Sunday, 30 December 2012

Burning Up

Hypotonia makes Felix super flexible
Our little contortionist
I was really happy to see that, apart from a bit of a runny nose and a tiny rattle in his chest, Felix seemed almost 100% better today. He was happy, and very much his usual self, right up until 5pm tonight when he started to get a bit grizzly. Our niece (Tahlia) is staying with us at the moment, so she picked Felix up and sat him on her lap while I cooked dinner. I was watching him, as I cooked, and noticed his body starting to get really floppy. Children with Down Syndrome usually have hypotonia (poor muscle tone), and with Felix, it's a lot more evident if he's really tired or if he's sick. He melted into Tahlia, like a newborn baby. He was struggling to hold his head up and looked like he was about to fall asleep. When I picked him up, I noticed he was running a fever and was completely lethargic. Poor little man.


As I still had dinner to cook, Nathan took Felix from me and had cuddles with him. I gave him some Panadol to try and lower his temperature, but he spat most of it out. He used take medicine so easily, but hates it now. It wasn't long before Felix fell asleep on Nathan's shoulder, and we were able to lay him in his bed. I think we're in for a long night. I just went to check on him, several hours later, and he's still burning up. I really hope we can manage to get his fever down before we go to bed. If we can't, I think he'll be sleeping with us so we can keep an eye on him. I thought we had managed to escape him getting the flu, with just a mild case of croup instead, but it seems that's not the case.



video

On a lighter note, I'm going to post a funny video of Felix from a couple of days ago. He was playing with an app on his ipad, and signing the words which went with the pictures; car, boat, plane etc. When he touched the fire engine he made a face, instead of signing the word. Each time the siren sounded, he did the same face again. I was laughing so much, I kept getting him to touch the fire engine over and over, and he kept doing the face. He's such an entertainer. I love how he knows what to do to make us smile. I really hope he's better soon so we can have our crazy boy back.

Saturday, 29 December 2012

Don't Want to Sleep

What do you mean I'm meant to be asleep?
For about a year now, Felix has gone down for a nap at about 10.30am in the morning and slept for 2-3 hours at a time. The last few days, when he has been put to bed, he has been getting up and playing with his toys in his room instead of going straight to sleep. He doesn't cry and he's not bothered by playing by himself, but I really want him to have a sleep so he's not grumpy later in the day.

This morning, we put Felix into his bed for a sleep but, after about half an hour, we could still hear him playing. I peeked in through the door to see him sitting in his box of Duplo (with the majority of it all over the floor), having a great time, playing with the bricks and talking to himself.  His back was towards me so he couldn't see me so I quickly ran to get the camera and take a photo. I called Nathan to come and have a look and we both couldn't help but laugh. He was having so much fun and wasn't slightly concerned that it was meant to be sleep time. We got him out of the box and put him back to bed, and awaited 'round two'.

Some imaginary play
Round two came quite quickly. We could hear a bit of banging against Felix's bedroom door and knew that our little monkey was up to something again. I tried to open the door, but he was sitting against it, so I had to nudge him gently with it until he moved far enough away so that I could squeeze in. There he was, with every single nappy thrown out of the basket and onto the floor, and working his way through a packet of baby wipes. He had already pulled out half the packet by the time I got into the room. After tidying and removing the nappies and wipes, I put Felix back to bed for a second time.

Felix decided to do something extra special for 'round three'. I still don't know how he did it, but he managed to pull his vaporiser (thankfully not completely full of water) onto the floor. There he was, playing in a puddle of water with a big grin on his face. I'm always careful to put the vaporiser cord behind his chest of drawers so he can't see it, but it must not have been far enough out of his reach. I rectified the problem by putting the cord even further back, until it was difficult even for me to get to it. Hopefully our little adventurer won't be able to pull it down again. For the third time, I put Felix back to bed and this time, he went to sleep. I think, tomorrow, I will try to keep him up until about 12 and then put him to bed. Maybe he will go to sleep easier that way??
Who invited you and your camera to my tea party?

Tonight, after dinner and a bath, Felix wandered off by himself to play with some of his toys. After I had finished in the kitchen, I looked into the lounge room to see him sitting and having a tea party. I watched him scoop some 'sugar' from the sugar bowl and pour some 'tea' into the teacup, before he stirred it with his tiny spoon. It was the cutest thing! He carefully placed the four little saucers onto the table with a matching teacup for his 'friends'. I watched him for ages as he indulged in some beautiful imaginary play. I whispered to the older kids (who were also watching Felix), that I was going to go and get my camera. I knew that as soon as he saw me with it, it would spoil the moment, so I tried to be sneaky. Unfortunately, Felix is a bit too clever. He saw me almost straight away and pushed all of his cups and saucers onto the floor. He obviously didn't welcome intruders to his tea party!

