Thursday, 5 December 2013

Looking a lot like Christmas!

Big Kindy boy
As usual, so much has happened over the past few weeks. With the busy-ness of the Christmas season/end of school year, the days just seem to fly by.

Felix starts early entry at Kindy halfway through next year so he was invited, with all of next years Kindy kids, to come and spend a day at the centre to experience what it's like to be a 'big Kindy kid'. He was a little bit apprehensive when we first got there, pulling his hoodie over his head as far as possible. It didn't take him long to settle and start enjoying all the activities there for him to play with. He spent some time in the library corner, did a drawing and a painting, and played outside. He even managed to climb a very tricky climbing wall on the playground. Eating was the only thing which Felix found a bit uncomfortable. He's starting to eat around other children in his small playgroup, but Kindy was a bit different because there were so many kids. We found a compromise and he sat at a table, by himself, away from the other children and was happy to eat there. I was pleased with that, because at least he felt comfortable to eat even though he could see and hear the other children. He has come a long way in that regard.
Clever at climbing

Unfortunately, Felix's immune system didn't cope very well with being exposed to a large group of children and, by the time he woke up the next morning, he was quite sick. His nose was snotty and he was pretty miserable. As is the usual pattern for Felix, his cold developed into croup. His breathing was laboured during the night and he had that awful barking cough. Nathan and I debated whether to take him to the hospital (38km away), but managed to get him through the night without needing to go. Thankfully, we always have Prednisilone on hand so we started him on that straight away so, by the second night, he was a lot more comfortable. I'm now dreading him starting Kindy because I have a feeling he's going to pick up every 'bug' that is going around and we're going to have quite a long period of sickness until his immune system gets stronger :(

Our clever little man continues to learn and develop. His speech is coming along in leaps and bounds. Recently I had a candle burning during a storm because I thought we may lose power. Felix pointed to the candle and said "ot,ot,ot,ot" and signed 'hot'. He said the same thing last night when he was looking through the oven door. He puffed out his cheeks and blew, like he was blowing out a candle, saying "ot,ot". We were watching the opening ceremony of the Special Olympics and Felix saw the fireworks. He smiled and said "tar, tar" (star) and said "gen" and signed 'again'.
Bit closer to Santa this year

A few nights ago, Felix pointed to his name on his drink bottle and said (phonetic) "X", which is his way of saying Felix. Nathan told me he thought he had read his name. Neither of us were 100% convinced, so we waited for about half an hour and then showed him something else with his name on it. Straight away he pointed to it and said "X" again. How awesome that he is recognising his name!!  He usually looks at photos of himself and says "X" as well, but yesterday he pointed at his photo and said, "me". I can't even explain how exciting those tiny little developmental milestones are to us. With every little bit of progress he makes, we are in awe of him!

Something very exciting happened this week. We applied to join a Facebook group where people with disabilities are matched with runners, who use them as their inspiration. Felix was matched within a day (the runners sometimes have to wait for over a month!) He now has a 'buddy'; a beautiful American girl who uses Felix as her motivation to run. Already we feel a connection with her and have fun exchanging photos and messages to each other. We can only hope that Felix inspires her as much as he inspires us! We're cheering you on Krystah-Jo!!

Merry Christmas chook
Felix is enjoying all the Christmas preparation. We have made lots of Christmas crafts; his favourites involve painting and making lots of mess. He loves the lights on the Christmas tree and has had some sneaky peeks into some of the gift bags underneath. We are looking forward to having all of our boys (and their partners) here for Christmas plus our extra 'adopted' son. We will be needing to pitch a couple of tents in the backyard to fit them all into our tiny house, so it should be a bit of an adventure. I'm thankful that, even though our girls will be away this Christmas, that they are together. I hope they have a wonderful day (even though they're working), and that they get to make some great memories together. Love you both and will miss you more than you know x x x
Snotty but cute!

I have to have a bit of a brag about a few of our big boys. We were proud to watch Joshua (17) graduate from year 12 a few weeks back. He has worked incredibly hard this year and we think he is amazing! We have our fingers crossed that he gets into one of the University courses that he's hoping for. Isaiah (15) got a great report for year 10 and we're excited for him that he has just got his first part time job as well. We watched Aaron (13) do a presentation for one of his year 8 subjects, this week. He did a fantastic talk, injected with some of his unique humour and, as a result, he got a really good grade for it. Proud of you all!!

