Monday, 29 April 2013

Kindy Boy

Who needs a slide when you can go
down the stairs...
Today was Felix's first morning back at his Special Needs Playgroup, since the school holidays. I was looking forward to taking him because, apart from Noah's party, he hasn't had anything to do with other little ones for a couple of weeks. I was hoping he hadn't regressed to being nervous around other children but, unfortunately, he had.

Felix seemed happy enough when we arrived at playgroup; he was smiling when I got him out of the car, but once I tried to put him on the floor, he wasn't so excited. He clung to me and, when I managed to remove him from around my neck, he lay face down on the floor. He's so funny, because he doesn't seem upset anymore when he does that (occasionally even giving some of the adults a sneaky smile from between his fingers), but he just shuts himself off completely from the other kids.

With his much loved monkey and
sock cat
When it was time for singing and a story, Felix suddenly came out of little imaginary cave. He can't resist singing and stories. He even shouted out "ee, i, ee, i, oh" when he thought we were going to sing Old MacDonald. He looked a bit confused when we sang another animal song instead, though. He has learnt some of the signs for the welcome song, and now signs his name (the letter 'F' twice), when we ask him what his name is. I'm so proud! After the singing, Felix reverted back to his face down position on the floor for the rest of the session. He wasn't interested in playing with anything, but seemed content just laying there. When it was time to go, he waved to everyone and blew kisses. He's such a funny little boy sometimes.

I hate to admit that Felix is growing up and won't be little forever but, today, I worked up the courage to call the Kindergarten, close to where we will soon be living, to enquire about enrolling him. I didn't think he would be starting until he was four, which would mean he would start at the beginning of 2015, but I found out he is eligible to start halfway through next year. Apparently children with a disability are able to start half a year earlier and attend either full time (15 hours a week), or part time, depending on what suits the child at the time. It was a huge shock to think that in a year's time, he could be a Kindy boy! I'm sure he will love it and it will be much harder on me than him.

Testing out the new kitchen drawer
I had a long talk to the Director of the Kindergarten and was really impressed with what she had to say. She is really excited to meet Felix and encouraged me to bring him in, as soon as we move, to meet the staff, and continue to do so over the coming year so he becomes familiar with the place. She was keen to learn some signing to make the transition easier for him, and her whole attitude towards children with differing abilities was so positive and inclusive. I was really impressed! She also told me about local programs for pre-schoolers, in the area, including a playgroup, kindergym, and story time at the local library. It sounds like we will have lots to do to keep us busy, and it will be a lovely community for Felix to be part of.

Sunday, 28 April 2013

Party Time

Watching the other kids
We had a beautiful afternoon, yesterday, celebrating Noah's first birthday party. I still can't believe he's already a year old! Being a Granny is so different to being a parent. I'm finding myself doing all the things which horrified me when I saw other Grandparent's doing them, like giving Noah chocolate. It's like an out-of-body experience being a Granny; I'm doing things I never would have done when Felix was a baby. Oops! I apologised to Joel and Mel the other day and promised Noah will never be given chocolate without their permission ever again (when they are looking... haha!)

Lots of  fun  
Noah's party went really well. Joel and Mel had booked the Kindergym, which is a fantastic venue for a birthday party for little ones. Noah invited a few of his friends, and Uncle Felix (of course), to come and play for a couple of hours. Felix has been cooped up so much over the past couple of weeks, because of sickness, so it was so good to see him exerting his pent up energy. He loves going to Kindergym and, being a nice, small group of kids at the party, he enjoyed it even more. He climbed things, went through tunnels and practiced his balancing. I'm amazed at how much more coordinated he has become over the last few months. He is able to walk across extremely soft surfaces really easily and navigates steps, and changes in the level of the floor, without any problems at all. He definitely has this whole walking thing completely worked out!

Trampolining champion
Felix still loves the huge gymnastic sized trampoline. Now that he is learning how to jump (still the funniest thing I have ever seen, with only one leg actually lifting off the ground), he is trying his new skill on the trampoline. I love watching him half skip, half jump his way across the trampoline. He thinks he's the most clever boy on earth and I'm sure he feels like he's jumping sky high. We have only ever had an old style trampoline at home, with no pads and no net around the sides, so it's never been suitable for Felix to bounce on; I've always worried I'd lose him through the springs. Recently, we gave that one away and bought a small round one, with pads and a net. It hasn't been put together yet, but I have no doubt Felix will spend a lot of time on it when he gets the chance.

Friday, 26 April 2013

Learning and Teaching

Uncle Felix and his nephew, Noah
I had just pulled my nice, clean sheets out of the dryer, last night, and was about to make my bed but I couldn't, because I had two gorgeous little boys sitting on it. I was watching Noah while Mel and Joel went to the shop, and he and Felix were playing with the ipad together up on the bed. Felix had been a bit wary of Noah, earlier in the day, so to watch him 'teach' Noah how to work the ipad was adorable. At one point, Felix picked up Noah's hand and helped him touch different things on the screen. Noah caught on really quickly and it was beautiful to watch them playing together.

Earlier today, Felix was playing with his ball. He has got really good at throwing accurately at a distance of about a metre and a half, which is fantastic. If there are two people playing with him, he will be really sneaky and look at one of us, with a grin, but feign the pass and then throw it to the other person. He thinks he's pretty clever. He still hasn't had much success with learning to catch a ball yet. I think we'll be working on that for quite a while before he develops the coordination but, in the meantime, we'll continue to encourage the throwing and kicking.
Teaching Noah about the ipad

Yesterday, Felix just wanted to be outside. He kept signing 'outside' over and over again before he talked me into putting my shoes on and taking him for a walk. We went out the front door and I decided to follow him wherever he decided to go. He walked up the street, stopping to touch some plants and look up into the trees at the birds. He walked down one of our neighbour's driveways to have a look at their boat in the front yard, and stopped at another yard to touch their beautiful green grass (which we don't have at our place).