Friday, 28 December 2012

Quick Trip Back to Hospital

Not feeling well :(
Just after we got into bed last night, we heard the sound we never like to hear through the baby monitor; the barking cough. After Felix's last bout of croup, the Doctor said to take him to hospital immediately at the first sign of it again, so we jumped out of bed, got dressed and headed off for the hospital. Thankfully, because we got onto it quickly, Felix's oxygen sats didn't drop too low this time, so he didn't need oxygen or have to be admitted to hospital. It was nice to be able to bring him home, after he'd been given some medication, and put him in his own bed (and for us to sleep in ours). There's nothing worse than trying to sleep in a chair by a hospital bed. I admire those parents, of kids with Down Syndrome, who have to do it on a regular basis. You people are superhuman, I'm sure of it!

Concentrating on the ipad
The good thing about our impromptu hospital trip is that Felix had his ears checked. I'm happy to report, that at this point in time, his grommets are sitting nicely in his ears and haven't fallen out yet. Hopefully they will stay put and give Felix some much needed relief from his ear infections. Having been in hospital recently, Felix knew exactly what to do to have his oxygen checked. He put his finger out when the nurse asked, and let her clip the monitor to it. He sat patiently, with it on his finger, until she took it off again. He even cooperated when she looked at his throat. Despite not feeling well, Felix was his usual charming self. He had smiles for the nurses, and even blew them kisses and waved when we left.

Felix has actually been quite happy today. He and I have spent the day reading stories and playing games on his ipad. A few of us are starting to feel a bit sick, with sore throats and coughs. When Bekah arrived to stay with us for Christmas, she had a really awful flu, so I had a feeling we all might succumb to it eventually. I wasn't feeling too brilliant today, so it was nice just to hang out with Felix and play with him. It was a relief that he wasn't at his most energetic because I would have struggled to keep up with him, I think.

Crocodile got his nose
Tonight when I put him to bed, Felix was a little bit upset, so I went back into his room to give him a cuddle. Usually I give him a quick one and then leave the room (he's so good at putting himself to sleep that I don't want him to get used to us staying in there for ages), but I climbed into his toddler bed with him and had a big snuggle. He rested his head on my shoulder and looked up at me with those beautiful almond shaped eyes. We lay like that for ages; he and I both looking at each other. His eyes started to get heavy, so I lay him down and gave him a hug goodnight. He patted me a few times on the shoulder, like I do to him, and then I kissed him and left the room. I think he must have fallen straight to sleep. Hopefully, we will have an uneventful night and he will be able to sleep through the night without coughing. It's awful when he's sick, but I do like the extra cuddles.

Thursday, 27 December 2012

A Lovely Uncle

Kisses for Noah
It was really sad to say goodbye to my parents and Bekah this morning. It's been so nice having them here with us. I love that Felix has got to know them so well over the past few months (because of more trips to the city), that he snuggles into my Mum's shoulder or brings toys over to my Dad to play. He adores his sister and, even though there are long periods of time between visits, he always remembers her and they pick up exactly where they left off.

Great sharing
Felix has had so much fun balancing cups on top of people's heads over the past few days, that he decided that Noah needed one on his head today. It's been so gorgeous sitting and watching the two of them play. Felix has been carefully balancing a plastic cup on top of Noah's head. Noah has sat very still with the cup on his head until it has fallen off, and then Felix has laughed and done it all over again. Noah has caught on very quickly and has been trying to put it on his own head as well. They're both so cute. I'm glad Felix isn't scared of Noah any more; it has been so beautiful for me, as their Mum and Granny, to see their relationship with each other develop. I have always said that Felix is going to be the 'fun' Uncle in the family. I'm pretty sure that he'll boss all of his future nephews and nieces around, but will be the one to keep them all entertained as well.

Being silly with Granny, Papa & Noah
It has been a fairly quiet day for Felix today. He had an extra long sleep, and has enjoyed some time on his own reading some books and playing with his toys. He really loves his sign language books. The pictures are a photograph on a plain white background which makes them really stand out. He loves the photos of all the children in the 'Emotions' book. Tonight we read it over and over again. By the time we were finished, he could point to the picture of a little girl crying and sign 'crying'. He also learnt how to sign 'cuddle' and, best of all, he signed 'love' for the very first time. I know I rave on a bit about signing, but it is the best thing we ever started doing with Felix. I already see his frustration when he is trying to tell us something and we don't understand him, so him being able to sign most things has been so helpful. We try to teach ourselves words which are relevant to Felix in his day to day life; things he's interested in, or words we use with him a lot. It has certainly been a learning experience for us, but one I'm really glad we've had the opportunity to experience.

Wednesday, 26 December 2012

Christmas Day

Felix's special new shirt
What do I love most about Christmas day? Spending time with family and friends! The presents are fun and the food is great but, being surrounded by family, relaxing and enjoying each other's company is the best. I know Felix enjoyed having everyone here too. He had people constantly reading him stories, singing with him and playing games. His favourite thing to do was to put a toy on someone's head and then crack up laughing when it fell off. The next time they would put the toy on Felix's head until it fell off. He thought it was hilarious, and no head was safe....everyone got a turn.