Once again, thank you for stopping by to read my blog. I continue to be overwhelmed by the number of people who take the time to have a read and for all the messages of support throughout the year. I hope you all have a wonderful Christmas, and take the time to appreciate the little things in life that give you the most joy. Try not to get caught up in the chaos that is Christmas, but make sure you take a moment to put your feet up, take a deep breath and relax! I'm going to try and put all the worries and stresses of the year aside for the day, and enjoy watching the smile on Felix's face as he experiences the magic of Christmas as only a 3 year old can!  Much love x x x

Tuesday, 19 November 2013

Restoring Faith in Humanity

Having been the parent, of a child with a disability, for more than 3 years now, I've learnt to roll with the punches most of the time; to ignore the stares and ignorant comments, and to hold my head high even when it hurts. I've got to the point where, the majority of the time, I can switch off to those things and look positively into the future. However, this week I have been shaken to the core, and allowed anxiety and helplessness to creep into my heart and mind because of a single word on a tshirt.
Bigger horse this time

As many of you would have already read/heard via the media, a local store in our capital city of Adelaide had, displayed in their shop window, a shirt with the word 'RETARDE' in big, black writing. A lovely local lady, who has sadly lost her precious son (who had a disability), walked into the store, when she saw this
offensive shirt, and asked for it to be removed because it offended her and would offend others. Quite a reasonable request, one would think. Any understanding, compassionate person would apologise for the offense and remove the shirt from sale, citing an oversight at the pain it could cause people in the community with an intellectual disability, and their families.

What followed was a media frenzy. The manager of the store praised the two 'designers' who created the slogan, and refused to stop selling the offending shirt. He insisted it was a French word (although written without the symbol above the 'e') and meant to 'slow down'. Interestingly, I have heard from several French people since, who claim the word is often used offensively in their culture. The manager, in a radio interview, was quoted as saying, "You need to stop mollycoddling your children and get them to toughen up." Really? For starters, of course we would say to our children "Try to ignore people who call you a retard", but it doesn't mean it won't hurt, and to have it emblazoned across a shirt is insensitivity at its worst. He obviously has no comprehension of what it is like to live with an intellectual disability or to love someone with one.
Working hard at hydrotherapy

I have an adorable 3 year old, with Down syndrome, and every time we go out there are people who point, stare, elbow each other and whisper. Thankfully, he isn't old enough to notice that yet, but I'm sure there will come a time when he will. Yes, I will teach him to ignore people's comments and to look the other way if they are mocking him or being rude. I'll probably even teach him some 'come-backs', but that doesn't make it right for people to be able to ridicule him for their own pathetic entertainment. That's exactly what these shirts do. They have no positive value and have no place in today's supposed 'open-minded' and 'accepting' community.
Body painting?

The thing which upset me the most was reading the comments from people, supportive of the sale of these shirts. It was like a knife to my stomach to read the awful things written about people with intellectual disabilities, and the lack of support or concern shown by those writing in. I wonder if they would proudly wear the, equally offensive, words 'N**ger' or 'F**got' across their chest? Or would they somehow feel differently about those words? It frightened me to realise that there are still hundreds of people out there who think the word 'retard' is, not only OK, but funny enough to put on a shirt and walk around wearing it. It left me discouraged about the state of the world, and concerned for Felix's future.

Helping decorate the tree
Thankfully, after a couple of days of soul-searching, my faith in humanity has been somewhat restored. We received a message from a friend, telling us they had deleted someone from Facebook because of their comments regarding the tshirt. They don't have a personal relationship with anyone with an intellectual disability, but felt strongly enough (out of support for us), to take a stand. Several others; some of who are still working on eliminating the word 'retard' from their own vocabulary, showed their support by comments they made on news stories/Facebook or by sharing links supporting those with disabilities. I really appreciate that a lot of people I know, have stopped to reconsider the words they use and the effect they have on others. Thank you to all of you. I know that none of us are perfect, and we are all guilty of saying things without thinking sometimes, but the fact that this situation has made some people stop and think is a positive.

Next time you're about to use a racial slur, the words 'gay', 'fat', 'retarded' or 'spastic', or even just a criticism about someone because you don't like the way they look or act; STOP and think before you speak. Be thankful for the diverse world we live in. Be glad we're not all exactly the same. Give that person a chance.... who knows? They could be influential in changing your life for the better!

Monday, 4 November 2013

Riding Therapy

Felix's first horse ride
Felix attended his very first RDA (Riding for the Disabled) session (an hour away from our house), just over a week ago. I wasn't sure how he would go because he had never sat on a horse before. He had refused to sit on the 'pool noodle' when he had hydrotherapy, so I thought he would probably refuse to sit on the horse as well. He had a very grumpy morning, having to do food shopping with us before his riding lesson, and was in quite a mood before we even got there. To say I was a little apprehensive, is putting it mildly.