Birthday boy!
The cutest thing happened when we were walking back towards our house. My best friend, Deb, moved away in January, and since then her house has remained empty. It's right next door to ours, and Felix has missed going over for 'cuppas' in the morning, and a play with Auntie Deb. Yesterday, Felix walked up to the front door, and peered through the glass alongside it and started knocking on the window. When he got no response he went over to the window, on the opposite side, and knocked on that one too. Still nothing, so he banged hard on the door and started 'shouting'. It made me really sad. I had to remind him that Auntie Deb didn't live there any more. I'm not sure if he understood, but he stopped knocking and headed back towards our house.

Today is our Grandson's first birthday. I can't believe it's been a year already! It has been a joy to watch him grow and learn, and to see Joel and Mel really thrive as parents. They have done such a wonderful job with him. Tomorrow he is having a party at the Kindergym. I can't wait to take Felix because he hasn't been out of the house much since he's been sick. He's going to really enjoying being able to climb and play, and jump on the trampoline. It's such a fantastic place for a birthday party. Happy birthday, Noah! We love you so much x x x

Wednesday, 24 April 2013

Testing the Boundaries

Wearing his new (huge) tshirt
I noticed, recently, that there have been a lot of people from Russia stopping by to read my blog. I just want to say thank you to all of you. I have heard that there is very minimal support for parents of children with disabilities in Russia, so I really hope that you feel supported through my blog, even though we are miles away from each other. I admire the resilience and the strength of everyone raising a child, with Down Syndrome, in countries that don't have the same resources, and level of acceptance, that we have here in Australia. Welcome to you all, and much love to you and your precious family members.

Climbing out of the high chair
Felix is finally back to his cheeky self. He's such a busy little guy and really likes to test all the boundaries, like any other two year old. Lately, he insists on hitting the TV with his fist, whenever he is tired or wanting some attention. If we put him in his room for a few seconds, he usually comes out and leaves the TV alone for a while. Last night he went over to the TV and then turned to me with a huge grin on his face. I knew what he was about to do and, sure enough, he hit the TV. I put him in his room and when he came back out, he left it alone for a minute, but then went over to it again and smiled at me. He had obviously been thinking about being told off for punching the TV, so he decided to try something different. Instead of punching it, he used his pointer finger and poked it really hard, over and over. Such a little monkey! I had to keep a straight face (almost impossible), as I put him back in his room.

Trying to look innocent
One of the cutest things Felix does at the moment is the way he gives kisses. Gone are the days of him giving me dribbly kisses right on the lips. Instead, he will point to my cheek and then lean in and give me a kiss on the spot he had pointed to. After that, he will often point to the other cheek and kiss me there as well. It's one of those adorable things that makes my heart melt completely.

After being cooped up in the house so much, over the past couple of weeks, Felix grabs every opportunity to try and escape the confines of the house. He rushes to the door every time someone either arrives, or leaves our house, and runs as fast as he can (which isn't too fast, but I'm sure in his mind, he's sprinting!) He has been spending a lot more time in the backyard with the dogs, too. He is totally confident around them now and doesn't get knocked over by their excited tail's wagging so much any more. He likes to find their toys and then sneakily drop them into the water bucket, making a huge splash everywhere. He thinks it's hilarious and we need eyes in the back of our heads whenever he's outside. If he's this busy at 2 1/2, I can only imagine what he's going to be like at 5!

Monday, 22 April 2013

Still Croupy

He pulled his hoodie down to his waist
Saturday night was another very long night with Felix. He was coughing so much that I went in and sat by his bed off and on throughout the night. Every so often, after a coughing fit, he would forget to breathe again until he finally gasped and took a breath. I found myself poking him to make sure he would breathe. I thought about taking him to the hospital but it was absolutely pouring with rain and freezing cold, so I decided to do a bedside vigil instead. I was hoping to make it until Monday when I could take him to see our GP.

During the day on Sunday, he was a little bit flat, but still had lots of energy. He ate a reasonable amount and, apart from a runny nose, he wasn't too bad. In the evening, he started to get a croaky voice and had quite a 'chunky' cough. By 1.30am this morning, he had been coughing like a seal for a few hours, so I decided to take him up to the hospital. I didn't think I could cope with another full night of trying to stay awake watching his breathing. Thankfully, the nurse gave him a dose of Prednisilone straight away, and his oxygen levels were OK, so I was able to bring him home again. He still coughed for the rest of the night, but at least I knew the steroids would be working to help open up his airways, so I was able to get a little bit of sleep.
I'm about to tickle you.......

I called the Doctor's Surgery first thing this morning, and was able to get Felix in to see his GP. He is so lovely with him. Sometimes I'm sure Felix gets sick just so he can go and see him. He gave me a prescription for Prednisilone so Felix could have another couple of doses. For the rest of winter, we will be keeping some in the house all the time. Unfortunately it doesn't last more than a few weeks once it's open, so we'll have to keep getting prescriptions filled just so we're prepared. The GP had an unexpected discovery when he looked in Felix's ears today; both grommets are still there!! I asked if I should cancel Felix's surgery, but he thinks his ears need a really good clean because they are full of wax, and he wasn't entirely sure if the grommets are exactly where they should be, so we'll go ahead with the surgery and see what they find.