We started our morning with a little surprise from Nathan. Months ago he ordered a balloon shark, online, with the plan to wake the kids up with it on Christmas morning. It needed to be filled with helium and is driven by remote control so it looks like it's actually swimming through the air. The only problem was that it took us a little bit longer than expected to assemble it so, instead of waking them up, it made a grand entrance floating down the hallway before we opened presents. The kids loved it. Joel even said that nothing was going to beat that, so we may as well not worry about the presents. Felix was in absolute awe. I thought he would be frightened of it, but he couldn't stop pointing at it, and even kissed it when he got a chance. If you still don't understand what I'm talking about, here is the link to a youtube video about the shark http://www.youtube.com/watch?v=vRG4xfJcLF4
Stories with Granny and Papa

I had some gifts made up for Felix to give everyone this year. I bought some tshirts and got them embroidered with, Felix's brother, Felix's sister, Felix's Dad etc on the front of them, and 'Support Down Syndrome Awareness' on the back. They turned out really well thanks to the workers at our local Phoenix Society. Phoenix employ adults with disabilities and, from everything I have seen, their quality of work is amazing whether it be detailing cars or embroidery. It is a wonderful organisation. Felix handed out his gifts to everyone, one by one, and even sat on Skype and watched his biggest sister, Amy, open hers. I was so happy when, later in the day, we Skyped with Amy again and she was wearing hers. I'm glad the kids are proud to show their support for their little brother.
Present time

My Dad has developed a real bond with Felix over the past few days and, being an intellectual (unlike me), he often comes up with new things to try when he's playing with Felix. I was completely speechless when Dad called me in to the room to see what he'd discovered Felix could do. Dad had placed a ball underneath a blue cup. He also had three other cups, of different colours, all lined up. Once the ball was underneath the cup, he moved all the cups around into different positions over and over and then stopped and asked Felix to find the ball. Nearly every time, Felix knew which cup the ball was under even though it was in a different place. I was so excited because not only does it show concentration, but it also shows that he is recognising colours which is fantastic!

Felix's tshirt gifts to the family
Putting a hat on Papa
Felix's speech has improved so much just over these past few days as well. Thanks, I believe, to a lot of intensive communication with my Mum. She has read so many books with Felix and, she is happy to sit for ages, reading the same story over and over. He loves a new touch and feel dinosaur book he got for Christmas. On one page, there is a dinosaur with lots of spikes. Mum was saying, "bump, bump, bump" as she touched each spike. After listening to her for a while, he started to point at each spike and say "um, um, um". It's great to hear him using the correct speech sounds. He is also consistently using the words "in" and "out" now. He doesn't get the 'n' sound at the end of 'in', or the 't'sound at the end of 'out', but to hear him using those sounds at the correct moment, when he is putting a ball 'in' the hoop, or taking something 'out' of a container is exciting.
Our Christmas shark

One of Felix's favourite gifts this Christmas, is a container of animal counters. They are little, primary coloured farm animals, about an inch high that can be used to teach sorting. They can be sorted into colours or types of animals, and also for counting. I didn't think Felix would be too interested in them yet. I bought them thinking we would probably end up putting them away until he's a bit older, but he loves them. He has been posting them into things, and filling up cups with them. He's been standing them up on the edges of the furniture, which is great for his fine motor because they are so small. Whenever they fall over, he concentrates hard on standing them back up, even if it takes him a while. I never get tired of watching him learn.

I hope everyone had a safe and happy Christmas. I'm relieved it's all over for another year, but will be sad to say goodbye to some of our family members tomorrow. It's been wonderful having them here. Tonight, I am going to put my weary feet up and rest while I can. The cutest alarm clock in the world will be waking me back up bright and early again in the morning.










Monday, 24 December 2012

Christmas Eve

Fun with Papa
'Twas the night before Christmas and all through the house, not a creature was stirring, not even a..... well, actually, there are still plenty of people stirring. The magic of Christmas is a bit lost on our older kids these days. They don't feel the need to go to sleep early so Santa can come but, I can guarantee, they'll be bleary eyed when I wake them up at 7.30am in the morning!

We have had the most lovely day. I've been busy getting food organised for tomorrow, but my Mum and Dad have arrived for Christmas and have been having a great time with the kids, and keeping Felix busy. Mum taught Felix how to do the actions to 'I'm a little teapot' this morning. He picked it up straight away, making a perfect little spout with his arm (we still have to work on the handle), and tipping himself over. He kept signing 'again, again'. It was the cutest thing! Felix loves it when my Dad whistles a particular tune (very annoying, but he loves it...haha!) When Dad stops whistling, Felix puts his lips together and blows out of his mouth, mimicking him, until Dad does it again.
Reading his new Christmas book with Bekah

Felix has loved all the attention today. Not only are his Granny and Papa here, but his big sister, Bekah, as well. The funniest thing he did today, was to go around the whole room giving everyone in it a kiss; Papa, Granny, Bekah, Aaron, Isaiah and Joel. After he had kissed everyone I said to him, "Can I please have a kiss?" and he shook his head 'No'. All of us cracked up laughing at him. After that I said, "Felix, say Mum", and he shook his head again. Cheeky boy! Why give me a kiss or say my name when he's got a room full of different people to share his love with?

