Tuesday, 31 July 2012

Brekkie in Bed

That's a scary teacup!
Nathan is on afternoon shift today so he was home to take the older boys to school this morning and to pick up a few things from the supermarket. Felix and I got treated to breakfast in bed when he got home, which I wasn't expecting. Nathan came into the bedroom, where Felix and I were having a play, and brought in a tiny teacup and saucer filled with a baby-cino (a cup of cappuccino foam with chocolate powder on top), for Felix. There were a couple of pieces of croissant sitting next to it on the saucer too. My bigger version (plus coffee) followed. Yum!

The funniest thing was Felix's reaction. Bear in mind that usually Felix will happily grab our empty coffee mugs and try and drink the drips from the bottom of them. His response to the tiny little cup and saucer was to be horrified and nearly throw himself off the side of the bed. Nathan and I couldn't help it; we laughed so much. It was such a funny reaction and totally unexpected.

Actually... this is
After a couple of seconds, Felix got a little bit more inquisitive and moved a tiny bit closer towards the teacup and saucer. We could tell that he really wanted to touch it but he was still a bit wary. Nathan scooped up some of the froth onto a teaspoon and put it in Felix's mouth. He didn't need any more convincing after that. He grabbed the spoon and started scooping it into his mouth by himself. He didn't stop until it was all gone, then looked at my coffee and said "Mmmmmm".

Felix was extraordinarily smiley today. He couldn't wipe the grin off his face all day. He charmed all of the ladies at the shops; smiling and pointing and doing his 'Ooooooooh' face. He had a beaming smile when he was sitting on the toilet, and had nothing but grins when he ate his dinner. He was still smiling tonight when I dressed him in his pajamas and put him to bed. I wasn't in the greatest of moods today, but that gorgeous face lightened my mood so much. How can I feel grumpy when I look at that smile?

This is what I have had to look at all day. It's been pretty tough,
but somebody had to do it!! x x x 

Monday, 30 July 2012


Another big drive!
We have just arrived home from a whirlwind trip to Adelaide to celebrate our beautiful, Amy's, 21st birthday. We had a nice dinner earlier in the night with Amy and her boyfriend, Daniel and Cate, Bekah, Joshua (who drove down with us) and Amy's boyfriend's lovely parents. Prior to Amy's party, we were able to meet Daniel's future parents-in-law (also very lovely people) for the first time, and have a look at the wedding venue he and Cate have chosen, which is stunning! In the evening, we had a great night with Amy at her party, caught up with some friends and suitably embarrassed Amy with a video of her life which Nathan had made for her.

We have never left Felix overnight before, but because Amy's party was in the city and we knew it was going to be a late night, we decided to leave him with my parents; his first sleepover! Poor little guy had been stuck in the car for five hours, so it was nice for him to get out at Granny and Papa's house and have a big play. He reached out for his Granny as soon as we arrived and was playing and having fun in no time.

Me, Amy and Bekah at Amy's 21st dinner
I thought I had better take Felix to the toilet before we left for the night. I put his potty seat onto the toilet, took his nappy off and sat him up there. Felix, being the busy little person he is, wriggles around quite a bit while he's on the toilet. He likes to grab for the toilet paper, look through empty toilet rolls or play with an empty tampon box (bit weird I know, but it keeps him occupied).

Felix can reach the toilet door at my Mum's house if he leans forward and stretches a bit. He found out the hard way that his potty seat doesn't fit quite as well on Granny's toilet as it does at home. He leaned forward too far and the seat flipped out from under him. He fell, legs first, into the toilet. Actually, it was one leg in the toilet and the other one on the outside! Thankfully, my reflexes were quick enough to grab him before the rest of him fell in. I had to refrain from laughing out loud; it was so funny. He looked quite puzzled as to what had happened. I quickly fixed the seat and sat him back on the potty (put him back on the horse so to speak), because I didn't want him to feel scared to sit on there again. I removed his soggy sock and let him finish his business! Never a dull moment with Felix around.

You're silly Mummy!
When we left Felix at my parent's place (with an extensive list of instructions), he was playing happily on the floor with my Mum sitting beside him. It was comforting to know he was having fun and not bothered when we left. I checked in with Mum an hour or so later and she told me that he was happy and settled, but hadn't eaten anything for dinner and they couldn't get him to drink anything. She was laughing when she told me they ended up with about five different plates of food in front of him to try and get him to eat. It had been a very long day for Felix, and sometimes when he's tired he doesn't eat much so Mum and Dad put him to bed and he fell asleep straight away.

This morning I sent Mum a text message to check on the little guy. They had a very early start at 5am and Felix still hadn't eaten anything or had anything to drink. True to form, he was still ridiculously happy and didn't seem bothered at all. I told Mum that he must have decided to go on a hunger strike to protest us leaving him. When we arrived to pick him up, he had just eaten a little bit but still hadn't had a drink. I picked him up and gave him a kiss then put his cup to his mouth. He had a HUGE drink and then looked back over my shoulder and gave my parents the cheekiest grin. Little monkey!

Saturday, 28 July 2012


Fun with Mummy
I never thought it could be possible to get any prouder of our little man. His communication is literally getting better every day. He was sitting, playing with his toys, near the front window of our house this afternoon and very excitedly told me every time a car drove past outside. He made a noise to get my attention, then signed the word "car" and then pointed repeatedly towards the window. I responded by saying, "I know. There's a car outside." He beamed a huge smile! I love the look of satisfaction on his face when he knows I've understood exactly what he's telling me.

My little cleaner
Later in the day Isaiah said to me, "Mum, quick, Felix needs to go to the toilet." I asked him how he knew that, and he told me that Felix had asked him (by signing "toilet") Isaiah then scooped Felix up and ran him up to his potty, took his nappy off and put him on it. The little champion did a huge big wee! I was impressed for two reasons. Firstly, that Isaiah was paying enough attention to see what word Felix was signing to him; and secondly that Felix actually asked to go to the toilet. Usually I will ask him at different intervals during the day and he will sign it to me when he hears the word 'toilet', but he has never actually approached any of us to ask before. Super excited about that. Hopefully he will keep it up.