Everyone was very welcoming when we arrived, and we finally got to meet a Mum (and her gorgeous daughter who also has DS), who I had been speaking to on Facebook for quite a long time. Felix was fitted with a riding helmet (actually a bike helmet because his head was too little for the riding ones). He didn't like the fitting process much; it involved getting the strap really tight under his chin to keep him safe. The good thing was that once the helmet was on, nice and snug, there was no way he was able to pull it off again. After his helmet was on, we walked out to meet Felix's little horse for the first time. Felix started to get pretty excited when he saw all the horses and his grumpy mood disappeared and was replaced with a smile.
With his instructors

When Felix's horse was ready for him I helped him up onto it, and then the volunteers took over while Nathan and I watched from a distance. The goal of his first lesson was to get him comfortable with the horse, but not to overwhelm him by keeping him up there for too long. He was instructed to hold onto a little handle on the front of the saddle with both hands and not let go. The instructions were short and sweet. If you hold on, the horse will walk. If you let go, the horse will stop (which isn't as much fun). Felix hung on to the instructor's arm for the first minute or so, but it didn't take long until he did what he was asked, and held on to the saddle (only letting go to brush away the flies.... we will need to get him a net to wear over his helmet so they don't bother him). I felt so proud of him, sitting up on the horse, looking so grown up. I can't wait to see his riding develop over time, and see him get stronger core strength from holding himself up on the horse.
Doing some gardening with Shaun the sheep

Felix's speech is continuing to develop in leaps and bounds over the past couple of months. He has even started putting two words together sometimes, asking me yesterday for "more eat". Even though Felix has always been very vocal, chattering away with his own language, it is so beautiful to hear his voice when he speaks. It's almost as if I have never heard him before, so it's a whole new, very exciting experience.

Felix has always loved to 'count', often going up to all the people in a room and touching them as we count. He does the same with toys and will sometimes put each of his fingers up, one at a time, and make sounds like he is counting. Yesterday, Felix was walking up some stairs. As usual, I was counting the stairs as he took each step. "One, two, three....", and all of a sudden, Felix said, "Four" as clearly as anything!!! I think I actually screamed out loud. I was so excited as I cuddled Felix and told him how clever he was, and he had a very proud grin on his face. Another very cool thing is that Felix no longer needs to hold my hand when he goes up and down stairs. Most of the time, he is able to manage them without holding on to anything. His legs have certainly got stronger and his gross motor skills are improving all the time.
New haircut and a cheeky face

Playing outside is still Felix's absolute favourite thing to do. I spent the day gardening, a few days ago, and Felix and Shaun the sheep came out to the front yard with me. We have a huge gum tree alongside our driveway, and Felix likes to walk around it, picking up leaves and sticks and playing with them. While I was busy gardening, I looked up and saw the cutest thing.... Felix and the lamb chasing each other around and around the tree. Felix was giggling and running as fast as he could, and the lamb was kicking up its' back legs and rocking his head up and down, running after him. If only I had got it on video!

Thursday, 24 October 2013

Medical Student Talk

Great pic of the Simian crease on Felix's palm
What an amazing day!! I was given the opportunity (through Down syndrome SA), to share Felix's story with some Medical students at Flinders University today. There were three other Mums who also spoke, and it was fantastic to hear what they had to say, as all of our stories are a little bit different. Felix was invited to come along as well, and had a great day making lots of new (adult) friends, and meeting another gorgeous 15 year old, who also has Down syndrome.

We were invited to a BBQ prior to the talk, which eased any nerves we might have had. The students were wonderful. They were so welcoming, and made us feel totally relaxed. Felix was in heaven, climbing up and down the University steps. Up and down, up and down, over and over again. My apologies to the very thoughtful students who followed him around. I'm sure several of them will be sleeping very soundly after being put through their paces by a very active 3 year old!! Another mention must go to the guys who carried Felix, and the pram, up and down all of the stairs when we arrived and when we finished. Their assistance was very much appreciated!!
Sprung!! I said "one book" Felix!

I was so proud of Felix today. He was at his charming best, giving everyone 'high fives' or 'fist bumps' as he wandered through the crowd. He is such a people person and was definitely in his element, surrounded by so many adults. He had the spotlight and he made the most of it! I really hope the students could see, by looking at Felix acting like a typical toddler, that having a child with Down syndrome is pretty much the same as having a 'typical' kid. They are busy, active and fun loving, with a bit of a tantrum thrown in for good measure (when I stopped him climbing the stairs for the 50th time!)

I loved sharing Felix's story, and having the opportunity to talk about our good and bad experiences with Medical professionals over the past three years. The students were really responsive and asked lots of great questions. I feel that the future looks bright if these students are going to be the next generation of Medical professionals. They seemed genuinely interested in learning how to approach delivering a Down syndrome diagnosis, as well as caring for a patient who has Down syndrome. Lets hope that over the coming years, we will be telling more and more positive stories about those in the Medical field, and less negative ones.
Bit blurry... Felix and Igglepiggle in the car
on the way home today...they were both tired!

Today was a busy one for both Felix and I. We were in the car, driving to the city by 7am and didn't get home until 7pm tonight. I know I've said it before, but he is SO good in the car! His car DVD player decided to stop working about ten minutes after we left this morning, but he didn't mind. He just sat, looking out of the window, occasionally signing sheep or cow, and making the appropriate noises as we saw them in the paddocks as we drove past. Once we reached the city and had to stop at traffic lights, I would sometimes reach back and grab his leg, making him giggle his head off and sign 'again' (and say "gen"). He's so easily's awesome!! After his long day, he fell asleep twenty minutes after we started driving home, and slept for two hours. It certainly makes the long drives easy when he's so content.