Admiring the tree
This afternoon, we did our traditional thing, and exchanged one gift each. I gave the presents to Felix and asked him to hand them out. He did so well! I told him who they were for, and he went over to that person and gave it to them. He looked so proud of himself. It was like he knew he was doing a really important job. He was a fantastic little helper. When it was his turn to open a present, he offered it to someone else, but soon got the hang of it when we started tearing the paper for him. I can't wait until tomorrow morning to see how he reacts when he sees his gifts under the tree.

I'd like to take this opportunity to wish all of you a very merry Christmas, from our home to yours. I hope you have a wonderful day surrounded by those you love. To those who will be missing a loved one this Christmas, my thoughts will be with you. Our little angel, Eden, will be very much on my mind tomorrow. I take comfort in knowing that she has lots of other precious children, and loving adults, in heaven celebrating Christmas with her. Much love to you all.

Sunday, 23 December 2012

Fireworks

Dress ups
It's been a busy couple of days for Felix. Yesterday morning I found him in my bottom drawer; something he hasn't done for a long time. He was having a great time draping as many of my clothes as possible around his neck. After he had finished with his 'styling', he went and admired himself in the mirror, chatting away and laughing at himself. He used to spend a lot of time in front of the mirror, but hasn't done it as much in recent months. It was a bit of a blast from the past to see him doing it again.

Cuddles with Daddy by the beach
Last night was our local Christmas street party. The main street of town was closed off to traffic, and different food stalls, jumpy castles and other things were set up along the street. Felix was a little bit overwhelmed at first. We haven't been at too many crowded venues lately because it's been school holidays, so playgroup and kindergym are finished for the year. It didn't take him too long to relax and start looking around and enjoying himself. One of the most precious moments was when a woman (whose family I know), in her mid-30's and also has Down Syndrome, started chatting to me. She asked me what Felix's name was, and then said, with a big smile, "Felix and I will be able to understand each other. We have the same disability." The recognition that Felix also had Down Syndrome was so cool. She's such a lovely girl, and has a great sense of humour. I really hope that Felix speaks as well as she does, and interacts with people so beautifully when he is the same age. She really is a joy to speak to.
Oooooh...look at the water

After we had wandered the street party for a while, eaten hot chips and fresh cinnamon donuts, we decided to walk down to the beach for a while. We had some time to kill before the fireworks, and it was really hot (over 40 degrees celsius). We took Felix down to the edge of the water to cool down and have a play. He thought it was awesome! I made sure he didn't go out too far because he just got his grommets put in. The last thing I wanted was for him to get water in his ears. He was really happy just to squat down and run his fingers through the water. There was a lot of seaweed which he found pretty exciting too.

Fireworks are amazing!
We headed back to the street party (via the donut van), and then went and found a good spot to sit and wait for the fireworks to start. I was totally unsure how Felix would react to the fireworks. He can be so funny with certain noises (like Noah squealing), and with different pitches, but at other times he is fine. I am pleased to report that, from the very first 'bang', Felix was mesmerised! He looked up into the sky, and his head didn't move the entire time the fireworks were going. Every so often he would make a quiet "Oooooh" sound, which was adorable. I can safely say, the fireworks were a huge hit!

Friday, 21 December 2012

The End of the World?

My little handy man
Well here I am, on what some would say is meant to be the last day here on earth. According to most things I've heard, I still have another 44 minutes until the world ends here in Australia....I better type quickly! How have I spent my last day? I got up early to make some bread and get started on dinner for tonight. I did loads and loads of washing (like most other days), wrapped a couple of extra gifts and I put together Nathan's Christmas present, with the help of my little elf, Felix.

Felix amazed me once again today with his inquisitiveness and his persistence. I recently bought an outdoor setting for Nathan for Christmas. It has really high, heavy chairs and a tall table. Of course it came in five gigantic boxes, and I had to put it all together. Felix was really curious and sat watching what I was doing while I constructed the first chair. By the time I started on the second he was acting as my assistant, and stood nearby, handing me the screws as I needed them. On chair number three, he must have felt that his training was complete. Just like a professional tradesman, he put a screw in his mouth until he found the hole it had to go in, then he removed it from his mouth and pushed it in. He continued to do this until he had run out of screws. It was so good for his fine motor skills to have to manipulate the screw and put it in correctly. I was very impressed!
Plenty of room to read on the new chair

Joel asked me to wrap a couple of presents for him today (typical boy!) Just like the last time I wrapped presents, my little helper was by my side. It was another one of those learning moments with Felix when, even though he was having fun, he was mastering a skill which he had only recently learnt. I found some more tiny Christmas stickers and he had a great time putting them all over the presents. I noticed that he has become aware of when he accidentally bends a sticker as he places it on the paper. Straight away, he pushes a finger along the creased bit to straighten it back out again. He was also much more aware of spacing the stickers out on the paper, rather than overlapping them or placing them on top of each other. It's incredible how his ability to do things can improve so quickly when he's only done a certain activity a couple of times.