One of Felix's new signs is the word 'train'. He is a little bit obsessed with them at the moment. On his ipad, he will press the picture of the train over and over again to hear the noise it makes. Today I was holding Noah while Joel and Mel were out. Felix, my little green eyed monster, came over to make sure that Noah wasn't getting all of the attention. He noticed, straight away, that Noah had a picture of a train on the front of his shirt. He pointed to it and started signing 'train'; and then later when he was pushing a toy train along, I saw that he was signing 'train' to himself. It's pretty cute when we catch him 'talking' to himself.

Hello handsome 
I know some parents of children with Down Syndrome who have not started learning to sign with them yet, or are unsure about whether or not to bother. Again, I really encourage you to try it. Sometimes it takes a while for children to pick it up and start signing themselves and I understand that can be frustrating. I can assure you, however, that if you keep it up they will eventually start signing and you will be so thankful you persisted (especially if they are much later to speak or non-verbal). I have spoken to several parents who wish they had kept signing because they are now struggling with very frustrated children who have limited spoken vocabularies. Who knows what the future holds; maybe your child with Down Syndrome will learn to speak quite early (and some do); but what have you got to lose from having a bit of fun learning to sign? It's been a laugh for our family to learn it together (some are better than others), and we've really enjoyed it.

Tomorrow we have to make the trek back to the city again. It will just be an overnight visit this time for our daughter, Amy's, 21st birthday. We are looking forward to spending some time with her, celebrating together. Felix is having his first overnight sleepover with Granny and Papa without us there. I feel a bit of a maternal 'pang' about leaving him, but at the same time I'm looking forward to some time with my gorgeous hubby. It will be our first child free night since Felix was born. Besides, Felix has so much fun when he's with my parents that I don't think he'll notice we're not there. There will be a ton of stories and songs. Papa will show him the trees and plants in the front yard, and Granny will be showing him how to jump like a frog. He'll have a great time.

I won't have internet coverage tomorrow, but I'll be back then next day with more of Felix's adventures!

My thoughts will be with a beautiful family tomorrow as they farewell their precious little butterfly. Her ten short months of life touched so many people, and she will be forever in our hearts. Sleep sweetly little one x x x

Thursday, 26 July 2012

More Sweet Kisses

A while ago I wrote a blog about the first time Felix gave me kisses. I was so excited and loved every single dribbly, wet smooch. Unfortunately for me, he only did it for a few days and then the kisses all disappeared. Well, I'm pleased to say that after a short recess, the kisses are back. OK...maybe not for me this time, but for Daddy, which is pretty special. Last night before he went to bed, he leaned in and planted one right on Nathan's lips. He ended up giving him three or four, which was one of the sweetest things to watch. Hopefully I might be lucky enough to get one again soon.

After Felix had finished giving Daddy lots of kisses, Nathan gave me a kiss. Felix thought it was so funny; he started giggling then he pushed Nathan's head towards me so he would give me another kiss and then laughed some more. It's so great to see Felix gaining more awareness of emotions and how certain behaviours affect those around him. He seems to know when people need a cuddle or need a laugh. I've heard a lot of people say they think people with Down Syndrome are more in tune to how others are feeling than the rest of us. I thought initially that it was just another stereotype, but I'm beginning to think there might be some truth in it.

Our biggest son and our littlest son !
I took Felix back to the Doctor today after our scare on Sunday night. Thankfully, apart from a bit of a cold, he has been given a clean bill of health. His chest is clear, which is a relief, but the Doctor said that if it happens again we need to get him straight to hospital. He said he was quite worried about him on the night. In a way it was reassuring to hear him say that, and it wasn't just me overreacting. I think Nathan is still recovering from me yelling at him to get in the car NOW! Poor guy ran out of the door in bare feet, pulling on a pair of shorts and with a tshirt in his hands. I'm usually pretty calm so he knew that there must be a reason for me being so frantic.

This afternoon our eldest son, Daniel (22), dropped in to pick up his dog which we had been looking after for a couple of weeks (that would be 5 dogs in the backyard!). He, and Joel (17), sat on the floor and played with Felix for a while. He loves climbing all over his big brothers, so having two of them on the floor at the same time was pretty special! We were talking about when we thought Felix would be walking, so one of the boys stood Felix up and held him until he was stable, then let go so he was standing alone. The other one then held out his arms to Felix and asked him to walk to him. It was fantastic to see Felix take a couple of steps between them a few times. He definitely knows how to do it, he just needs the confidence now. I'm not quite sure how I'll feel about him walking. I'm still enjoying the baby stage but he's growing up so fast.

Standing in the middle of his big brothers.
Felix is enjoying his ipad, and has already learnt a lot from it. He loves the 'Twinkle, twinkle little star' app, and plays the song over and over while he does the actions. It's so incredibly cute! He has one application that shows four pictures and then makes a sound relating to one of them. When he hears the sound we can say, "That's a bird noise. Point to the bird" and he will point to the bird. Obviously, there are a lot of things he still doesn't know the name of yet, but it's exciting to see the progress in his comprehension in the short time he's been using it. He loves all of the animal apps; touching the animals and hearing the sounds they make. He's a fan of monkeys and pigs at the moment and makes the sounds for both of them. Just a little bit gorgeous!

Tuesday, 24 July 2012

That Face!

We've missed these crazy faces!
Felix is still a bit unwell today. His nose is runny and he sounds very crackly in his chest and has a horrible cough. Even though he's not feeling the best, he is eating much better and showed us lots of his crazy faces which have been missing for the last few days.