On Saturday, Felix has his first RDA (Riding for the Disabled) lesson. I'm slightly apprehensive. I would like to think that he will sit up on the horse, like a pro, and be completely fearless, but if I'm honest, I think he will probably freak out! I'm hoping to be pleasantly surprised! Watch this space....

Monday, 21 October 2013

Buddy Walk

Fun in the farm barn
I have just got back from taking a walk with Felix, where we almost literally stopped to smell the roses; except instead of roses, they were lavender bushes. I showed Felix how to sniff the lavender flowers and straight away he leaned forward to smell them. There were many more lavender bushes on the way home so, Felix stopped at each one, bent over at the waist and buried his face in the flowers. I love that he was able to identify which bushes were lavender, stopping to smell them, but walked past other flowers. It was beautiful to watch him.

His buddy, the alpaca
This morning I had a super proud moment. Felix was still in his pajamas, but he pulled a pair of jeans out of his drawer and was trying to put them on over his pajama pants. He was getting a little bit frustrated and signed 'help' (and said "elp") to get my attention. I took his pajama pants off and sat and watched him, wondering what he would do. He picked the jeans up again and easily put one leg in (they are very skinny jeans so he had to pull extra hard to get his leg in). Once he had one leg in, he did the same with the other leg, then stood up and pulled his jeans up. I couldn't believe it! The only thing he needed help with was the button. Another little step towards independence!
Big sister, Bekah

Thanks to the advice from another Mum, with an older son with Down syndrome, who said, "The best thing we can do for our kids is make ourselves obsolete", I have been trying to step back with more and more things, and allow Felix to try and do it for himself. Sometimes it's tempting to step in and 'do it faster', but we are certainly reaping the rewards by stepping back and letting Felix attempt them first. When we go out into the backyard, I tell Felix to get his gumboots. He will now sit on the step and correctly put both boots on the right feet. When we come back inside he knows to take his boots off and to go to the sink to wash his hands. I lift him up, and he rubs his hands together to get them nice and soapy, rinses them, shakes them and then goes to the towel to dry them by himself. He is following many more instructions and is showing amazing comprehension, which is really encouraging.
Feeding Shaun some grass

A friend of mine, who is also blessed with a 3 year old who has Down syndrome, recently posted something on Facebook which I found very interesting. Her theory is that it can be really difficult to judge exactly how much our kids understand, because of their speech delay. She thinks (and I agree), that if our kids were able to speak about everything they know, we would actually be shocked at how much knowledge they actually have. Since her daughter has started talking a lot more, she is amazed at the things she knows and understands, which she is now able to express.With Felix's speech improving every day, I'm noticing how much he is bursting to talk to me about. The other day, he was excitedly signing and talking about four very specific animals. After he was finished, Nathan told me that Felix had been playing with a balloon with pictures of those four animals on it. That was what he was trying to tell me! Very often, Felix will look at me and sign 'listen'. I won't be able to hear anything, but then he will sign 'truck' and, sure enough, I will begin to hear a truck coming, in the distance. He notices so many things!
A boy and his sheep

Another thing I am trying to encourage is getting Felix to help me do things. I had to get a prescription from the Chemist yesterday, so I asked Felix if he could go and give the prescription to the lady which he did, with a big smile. I want him to learn to be confident to do things himself, without my help. He likes to help feed the chickens their pellets, and copies me when I pull up a handful of grass to throw to them. We're also insisting all the time that he sign 'please' and 'thank you'. Sometimes he will be grunting at me to do something but I won't until he's signed 'please'. He's pretty good now, and will usually sign 'thank you' without being asked. Our little boy is growing up!
Aaron and Joshua joined us this year

Last Sunday was our annual Down syndrome Buddy Walk. As usual, we had a wonderful day. Felix was confident enough this year to pat the animals in the farm barn (he freaked out last year), and made friends with the biggest animal in the enclosure; an alpaca. He loved the clown (much to Daddy's horror), and had fun on the jumpy castle with his big sister, Bekah. We were able to catch up with a lot of Felix's little buddies, and meet some new faces too. It was a very warm day for the walk, but we're so thankful to our regulars, my Mum and Dad and best friend Deb who mark Buddy Walk on their calendar every year and have never missed one. We are also thankful that three of our kids, Aaron, Joshua and Bekah; our Grandson, Noah's Mummy, Mel; our beautiful friend, Kerri; and the amazing Hartwig family (Andy, Kyle and 5 of their kids) all came out to support Felix, and others with Down syndrome by doing the walk with us this year. We have had so many friends and family come along with us over the past few years, and we're grateful to each and every one of you. Your support means so much; thank you x x x