Tonight, Felix was really unsettled. He cried on and off for about an hour, which is very unlike him. He has a bit of a runny nose and I'm really hoping his ears aren't hurting him at all. He went to bed a little bit earlier than usual because he was so unhappy. We're hoping to take him to our Christmas street party and fireworks tomorrow night, but might have to see how he is in the morning.

Looking super tiny in one of Daddy's new chairs
I hope everyone's Christmas plans are coming along well. I'm really looking forward to having our family here (minus our two big kids, who we'll miss terribly). The thing I enjoy most about Christmas is just being together; laughing, playing and having fun together. I love waiting on everyone and cooking lots of food for them to enjoy too, but it's nice to have a doze on the couch in the afternoon! I can't wait to see Felix's face on Christmas morning when we have a house full of people and lots of excitement! Hopefully we'll still be around to enjoy it... 17 minutes til the end of the world :)   It's been great sharing my blog with you all x x x


Wednesday, 19 December 2012

Gift Wrapped

Pupils still dilated from his eye procedure
Felix has loved being back home, in familiar surroundings, after a couple of nights away. He has been so quiet today, just pottering around, playing with his toys and reading some stories. He has given all of his brothers extra cuddles which they've loved.

I put some Christmas presents under our tree today. We were going to wait until Christmas Eve, but it didn't look right, having a big, empty space under the tree. I wasn't sure how Felix would react when he woke up from his morning sleep today and saw them there. I think I was expecting him to go into an unwrapping frenzy and had visions of myself having to re-wrap everything. Thankfully, he was brilliant and didn't touch a thing. He hasn't tried to touch the decorations on the tree since we put it up, and must have known that he wasn't allowed to touch the presents either. He's such a good boy (well, except for the plastic container he dropped in the toilet bowl today that I didn't notice until after I used it!)

We were all a bit worn out after our trip to Adelaide
Earlier in the morning, when Felix was playing happily, I had been wrapping my last few gifts ready for Christmas day. I tried to wrap them as fast as I possibly could before Felix realised what I was doing and came to 'help', but I wasn't quick enough. His eyes lit up when he saw paper, ribbon, tape and scissors scattered on the floor. I though about packing it away and finishing later, but then I decided to see if Felix would add some 'special touches' to the presents. Each time I cut a piece of tape for myself to stick on the present, I gave Felix one as well. He soon got very good at manoeuvring the sticky tape from my hand to his, straightening it out and sticking it to the paper. He pushed down on it to make sure it had stuck, and the look on his face was priceless; he was proud of his success. When I went to put the labels on the gifts I noticed that I had some spare tiny little Christmas stickers. I peeled each one off and Felix, oh so carefully, stuck the stickers on the gifts. He even corrected himself if he started to put one on upside-down. By the time we finished, Felix was sticking the name tags on the presents with his own unique flair. No, the gifts don't look like they were professionally wrapped, but I can guarantee the people receiving them are going to think they are extra special.


Tuesday, 18 December 2012

Our Little Man is Home

Looking a bit scared
We have Felix safely back in our arms and it's the best feeling ever! I know what we have gone through over the past couple of days is nothing compared to what a lot of parents, of kids with Down Syndrome (and others), have to go through. I have immense admiration for those parents; for their courage and their strength.  Even with something as straightforward as Felix's surgery, it is never easy to hand over your precious child to a stranger and trust them to look after them and not make a mistake. I can't imagine going through anything more serious with him.

A play before surgery
Monday morning started bright and early. We had to have Felix at the hospital at 7am to check in. Felix loves his breakfast, and usually eats a lot of it, so he wasn't too impressed about the whole fasting thing. He kept signing 'eat' and we had to keep distracting him with something else. I'm sure he thought we were ignoring him. Thankfully, he was first on the surgeon's list, so was all dressed in his white gown and ready to go at 9am. We decided that Nathan would go in with him while he was put to sleep this time, because I did it last time. He got all dressed up in his blue scrubs, hat (yes...even on his bald head) and booties. Felix didn't like the look of his Daddy dressed like that and didn't even want to be held by him for a while but, eventually he was snuggled up on his shoulder ready to go.

Just waking up with his monkey and 'ugly' sock cat
Nathan said Felix did well and went straight to sleep. They told us to expect him in recovery in about 40 minutes. The usual time for grommets is only 20 minutes, but he had to have his tear duct probed and flushed as well which added to the time. Sitting and waiting makes the time go even slower when your child is in surgery. All the other kids, who had grommets, were back within 20 minutes of going in, and were having cuddles with their parents and we were still waiting. When the 40 minutes passed, and it became an hour, I started to get restless. Thankfully, after an hour and a quarter, our little guy was back; a little groggy and looking a bit frightened, but safe and well. Those next cuddles were the best ones I'd had in a long time.