I haven't mentioned many of Felix's firsts lately, but he has a few new cute ones. He has always loved the song 'Twinkle, twinkle, little star', and could already wiggle his fingers like they were twinkling and does half a diamond by touching his thumbs together. This past week he has finally learnt the 'Up above the world so high' bit. He points both his pointer fingers and stretches his arms as high as he can up to the sky. SO cute!!!

A bit of cleaning
Another thing he has started to do is shake his head for 'No'. He will crawl up to something he knows he's not meant to touch, then he will look at me and shake his head. He will then go on to touch it anyway and then look at me with a cheeky smile until I tell him off and move him away. Isaiah (14), commented today that he can't believe how much Felix can actually communicate to us these days. He's finding it a lot easier to understand what Felix is asking and what he wants. It just goes to show that you don't always need the spoken word to communicate.

I asked Isaiah to wipe the front of the cupboards in the kitchen today. Felix was looking for something to do so I gave him a sponge as well. He helped Isaiah and had so much concentration on his face as he wiped the cupboard. I'm glad I thought ahead and gave him a brand new sponge, though, because it inevitably ended up in his mouth. I really try to include Felix in little jobs around the house and make a bit of a game about it. I want him to be able to contribute in the same way the other kids learnt to do when they were younger, and help him become self-sufficient as he grows.

I love the look of victory on his face... Naughty boy!
Felix isn't usually allowed to touch the computers at home. He has pulled a few of the keys off (I'm now an expert at writing my blog with no 'L' key). This afternoon I sat Felix up on the bed next to Nathan, who was on his computer. Mine was sitting on the bed closed. Felix looked sideways at Nathan to check if he was looking, and then picked up my laptop and pried it open. He kept looking back at Nathan to see if he was going to tell him off or not. When he got the laptop open, he began 'typing' on the keys. He still kept checking Nathan's face to see if he was in trouble; then he looked at me with a beaming, victorious smile! We couldn't help but start laughing. That face is just too irresistible....naughty boy!

Monday, 23 July 2012

Tough times

I don't want this on my finger!
It's been a really emotional 24 hours. Yesterday another couple from our Down Syndrome family lost their beautiful 10 month old daughter. She had been in hospital for a long time, and was finally well enough to go home. Her Mum and Dad were a little bit worried about her when they got home so they cuddled with her through the night, holding her hand and loving her. In the morning, they took her to hospital where it appeared that she had stabilised. Sadly, though, her little body was just too tired and she took her last breath at about 11.45am. Although it was very peaceful, it was sudden and unexpected. All of us who had come to love this gorgeous little girl with the huge eyes, felt shattered. Our hearts are broken for her Mum and Dad who adored her. Rest in peace precious girl x x x

I cried most of yesterday. The tears just wouldn't stop. I cried for her and her parents; and I cried with thankfulness for Felix's life. There has been more than one occasion when we were told that Felix may not survive. It's times like this that I'm reminded just how lucky we are that we have him to love and to watch him grow. At the same time, I have an ache in my chest when I think of the pain these parents are going through right now. Instead of planning for her first birthday in a couple of months, they are planning her funeral. This never gets any easier.

Just chillin in his cot in HDU
Late last night (approx 10.45pm) I could hear Felix making a strange noise through the baby monitor in our room. I decided to go and check on him. He was asleep, but there was something funny about his breathing which worried me a bit. I went back into our room to tell Nathan to prepare for an unsettled night. Within minutes, Felix started to cough. I ran into his room to find him gasping for breath in between barking like a seal. I recognised the cough sound as croup, which he has had before, but I've never seen any of our kids gasp for air like that. With every breath out, it was getting harder and harder for him to take a breath in.

I'm not a panicky person; in fact I probably leave things a little bit too long when it comes to the kids being sick. Last night was different....the look in Felix's eyes really scared me. I could tell he was really struggling. I yelled at Nathan to get us to the hospital as quickly as he could. We bundled Felix in the car and rushed down there. They got us in quickly and put him straight on a nebuliser and gave him some Prednisolone. It didn't take long before he settled down significantly. They gave him three nebulisers and by the time they were finished the coughing had almost completely eased, but he was still really gurgly and sounded horrible.

They admitted Felix into hospital to keep an eye on him overnight, so at 2.30am in the morning, we moved up to the High Dependency Unit (They didn't want him on the Paediatric Ward in case he caught something else). Nathan stayed with him while I went home to pack a bag for them. None of us got much sleep. Nathan said that Felix slept for about 20 minutes. They think the Prednisolone might have hyped him up a bit. I tried to sleep at home, but was too worried so I headed back up to the hospital just after 6am.

Nebuliser before bed tonight
When the Doctor came to see him in the morning, he asked if we wanted him to stay for one more night for observation, but we really wanted him home so he could get some sleep. They gave us the medication he needed and we all came home and slept for a couple of hours. It's now 9.30pm. Felix has been in bed since 7pm after he had a nebuliser and his medicine. He has the vaporiser steaming his room, but I have just heard him start coughing again. I'm really hoping that he will stay settled and get some much needed rest.

We have had a tiny taste of what some of our friends go through with their children on a daily basis. I've lost count of the number of little ones with Down Syndrome who are enduring long hospital stays due to a variety of different health issues; and remembering the tiny ones who have already lost their lives this year. It really puts things in perspective and makes me so thankful that Felix is usually so well. A reminder to count my blessings every day!

Saturday, 21 July 2012

Shopping Adventures

Dress up time
I have written quite a lot about Felix's fascination with wearing Daddy's underpants on his head or around his neck. Nathan's underwear drawers are at just the right height for Felix to sit and pull everything out, and he still does it quite often. As strange as it sounds, it has really helped with his coordination. He will sit in front of the mirror lifting them over his head, then taking them off, then putting them back on again. He has become so good at it that he gets them over his head the first time he tries now.

Last night, Felix set a personal best record. He disappeared around to Nathan's side of the bed for a few minutes. When he reappeared a bit later, he had so many things draped around his neck that he could barely crawl. Nathan and I were laughing so much that we had to take everything off to count it all just to see how much Felix had put on. There was a total of three singlets and five pairs of underwear!!! Not a bad effort!