Wednesday, 16 October 2013

Shaun the Sheep

Happy party boy!
Sunday was a huge breakthrough for us. We had a house full (over 50 adults and kids), here to celebrate Felix's 3rd birthday. Due to absolutely awful weather, all my plans of having the party outside were squashed, and the day was spent rotating inside and out in between the rain. Usually, in that type of situation, Felix wouldn't have coped well at all. He likes to have his own space, and can be quite anxious in a crowded room with lots of little people around. Our house is very small, so it was more crowded than most. He must have know that everyone was there for him, because he took it all in his stride. He laughed and smiled. He interacted, not only with the adults, but with his little friends as well. He even gave some of them kisses and cuddles when they had to go home. Singing 'Happy birthday' was the best bit; he had a beaming smile the whole time as he looked around the room at everyone singing to him. When we had finished singing he clapped his hands and wanted to sing it again.
Birthday cake

A couple of days after Felix turned 3, there was a knock at our front door. One of our local farmers was standing there with a lamb in his arms for Felix. He had even sprayed Felix's name, in blue paint, onto the side of the lamb. We had been talking about getting a lamb to add to our menagerie, for a while, so it was a nice surprise to be given such a special gift. Aaron (13) immediately named him Shaun 'the sheep'. Felix loved the lamb right from the start, and cuddles him and chases him around the yard. The only problem, initially, was that Felix didn't cope with Shaun's extrememly loud bleating. Felix has always had issues with high pitched noises; squealing, screaming, and now, bleating. Thankfully, now that the lamb is a few weeks old and spends the majority of the time outside, Felix has adjusted to it and doesn't get frightened anymore. It's cute to watch Shaun follow Felix around the backyard, or stand next to him when he's playing in the sandpit. Some of Felix's friends, who came for his party, took turns feeding Shaun his bottle. It was fun to watch them experience something new. One of the little boys told his Mum he wanted to live on a "police farm" when he was older too!!
Aaron feeding Shaun his bottle

Playgroup has just started again since the school holidays. The lady who runs it commented on how well Felix is talking since she saw him last. It's encouraging that other people are starting to notice the new words Felix is using. We still have to listen closely, because often he uses just the beginning or end sound in a word, but I am amazed at how quickly his speech is developing now. He is getting especially good at people's names and makes a real effort to try and say most names. The majority of things he signs, he makes an attempt at the sound now, as well. It's very encouraging!
Felix had a lot of friends come to his party. This is a pic of
6 of them...all who have a little something extra :)

Earlier this week, we had to take our car to be serviced. We decided to sit and wait for the car, so I sat on the floor and played with Felix. I found a book with animals in it, and Felix worked his way through the book, perfectly signing every animal. After a while, I noticed a lady watching us. She told me she was a retired Special Education Teacher, and was absolutely amazed at how well Felix could sign. She was also pleased to know that she still remembered some signs from her time teaching. She went on to tell me she had been watching Felix's and my interaction with each other, and was very impressed with his ability to follow instructions and do what he was asked. I felt so proud of Felix. It's great when people acknowledge all the hard work we have put in and, most of all, Felix's hard work and determination.
Sporting a black eye after a bit of a tumble
down some stairs

I'm still finding it difficult to update my blog as often as I used to. If any of you have Facebook, please check out my public page  I post regular little updates about Felix on there, so if you want something to read in between blogs, please look it up! I'll try not to leave it so long between blogs next time!!

Saturday, 28 September 2013

Birthday Boy

Beautiful boy

Visiting the sheep with Daniel

Playtime with Amy. We miss you x
Today I'm feeling very reflective. Tomorrow will be Felix's third birthday and, as I think back over the past few years, I feel so proud of our little guy and how far he has come. Watching him develop and grow has been an incredible blessing. Things haven't always happenend quickly, or perfectly, but they have happened. We have watched Felix go from crawling to walking, and these days he is almost running and trying to jump. He can communicate beautifully, both through signing and his new words. He is gentle and kind with other children, and isn't so frightened of them anymore. He has a fantastic sense of humour and knows exactly what to do to make us laugh. He knows when we're upset and will either cuddle us, or clasp our hands into each other's. There have been days when I have felt overwhelmed by the number of different therapies and appointments I've had to drive to. I've been upset by medical professionals and even strangers in the street. But, the positives WAY outnumber the negatives. We have learnt so much since Felix came into our lives. We are so much more patient, we're more tolerant of others and their struggles, and we enjoy the little things in life more than we ever have before.
Bekah, with a tiny Felix

 Joel with Felix and
his son, Noah
This week, we met Felix's new Paediatrician. I must admit, I was a little anxious. I had heard very little about him, so I wasn't sure what to expect, but he was absolutely lovely! He was friendly to Felix and I, but also to Aaron (13 years). I was really impressed with the way he spoke to his Intern as well, after having experiences of Doctors being rude, not only to us, but also to their Interns. He didn't rush us, but took plenty of time to learn all about Felix's medical history, and the amazing little person he is. Medically, he checked out his 'questionable' inguinal hernias and seemed to thing he will definitely need surgery to correct them. I mentioned to him that I was worried about Felix having possible food intolerances (his nappies are revolting). He wants to rule out Coeliac's disease, so he ordered a blood test, which we had done after the Paediatrician visit. As usual, Felix took the blood test in his stride; no tears, not even a whimper. When I was able to put him back down on the floor, he blew the Nurses some kisses, waved goodbye and walked out the door. Such a little champion!!
Fun with Joshua

