Thursday, 25 July 2013


Little monkey
Felix had his first visit with his new Podiatrist and Physio today. They were extremely happy with the way he is sitting, walking and climbing and will see him again in six months for another review. The Physio encouraged me to keep taking him to Kindergym and continue encouraging him to walk on different surfaces, like we have been. The Podiatrist had a couple of students with her, and she took the opportunity to show them just how flexible kids with Down syndrome can be. She pushed Felix's foot back until the top of his toes almost touched his shin bone. He thought it was hilarious! I pointed out his Sandal gap between his big toe and the next one. I'm sure another toe could fit in that gap. He often uses it to his advantage, picking things up with his toes. Felix enjoyed the whole experience of having the undivided attention of four therapists.

Love that smile
Previously, in the waiting room, Felix kept all the patients entertained with his antics. He discovered, at our last Doctor's appointment, that he can open the automatic doors by standing in front of them. I made sure I sat as far away as possible from them today, but Felix ran as fast as he could to try and escape, doing his loudest 'chicken laugh' as he ran. It's the funniest laugh, and always gets everyone else laughing as well. I kept catching him and bringing him back to the seat and then he would run off again. After he got bored of that, he did laps of the waiting room, stopping to say hello to all the people and give them a wave and a smile. When Felix was finally called in for his appointment, there was a collective "Awwww", from the people in the waiting room, with one lady even saying, "Don't take him away, he's keeping us entertained". I love seeing how Felix can make people smile.

Thankfully, I was able to postpone Felix's visit to his new Paediatrician (one less appointment this week). A letter came from the hospital, this week, with an appointment time for Felix to see the Neurologist at the hospital so I'll take him to that first. Felix will also have his Surgical consult and after both of those hospital appointments, I'll take him to the Paediatrician. I'll have more information to give him by then. Hopefully it will all be positive.
All rugged up for the snow

It has continued to be so beneficial to Felix having Noah visiting for a week and a half. He has really increased in confidence, to the point where he cuddles and kisses Noah all the time. Today, he held Noah's hands while they both danced to some music. It was completely adorable! Another time, I found them inside the little cubby house, giggling at something they both found hilarious. It was their own private joke but, obviously very funny! There's nothing much cuter than hearing a pair of little giggles. They are going to miss each other so much when Noah goes home. I'm going to have to find lots of things to keep Felix busy.
Cuddles for his little nephew

Felix and Noah got to share a special 'first' this week (a first for me as well!) We all saw snow for the very first time! We looked out of our lounge room window and noticed snow all over the mountains. After screaming with excitement, everyone rushed to pull on warm jackets and shoes, and we all piled in the car to go for a closer look. It was amazing! We even saw snow piled up high on the back of a sheep, which was quite humorous. There were kangaroos bounding everywhere, wondering what was going on, and all the sheep in the paddocks were huddled together. Noah and Felix were all rugged up when we got out of the car. They both started walking on the slippery ground and didn't look terribly happy when they fell on their bottoms on the cold snow. I don't think they appreciated the snow quite as much as the rest of us did, but I'm so glad they got to see it together.

Friday, 19 July 2013

Uncle and Nephew Fun

This is how you do it, Noah.
The past two weeks of school holidays have been extra busy with lots of visits from people, much to Felix's delight. He loves having a house full. There have been plenty of people to show off to, and for him to play with.

We have Joel, Mel and our gorgeous Grandson, Noah, staying with us at the moment. Felix and Noah are completely adorable when they play together. Felix has always been a bit wary of Noah, and has often avoided him, but since they have been here, they have played beautifully together. They have been having lots of tea parties with Felix's tea set. The other day they each had a teacup and a spoon. They stirred their 'cups of tea' with the little spoons and then fed it to each other. It kept them occupied for such a long time and was the cutest thing. Later, Noah was 'chasing' Felix around and around our big coffee table. They were both laughing at how hilarious they were. When Felix had enough, he quickly jumped up onto the couch (something Noah hasn't perfected just yet), to escape.
Introducing Noah to the pony

I love watching Noah follow Felix around. He thinks his Uncle is great, and likes to copy lots of things he does. I've said it before, but I'm looking forward to watching their relationship develop as they grow. Right now, they are just like any other toddlers, with the youngest looking up to the oldest. In time, however, Felix will be the one looking up to Noah and wanting to do everything he does. Noah will be a wonderful encouragement to Felix, and will challenge Felix to try new things. I'm sure theirs will be a very special relationship. The teaching will go both ways, I'm sure. Felix will teach Noah tolerance, patience and understanding but, most of all, he will hopefully teach Noah not to take life too seriously; to laugh at himself and have fun!
Noah meeting Larry

Last Monday, I took Felix to see the Ear, Nose and Throat specialist for his post-operative appointment. He has already had one ear infection since the surgery in May, so I wasn't at all surprised when she said he had another one. He is so tolerant and never complains of pain. We usually only know he has an ear infection if he gets a fever, and generally not even a high fever. His left ear looks good but, as usual, it's his right one causing problems. I'm not quite sure how things will go in the long term, but I have a feeling that right tube is going to have to be replaced many times. The ENT is pretty sure the infections in that ear are affecting his hearing and she wonders if it may be inhibiting his speech a bit. At his next visit with the Paediatrician, I will be asking about another hearing test (he hasn't had one for ages) and, even then, it was done in quite a noisy room so I don't know how accurate the results would have been.