Nate and Felix with Noah
It's always an adventure to go shopping with Felix. I try hard to make it an educational experience for him; talking as we walk along about the things we see, and the food we put in our trolley. This morning Felix really didn't want to sit in the trolley, so I picked him up and carried him for a while. I was shopping for fruit and vegetables at the time, so decided to get him to 'help' me. I named each thing as I picked it up and then asked Felix if he could put it 'in' the trolley. Thankfully most of the vegetables I got today were quite sturdy (cauliflower, broccoli, corn etc), because they were dropped from a reasonable height into the trolley. He thought it was great to help Mummy, but it certainly wasn't the day for strawberries and grapes!

We continued this through the first few aisles. Felix threw everything with gusto into the trolley and I had to restrain myself from stopping to rearrange the contents of the trolley every few minutes (I'm a little bit pedantic about the neatness of my trolley - just ask Nathan; he learnt that the hard way). After a few aisles, Felix was getting heavy and, of course, I had picked a trolley with wheels that got more 'wonky' the more shopping I put in it. I put Felix back in his seat, which was fine until the shopping got high enough that he could reach it. He then thought it would be fun to throw the shopping 'out' of the trolley and onto the floor. The problem being that he is so quick now, as soon as I bent over to pick one thing up another thing went flying over my head. Little rascal! My only choice then was to carry him the rest of the way, pushing my wonky and exceptionally full trolley. A back massage would go down a treat right now!

Daddy's hat
I have met some beautiful people while out shopping. The majority of people treat Felix like a mini-celebrity. They come up to him and talk to him, making comments about his gorgeous smile or his laugh. Some ask questions about Down Syndrome and others just give me a 'knowing smile'. Every now and again, however, I come across some people who actually glare at Felix and shoot me quite nasty looks. When I was in the city earlier last week, I was at a large shopping centre with our eldest daughter, Amy (21). I had just finished telling her about a woman who had stared at Felix and given me an awful look, when another woman walked past and did exactly the same thing. Amy asked, "You mean like that?" She had noticed it at the same time I did. I still struggle to know what to do in that situation. I know some parents of children with Down Syndrome develop their own 'one-liners' to say in response, but I find myself rendered speechless. I try to smile at the person, but it probably comes out more like a grimace.

I mentioned this to my Mum later on that day. She started to cry. She said that she doesn't understand why people would react like that to Felix. To her, he is just Felix; and I agree. I'm baffled by the people (in my experience, usually women between 50-70) who feel the need to express disgust both towards Felix and me. I don't mind people who stare at Felix because they have noticed that he looks different and they are trying to work out why. Usually most of those people will have a look of recognition after a second or two and then smile at both of us. Sadly, there are that small percentage of people who show their disdain immediately; and if I'm honest, it can cast a shadow on what might have been a really lovely day. 

Dancing in the shops with Amy
I know that some people would just say, "Don't pay any attention" or "Be thankful that the majority of people are very positive". Most of the time I'm able to take that advice and don't let it bother me too much, but like everyone else, some days I feel more vulnerable than others. I think it hurts sometimes, because I want people to see Felix in the same way we see him; as a precious little boy who brings so much happiness to our lives and the lives of others. Yes, he looks a little different; but he is much more similar than he is different. If only everyone could give people with Down Syndrome a chance.

I have received some awesome messages from people telling me their stories of going up and speaking to someone with Down Syndrome for the first time; or sharing a smile with a child and their parents. I know I've said this before, but keep it up! You don't know the sort of day someone is having, and that smile or comment from you can make the world of difference to a person with Down Syndrome or their family member.  Thank you to those of you who are willing to make the effort and move out of your comfort zone to experience something different. It's a two way street....it will make you feel good too!

Friday, 20 July 2012

Wednesday- Final Day Away

Very busy at Early Intervention
Wednesday was an incredibly long day. Felix and I were up very early for breakfast with Granny and Papa and a little bit of a play before we had to leave. I packed up the car, we said our goodbyes and were on our way by 9am. I was so looking forward to our whole day and couldn't wait to get started because we were headed to the Down Syndrome Society for Early Intervention with all the ladies I had been out for dinner with and their beautiful kids. I picked up our daughter, Bekah (19) on the way so I could spend some time with her and she could see Felix as well.

We arrived at Early Intervention just on time. The feeling I got when Felix and I walked in there was overwhelming. All of the gorgeous little ones in Felix's group had grown so much since I saw them last. Most I haven't seen since January and a couple I haven't seen in over a year! What struck me is how different they all looked to each other. I've mentioned before that years ago I had this weird idea that people with Down Syndrome all looked exactly the same. As Bekah pointed out to me, it's a bit like Caucasian people who sometimes say that all Asian people look the same and visa versa, because they don't know each other as individuals.

Painting with Bekah
Looking at all of those stunning little faces, all I could see was their differences. One little girl, Lilly, is the spitting image of her beautiful Mum. Another little boy, Liam, has fine red hair, the darkest eyes and the face of an angel. That's just the physical differences but their personalities are all different as well. Just like any other group of children, there are the outgoing ones like little Lola, who clapped and cheered at the end of every song. She was so enthusiastic and her whole face lit up with a huge smile. Then there is little Charlie, such a stunning looking little boy, who is a bit more shy and reserved but when he smiles it is priceless. Then there is another Liam who is the daredevil of the group, zipping down the little rollercoaster with his funky spiked up hair. Chloe is walking and is an independent little Miss. She reminds me of our Amy at the same age; she knows exactly what she wants and is very determined. You can't help but love her! And then there's Felix who sat with a huge smile on his face when everyone sang his favourite song... You guessed it...Rock a Bye Your Bear.