Sleepy cuddles with Isaiah
I briefly mentioned our chickens, in the last blog. We decided it would be good for Felix to have some more pets (to add to the 3 dogs and 3 cats). I think animals are wonderful therapy for kids and great teaching tools (learning to be gentle, feed them, have responsibility etc). Our ownership of chickens had a shaky start. Unfortunately, 2 days after our first 4 chickens arrived, we were met with a smiling dog in the chicken coop, and 4 very deceased chickens. Once we put up an extra fence and spent the day 'dog-proofing', we picked up another 4 chooks and, I'm happy to say, they are doing very well and giving us lots of lovely eggs. Felix loves the chickens. He has already learnt to shut the gate behind him, and how to throw the chickens their feed. He likes to splash in their water bowl, and thinks the eggs are balls, so we still have a little way to go with our 'learning', but he has been very gentle with them and they are amazingly tolerant of him, letting him follow around behind them.
Our two baby boys, Felix and Aaron

We are currently looking into finding a sheep to add to our menagerie. We don't want one that needs more than one bottle of milk a day. I'm way past the stage of wanting to get up at night to feed a lamb. I know Felix will really enjoy having a wooly friend. Since we moved to the country, he wants to visit the neighbour's sheep all the time. "Sheep" is a word Felix uses all the time now! We will have to see how the dogs like the introduction of a sheep to the backyard. I really don't want it to have the same fate as the first lot of chickens. It will be a very gradual introduction I think!!

I'm still so excited about the way Felix's speech is coming along. He said Bekah's name the other day, "Kah". He also says "Mel" for Mel and "Oh" for Noah. He has been calling Aaron "Aa". He says "cat" and "bubble" perfectly, and when he sees a photo of a sleeping baby, he says "Awww, baby ee" (asleep) and signs 'asleep'. Little tiny sentences, which are so exciting. After shutting the chicken's gate, Felix signs 'bye chicken'. With his fantastic grasp of signing and the development of his speech, it is getting easier and easier to understand what he is saying to us. I'm so unbelievably proud of him! He tries so hard, and I'm inspired by his perserverance.
Our gorgeous birthday boy!

As I sit here typing, Felix is sitting next to me, full of giggles. He is playing on his ipad and finding something absolutely hilarious! Listening to him laugh brings me so much joy. I'm looking forward to seeing his little face tomorrow morning when we sing happy birthday and give him his presents. He's too young to understand just how much he has changed our lives, but I hope one day he will know how very precious he is to us, and how thankful we are that he chose us to be his family. Happy 3rd birthday little guy! I can't wait to see what the next year brings.......

To all of our kids, Daniel, Amy, Bekah, Joel, Joshua, Isaiah and Aaron. Thanks for loving this little guy and for accepting him just the way he is. I know you wouldn't change a hair on his head x x x

Thursday, 19 September 2013

Chickens and Bubbles

Big smiles

Time has got away from me again. I can't believe I used to blog almost every day. I'm not sure how I found the time!

Felix saw the Surgeon last week in regards to the possible hernia he has in his groin. This Surgeon was so lovely, and after our awful visit with the Neurosurgeon a couple of weeks ago, it was a welcome relief. From the second we walked through the door of his office, he was all smiles and full of praise for Felix. He even asked if he could take a photo of Felix wearing his "Keep Calm. It's only an Extra Chromosome" tshirt! He thought it was great!

Hello chook!
The Surgeon examined Felix and confirmed what we already know. His testicles rise up into his abdominal cavity very easily; they are always up and down. So, because of this, it's difficult to see if the lump in his groin is a hernia, or if it's just his testicle. He wants us to observe him for the next 6 months and then we'll reassess and see how it's going. He has a slight hydrocele on each side as well which we'll monitor. During the examination, the Surgeon said that if he ends up having to operate, he could circumsise Felix at the same time. It's something we discussed when he was born, but we didn't end up doing it. Once he was discharged from the SCBU unit, we just wanted to go home. We'll definitely take him up on on it if Felix has surgery. It will be one less thing Felix will have to worry about when he's older. As the Surgeon pointed out, Felix may be a pedantic clean freak (like his Mum), or he may be totally laid back and maybe not shower as often as he should. By circumsising him, it will be one less thing he has to worry about it. I must admit, I'm not looking forward to it. He's going to be very sore, and I'm going to feel really mean :(

We met Felix's new Speech Pathologist this week. We had to go through a lot of paperwork, so Felix didn't get too much actual therapy this time around, but he made sure to use a lot of his new words. His new therapist was really pleased with him and is looking forward to working more with him the next time she sees him.