We have been thinking of getting Felix a bigger bed. He's currently in a toddler bed, and wriggles around so much that he's forever banging against the sides. Today I went and ordered him a double bed. It's really low to the ground (I won't be able to store anything underneath it), so if he rolls out, he won't have far to fall. It will be a perfect size for bedtime stories, or snuggles on nights when he's not well. He's not going to be very tall so, hopefully, it will last him well into his teenage/adult years. After the past few nights of squatting down on the floor, half draped across the wooden edge of his bed, it's a nice thought that I'll be able to lay next to him next time and doze a bit.
.....told you!

Despite his restless night last night, Felix didn't want to go for a day time sleep today. I put him to bed, but could hear him playing and banging around for ages. Eventually, I decided to open his door and let him come out. The little monkey had managed to put both his arms through the neck of his jumper and had pulled it all the way down to his waist so he was naked from the waist up. He looked quite proud of himself. It looked hilarious, but he was freezing! After a snack and a bit of a play, he finally went back to bed and fell asleep for a couple of hours. He's still so easy to put to bed at night and tonight was no exception. The poor kid is exhausted. Hopefully he'll get a good couple of night's sleep and be much better soon.

Saturday, 20 April 2013

Three Hundred!

Not feeling the greatest
It's hard to believe this is my 300th blog! I mean, I know I can talk a lot (just ask any of my old school teachers) but, when I started blogging last year, I didn't think I would have enough to write about to get to twenty blogs, let alone three hundred! One thing I did know....I would never run out of photos!! Poor Felix is still the most photographed two year old going around.

Cuddles with Joshua
Our little guy has really struggled to get back to full health since his hospital stay, with croup, last week. Although the Doctor was happy with him on Monday, he has progressively gone down hill again over the past few days. Even though he still has a smile on his face and is as busy as ever, he is really congested and his nose is getting more and more revolting. Early hours of this morning (about 2.30am), Felix started coughing and by 3.30am it was sounding like croup again. He woke himself up because he was coughing so hard. I went into his room and he threw himself into my arms and held on tight for a long cuddle and then reached out to lay back down again. The coughing eased up, after a while, and he settled back to sleep.

It's now 9.30pm on Saturday night and Felix has just started coughing again. His voice was sounding really husky before he went to bed, so I knew what to expect a few hours after he went to sleep. I have packed a 'go bag' and put it by the front door so I remember to take everything he needs, in case he gets admitted to hospital again during the night. Hopefully, he'll stay settled and be OK, but I'm not feeling too confident right now.
6 out of 7 of our boys

Felix has had a fun few days. Two of our older boys have come to visit, so he has been in his element playing with them and having lots of extra attention. Joshua (16), is on school holidays at the moment. He is studying year 12 in the city, and has been working extremely hard, so we thought it would be good for him to have a break, for a few days, and come up for a visit. Felix hasn't seen him for a couple of months, but by his reaction, it was like it was just yesterday. It was beautiful to watch the reunion between the two of them. Joel, his girlfriend Mel, and our gorgeous Grandson, Noah, have also been up for a visit. They are going to have Noah's first birthday here in town, because most of Noah's little friends are here, as are all of Mel's family. We are looking forward to celebrating with him next weekend. Felix has enjoyed having his little nephew here to play with. They get on so well these days; it's so precious.
Hmmm... don't think he looks too worried about being in trouble!

Felix was being naughty, this afternoon, and hitting the front of the TV with his hand. I have been starting to put him in his room, for about 30 seconds, if he won't stop it. It seems to do the trick and he doesn't go back and do it again. Today, I was having a lay down when Felix started hitting the TV. Nathan didn't want to put him in his bedroom, because he would cry and it would disturb me through the baby monitor. Instead, he and Aaron thought it would be funny to put Felix into one of our glass front cupboards instead. I could hear them laughing and later, I saw the photographic evidence. Felix was inside the cupboard, with the biggest smile on his face, with Aaron laughing back at him. I guess you could say, I'm the disciplinarian of the family!

Wednesday, 17 April 2013

Lots of Therapy

Nothing like adding some ice cream
to the tomato sauce on your face.
It was a pretty hectic morning this morning. Felix had to go up to the hospital for his Occupational Therapy assessment today. I wasn't quite sure what to expect, or how the assessment would actually work, so I was curious to see how it would be done. I was actually quite shocked at how long a two year old is expected to sit on a chair, and concentrate for. Even the OT seemed quite apologetic and was going through the different exercises as quickly as she could. I think she was using a new program, so she wasn't sure how long it would take.

Felix had to sit on a chair at a little table and do a number of different exercises, testing his cognitive function and fine motor skills. Each exercise only lasted between 30-60 seconds, and then he would have to begin another one. Some of them were puzzles, which were timed. He was fantastic at those; puzzles are definitely his thing. He had to put some 5c pieces in a little piggy bank. He was tested on colour and shape recognition, and was asked to point to an object which was the same as one she had previously shown him. She quizzed him on things which were heavy and light. He was asked to pull apart some Duplo blocks, and to build towers out of other blocks. He even had to draw a picture, which he told me was a dinosaur. Felix was in a bit of a mood today (and wanted to throw the blocks/toys rather than do the exercise sometimes). He still wasn't feeling 100% so, all things considered, he did really well to sit for an hour.
Big stretch

We haven't got the final results yet, but the OT talked through his strengths and weaknesses, as she had perceived them through the test. She was really impressed with his cognitive ability. His comprehension and concentration has always been really good, and today was no exception. She pointed out that his fine motor skills are hindered in a lot of ways because of his hypotonia. He really lacks a lot of strength in his hands; he couldn't pull apart any of the Duplo blocks, so that's definitely something we will start to focus on more. I'm looking forward to seeing the final results to see what else we need to work on. She did a little bit of gross motor stuff at the end, and he seemed to do most of that quite well. It's always a little bit frustrating in a 'test' situation when your stubborn little person refuses to do the things he would normally do at home every day, but I'm only taking the testing as a guide. I'm glad the OT has had a bit to do with Felix at other times, so she's aware of what he can and can't do outside of that setting.

