, Felix can't eat chocolate. Thankfully he's not too much of a sweet tooth anyway, but he has always enjoyed the few little chocolate eggs he has found on Easter Sunday. This year, the bunny had to be a bit more creative, and come up with some different ideas. He did well because Felix absolutely loved his little Easter stash!

Easter bunny was here!

He got some plastic eggs filled with little plastic animals, miniature toy trains and cars, which he thought were great. All day he has been putting the toys back inside, and then opening them up again (the gift that keeps on giving). There were two stretchy plastic rabbits with lights inside that flashed when they were dropped on the floor. These have been thrown around the house and haven't managed to break anything yet. He got a plastic egg which, after sitting in water all day, hatched and a little bunny came out. There were new socks and a pair of firefighter pajamas. He even got a few small toy dinosaurs, because every occasion calls for a dinosaur!! Incredibly, the Easter bunny even found a few little chocolate bunnies which were sugar, lactose, and gluten free. Even more amazing is that they actually taste just like regular chocolate!!

The rest of the day was a pretty lazy one. Felix and I went to the park and he played on the playground for a while. He loves swings at the moment, so it went a bit like this...."Mum, push, high, please", so I obediently pushed him as high as I could while he laughed and laughed. Then it was, "Mum, stop!" I grabbed the swing and stopped it. He gave me a grin and, "Mum, push, high, please", followed a few minutes later by, "Mum, stop!" This repeated itself over and over until I finally told him that Mum was worn out, and maybe he should go on the slide for a while instead.

Be quiet Mum!

I'm a bit of an Australian Rules Football fan. My team had their first game of the season today so Felix and I dressed up in our team colours and sat to watch the game on TV.  Felix loves kicking the footy around and is getting really good at it. He often does it while we watch the game. What he doesn't like, though, is me yelling at the TV while the game is on. It was a close game, so I got louder as the game went on. Felix kept saying, "Mum stop!" or "Mum, noisy!" while covering his ears. He ended up deciding that wearing his earphones (which he uses in places that are too loud), was the best option. Oops!! I'll have to work on my volume control!

I hope you have all had a safe and relaxing Easter!  Thinking of my family and loved ones today!

Road Trip

Last night the phone rang, and a very little voice on the other end asked, "Granny, when are you coming to visit?" It was my Grandson, Noah (almost 4). I asked him when he would like me to come and he replied, "Can you come tomorrow?" How could I resist?

This morning, Aaron (son #5), Felix and I got organised early, and left to drive the 200km to see Noah, and his beautiful sisters, Summer and Harper. Three Grandbabies in one day....I am one happy Granny!!
Felix has always been so good in the car. He never cries or gets upset...he's just happy to chill out and enjoy the drive. Now that he is talking a lot more, it's a lot of fun because he tells me what he can see out of the window. Today he was excited because he could see the moon even though it was daylight. He pointed to the left window and said, "Mum, see moon", and then pointed out of the right window and said, "Mum, sun!" Very observant, I thought.

Unfortunately, Felix has inherited my dislike of emus (possibly because of my reaction every time I see one). Today we saw about eight of them out in a paddock. They were fairly far away, so I felt brave enough to stop and try and take a photo. I said to Felix, "Can you see the emus?" He responded by trying to escape from his car seat, shouting, "No, Mum, no!!" Can't say I blame him. I jumped back in the car as quick as I could once they started moving!!

Felix loved spending time with his nephew and nieces today. Being the youngest in a big family, and having a ten year age gap between him and Aaron, Felix is a lot like an only child. Having nieces and nephews so close in age to him is just perfect. Although he is their Uncle, they are more like siblings to him. Hearing them all play together is music to my ears. I absolutely love it! I'm so thankful that he will be able to grow up with them. Thankful for him that he will always have family, his age, to interact with and share things with and, thankful for them that they will always see people with Down syndrome as "no big deal". Felix has been in their lives since the minute they were born so to them, Felix is just Felix.

Uncle Felix and Noah

I took the boys down to the beach this afternoon. There was a special event on down at the foreshore, so I thought it would be fun (and it's an excuse to go to the beach...Felix and I both LOVE the beach!) There were giant kites floating up in the sky which Felix thought were amazing. He didn't quite know where to point first. For half of the time we were there, all I heard was, "Mum, kite!" That was until he saw the helicopter giving rides to people. It would go up in the sky, circle around and then come back in to land again. He couldn't take his eyes off it, so the repetitive phrase became, "Mum, yellow helicopter" over and over again. Joel (son #2) and I decided to take Noah and Felix closer to where the helicopter was taking off and landing. We sat on the grass, and the boys happily sat for ages, chatting and pointing. Felix would sometimes say something to Noah in jibberish, and Noah would answer him as if he knew exactly what he was saying. It melted my heart just a little bit!

"Mum...yellow helicopter!"

We spent the last part of the afternoon on the playground. Felix could play on a playground for hours...literally! For a kid with hypotonia (low muscle tone), who tends to tire very easily, he has boundless energy when it comes to climbing, sliding and swinging. I was exhausted after ten minutes but, he was still going strong two hours later. Watching his dexterity and strength, I'm always reminded again of the prognosis we were given before he was born. The Geneticist told us he would, "probably not walk or talk or be able to feed himself" (among other things). Today I marveled at my perfect little man confidently navigating the playground, keeping up with the other kids, and having a wonderful time. He makes me so proud!

After exerting all that energy, I was sure that Felix would fall asleep on the 2 1/2 hour drive home because it was close to his bedtime. No... he happily munched on his snacks, pointed out the occasional sheep or cow, and played on his ipad. He's such an easy kid!

Felix's newest niece; little Harper

Well...I hope you've all left a carrot out for the Easter bunny, and he leaves you something yummy! Enjoy your Easter celebrations tomorrow!