Making music with Mummy
The Early Intervention room is amazing. There is everything from a massive ball pit, toys and puzzles, to painting, gluing and even a sand pit inside (which Felix promptly threw a ton of sand out of). It caters for children from birth to 4 years old. Gina (the lady who runs the group), provides different activities to encourage sensory play, sharing and turn taking, fine and gross motor skills. Felix had an absolute ball. He did a painting and played with some toys, but he really enjoyed the singing time and enthusiastically shook his little pom-poms to the music. The whole group lifted up a parachute and some of the kids crawled underneath and others helped to lift it up and down. It was so cute to watch all of their different reactions.

Cuddles with Bekah
I got to catch up with all the Mums again, which was fantastic. It was beautiful to see them all with their kids and watch them interact with these little ones they love so much. Anyone who thinks that children with Down Syndrome are not worthy of life needs to come to this group and watch these children play. They are intelligent, attractive, funny, determined, loving kids who could melt the heart of the most negative person. I am proud of each and every one of them!

 I encourage everyone to celebrate people's differences. Look at your own family; not every single person is exceptionally good looking with a genius IQ and an enormous bank account (in my opinion some people that are all those things aren't always particularly nice people). Look into people's hearts and appreciate the little things which make people wonderful. You might be surprised at what you find.

Parachute Fun
I was so sad to leave Early Intervention on Wednesday, but Felix and I had to press on to our next appointment. We are so thankful to everyone who was there and for welcoming us again even though we don't get to attend very often. I bundled Felix back into the car and we headed into the city for his appointment with the Ear, Nose and Throat Specialist. Bekah came with me, which was great because she kept Felix occupied while we waited for his name to be called. Felix crawled around and sat in front of other patients, blowing them kisses and waving to them. He's such a social little person.

The Specialist was lovely. He was very gentle with Felix and told me that Felix's ear canals are exactly the size they should be for a child his age (not sure why so many Doctors have complained that his ear canals are too narrow for them to see anything). His eardrums are at a slightly unusual angle, but he could see them easily. He did a test which showed that there is fluid sitting behind his eardrums, causing the infections, so he will need to have grommets put in. I was hoping to avoid that, but I understand that it will be much better for him not to be getting infections all the time. We should be able to get the surgery done in the next few months.
Just too cute!

After seeing the Specialist, Bekah took Felix and I to her work for some lunch before our long drive home. It was great to catch up with her for a while. We really miss our girls, so we grab any opportunity to see them. After lunch, Felix and I started our four hour drive home. There was a lot of traffic on the road and some rain which made the trip less than ideal, but we still made it home in good time. I didn't see any kangaroos, even though it was dusk, and the only close call was with a fox but thankfully he could run fast! I must admit it was good to be home. I really missed Nate and the boys, and Felix couldn't wipe the smile off his face when he saw Daddy and his brothers.

Fast forward to now (Friday) and I have to brag.... Felix took a couple of steps today! We're so proud of him!

Thursday, 19 July 2012


So Handsome!
Tuesday started off bright and early. I had booked to go in and have a Mammogram and I was picking up our eldest daughter, Amy (nearly 21), on the way to my appointment and had nearly an hour to drive. Felix and I had to get ready quickly and race out the door.  There are a couple of women in my family who have had breast cancer and some questionable cysts, so I thought it was pretty important at the age of 41 to go and get checked out myself. I strongly encourage anyone who has been putting it off to go and do it. A couple of people had told me that the Mammogram was painful or at the very least, uncomfortable. I was in and out of there in about 5 minutes and I can honestly say it wasn't either painful or uncomfortable. Go and get one done, ladies!

While I was at my appointment, Felix went with Amy to get some breakfast. It was so cute, when I arrived at the cafe, to see him sitting on her lap sharing her poached eggs on toast. Felix doesn't get to see Amy very often, but it was just like he'd only seen her yesterday. He looked totally at home cuddling her and 'talking' away. I love that they have such a strong bond even though we live so far away. It really touched my heart and set a great tone for the whole day.

Lunch with Amy
I was lucky enough to spend most of the day with Amy and Felix. Being from a small town, I don't get a chance to go shopping much as we don't have many stores here and end up doing a lot of it online. I had a list of a few things to get at the shops and am pleased to say I was able to find everything without spending much money at all. Amy happily carried Felix around because she wanted to cuddle him rather than put him in his pram. I'm pretty sure her arm would have been aching the next day. He loved it and was totally content to be in her arms, looking at all the new sights.

At lunch time, we met up with Amy's boyfriend and our eldest son, Daniel, and his fiance. It was the first time I had seen Daniel and Cate since their engagement, so it was lovely to see her beautiful ring and to talk weddings for a while. It was so special to be with them all and catch up. Felix loved it as well. He was so good. He sat in his pram and ate his lunch (and then tried to eat everybody elses). He loves food, that boy! We had a slight mishap when the lid came off his cup of juice and emptied all over him. Oops! I didn't bring any spare clothes for him but had just bought him a couple of things in a (much) bigger size for next year. I had no choice but to put those on him. He looked pretty hilarious... you could barely see his hands and I had to roll the bottom of his pants up about 3 times! Thankfully it happened just before we left, but we rushed out in case we bumped into anyone we knew. 

Big kisses for Amy in the
middle of the shops
After a fantastic day with our beautiful girl I took her home and then made the drive all the way back to my parent's house. I gave Felix a quick bath to wash away the leftover juice, fed him his dinner and got him ready for bed. My Mum had a small surgery that day, so my Dad offered to put Felix into bed for me so I could head out for my next appointment. Felix was playing happily with Papa when I left. I'm not sure who was enjoying it more.

What followed was an incredible night. I drove back into the city (again) to meet up with 6 of the other Mums, from Felix's Early Intervention group at the Down Syndrome Society, for dinner. I feel a little bit emotional as I write this, but find it difficult to express in words why it meant so much to me. Each of these ladies all have a child with Down Syndrome the same age (or very close) to Felix. We are all about the same age as each other as well. Although all of our stories are different, we share a common bond. We just 'get' each other. There is an understanding when you speak to another parent of a child with Down Syndrome, that you don't share with anybody else. 

