City Fun

Laughing with Granny

The last few days have been a bit of a blur. We have been in the city, while Nathan has been on a course for work. As usual, we have had plenty of running around to do so Felix is pretty worn out. At the moment, he is sound asleep in his car seat, and I'm sitting in the car taking advantage of my portable internet modem. It's pretty handy to be able to access the internet and write my blog in the sunshine. We are just waiting for Nathan to finish for the day before we start our long drive home.

Covering Papa with toys

Felix has enjoyed catching up with his older siblings this week and had a lot of fun spending a whole day with his Granny and Papa yesterday while I was in hospital. I was happy to go in for my surgery, knowing that Felix was so happy and settled. He stood on the front porch and waved as my Dad drove me to hospital in the morning, but it was very half-hearted, because he was enjoying being outside and looking at the birds in the garden. He wasn't the least bit worried about me leaving!

When I got back to my parents place yesterday afternoon, Mum told me that Felix was asleep. I was so surprised, because he barely ever sleeps during the day any more, and I wasn't sure where he would have gone to sleep because I had already packed up the porta cot. I walked into the lounge room, to see him curled up on a pillow, with his legs tucked underneath him, sound asleep. He has never gone to sleep in the middle of the floor, especially with other people around, so I couldn't believe it. He must have been so tired. I'm glad he was sleeping because I was still pretty drowsy from the anaesthetic, so I went and had a sleep for a while as well. 

Hanging things from Daddy's ears

When we both woke up, Felix showed me the new bird sound he had learnt at Papa and Granny's house. They had been watching one particular bird for quite a while, and Felix copied the sound really well. He always signs 'outside' when we are at my parent's house because he knows that one of them will take him out to see what they can find in the garden; sometimes it's a butterfly or a flower, but mostly Felix enjoys seeing the native birds that fly around there all the time. 

Nathan and I were out having dinner, earlier in the week, and we were both talking about how easy Felix is to travel with. He is completely happy to travel long distances in the car, he is wonderful to take out to restaurants and he sleeps through the night no matter where we are, even if it's not familiar to him. He particularly enjoys going out to eat and, if he is allowed to walk around, he will go up to people at other tables to say hello, and will always give them a huge smile. This morning, however, he did nothing for the stereotype of people with Down Syndrome 'always being happy'. I had to go to the shop to grab a few things and he let me (and everyone there), know that he was not impressed about being at the shop AT ALL. I can assure you, when Felix wants to be vocal, he is extremely loud! He settled after he spotted a pet store and we went inside. Thank goodness for puppies and kittens!!

Our Climber

Look at me!

Felix had a wonderful time yesterday. He had his first experience with waves at the beach and he thought it was fantastic! He bravely walked out deeper and deeper, which was great for strengthening the muscles in his legs. He had to work on balancing and keeping himself steady as the little waves tried to knock him over. Most of the time he managed to stay on his feet, but when he did fall over he really enjoyed it and, by the time we left the beach, he was soaked from his neck down (we're still trying to keep those problem ears dry!) He enjoyed playing in the sand, and watching all the dogs walking up and down the beach. The highlight of his afternoon was when a military helicopter flew really low over the water, just above our heads. Felix couldn't take his eyes off it; he was in awe!

Felix and Liam

This morning, Felix and I met with one of my lovely friends and her gorgeous little boy, Liam. We were going to meet at a playground outside, but it was pouring with rain so we had to opt for an indoor playground instead. Liam happily toddled off to play on the playground but, Felix was a bit too overwhelmed by all the children, so he had some cuddles with me instead. Even though he was on my lap, Felix loved looking around as the other kids rushed by him. He enjoyed the sights and sounds of the shopping centre, and charmed the ladies sitting nearby, by smiling and waving at them from over my shoulder. I tried to get some photos of Felix and Liam together, but Felix freaked out sitting so close to Liam. I took some anyway, and they're pretty hilarious. This one, on my blog, is probably the best one. Most of the others, Felix is covering his face with his hands!

Getting very clever with his
climbing

Later today, we spent some time with Bekah and Joel (a couple of Felix's older siblings). I love seeing his face when he sees them; it just lights up. It never seems to matter how much time has gone by since he saw them last, he is always so happy to see them and throws himself into their arms for cuddles. Felix enjoyed walking up and down the stairs at Bekah's house. He wants to climb everything these days. It makes me so nervous. Yesterday, Felix climbed into the pram when we were sitting on the grass, near the beach. I wasn't too worried because he would have landed on the soft grass if he had fallen. Tonight, however, he tried to climb up onto a little concrete ledge at the hotel we were at for dinner. Unfortunately, he felt how hard the floor was when he landed with a 'bang' on the tiles. Nathan thought I was close enough to grab him, and I thought Nathan was close enough. The result was that neither of us grabbed him and he ended up with a big bump on the side of his head. I'm so thankful he didn't split his head; judging by the look of it, it was pretty close! After some snuggles, our tough guy was up and about again, looking for his next adventure!

Mr. Fix It

Hmmm.... that's how it works!

Felix is a huge fan of giving cuddles these days and it's one of the cutest things I've ever seen! He's gone from just giving a bit of a squeeze, to a squeeze plus a few pats on the back. They are typical 'boy' hugs; the sort that male family members give each other when they're trying to show love, but don't want to get too gushy about it. His 'blokey' hugs, coupled with his big, wet (not so blokey) kisses are pretty irresistible!