Next week, we meet Felix's new Paediatrician for the first time. He also has his first appointments with his new Physio and Podiatrist. I'm trying not to feel anxious, but it's never easy changing Doctors and therapists. It's almost like starting from scratch all over again going through Felix's entire medical history. We've had several negative experiences (especially with Doctors), so it's always a bit of a 'hold your breath' moment until we seen how they treat Felix, and how they relate to us, as parents. The majority have been great, so I have my fingers crossed that we will be really happy with his new team, and they will be a real asset to Felix's development.

I have a few things to discuss with the Paediatrician. Felix is months overdue for his MRI to check on his hydrocephalus (fluid on the brain). I'm not worried about what the results are going to be, because I'm sure they will be fine, but it's always nice to get the results back with an 'all clear until next time' result. I'm sure we will have the usual debate about Felix's weight, and whether or not there is something sinister causing him to be so tiny, and not gaining weight. I'm very confident that Felix is perfectly healthy and is just small by nature, just like his other siblings at the same age, but I have a feeling Felix will be referred to a specialist anyway. I don't need to worry about discussing his possible hernia, as we have just received a letter from the hospital with an appointment time to see the surgeon, to discuss what is going to be done (if anything) to stop Felix's testicles from lifting up into his groin all the time. It's the same surgeon Isaiah and Aaron had for their inguinal hernias, and hydroceles, so I'm really happy. He did a brilliant job with their surgeries.
Open wide...

Felix continues to delight us with his placid nature, hilarious character and sense of humour. He always seems to know the right time to give us cuddles, or do something funny. If I'm feeling a bit upset, he will come over to me, brush the hair out of my face (saying, "Ahhhhh!), and then look me straight in the eyes as if to say, "What's up Mum?" Sometimes he will pick up my hand, and the hand of the family member next to me, and put them together. He will also push our faces together to give each other kisses. He has a huge look of satisfaction on his face afterwards, like all is well with the world! Yesterday, in the car, a song came on the radio which reminded me of the day we were told that Felix would likely pass away before he was born. I said to Nathan, "Do you remember the day we drove home from hospital and this song was on? I was crying my eyes out". I turned around to look at Felix, in his carseat, and he was signing 'crying'. I thought he was watching his DVD and didn't realise he was listening. After he signed, 'crying', he gave me a huge smile. It reminded me, once again, what a miracle Felix's little life is. He had so much going against him and yet, here he is, a bundle of two year old energy who brings us joy every single day. He was meant to be!

Friday, 12 July 2013


Splashing in the puddles....
They say that imitation is the highest form of flattery. If that is the case, Felix makes us all feel really good. He has been hilarious lately, watching things we do and then copying them. The weather has been freezing cold, so when I sit down on the couch, I pull a blanket over my legs. Felix climbs up next to me, sits nice and close and pulls the blanket up over his legs too. After he does it, he looks at me as if to say, "Did you see that? I did just what you did!"

He has been the same with his big brothers and their friend, who is visiting at the moment. Tonight I heard, "Mum, Mum, come and look at this!" I walked into the lounge room to see both Aaron and Isaiah sitting on the couch with their feet up on the coffee table. Upon closer inspection I saw Felix, flat on his back on the couch, right in the middle of them, stretching his legs out as far as he could so they could reach the table as well. Whatever his brothers can do, so can he. Later, their friend sat down, folded his hands together and leaned forward. Felix watched him for a few seconds, climbed up next to him and folded his hands. He then leaned forward and look towards him for his smile of approval. So cute!

More puddles
Felix has always loved being the centre of attention and he has recently discovered a new way to captivate a crowd. He has a little box of musical instruments, which he enjoys making lots of 'music' with. Yesterday, he handed each of the boys an instrument and chose a tambourine for himself. He made sure the boys were all looking at him and then he began to play the tambourine. The boys followed suit and started to play their instruments as well. Felix smiled a huge smile and then suddenly stopped. The boys also stopped. Felix grinned even bigger and started playing again, as did the boys. After about ten seconds he stopped again, and so did they. He loved it! He knew that anything he did, they would do as well. It was so gorgeous to see teenage boys laughing along with a very entertaining two year old. It's moments like that I cherish!