Best cuddles
Felix dozed for about an hour and a half, and only woke up when I tried to lay him on the bed because my arm had gone to sleep. He didn't seem to be in any pain, but was a little bit annoyed about the drip, which was still in his arm, and the heart rate monitor still stuck to his big toe. He woke up with a ravenous appetite and wolfed down an entire tub of yoghurt and a vegemite sandwich. The nurse brought him some juice in a baby bottle. It looked so funny seeing him drink it out of there because he never had a bottle, even as a little baby. He didn't care. He was so thirsty, I think he would have had a drink out of anything. After he ate, he had a little bit of a walk around. He looked a bit drunk and wobbly from the anaesthetic, but he found his land legs after a few minutes and happily walked around.

Devouring his food
The nurse told us that the surgeon had some trouble getting the grommets into Felix's ears. His ear canals are a bit narrow, but they are also at a different angle to most other childrens, so it was a bit problematic. We're not sure what that means, and whether they may not stay in his ears properly, but I guess time will tell. Apparently his right eardrum had a lot of gross stuff behind it so I'm glad they were able to get in there and clean it all out. His ears smell beautiful at the moment. We didn't get to speak to the Opthamologist about what they found when they looked at Felix's eyes, or how the probe went. We will be having a follow up appointment with her in about 6 weeks. Felix woke up with really gunky eyes this morning, and his 'good' eye was worse than I've seen it in over 12 months. I'm hoping that it's just as a result of the surgery. Hopefully they will look better in a few days.

A crazy face...he must be better!
After Felix was able to be discharged from the hospital, we went back to our hotel where we had visits from some of our family. Felix loved having them all there, even though he was still a little bit sleepy. We all had dinner together, which was really nice, and then Nate, Felix and I all had an early night. Felix pretty much asked to go to bed and, even though he was in the same room as us, went straight to sleep. We're now home, after our long drive. Felix was pleased to see his brothers and to be able to play for a while. He has been really happy all day, which we're thankful for. He doesn't seem to have had any pain or discomfort from his ears, so hopefully he'll sleep peacefully again tonight.

Thank you to all who sent messages and said prayers for Felix. We appreciate your thoughts very much x x x

Saturday, 15 December 2012

Felix's Surgery

My brother keeps me safe.....
It's time to pack again; this time for a trip down to the city for Felix's surgery on Monday. I know it's just basic surgery, and he will barely be under any anaesthetic at all, but I still feel nervous. I hated seeing him put under for his MRI earlier this year and I'm not looking forward to seeing it again this time. Felix has to have grommets put in his ears to, hopefully drain the 'sludge' which seems to sit behind his eardrums, causing infections every now and again. While he is asleep, the Opthamologist is going to have a better look at his optic nerve and also probe his tear ducts to try and open them up. His eyes still get very watery (people often think he is crying), and the fluid which leaks out is quite sticky. Sometimes his eyes get a bit 'gunky' as well but, thankfully not as much as they used to. It's a very common issue affecting kids with Down Syndrome, as all of their little tubes and canals are much more narrow than the average child. It should be a very straightforward surgery, however, and we should be able to leave the hospital soon after he wakes up.

.....even from Santa
Yesterday morning, my friend Deb, Felix and I went over to Aaron's school to see him receive the school pride award for his class. Nathan was working, but was able to drop by quickly to see him presented with his medal. What the teacher had to say about Aaron was really special. One line in particular really stood out to me (and made me teary)..... "(Aaron) does not associate himself with a particular group but makes an effort to involve everyone."  That makes me so proud! I've always loved the way that Aaron doesn't have to be one of the 'cool kids', and sees people for who they are. I really believe it's a gift of his and I hope it continues throughout his life.

Felix was really funny over at the school. When Nathan arrived (in uniform), Felix was a bit apprehensive to be held by him. It was hilarious. He sees him in uniform when we visit him at work, but I think it threw him that Daddy was dressed like that in a different setting. All of Aaron's friends rushed over to Felix when the assembly was over. He was quite the celebrity with some of them wanting to hold him. He wasn't letting go of Aaron's neck though, but had plenty of cheeky smiles for everybody.

....and on the slide
Last night was Nathan's work Christmas party. We thought we would give the whole Santa thing another try. I was already certain of what was going to happen, and I was right. There was no way in the world that Felix was going any where near Santa. Isaiah held him and sat on Santa's lap, but Felix burst into tears so that was short lived. We will see what next year brings....

There was an inflatable 'jumpy castle' at the party and Isaiah was dying to take Felix on it. There was a big flight of stairs and a slide down each side of it. Isaiah, being the ever protective brother, climbed up very carefully with Felix and slid down the slide with him on his lap. Felix loved it so much! They had barely reached the bottom and Felix was already signing 'again'. Isaiah took him on it over and over until he was exhausted. Felix still wanted to keep going. He was full of giggles and smiles. I have a feeling that Isaiah enjoyed it even more than Felix did. He loves sharing new experiences with Felix and he never tires of it, which is so beautiful.