After the assessment, it was the Speech Pathologist's time to observe Felix for a little while. She is really happy with him and thinks the amount he can sign is amazing. She is not being unrealistic in her goals for him; she is completely confident he will eventually speak more verbally, but she knows it won't happen overnight. He is making all the right early speech sounds, including animal sounds. While he was looking at a book with her this morning, he saw a monkey and immediately started making "Oo, oo, oo, ah, ah, ah" sounds. The funniest thing was the expression on his face; he really forced his lips forward with the "Oo" sound, and had a wide open mouth for the "Ah" sound. His eyes were so round and full of expression! She thought it was awesome. We will continue doing what we're doing with him, giving him lots of opportunities for speech, through singing, stories and in general day to day life. I have no doubt he'll be chatting away when he's ready.

Waking up his big brother who is visiting
Finally, the Podiatrist came in to have a quick look at Felix's feet. She was very happy with the placement of his hips, knees and ankles, and is pleased with the way he is sitting and walking. She wants to see him in a couple of months for a more comprehensive assessment, but can't foresee any real problems at this stage. She likes the look of the boots I bought for Felix to wear. She said they're exactly the right fit and shape, so I'm pleased I don't have to rush out and buy more.

It was a very long morning, but definitely a successful one. I'm really proud of our little guy. He sometimes has to work extra hard to do the things that come easily to other 'typical' kids, but it just makes his successes so much more precious. His delays are becoming more evident as he grows, and his peers are racing ahead, but we couldn't be prouder. He is such an incredible little person, and we couldn't love him more. I heard, on the morning news program this morning, a group of women say they wouldn't care if their babies were going to be a boy or a girl as long as they're 'perfect and healthy' (meaning of course, no birth 'defects'). It made me want to scream at them through the TV. What is the definition of healthy? There are so many things we can't predict for the future, even in our children who are born 'healthy'. I'm glad Felix came into our lives to teach us a new definition of a 'perfect' baby. I'm glad he turned our lives upside down. The view is quite beautiful from here :)

Monday, 15 April 2013

Ten Kilo's. Double Digits!

Too cute
Felix had his follow up appointment today, from when he was in hospital. The Doctor wanted to check that he was still improving, and have a quick listen to his chest. I made the appointment for 3pm, so that Felix could go to bed at lunch time, have a nice long sleep, and be refreshed to go and see the Doctor in the afternoon. Well...that backfired on me. He didn't fall asleep until 1.45pm, so I had to wake him up to put him in the car for the appointment. I hate waking him up, especially when he's been sick. He dozed a bit more once we got there, but soon woke up with bunches of energy. I spent all my time, in the waiting room, chasing Felix as he tried to escape through the automatic doors, or attempted to run into one of the other offices, giggling the whole time. He kept the other patients, in the waiting room, entertained.

Inside his sheet fort in hospital
Our visit was short and sweet. Felix's chest sounded clear and his throat looked good; it was pretty red the night he was admitted to hospital. There was a student Doctor there for Felix's appointment (she also visited him when he was in hospital), along with our regular GP. The second we walked into the office, she said, "He's so cute!" I could still hear her talking about him to our Doctor as we were leaving. He certainly charmed her in no time! After Felix had his check up, he walked over to the scale and stood on it. I decided to have a look to see what he weighed and I couldn't believe it. He weighs 10kg (22lbs)!! After taking well over 2 years to get to 9kg, he has put on a kilo in a month, which is fantastic! A few people have told me they thought he looked taller, so that must be where the weight has gone; he certainly hasn't gone up a clothes size yet. Our little boy is growing up!
Well, I had to pull them all down to find this one!

The little guy loves reading. While I'm having my breakfast, showering and getting ready for the day, he often sits on his little couch, or on the floor in front of the bookcase and does some reading. Sometimes he gets a little bit enthusiastic when he's choosing his book, and ends up with half of them on the floor. This morning, I got out of the shower and found him happily sitting, buried in books, reading one of his favourites. He was really enjoying the peace and quiet of the morning.

Sunday, 14 April 2013

Love To See Him Laugh

This smile brightens my day
Felix has improved even more today. His nose is still a bit mucky and he has the occasional cough, but he is much better than he was yesterday. His nappies are a bit gross, but I think that's probably from the antibiotics. He had another extremely long day sleep today, for over 3 hours, so his body must still need a lot of rest. I have to take him back to the GP tomorrow for a post-hospital visit. I'm pretty sure the Doctor will be happy with him. I think it will just take a few more days for him to be back to normal. He had lots of little bursts of energy today, and has laughed more than I have seen him laugh for a while, so he's well on his way.