Tonight, after Felix finished dinner, he said "Ta" and held out his cup to Aaron. Aaron took it and said, "Thank you, Felix". That was all the encouragement Felix needed. He then picked up a fork and passed that to Aaron as well, followed by his plate. I could see that he was being helpful by clearing the table so, I held my breath, and handed him a ceramic bowl to take to the kitchen and give to the boys. He carefully carried it and handed it to them, and did a careful job of carrying a glass as well. It was great to see him participating in clearing the table, and showing that he knew what needed to be done after dinner.
...even more puddles!

One of Felix's favourite things to play with has always been his tea set. He loves putting pretend food on his little plates and pretending to eat it, saying "Yum, yum". He also really enjoys making cups of tea. If we're lucky he makes one for us as well. After he hands us a teacup, we have to make the appropriate slurping and appreciative noises as we pretend to drink it, or he'll keep looking at us until we do. Aaron and Isaiah's friend learnt that the hard way tonight by being stared down by Felix until he 'drank' his cup of tea. Felix showed his approval with a big smile.

I was so excited this afternoon. I was playing peek-a-boo with Felix by covering my eyes. Felix grabbed my hands, pulled them away from my eyes and said, "Boo!" Yes! He really said the word, "Boo!" He said it over and over again as we continued to play the game. I was so proud of him! His speech is really starting to develop which is super exciting!
After all those's bath time!

Today, we had the opportunity to meet a family we had only known through Facebook.  We have the awesome connection of having sons with an extra chromosome. Incredibly, they happen to have family in our tiny little town, who they were coming to visit, so it was a perfect opportunity to meet face to face. Their son is much older than Felix, but reminds me so much of him. They are both really tiny, and each have an hilarious sense of humour which I'm sure will get them a long way in life! I really love meeting people who are walking a similar path to us, and to see older kids with Down Syndrome is always wonderful; it's like having a glimpse into Felix's future. If Felix is any bit the great kid the little boy I met today is, I will be so happy!

Wednesday, 10 July 2013

New Friends

Felix has made a new friend since our move and, no, I'm not talking about Larry the sheep (although he thinks he's very cool). There aren't a ton of little ones here in town so, the little girl up the road (age 4), thinks it's pretty awesome that Felix has moved in. She told her Mum, yesterday, that she wanted to play with Felix so we organised to go up to the playground. His new friend is exactly the sort of child he used to be terrified of; she is very busy, with lots of energy, and she loves to touch him and talk to him. The fantastic thing is that Felix has been totally OK with that and doesn't seem bothered at all, which is wonderful. I watched him copy her as she climbed things. He had difficulty with some things, but successes in others. It's great to see him being challenged by others and see him try to stretch himself and his abilities. It's also lovely to see his little friend learning some sign language and using it with him... so adorable!

Felix can now successfully climb up the stairs on the playground, by holding the hand rail. He walks across the little bridge and then climbs another couple of steps to the top of a twisty slide. The slide isn't a super fast one, which suits Felix perfectly, because he is able to slide down all by himself without me holding onto him at all. It brings tears to my eyes to see him do something completely independently, just like other kids his age. The huge smile as he slides down tells me that he thinks he's pretty clever too!

Yesterday I met with a worker from Disability Australia (formerly NDIS: National Disability Insurance Scheme). She was here for 2 1/2 hours. I had to answer a lot of questions about Felix's needs as far as mobility, development, basic care etc etc. Most of the questions required a response of 'Needs a lot of help', 'Needs some help' or 'Needs little help', as compared to other kids his age. She and I were both laughing at one point because my first instinct was to answer with 'Needs little help' when in actual fact, compared to 'typical' kids, he needs a lot of help. All of our other kids are grown up now so I have completely forgotten what is the norm for kids Felix's age. To me, Felix is just Felix and he seems to be coping just fine. It's not until I really stop and think about it that I realise I do a lot more for him than I had to do with the other kids. They were talking in sentences, fully toilet trained, dressing themselves, running and jumping. Caring for Felix has become my reality and it's really strange to have to focus for over two hours on what Felix 'can't do' rather than what he 'can' because to me, he's amazing!!  Unfortunately, focussing on the negatives is necessary sometimes for him to be able to get the support he needs to give him the best future possible.

The local playground
Felix and I have been house bound for nearly a week because our car has broken down. Thankfully, there is so much to keep him occupied here. We have been making the most of the small amount of sunshine, and going for lots of walks. As soon as I ask Felix to get his shoes, he signs 'outside' and 'sheep'. It has become part of his daily routine to go for a walk and pat the sheep. I showed him how to feed them some grass but I could tell he much preferred just to pat them. We have also spent a lot of time in our front yard watching the traffic go past. Although our back yard is much nicer than the front, Felix really loves watching the trucks drive by filled with sheep. Some are pulling big trailers with houses or huge machinery on the back and Felix stares with his huge eyes, signing 'big truck' until they are gone. Some of the really slow trucks wave at him as they go past; he thinks it's awesome. Fresh air, animals, cars and trucks... what more could a two year old boy want?