Walks with 'Papa' and 'Ee'
Felix had his second lot of hydrotherapy a few days ago. I was glad to see he enjoyed it as much as the first time. Part of his therapy was balancing, while sitting, on a foam board. He did that really well, but the part that excited me, was when he wriggled to the edge of the board and threw himself towards me, into the water. He didn't wait for me to hold on to him, he just launched himself into my arms. I thought he was pretty brave considering he hasn't spent much time in the pool over the past year.

Bubbles for Blake x x x
We were excited to have my parents come up to stay over the weekend. Felix has learnt to say "Papa" and he says "ee" for Granny (Gran-'ee'). It was so beautiful to hear him wake in the morning and call out, "Papa...Ee" and go wandering off to find them. Felix enjoyed showing them the animals in the town, and taking them to see our new chickens, which he loves. They thought it was funny to see him walking around with the chickens, bobbing his head up and down, just like they do when they peck the ground. He's a funny little character. He is such a Papa's boy, and spent lots of time sitting on Papa's knee, reading stories and giving him cuddles. Mum and Dad both love going for walks so Felix was in his element. One of his favourite things to do is to go for walks, so he had a great time. He giggled his head off when, at the playground, Granny kept following him down the slide!


Sadly, the little boy I wrote about in my last blog, passed away this week in the arms of his Mummy and Daddy. He fought so hard to stay with them, and will be remembered for his strength and his incredible smile. Tomorrow is the celebration of his life. We won't be able to attend, but we will be dressed in bright colours and blowing bubbles, just like his family requested. Rest in peace, Blake, you will always be remembered and your family will always be a part of our special community. Sleep sweetly, little guy x x x

Thursday, 5 September 2013

Fun at the Zoo

Loving the meerkats
It has been an incredibly busy few weeks, with so much happening. I better just focus on the things to do with Felix or I'll fill up twelve pages!

Felix had an appointment with the Neurologist yesterday to talk about booking him in for a follow up MRI scan. For some reason, the hospital made a mistake when they made his appointment and booked him in with a Neurosurgeon instead of a Neurologist. I don't know what it is with some Specialists but, it seems, the higher their qualifications, the worse their bedside manner seems to become. We were totally oblivious to the fact that we had been called in to a Neurosurgeon's office, instead of the Neurologist but, within minutes, the Surgeon realised the error and let everybody know about it. He seemed angry with us, angry with the Nurse and angry with his Intern. Wow! The Nurse rolled her eyes and gave us a little wink and, later, explained to us that what he lacks in bedside manner, he makes up for in skill. He would want to be good, because he was so rude!
Saying hi to the deer

After his little tantrum, the Neurosurgeon told us that he would be able to order the MRI for us, and see us for a follow up appointment after (I'll be looking forward to that one...not!). He had a look at Felix's previous MRI and doesn't believe he actually has hydrocephalus at all. He thinks he just has larger than average ventricles. There is no fluid build up anywhere, and nothing to indicate anything sinister at all, which is awesome! Felix's head is now measuring on the 50th percentile, well within the normal range. The Neurosurgeon's one saving grace was that he was nice with Felix, so I was really pleased with that. He even commented on how happy and chatty he was, and how long his attention span was, as he sat the whole time and played with one of those frames that you push beads along, up and down. Felix's MRI is booked for early December, so hopefully it will just be routine and the results will be what we expect. I wish he didn't have to have a general anaesthetic, but at least it's just a light one.
Following his friend, the magpie

After leaving the hospital, we took Felix to the zoo. He walked around for about 3 hours, stopping to look at things along the way. He particularly loved the meerkats because they were so active, running and climbing and looking at him through the glass. He tried to climb the wall to get in with the water dragons and turtles, and wasn't impressed when we suggested it might not be a good idea. He followed a magpie (native bird) around the lawn. It wasn't bothered by him at all and let him keep walking behind it without flying away. He has a fascination for snakes at the moment and constantly signs 'snake' and says, "Sssssss". He loved looking at them at the zoo, but we are teaching him the sign for 'dangerous' because the one we found in our yard a week ago was deadly and we don't want him thinking he can pick them up. He loved the monkeys, but was a little scared of some of the noisy birds. His favourite part was the children's zoo because he was able to touch the sheep, goats and deer as much as he wanted to. They were so tolerant of him as he patted and cuddled them. It's hard to believe he was so frightened in a petting zoo only twelve months ago! It was beautiful watching him....I could have stayed there for hours.
"So....what's been happening?"

Today, Felix had his first hydrotherapy session. He hasn't been in a pool for over a year, due to issues with his ears, so I wasn't sure how he would go. He happily put his little wetsuit on, let me put his plugs in his ears and his earband on, and walked over to the pool. From the second we climbed in, with the Physio, he laughed. He thought it was the best thing. The hydrotherapy pool was so warm I could have stayed in there all day! The Physio showed me exercises to try and strengthen Felix's quad muscles, by keeping his legs together as he kicked, and picking up balls with his feet. Swimming on his tummy is always a bit difficult because his head still falls forward sometimes and he gets a mouth full of water but, as the Physio pointed out, it's good to strengthen his neck because he has to hold his head up for periods of time. He enjoyed every second of his session and wasn't happy when it was time to get out. The Physio is wonderful, and so beautiful with Felix. I'm really glad it's going to be a regular part of his therapy. Fingers crossed the ear infections stay away!
Such a little old man!