Those eyes!
Hopefully, by Tuesday, Felix will have improved enough to have his assessments done by the Occupational Therapist and the Speech Pathologist. The assessment is not a necessity, but we are doing it to see what areas of Felix's development we need to work on more specifically. I'm really excited to see what the results of the assessment are. I know which areas Felix is stronger in, like his fine motor skills, but I'm looking forward to being able to modify the way we work with him at home, concentrating more on the areas he is weaker in. We want to give him every opportunity to achieve everything he is capable of. He has already amazed us with his skills and abilities, learning new things all the time. I have no doubt he will push himself to be the best he can be. He's an inspiration!

After his assessment tomorrow, the Podiatrist is going to come and have a look at Felix's feet and legs. I have no idea whether there are any issues with them. We used a Happy Strap (every day from the age of 1-2 years old) to stop Felix from splaying his legs out wide, and to encourage correct leg positioning. This is just my personal opinion, but I really believe it helped Felix get into good habits with crawling and then walking. The Physio was very impressed with Felix's hip and leg placement, so we'll see if the Podiatrist says the same thing, 6 months after we have stopped using it. Hopefully he's maintained the correct position. If you're interested in checking out the Happy Strap, this is the website
Nice to see him laughing again

I love my football (Aussie rules), and my team was playing tonight. We decided to buy take away food for dinner and sit and watch the game. I just loved watching Felix. He sat in front of the TV, mesmerised by the game. He cheered in all the right places, clapping his hands and making encouraging noises. When people in the crowd waved, he waved back. It was adorable! He has started doing a lot of mimicking, especially when we sing to him, or when he sees people singing on one of his kid's DVD's. He has started opening and shutting his mouth, to mimic our mouths moving when we sing. I'm posting a video tonight and you can see him doing this right at the beginning. Enjoy... I think it's kind of cute!!

Saturday, 13 April 2013

A Sister's Love

Being silly with Bekah
Felix is much better today. He is still very tired, and not quite back to his busy little self, but he is definitely getting there. We have enjoyed a nice, quiet, lazy day at home today to give him a chance to rest and heal. He has still managed to keep us entertained by his antics. He makes every day so beautiful!

A while ago, our son Isaiah (now 14), was a 'guest blogger' here and wrote about his feelings towards Felix. Today, our daughter, Bekah (20), has written a letter; partly to Felix and partly to you, the readers of my blog. She gave me permission to rewrite it here. These are her words....

Felix Sawyer.... My perfect little man; you make my heart sing. You truly are a miracle. It's funny, people say kids with Down Syndrome have a 'lowered quality of life', but I look at you and all I see is happiness and joy.
Webcam selfies

Where do I even start? I remember first being told about you by Mum and Dad; there was nothing but joy! I remember finding out about your 'differently ableness'; still nothing but joy! Know that you were never a burden; always a joy, a miracle.

First cuddles
When Mum had Felix it changed our lives, in nothing but good ways; for me especially. Every day Felix teaches us how to take life as it comes, to smile at the little things, to love one another unconditionally and to just appreciate life. Things haven't always been easy for me. Life has been a real struggle sometimes. I have suffered from depression in the past; sometimes I still do, but looking at Felix...just knowing he is there, makes it so much easier.

Kids like Felix are not a hindrance, not a problem to society; they are like a healing balm. In a world so materialistic and selfish, to have these beautiful, loving people who love without a thought, and always make you smile and treasure every moment,  is a gift! It's not something to be feared or loathed. My little brother, a  child of two years old, with his cheeky smile and loving nature, helped me, saved me. He brought light into my life and adds a little more every time I see him. He is the greatest gift. He binds our family together, stronger than ever. He is our miracle.
At Bekah's pirate party
for her 18th

If you know someone with Down Syndrome, or next time you see someone with this 'disability' around, take a moment to get to know them. They are nothing to be afraid of. They have personalities, like the rest of us. They have their own fashion sense, their own humour, and an air of kindness and appreciation that is so rare to find in this day and age. They are just like you and I; maybe even a little better!
So much love

This is how I feel about our precious Felix. This is what I want everyone else to know. He didn't make our lives worse, he made them better, and he continues to do so every day. Even sitting with him in the hospital, when he had croup, he didn't fail to make me smile. As sick and tired as he was, he still took took a moment to make us laugh, and to cuddle and kiss Mum and I. He delights in making the people he loves happy. Our happiness is his happiness, and I've adopted this attitude and have applied it to my own life. I can't thank Felix enough for his gift of joy.

I love you so much little man. Thank you for being you. I couldn't be prouder to be your big sister.

Love, Bekah x x x

Friday, 12 April 2013

A Trip to Hospital

In A&E on Wednesday night before he was admitted
Wow! What a long couple of days! Just after I finished writing my blog on Tuesday night, Felix's coughing got worse, so we took him up to the hospital. We knew it was croup, and we didn't want it getting to the point where he could barely breathe (like last year). Unfortunately, even though we explained Felix's history of croup, the nurse wouldn't call the on-call Doctor up to the hospital to examine him. She seemed to have trouble with the monitor used to check his heart rate and oxygen levels, and only left it on him for a few seconds. She told us his oxygen was 100%, which I found very hard to believe. I really wanted him to be started on Prednisolone to nip it in the bud, but because there was no Doctor there, it couldn't be administered. Anyway, we were sent home with instructions to come back if he got worse. Thankfully, he didn't get any worse during the night and seemed OK during the day on Wednesday except for an even runnier nose.
All worn out

As the day grew later, on Wednesday, I just knew we would be up at the hospital again. By about 5pm, I had already heard Felix 'bark' a few times. His nose was pouring and he seemed very congested. We filled up the humidifier and put him to bed but, over the course of the next few hours, his cough got worse and worse. By about 11pm, his cough was more frequent and his breathing was noisy and more laboured.