Trying on crazy hats
One thing which really touched me was the joy we all had when we talked about our children. Every single one of us are so proud of them. Some of these Mums have had to deal with horrific health issues with their precious little ones, but there was no complaining; just happiness that they had got through previous surgeries and a resolve to get through anything the future will bring. These are some amazing women. I had tears in my eyes when I heard about all the milestones the other kids had reached since I last saw them. One little boy did nothing but lay on the floor last time I saw him because he has such low muscle tone (among other health issues). To hear that he is now 'Commando crawling' across the floor and dragging himself up onto things was the most amazing news!!! I felt so proud; he could have been my own son! 

I can honestly say I could have listened to them all; and talked about Felix all night. It meant so much to me that the girls gave up a night at home to get together with me (and work around my crazy schedule). Thank you so much ladies. You all inspire me to be a better Mum. I look forward to many more get-togethers. 

Wednesday, 18 July 2012


I love this face
Felix and I have had the most amazing three days in the city. There is no way I can fit it all in one blog or I'd be writing all night, so I might break it down and write about a day at a time.

On Monday, Felix and I left home at about 8.30am for our four hour drive. I timed the drive so that Felix would have his morning sleep (usually 2 hours) in the car on the way. That didn't happen! However, he was an angel; he didn't make a sound for the whole four hours. He happily watched his Play School dinosaur DVD, and although his eyes got very heavy a couple of times, he didn't give in. I was really worried because I knew he had a Speech Pathology appointment at 2.30pm and I was sure that by then he would just collapse and fall asleep on the floor and it would be a waste of a visit.

We got into Adelaide at 12.30, which was two hours before Felix's appointment. We were close to the Down Syndrome Society, so I decided to stop by there for a visit. The beautiful Gina, who does Early Intervention with all the kids up to 4 years old, very graciously gave up some of her time to stop for a chat with us and a play with Felix. I couldn't believe how much energy he had after having no sleep since 6.30am! He had the whole Early Intervention room to himself which he thought was fantastic. He spent a lot of time in the big ball pit, and did some showing off with his signing and showed Gina the actions to 'Rock a Bye Your Bear'. It was a lovely way to pass the time.

Puzzles with Granny
Felix was still awake when we arrived to his Speech Pathology appointment. His eyes were all puffy underneath and were so watery (very common in children with Down Syndrome, especially when they're tired). I was certain he would lay down on the floor and refuse to do anything the Speech Pathologist wanted him to do. True to form, Felix pulled out his charm and interacted beautifully with the Speech Pathologist. He wasn't quite as energetic as usual, but he made sure that he showed her the way he communicates, through signs, gestures and a couple of words, and she was really pleased with him. She has worked with quite a few children with Down Syndrome so she was able to give me some really good suggestions to encourage even more communication from Felix. It was a really positive experience for him, and also for me. I feel like we have a great plan in place to help Felix improve even more with his communication. It's really exciting!

The Speech Pathologist suggested getting an ipad for Felix. She said it would definitely work as a communication tool for him and be really beneficial, so we'll be looking into getting one as soon as we can. If anyone can suggest any good basic programmes for little ones, I'd love you to leave a comment. I have absolutely no idea where to even start looking.

Lunch time
After the Speech Pathologist, I continued to drive for another hour to get to my parent's house. Felix was asleep within a few minutes of being back in the car. The poor little guy was exhausted. He had all of his energy back when we arrived there and was so excited to see his Granny and Papa. He had a big play with them and spent lots of time singing songs. He ate a massive dinner that Granny had cooked for him and then fell asleep the second I put him to bed. I grabbed the chance to have a catch up with my Mum and Dad which I really enjoyed because I don't get to see them often. By this stage I was quite exhausted too. I had driven over 400km and been up since early in the morning. Needless to say, I was asleep when my head touched the pillow.

Stay tuned for Tuesday's adventures....

Sunday, 15 July 2012

Ready to go!

Still sleepy!
Well tomorrow is the first day of my crazily busy three days. Felix and I will set off early tomorrow on our four hour drive into the city. As soon as we get there, Felix will have to go straight to his Speech Pathology appointment. He usually travels really well and because of the time we'll be driving, hopefully he'll sleep for a couple of hours so he'll be bright and cheery for his appointment. Fingers crossed we have a nice, easy drive and don't encounter any kangaroos on the road (or stupid drivers who are even worse!)

Felix was so funny today. Joel and Mel had little Noah laying on the floor in the lounge room to have some tummy time. Felix was patting him, saying "Ahhhh" like he does when he pats one of the dogs. He was touching his fingers and his little toes and really studying him. All of a sudden, Noah rolled over from his belly to his back and landed in Felix's lap. Felix dragged himself backwards so quickly to get away from him. That scary baby can move now!!! Just when Felix thought it was safe to get close, Noah has learnt something new. We were all clapping for Noah so, despite still being a bit shocked, Felix started clapping his hands as well. It was very cute!

Mmmmmm.... banana!
Hopefully I'll get to write my blog while I'm away, but I'm not sure how much access I'll have to the internet or how much time I'll have to write (hence why today's is very short...busy getting organised!)  If I don't have a chance to write, I'm sure I'll have lots of inspiration to write when I get home! I'm going to miss my hubby and my boys like crazy. I know it's only three days, but we're never apart so it's going to be tough. I'm looking forward to catching up with my parents and our beautiful daughters. I haven't seen them for so long, so that's the bit I'm looking forward to.

Friday, 13 July 2012

Visiting Daddy

Uncle Felix babysitting his nephew, Noah
Felix had a big sleep in this morning. He didn't wake up until 8am, which was great except that he had a Physio/Podiatry appointment at 9am. Needless to say, he had a very quick breakfast and I got him dressed as fast as I could. He always sits on the potty first thing in the morning; something which can't be hurried. He likes to spend a few minutes playing peek-a-boo through an empty toilet roll while he sits there and does 'his thing'. We did pretty well to be ready on time and even had a few minutes to dance around the bedroom to some 80's music which was on TV. Felix was doing huge belly laughs as I was dancing around. His laugh is music to my ears. It's always a magical way to start the day.