Monday, 8 July 2013

It's Been a Long Time!

Felix's buddy, Larry the sheep
It's been such a long time since I wrote my last blog. I have missed it SO much! I've really realised how much of an outlet it is for me and how much I enjoy sharing Felix's life with you all. I have finally got some internet but it is very limited where I am now, so I will have to ration it out so I can write my blog regularly again. A lot has happened since I last wrote, so be prepared for a lot of reading.....
Showing big brother, Daniel, the sheep

I have spent all this time trying to change people's perceptions of those with Down syndrome, when I also needed my perceptions changed. We have recently moved to a tiny little town in the Mid North of South Australia. I wasn't sure what to think of moving firstly, from a big city to a town of 25,000, and then to a tiny farming community, with only 65 people in close proximity to where we live. I admit to being worried about how people would react to Felix (and to me) when they found out he had Down syndrome. I'm ashamed to say I had the stereotype 'small town must mean small minded' in my head. Wow! Was I completely wrong! I have never met warmer, more accepting people, than those here in this tiny little town. People have welcomed Felix with open arms, with one farmer even calling him his 'little buddy' already, after Felix climbed up into his car at the local store. I have heard about several fundraisers (past and present), raising money for kid's cancer research and other fantastic causes, including a family who have fostered kids with disabilities. To say I am completely overwhelmed is definitely an understatement. People haven't shown the slightest bit of negativity towards Felix and, those who didn't know what Down syndrome was, have asked questions to inform themselves and understand Felix a little better.
Morning walk in the fog

We attended the local playgroup for the first time last week. They were thrilled to have Felix there and he was so content to join in with the other children (a group of about 8 kids, although usually more). He was completely relaxed and had a wonderful morning. The Mums were the loveliest group of ladies, and I felt totally at ease with them. I am looking forward to catching up with them each week. I asked if they would mind if some of Felix's friends from his early intervention class at Down Syndrome SA came up for a visit one day, and if we could use the playgroup facilities. They thought the idea was great and said we should make it a playgroup day so they could all meet some of Felix's little mates. I'm totally gobsmacked, in the best possible way!!
Watching the kids at playgroup

Since we have been here, Felix and I have been driving to a town 38km away each Friday, to attend Kindergym one week and story time at the library, on the alternate week. I can't believe how many children attend each of the sessions, or how well they are run. The Kindergym is set up in the school gymnasium and has a whole heap of different activities catering to the ages and abilities of all the children. Felix's favourite things have been the giant parachute which is lifted into the air and he can play underneath and, for the very first time, he learnt to climb a ladder! Once he did it the first time, he had to do it over and over again!! Even when his leg slipped through the bars, and obviously hurt, he got straight back on it and tried again. I was so proud of his resilience and, by the time the session finished he was doing it independently.
Visit with sister, Bekah

As far as therapy, Felix received a very comprehensive report from his previous team of therapists which has been handed to his new team so they know where he is at, and what they need to work on with him. I was so pleased with what they wrote; they had obviously been paying attention to the things Felix could do successfully and the things he struggles with. The report was very balanced and positive which was great!

He has already been receiving weekly visits from a lady from 'Learning Together at Home' (the same people who ran the special needs playgroup near our old home). She comes to our house each Thursday afternoon to play with Felix, and brings toys, puzzles, games etc to stimulate his development and challenge the areas he needs help in. The first week I told her he needs help strengthening his hands, so she brought some home made playdough for him to play with the next week. It was a sunny afternoon, so he sat out the front of the house and played with it for ages. I already appreciate the effort she has made to learn what would best benefit Felix. 
Cuddles with Isaiah

The thing Felix likes best about living in the country is being outside. There is so much for him to explore! There are horses, sheep, chickens, cows, and we regularly see kangaroos when we're driving the older boys to school. He has made friends with a couple of local sheep and likes to visit them most days. We have been going for lots of walks which have been good for his coordination and balance. He has learnt to navigate himself across different surfaces; long grass, tree branches on the ground, pot holes on the road, gravel etc. He is walking so confidently and independently. His "I can do it myself" attitude comes in to play a lot. If I try to help him step over a branch, for example, he will quickly let me know that he doesn't need my help, by pushing me away!
Love my little guy x x x

Since being here, Felix has learnt to say a few more words. When signing 'sheep', he now says "ee" for sheep. He often says "help" while he is signing it, and he is starting to verbalise some of the sounds in several other words. He is playing with other kids completely comfortably, and I haven't seen any of the anxiety he used to show. All in all, I am so thankful for where we are living. It seems to be a perfect fit for Felix and I'm thoroughly looking forward to watching him grow and learn here.