Well, as with most of our trips to the city, we probably won't have internet access until we get home on Tuesday, so I will be absent from my blog until then. We would appreciate your thoughts and prayers for Felix on Monday (although Nate and I will probably need them more!) In the meantime, try to take a break from the Christmas rush to tell those you love how much they mean to you. Spend some extra time with them and hug them tight. There has been so much tragedy in the world lately and sadly, life is fragile and there is no promise of tomorrow. Live each day to the fullest and love deeply x x x










Thursday, 13 December 2012

End of Year Chaos

I have been too busy to take photos
the last couple of days. Here are a
couple more Christmas ones....
This week has been so busy! I'm trying to embrace the Christmas rush but, I must admit, I'm looking forward to being able to sit down on Christmas afternoon, amidst the chaos of our huge family, and have a doze on the couch!

Yesterday Felix had his final Occupational Therapy session for the year. He was obviously in a mood to pull out all of his tricks because he was amazing! First, he sat and drew on his 'mega-sketcher' for a really long time. He held the pencil with beautiful grip and concentrated on drawing some lines and squiggles. He also used some of the stamps (also magnetic) and made lots of circles and stars all over the board. If I asked him to put a star in a certain place, he would do it. After he had finished drawing, he got out his wooden puzzle with the animal shapes. I removed the pieces and put them on the floor and he picked them up and put them all in the correct place in no time. The OT asked me if she mixed the puzzle pieces up, would he still be able to do it. I said he could, so she mixed them up and he completed it again just as quickly! She also observed his upper body strength and noticed an improvement from the last time she saw him, which was great. She made the comment that (although he has delays in some areas), he is doing some things that other 'regular' two year olds aren't able to do yet.  I love how our kids with Down Syndrome can do things sometimes to  smash the stereotypes! They are SO capable of learning.... never underestimate their ability!

Ooooooh...tinsel!
A couple of weeks ago I was asked to be interviewed and videoed, along with Felix, for a DVD which is being made about companionable learning. Companionable learning is the way children learn by playing and experiencing day to day things with the trusted people in their lives eg. Family, friends, therapists etc. Today was the big day! I really enjoyed being filmed with Felix as we went about our usual play time and interaction with each other. It didn't seem completely unnatural even with a video and microphone set up close to us. It was something a little bit different and Felix seemed to enjoy having the extra attention.

After Felix went to bed for his morning sleep, it wasn't so fun any more. The camera was set up in our kitchen, with a bright light and a microphone up close to me; it was interview time. I have been interviewed before; earlier in the year, for a radio show. The interview aired live, and I think it went quite well. Today was a whole different story! As soon as the camera was rolling, I froze. I was asked questions I was very familiar with and all I could hear were crickets chirping in my head..... there was nothing going on up there! Anyone who knows me could tell you that I can talk about Felix for hours, but not today. In those first few minutes they may as well have been interviewing our cat! Oh dear! Thankfully, after my shaky start, I relaxed a bit more and was able to answer the questions although, I'm sure I could have done a whole lot better. The lovely group of people who did the filming and interviewing were so encouraging. They reassured me they got the footage they wanted and were really happy with it. I'm looking forward to seeing the final result, and I'm thanking 'technology' for the ability to edit!!
My little gingerbread men

Tomorrow, Nathan, Felix and I are going over to watch Aaron (12) receive an award at school. He has no idea he is getting it and I can't wait to see his face. Aaron always tells us (with a laugh) that he is "Just the average kid in the family". He does well at school, but doesn't get the straight A's of some of his older siblings. I have always told him that we don't care about grades as long as we know he is working hard, is a good friend and is respectful to his teachers. The award Aaron is getting tomorrow is for upholding the school values. His teacher has chosen him as the boy in his class, who has shown the values of respect, honesty, teamwork and pride this year. What an achievement! We couldn't be prouder of him.


Tuesday, 11 December 2012

Mischievous Monkey

Doing some Maths homework
Just when I thought he couldn't get much more mischievous, Felix showed me exactly what he was capable of today!

I was up in my room getting dressed this morning and Felix was wandering around the house (all the doors/baby gates were shut to keep him contained to the Felix-proof areas). After a couple of minutes I heard a tapping noise coming from the lounge room. Felix has been banging toys on the TV cabinet over the past few days, so I rushed down there to check if he was doing it again. What I found was a very content Felix, with Isaiah's Maths book open in front of him, drawing lots of dots on the page with a pencil (hence the tapping). He looked very proud of himself as he kept drawing a great picture all over the inside cover of the book. Just the way he had the book open wide, resting on the wood in front of the TV (which is perfect 'desk height' for Felix), looked so well thought out. How could I tell him off? Thankfully, it ended up being a book Isaiah was finished with already so there was no harm done, but it's still a mystery as to where the pencil came from. We have one of those mysterious fairy's in our house who leaves things out when all the kids swear they have put them away!

What do you mean this isn't safe?
I knew the day was coming soon when Felix would work out that he can easily climb out of his bed. Well....that day was today! I put him down for his morning sleep. He gave me a kiss and a cuddle, tucked his monkey and his 'ugly' sock cat under his arm, and lay down. Sometimes he chats for a while, after I put him to bed, and some days he won't go to sleep for over half an hour. I could still hear him chatting away about 45 minutes after I put him in his room,  so I thought I'd take a peek and see what he was doing. I opened the door to see him sitting on the floor, happily playing with his toys. He gave me an enormous smile (I'm sure he knew he was meant to be asleep), and continued to play. I decided to let him come out and have his lunch and figured I would try again later. He never goes without a day sleep so I knew he would be tired.