Note Felix's single palm crease (Simian crease) on his hand.
A unique trait of Down Syndrome.
The Physio had the parallel bars all set up for Felix to use this morning. He thought they were interesting and stood holding them for a while, but he couldn't quite get the concept of walking through the middle of the bars holding his hands on either side. He preferred to cruise sideways, just hanging onto one of them. Of course, having the attention of two pretty young therapists is always quite a distraction for Felix. He would prefer to crawl around and smile coyly at them rather than do the things they would like him to do. He always brings his best smiles to therapy and has the girls wrapped around his finger very quickly.

They were both really happy with him, and could see the benefits from him wearing the Happy Strap for so long. It has allowed his hips to stay in good alignment and because we put the strap on him before he could sit up unaided, it meant that he never go in bad habits like 'W' sitting (with his bottom on the floor and his legs bent back with his toes pointing behind him). Our homework is to do more assisted walking and to try and get him to push something like a trolley or a cart to encourage him to walk independently. The Podiatrist wants to see him again once he's walking so we can get some good, supportive shoes for him. Being extraordinarily flexible, people with Down Syndrome really benefit from shoes that will give extra ankle support as their feet can easily roll in or out.

Aaron was so excited that Felix fell asleep next to him
on the couch. He thought it was really special.
The hospital where we had Felix's appointment is close to Nathan's work (the local Police Station). Felix loves visiting Daddy at work. He'll probably enjoy it even more once he takes an interest in Police Cars, Uniforms and flashing lights; all those things little boys love. We decided to drop by for a quick visit today. As soon as we pulled up out the front of the Station, Felix started signing "Daddy". His face lit up as soon as Nathan opened the door and he held his arms out to him to be picked up.

As always, as soon as we got into the office, Felix lifted Nathan's ID from around his neck and put it around his own. Immediately after Felix was wearing the ID, he crawled out of the office and up the hallway. It's almost as if he needs to be wearing 'his ID' and looking official before he'll venture out of the office. It's so funny. I'm sure he thinks he's an honorary Police Officer when we're there. The funniest part is when he comes across an Officer walking down the hallway. He cranes his neck all the way up to see who this person is who is wearing the same uniform as his Daddy. Sometimes they get a smile, and sometimes a suspicious look. Guaranteed they all stop for a quick chat with him. It's a fun outing for him!

Thursday, 12 July 2012

Busy Week Ahead

Just want to kiss those lips!
Felix and I spend a wonderful morning catching up with friends at the Kindergym. For the first time ever, Felix crawled away from me and went and interacted with some of the other children without worrying about where I was. He is getting more independent which is fantastic. I spoke to a couple of Mums this morning who asked lots of questions about Felix and Down Syndrome. They were genuine heartfelt questions which meant so much to me. No-one was being judgemental, they were just wanting to be informed. Someone who knew a bit of sign language commented on the signs that Felix was using. She was very impressed with what he could say. Another Mum asked me different signs for things and then used them to speak to Felix. She even showed her 2 year old son how to say, "Thank You" and he signed it to Felix; it was the cutest thing!

Got his bling!
Felix has a lot of appointments coming up this week. Tomorrow he has to see his Physiotherapist. She is going to work with him on some new parallel bars they have to try and encourage him to walk. It will be interesting to see how he goes as it is a completely different form of therapy than anything he has done before. Hopefully he will think it's fun and will be feeling cooperative.The Podiatrist is also going to join us, which will be a first. Felix hasn't had his feet checked before. I'm pretty confident that he holds his feet in the correct position, but I'm glad he's having them looked at so if there are any problems we can get onto them straight away. That's the benefit from lots of Early Intervention with children with Down Syndrome. Any potential difficulties can be recognised and addressed early on to allow for the best possible future for that child.

Next week Felix and I will be travelling to the city for another couple of appointments. We have booked him in to see an Ear, Nose and Throat Specialist. We've had some concerns regarding his ears as most of the Doctors we have seen here have been unable to see inside them because his ear canals are so tiny. His hearing is really good and we don't want undiagnosed ear infections to scar his eardrums and then affect his hearing in future. He's had a fever on several occasions which Doctors have been unable to pinpoint, so we figured it's better to be safe than sorry and have him checked out by someone who specialises in that area.

Hanging with Isaiah
We are also taking Felix to see a Speech Pathologist who has done a lot of work with children with Down Syndrome. We're looking forward to drawing on her experience and double checking that we are on the right track with Felix. One of the best pieces of advice we have been given, since having Felix, is to draw on every resource available to ensure that he receives the best possible therapy. This Speech Pathologist comes highly recommended and we're excited to see what she does with Felix.

Next Tuesday night I am going out for dinner with a group of the Mums from Felix's Early Intervention group (from the Down Syndrome Society). All the Mums are the same age as me and we all have a precious little one with Down Syndrome who are the same age as each other also. How awesome is that? The beautiful thing about this group of girls is that we can all relate to each other. Our children all have different health issues and are at different stages of development but we get SO excited for each other when our children reach a new milestone or overcome certain health problems. We share a beautiful common bond and are incredibly proud of each and every one of our gorgeous babies. I feel sorry for everyone else dining at that restaurant next week because we're going to be one very talkative bunch!!

A Felix specialty..the crazy face :)
The highlight of next week is certainly going to be attending Early Intervention at the Down Syndrome Society on Wednesday. Felix and I have only been able to go to one before because we live so far away, so I can't wait. All the kids are the same age as Felix, and I've been watching them all grow up via photos on Facebook. It's been so long since we were there last that I can't wait to scoop them all up and snuggle them. I feel like they are all family and although I've barely had any 'face-time' with their Mums, I feel so close to all of them. We have shared so much through the lives of our gorgeous kids. I really feel so privileged to have had a child with Down Syndrome so we could become part of this incredible extended family. Never have I met such patient, loving, strong, and encouraging people in my life. I feel blessed!