Our daughter, Bekah (20), was visiting for a few days, so she and I headed up to the hospital with Felix and were so thankful to see the nurse who was on duty the last time Felix was really sick. She was awesome! She remembered how quickly he went downhill the last time (when he was admitted to HDU). She put him straight on a nebuliser and she called a Doctor straight away. He got to the hospital really quickly and was lovely with Felix. After checking him, the Doctor made the decision to admit him straight away. Much as the idea of staying the night in hospital didn't really appeal to me, I knew it was the best thing for Felix to be somewhere where he could be observed properly. He was started on Prednisolone straight away and antibiotics (his nose was green by this point). The Doctor wanted him tested for Whooping cough, just as a precaution, which meant we had our own room to keep him isolated from the other children. I certainly wasn't complaining. It was much easier to settle him in a quiet room than a crowded ward.
Feeling a bit better Thursday night in his sheet fort

He had quite an unsettled night on Wednesday night. He was 'high' on the Prednisolone for a while, so he was quite hyped up. Thank goodness for the ipad. He sat, in the dark, playing it until about 1.30am when he finally fell asleep. His oxygen levels were quite low through the night, so he tossed and turned a lot. Every so often, he would sit bolt upright and just stay there until he lay himself back down again. Poor little guy; it was hard to see him like that. Needless to say, little sleep was had by either of us.

The next morning, Felix's GP came in to examine him and decided it was best for him to stay in another night. I must admit, I wasn't expecting that, but when I realised how low his oxygen sats actually were (I'm not an expert on these things...still learning), it made sense. The Nurse told me she was a bit surprised that his oxygen sats were better when he was sleeping; once he started walking around, they went down. Felix was quite happy for most of the day, but was a bit flat again in the evening. Last night, he slept much better than the night before and, after seeing the Doctor, and having sats between 95-98%, we were able to take him home today.
Cuddles with Mummy

Felix was so happy to be home, but he's still not back to his usual self. He looks tired and his nose is still pouring. Earlier this evening, he started to have a bit of a wheezy sound again when he breathed in, and was a bit grizzly, but he settled well at bedtime and I haven't heard any scary sounds coming from his room. Hopefully he will continue to improve now and we'll have our energetic, happy little boy back soon.

Tuesday, 9 April 2013

Croup Again

Only the cool kids can wear two hats at a time
I currently have my ear glued to the baby monitor, listening to Felix's cough sound like it's becoming a bit croupy; I have a feeling we may end up at the hospital sometime tonight. Felix tends to go from a slight runny nose, to full blown croup within minutes sometimes. He hasn't had it for a while, thankfully, but yesterday afternoon when his nose started running and he wasn't quite himself, I had a feeling we either had another ear infection, or croup heading our way. Usually we use a vaporiser, in Felix's room, which keeps the air at room temperature but, last night, I got our old one out of the cupboard which gets his room all steamy and warm. I added eucalyptus to the water to try and clear his nose and chest, but he woke up this morning still very stuffy. Fingers crossed, he gets better and not worse.
Coffee face

I had to do the food shopping today so I headed off, wondering how Felix was going to cope with it. He seemed a bit tired and obviously not feeling the best. Usually he tries to climb out of the trolley, or he wants to walk and 'help' get things off the shelves, but today he was happy to just sit. He still pointed and waved to the other shoppers, but he was missing his smile and the light in his eyes today. By the time we got home, he was ready for a quick snack (he has to be really, really sick to stop eating), and then I put him to bed. I thought he would go straight to sleep, but I could hear "Oo, oo, oo, ah, ah, ah" through the monitor for a while. I guessed that he was playing with his little plastic monkey. When he woke up a while later, I found the monkey sitting up the top of a plastic jungle tree. I think I heard correctly!

Despite not feeling the best, Felix was still a monkey today, getting up to all his clever little tricks. This afternoon I could hear some clanging and thought he was playing with his little toy saucepans. After a while, I could hear him making a noise, kind of like calling out to me. I went to investigate and found that I had accidentally left the kitchen door open. There he was, sitting in his high chair; the metal jug and attachments from the coffee maker on the floor (hence the clanging), and coffee granules stuck to his face. He looked straight at me, as I walked in the room, and said (and signed), "eat!"  It was so funny, I had to shout out for Isaiah to come and have a look as well.
I climbed in here all by myself!

When I was cooking dinner tonight, Felix was very contentedly playing in the lounge room. I had a peek around the corner to watch him play for a while. He was spoon feeding his panda bear (fairly forcibly, I might add). Poor panda was obviously in the bad books! When he'd finished feeding the panda, Felix did some 'cooking' with his toy vegetables and fruit. He has a lettuce with the leaves attached by velcro, which he peeled off to make a salad (in the teapot). Other fruit and vegies were also added to the teapot and then eaten with a spoon. It looked delicious!

Well, I'm going to attempt to have an early night. I'm really hoping that I won't have to wake up before the morning but, with Felix's cough sounding the way it does at the moment, I have a feeling that I'll be burning the midnight oil!

Monday, 8 April 2013


Happy boy!
It was the last Special Needs Playgroup for this school term today. There were quite a few kids there this morning, but Felix seemed to cope with it quite well until right at the end. One of the children there occasionally gets quite vocal and needs to exert some energy, by running around. Felix is still quite sensitive to certain pitches, especially squealing or screaming. He had a couple of his 'silent' meltdowns, where he lay face down on the floor, hiding his face, until the noise stopped. At one point, his bottom lip started to drop, and I thought we might have a few tears but, after a quick cuddle he was full of smiles again and ready to play some more. He has got so much better.