So many of my friend's children (with Down syndrome) have had surgeries recently, or have been ill in hospital. The reasons vary from basic surgeries (grommets, tonsils etc), to life threatening conditions
(pulmonary hypertension etc). It's never easy to see your child put under an anaesthetic, even for routine surgery and it's hard not to panic, as a parent who cares so much for their child. My thoughts are with all of them, as I know I am in theirs when it is Felix who is in hospital. My heart goes out, especially, to one family whose precious son is currently in critical condition. This gorgeous little man has already bravely faced so much in his short life. He will have to fight as hard as he can to get through the new challenges he faces. I pray that his little body will have the strength to do that! I was reminded again, as I looked around the waiting room at the hospital, just how lucky we are. There were so many children there who had such serious ongoing health issues, and we were able to leave with good news. Once more, I felt such a huge admiration for each and every one of those precious children, who are loved as much as Felix is, and for the strength they show.

Monday, 26 August 2013

Getting Stronger

Enjoying exploring
Last time I blogged, I wrote about Felix starting to get sick. As is Felix's style, he ended up with a gunky, weepy, ear (although it was his 'good' ear this time). The poor little guy was an oozy mess for a few days; sticky eyes, snotty nose, messy ear and extra drool. When he approached us to give us a kiss, we had to dodge to try and find a dry spot on his face. Thankfully, apart from a couple of nights of coughing, it didn't develop into croup as well, so that was a huge relief. The Doctor prescribed antibiotics for his ear, and gave us a prescription for Redi-Pred to keep on hand in case he got croup as well. The Doctor (who we hadn't seen before), was actually able to get a good look at Felix's right 'problem' ear, and saw that it looked good and the grommet was sitting exactly where it should be.... awesome!

Felix charmed his way into the heart of his new Physiotherapist today. She had me strip Felix down to his nappy so she could have a really good look at his back and legs. He thought it was hilarious to be running around with no clothes on in her warm office. It's been so cold that, apart from bath times, he's been wearing layers and layers of clothes. He was quite the little entertainer. The Physio was really happy with Felix's development. She made a mention of how well he uses bilateral motion eg. clapping, throwing a ball with two hands etc.

Due to hypotonia, people with Down syndrome walk with quite a 'wide base', meaning they walk with their legs further apart than most people. Felix's gait, although improved from using the 'Happy Strap' while he was learning to walk, is still wider than it should be. The Physio suggested some ways to try and increase the strength in Felix's quads, which will also help his hip placement. One of the things she suggested was encouraging him to ride his push-along bike, and to see about getting him a balance bike. Felix has never been very interested in riding his bike so he might need a bit of encouragement, but it will be worth it if it helps to strengthen his legs. It's good to be given  constructive suggestions from Felix's therapists. I like having advice we can work on, rather than just be told to 'keep doing what we're doing' (which has been said often before). Like I always say, I know Felix is doing well but there is always room for improvement and challenges and, if he is willing, why not try?
So clever!

Something I am looking forward to is starting hydrotherapy with Felix once a week. The Physio will be in the pool with us and we will focus on activities to strengthen Felix's muscles. He loves the water and I'm looking forward to seeing his reaction to this type of therapy. I am hoping it will be really beneficial for him and will help with his muscle tone. I'm sure he'll also have a lot of fun. I have noticed that when I lay him down in the bath to rinse the shampoo from his hair, he really enjoys it now. He kicks his legs and swishes his arms through the water by his sides instead of protesting. I think hydrotherapy is going to be one of his favourite things!

We've done quite a lot of exploring lately. Last weekend we went for a drive to a beautiful, little, country town surrounded by hills. Felix had an impromptu physio session, climbing steep hills and walking through long grass. He was drawn to big muddy puddles, and enjoyed the new experience of walking over a wobbly swing bridge. He wasn't so sure about the sensation of the bridge swaying under his feet, but he did really well keeping his balance.
New playground...lots of fun to be had!

A couple of weeks ago we were lucky enough to receive some disability funding to purchase an amazing playground for our backyard. We have already seen the benefits to Felix's gross motor development, with him attempting to climb the climbing wall all by himself and navigating the different levels of the playground. He even managed to hang on to the swing, while I pushed it, without any support from behind or in front. He is so determined to do things himself. Now if, for some reason, I'm unable to drive the 40km to take Felix to kindergym, we can have a good therapy session in our own backyard. The only down side is that we already found a big brown snake right next to the playground. At least we know to be extra vigilant, especially with the warmer weather about to start, but just a little bit of a worry!!