Tuesday, 10 July 2012

Out of the House

Changing the Channel
Poor Felix hasn't been out of the house for over a week. First his brothers were sick, then him and then the rest of us. We're so lucky he is such a contented little man otherwise he would have been going stir crazy since he's been feeling a bit better. The funniest little things keep him happy. He still loves playing with his strings of beads; he will either have them around his neck or be banging them against something. He will 'read' books for ages, especially ones with pages with touch and feel textures. He loves singing so much, so we spent a large part of today singing and doing actions to songs. He has learnt some new ones as well. Just like signing, he concentrates so hard on learning new actions and will mimic what I do. Sometimes he does an action perfectly straight away and other times he will keep trying until he gets it. He is very determined.

Still a bit snotty
I had to make a quick trip to the Pet Store today, so I took Felix with me to get him out of the house for a few minutes. We took some extra time to look at some of the animals there. There was a whole aviary full of yellow and green budgies which Felix thought were pretty amazing. His eyes were big and wide and he was signing the word "bird". He wasn't quite sure where to look because there were so many of them. Next to the birds were some big rats in a cage. Felix wasn't too sure about them, which was OK by me because I thought they were pretty disgusting myself, so I was happy to move away from them. Lastly, we looked at a massive big barrel of goldfish. I wanted to show Felix the sign for "fish" but I needed two hands and because I was holding him I didn't have two hands free. We'll have to work on that one another time. I think Felix enjoyed having a little bit of time out of the house.

Cuddles with Aaron and signing
Despite having been so sick this week, Felix is doing really well with his potty training still. I've only had to change a dirty nappy twice in the past week because he did his business before I was able to get him up from his morning nap. Apart from that, he is now signing "toilet" to us if he needs to do a number two. We have to be watching for it because, like I said before, he can't verbally shout out, "Hey..I need to go!" He does pretty well to make eye contact with us before he signs "toilet". He's such a clever boy... as soon as we sit him up on the seat, he does what he needs to do; has a bit of a laugh when I tickle his toes or sing some songs to him and then when he's done he holds up his arms to get off. He's never on there for more than a few minutes. We're very proud of him!

Monday, 9 July 2012

RIP Ryan

I woke up to the really sad news this morning that little Ryan had passed away. His last breaths were taken while he lay in the arms of his Mummy and Daddy and surrounded by those who love him.

My heart breaks for his family. I can't even begin to imagine the pain they are feeling today, but I am so thankful for the amazing memories they have been able to create in the last few weeks with him.

Ryan's family didn't care that their little boy had Down Syndrome. He was their son who they loved unconditionally. They looked forward to watching him grow and learn and were excited for his future. Sadly, his heart was too sick and despite everything the Doctors and Surgeons could do, it wasn't enough to save him.

I really am at a loss for words today. I don't think I will ever understand why those so young endure so much pain and are then taken from us anyway. Heaven must need them more.

Sending much love to Diane, Erik and their family. Rest in Peace brave Ryan. You will live on in our hearts x x x

Sunday, 8 July 2012

Much Better Today

Feeling much happier
What a brilliant start to the day. To hear Felix through the baby monitor, not crying, but having a happy little chat to himself was the best beginning to any morning we've had in almost a week. When I went into his room to pick him up he had a beaming smile and although he still looked a little snotty, he looked just like our little Felix from a week ago. What a relief!

It was almost as if Felix wanted to make up for all the food he hasn't eaten in the past 5 days, just for breakfast this morning. He wolfed down a big bowl of porridge and yoghurt and then munched on some dry crackers. He drank a bit (still not as much as I would have liked), but it was a good start. His temperature went up a little bit in the middle of the day and he had a bit of a quiet moment, but apart from that he is so much better.

Chillin watching TV
When I was holding Felix in my arms yesterday, completely floppy and burning hot, it made me cry to look into his little face. Not tears for Felix; I know what he is sick with is just par for the course when you have a toddler, but tears for those I know who have had to hold their babies in their arms knowing they will never get better. Beautiful babies with Down Syndrome who were born with heart defects so serious, they were unable to be fixed. I thought of little Ryan (whose Mum is making a bucket list) who is the same age as Felix. The latest update is that he may only have a week left; in fact the other night his oxygen sats dropped so low the nurses quickly urged Ryan's Mum to pick him up in her arms because they thought it was time (she doesn't want him passing away in bed). Ryan is one of so many little soldiers with Down Syndrome who fight long and hard to stay with their families until they can't hang on any more. It doesn't get any easier each time I hear about another little one losing their fight for life. It's the hardest part of life within the Down Syndrome Community.

It is, however, a reminder to hold those we love close. It makes me cherish Felix that little bit more. He could so easily have been born with a heart defect that was inoperable, but we were the lucky ones. I never forget the Paediatrician in the Neo Natal Ward when Felix was born telling us, "You know that the name Felix means Lucky, don't you?"  It makes me more determined to celebrate every day of Felix's life. To celebrate the things he can do and to enjoy watching him change people's perceptions of Down Syndrome!! You should have seen the nurse's face at the hospital when I said he uses the potty... you could have knocked her over with a feather. Children with Down Syndrome can't toilet train early!?!?  Go Felix!

Daniel when he was the same age as Felix.
Now he's getting married :)

After a very ordinary week, we had some wonderful news a few nights ago. Our eldest son, Daniel, proposed to his beautiful girlfriend, Cate. Unfortunately, we were all too sick and had to cancel a trip we'd planned to go and meet Cate's parents and spend some time with them. We look forward to an exciting (and healthy) month ahead planning an engagement party and celebrating with them all then.