Phillip and Felix
Felix played with playdough today, using some patterned wooden mallets to make prints in the dough. He also played with another tactile substance which is really hard to describe. It looks like tiny coloured beanbag beans, which are sticky, so they all stay stuck together when you roll them in your hands. You can manipulate it in a similar way to playdough, but it feels very different in your hands. I showed Felix how to make 'snakes' with it by rolling it between the palms of my hands. He concentrated hard and copied exactly what I was doing. He seems to prefer it to the playdough, maybe because it doesn't leave a sticky feeling on his fingers. He was quite content to sit and play with it for ages.
Putting his photo on the board

One of the highlights of this morning was being able to get some photos of Felix with his (not so little) buddy, Phillip. Neither Felix, nor Phillip, tend to spend extended periods of time playing closely with other children, so to see them sitting next to each other, exchanging glances and smiles for a good few minutes, was pretty awesome. They even gave each other a high-five!  In their own unique way, they seem to really like each other and make a cute pair sitting together. Phillip is almost twice as tall as Felix and is a year and a half older, but they just seem very content together. It's funny, because Felix gets nervous when tiny, little children are around him, and yet he chooses one of the biggest kids to be friends with!

Isaiah (14) started his work experience week at our local special school, today. I'm so proud of him! He has always had a special bond with Felix, and definitely has a heart for kids with a few extra challenges. He came home, this afternoon, so excited about his day. He really enjoyed it and thought all the kids were fantastic. While I was waiting to pick Isaiah up, a lady came up to me excited to meet Felix. It turns out, she is a regular reader of my blog. It's a small world! It's always really humbling to meet people who enjoy reading what I write. To the lady I met today (you know who you are), thank you for coming and introducing yourself, and thanks for your encouragement. It's people like you who make writing my blog so worthwhile!

Sunday, 7 April 2013

Daylight Saving with a Toddler....Aaaagh!

Waking up to this face is awesome!
I'm not going to complain about daylight saving ending, but I think it would be really great if toddlers could have their body clocks turned back in the same way as every other device in the house. A few days ago, Felix decided to start waking up really early again, which meant that this morning (the end of daylight saving) we were up with the birds, instead of enjoying our extra hour of sleep! Good thing he's so happy and smiley in the mornings; it makes the early start not so bad. He refused to have a day time sleep today, even though he was a bit grumpy and really needed one, and we kept him up until 7pm (8pm by his body clock), so hopefully he'll wake up a little bit later tomorrow morning. Mummy needs a bit of a sleep in!

Felix has enjoyed lots of singing today, complete with all the actions. His latest favourite song is, 'Heads and Shoulders, Knees and Toes'. He stands up and very enthusiastically puts his hands on his head, then his shoulders, then his knees and his toes. He's getting quite good at 'Eyes and Ears and Mouth and Nose' as well, although he sometimes still gets them a little bit mixed up. He definitely has the right idea, even if he almost pokes himself in the eye, and actually puts his finger in his mouth. He looks so completely adorable when he does it that I can't help but giggle.
Bathing with Nemo is so much fun!

It was such a beautiful day today, so Felix and I went and sat outside and played in the sandpit for a while. I love watching the development of his play as he gets older. Today we made footprints with his dinosaur toys. I showed Felix how to walk his dinosaurs across the sand to leave their footprints behind. He caught on very quickly and was soon picking up different dinosaurs to see what their footprints would look like in the sand. After we had made lots of dinosaur footprints, we made some Felix footprints and handprints as well. I had to take a photo of his perfect little footprint. You could even see all the little wrinkles on the soles of his cute! Unfortunately, the big gap (Sandal gap) between his big toe and the next, didn't show up because he squished his toes together.

Something which has really amazed me, recently, is the way Felix has been able to recall the animal signs, I taught him months ago, which he has never used before and I haven't used for ages either. All of a sudden, yesterday, he was signing zebra, goat, lion and giraffe (even speaking the 'affe' sound), when we were looking at books together. He takes my breath away sometimes. He obviously has a huge wealth of knowledge up in that cute little head of his. He must store it away until such a time as when he decides to use it. It was so much fun watching him reel off so many different signs as we looked through the pictures. He has a huge repertoire of animals in his signing vocabulary now. He makes me proud every day!

Friday, 5 April 2013

First ride

His first ride in a teacup

I was pretty excited today when I went to the letterbox and found the final copy of the DVD, on companionable learning, that Felix and I were filmed as part of. I was a bit worried about how I would come across in my interview, being so nervous on the day, but it all came together really well. Felix, of course, look adorable (even with giant mosquito bites on his cheek). There were several families, who took part, and it has been put together beautifully, stressing the importance of companions (parents, friends, teachers, pets..), on children's learning. I hope it will be a valuable resource to all who see it.

