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

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.

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!

Friends

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!

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 foot...so cute! Unfortunately, the big gap (Sandal gap) between his big toe and the next, didn't show up because he squished his toes together.

Perfection!

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!

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.

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