Just doing some cleaning out!
An hour or so later, I put Felix back to bed again. He looked so tired and I was pretty confident he would go straight to sleep. How wrong was I? After ten minutes I could still hear him talking so, after the events of earlier, I thought I'd better check on him. When I opened the door I couldn't believe my eyes! He was sitting in the third drawer from the top of his chest of drawers. It was wide open and he was sitting right in the middle of it, draping his clothes over his head before he threw them down onto the floor! The whole drawer was almost empty and his bedroom floor was littered with clothes. He looked so proud of himself! Little monkey must have stood on his bed, opened the drawer and then climbed up and into it. I am so thankful it is extremely heavy and the drawers can't be pulled all the way out. If it had tipped and fallen on him it could have hurt him really badly. Needless to say, I went straight out and bought locks for all the drawers and Nathan put them on as soon as he got home from work. Hopefully they work and he doesn't figure out how to open them. I wouldn't put anything past our little guy!

Monday, 10 December 2012

Final Playgroup for 2012

Busy drawing
This morning was Felix's last Special Needs Playgroup for the year. We got there a little bit early today, so I took Felix out of his car seat and sat him next to me in the front while we waited. It was pretty warm in the car, so I wound the windows down a bit which Felix thought was great. He leaned out of the window and 'talked' and smiled at the people in the car parked next to us. After a while, he sat on the seat and took his shoes off and then, the cheeky monkey, threw one of them out of the window. He thought it was a good 'game' to play with the man in the car next to us because it meant he had to get out of the car to pass Felix's shoe back to him. I quickly hid his shoes before he could do it again!

Relaxing with Daddy watching the football
Felix clung on to me a bit when the other children came close to him today, but he didn't seem panicked like he is sometimes. He just wanted to sit on me and observe the other kids for a while before he felt confident to wander off a bit. At one point he actually sat and played with an activity centre right next to another little boy. I was so excited; they were less than half a metre apart and Felix wasn't bothered at all. They were both focussed on what they were doing and sat quite happily which was awesome!

Admiring his handiwork
I sat with Felix and helped him to glue some pretty paper and shiny sprinkles onto the picture of a Christmas tree. He did a really good job of maneuvering the tiny little shapes onto the paper and pushed them down onto the glue. He was enjoying it so much that he decorated two Christmas trees instead of just one. He was also fascinated with some butterflies the kindy kids (who use the centre), had made and stuck to the windows. He kept looking up at the windows and signing 'butterfly'. He liked them so much that I think we might make some at home and put them on his bedroom windows. They were so bright and colourful and he'll love looking at them.

Sophie (Felix's little friend who also has Down Syndrome), came over to Felix to give him a cuddle. As usual, Felix looked horrified and leapt around my neck. He didn't cry though, which is an improvement, but poor Sophie looked a bit sad. I decided to try something different, so I asked Sophie if she could give Felix and I a cuddle together. It was the best cuddle. She wrapped her arms around both of us and squeezed us tight. Felix felt relaxed in my arms, and Sophie had a beaming smile. It was one of those very precious moments!

Sunday, 9 December 2012

Bit Spoilt

With his monkey and 'ugly' sock cat watching TV from the couch
Why does Felix have to go to bed so early? I'm so excited about Christmas, and today we put the lights up on our house. The only problem is he's been asleep for hours and it's only just dark enough to see them. It's a bit of a dilemma...haha! I love that, here in Australia, Christmas is during the Summer, but the downside is that it's also daylight saving so it doesn't get dark until really late. I think we may have to try and keep Felix awake just one night before Christmas so we can drive around and see the lights. Not sure how we'll go; he'll probably fall asleep in the car, but it's worth a try!

video

Spinning!

Felix's latest favourite thing to do is spin. He turns around and around in circles until he's completely dizzy, loses his balance and falls over. Once his eyes have stopped flickering, he gets straight back up and does it again. Sometimes he spins while he's holding his monkey and his 'ugly' sock cat, and sometimes he shakes some noisy toys while he spins. Other times he just spins because he can! It's pretty cute to watch, but I'm glad he doesn't ask me to join in; I get dizzy enough just watching him.

On the couch eating lunch
I'm sure that now Felix is two years old he thinks he's just like his big brothers. Until recently, Felix would always sit on the floor to play or watch TV. Over the past week, I have found him sitting up on the couch, looking very grown up, reading a book or watching the TV from there. He looks so tiny sitting in the big chair. I've always been a bit of a clean freak and very strict about the kids eating in the kitchen, but Felix was spoilt today. I threw a blanket over the couch and let him sit up there to eat his lunch. I'll probably live to regret that decision when he wants to do it all the time but hey, even two year olds need a bit of a treat from time to time don't they? ;)