Felix has been his usual busy self today. I had to go over to the shops this morning, and he insisted on walking, instead of being carried. Part way across the mall, I let him sit on one of those coin operated rides because he likes to climb on them, and touch the buttons and steering wheels. He always says, "Ooooh" and points toward them. Until now, I have never put money in one of them because he was happy to just sit on them. This morning, I decided to see what his reaction would be if I put a coin in to make it move. I actually thought he would freak out and try to climb down. Instead, he sat there with a huge smile on his face, loving every second. When it finally stopped, he signed, "help...again". I think I have probably created a monster...I'm sure he won't be satisfied with a stationary ride any more. Better start collecting some coins.
Loving the clowns at the fair

When we got home, he said (and signed), "eat", very emphatically! I still laugh at him saying and signing it at the same time. It seems so much more desperate...poor starving boy! I made him a plate of food and spread out his mat on the floor. He watches Playschool while he eats his lunch. It makes it much easier for me. If I put him in his high chair I have to stay close by because he tries to climb out, and because he takes SO long to eat, it's not really practical. There is only so much I can do in the kitchen while I'm waiting for him to finish. I've found that a picnic rug in front of his favourite show (just for lunch time), works a treat. He sits perfectly still, slowly making his way through his lunch. The last few days I have noticed that during the introduction to the DVD, they say A..B..C. Felix listens to the voice say A, and then he says B at exactly the right time. It's only something small, but anything resembling a word, or letter recognition, is so exciting for us.
Nothing cuter than when this little face pops up at the
end of the bed!

Felix has been waking up super early again, the last few mornings. The weather has cooled down a lot, so I'm wondering if he has been getting cold in the early hours. He never keeps his bed covers on, and he pulls his socks off his feet. Tonight I've put a onesie, with feet in it, on him so hopefully he'll stay nice and snug and have a sleep in. He has got really tired, during the day, because he's been up so early, but he's still been fighting his day sleep. Yesterday, he refused to sleep and managed to get the lid off his nappy box and had nappies and baby wipes all over his room. He also knocked over another two boxes, containing all his paints, crayons etc. I'm so glad they are sealed well and he couldn't get the lids off them. I can only imagine the mischief he would have got into. Today, I removed all the offending boxes (just in case), and he finally fell asleep after an hour.

Thursday, 4 April 2013

Old MacDonald

Getting so clever at building
I hope everyone had a wonderful Easter. I get really excited to make holidays special for our kids and, with Felix being at such an inquisitive age, it's extra fun. I decided to do a trail of tiny Easter eggs for Felix to follow, rather than an Easter egg hunt this year. The older boys asked to be woken up so they could watch Felix follow the Easter egg trail; it was nice to see them so excited for him. It was every bit as good as I had hoped. Felix's eyes couldn't have been any wider when he saw all the little eggs. We gave him a basket to collect the eggs in, and he started picking them up, one by one. It didn't take long for him to catch on and he started picking up handfuls at a time. He followed the trail (a very long process), all the way up to the top of his little playground to find his chocolate bunny. The funny thing was, he wasn't really interested in eating any of the chocolate. He preferred the fried eggs we cooked, later, for breakfast!

I took Felix to see the GP yesterday, to get the results of his ultrasound. He doesn't have a hernia, but will still require surgery to close off gaps in his inguinal walls (just like Isaiah and Aaron's surgery). Apparently, in the womb, after the testes have descended, the inguinal walls are meant to close over, but Felix's have stayed open. What that means is that he could develop a hernia, or his testicles could move into the gap and then get stuck. Thankfully, the GP doesn't think the surgery is urgent, but he would like Felix's Paediatrician make the final call as to when he needs it done. That means Felix has one less general anaesthetic, in the next couple of months, which is a relief! Hopefully we will be able to spread the three of them out over a period of time.
Love our funny boy!

Last year, Felix's Great-Grandma gave him a glove that has an animal on each finger, to sing Old MacDonald had a Farm. He has always loved it, but he has just started interacting with it and 'singing' all by himself. The other morning, I was in my room and I could hear Felix making some funny noises at the other end of the house. I listened more carefully and was sure he was saying "Ee,ei,ee,ei,oh". I snuck into the lounge room and found him, with the glove on his hand, 'singing' Old MacDonald. It was the cutest thing. He was trying really hard to put up the finger, with a particular animal, and then sign the animal's name while singing along. It's so beautiful to watch him entertaining himself, and to incorporate signing, singing and fine motor skills, is just awesome. He has come such a long way!

Singing Old MacDonald
Felix loves music. It's a well known stereotype that people with Down Syndrome all love music. I'm sure they probably don't. After all, people with Down Syndrome have their own unique likes and dislikes, but Felix does nothing to break that stereotype. He has loved music since he was a tiny baby. He even danced to it in my womb. I felt privileged to squeeze in a really quick (45 minute), visit to Early Intervention at Down Syndrome South Australia, before Felix's last hospital visit. They were having their last session with a wonderful team of people, using movement, music and dance to work with the children. It was so much fun. Felix was a little bit shy to start with, but by the end he was really getting into it, dancing and moving to the music. I was so disappointed that we had to leave. I hope we get the opportunity to participate in a similar class in the future.

Today, Felix had some group therapy at the hospital. His favourite part of the session was the singing and, wouldn't you know it, they sang Old MacDonald had a Farm. He didn't sing out loud, but he moved his mouth, to the parts he knew, and signed the animals. He chose a cat first and then a horse. Jacob (who is 4 months younger, and also has DS), chose a crocodile, which Felix thought was pretty cool. There was a lot of snapping of hands and giggling as we sang about Old MacDonald's crocodile. The very first song, was the 'Hello' song. Felix was being shy and had his head buried in my lap with his hands underneath him. When we sang hello to Felix, I could see him signing his name even though his head was still in my lap. Then when he had to wave hello, he reached his arm behind his back and waved, without looking. It was so funny. He's such a crazy character sometimes. He may be tiny, but he makes up for it in personality!
Following the Easter egg trail