Nate spent a bit of time doing some training with the dogs today. He brought them inside, one at a time, and rewarded them when they followed his instructions. We're really lucky to have such great dogs, who are so gentle with Felix. Even though two of them are huge, compared to Felix, they seem to know to be gentle when they are close to him and, even if they're running they'll stop, to avoid crashing into him. Felix absolutely loves them. He is getting more confident around them and will wrap his arms around each of them and give them one of his pats, like he does on our backs when he hugs us. Felix really enjoyed helping Daddy train the dogs today although, he was encouraging them to be naughty by opening up his mouth near theirs, and trying to get them to kiss him. They were very good, and only snuck in the odd lick every now and again.

So helpful

Later this afternoon, Nathan was pumping up the tyres on Felix's pram, when he called out to me to come and look at something. I walked down the hall to see Felix, trying as hard as he could, to use the pump. Nathan had shown him how to do it and he was giving it a really good try. The look of concentration on his face was priceless. He was really studying the pump, like he was trying to see how it worked. About an hour later, I noticed that Felix had found the pump again and was sitting next to the pram, putting the nozzle of it up to the valve on the tyre. His attention to detail is amazing. He had obviously really studied how Nathan had attached the pump to the valve, and he was trying to do the same thing. I'm now having visions of Felix pulling apart things in our house to find out how they work.....Hmmmm....

Supermodel Felix

Who, me?

Oh my goodness... Felix actually had a day time sleep today! He had been in his room for an hour and I could hear him playing and laughing. I was about to go in there and get him up, but all of a sudden he went quiet. I peeked into his room and, there he was, fast asleep on the floor, surrounded by his toys. He must have had a sudden wave of tiredness come over him because, usually, he will climb into his bed before he falls asleep. For the first time, in a couple of weeks, I was actually able to get some things done without my little shadow following me.

Such a little dude

A while ago I mentioned, in my blog, about how Felix and I were videoed, and I was interviewed, for a DVD being put together about 'companionable learning'. It was a really fun (even if I had stage fright when I was interviewed), and an exciting project to be a part of. Today, the photographer came back to get some more 'still' photos to enhance some of the things I'd said when I was interviewed. Felix was like a supermodel for the photographer. I could not stop laughing. He pulled out his whole repertoire of different poses and expressions; including his classic 'crazy face', which had the photographer in stitches.

Felix has been a bit cheeky the past few days, acting like a typical two year old. He's been giving us cheeky grins and then throwing things. He has been getting grumpy if things don't go his way, or if he gets frustrated. When we were getting to the end of the photos today, Felix got that little twinkle in his eye and started grinning, then he started throwing his toys, rather than playing with them. It's so hard to keep a straight face and tell him to stop throwing things and to be gentle. He does it all with such a huge smile on his face that it's almost impossible to tell him off without smiling ourselves.

How many hats can you wear?

The highlight for today was when I asked Felix to go and get a book, for one of the photos. He walked over, picked one up, and said "Book". He didn't sign it, he actually spoke it; not just once but several times. I couldn't contain my excitement. I kept saying to the photographer, "He's never said that before!" He must have thought I was mad. It was awesome! Felix carried the book over to Nathan and said "Dad" again as well. I wasn't sure if he would continue to say, "Dad" after the other day, but he said it about three times today. It's so exciting to see his speech develop; it's like he's just had a little burst of learning which is fantastic. I  wonder what he'll say tomorrow!

An Adorable Visitor

Still got a smile :)

After a day and a half of antibiotics, Felix is a bit better. He's still getting a fever every so often, but not as high as it was before. He has some energy back, but has been winding down fairly quickly in the evenings. Unfortunately, he's still decided that he doesn't need an afternoon sleep and, much as I'd like to, I can't really explain to a two year old that he would get better more quickly if he had extra sleep. I don't like giving any of our kids medication but, on the Doctor's advice, I've bought a bottle of Nurofen (for the first time ever), and Felix has been settling really well after having a dose before bed. I've been giving him the lowest dose, but it seems to be enough to ease any discomfort, and helps him go to sleep and stay settled all night. He's such a tough guy!

I have to take Felix back to the Doctor tomorrow. He wants to see if he can get a good view of his eardrums because he couldn't see them when we were there last. If he can't see past the wax, he wants to talk to Felix's Specialist to see if he can put some drops in his ears, to dissolve the wax, so he can see his eardrums properly. I've never heard of it before, but it's another month before we take Felix back to the hospital again, so it would be good to know what's going on.

Taste this Noah!

Our Grandson, Noah, and his Mummy, are back in town for a couple of weeks, which is so exciting! Noah came over for a play today, while his Mum caught up with a friend. He gave me the biggest smile when he came through the door; it was completely adorable. Felix wasn't quite so excited about having his nephew arrive just as he was about to eat lunch. He also wasn't excited when Noah decided to try and feed him his lunch. He gave him a very grumpy look and climbed onto the couch to have a sulk for a while. Granted, he's not feeling the best, so he wasn't a bundle of laughs before Noah got there either.

Such gorgeous boys!

After a while, Felix warmed up to the fact that Noah was here to stay for a while. He went over and patted him on the head with an "Awwwww". He even gave him a kiss and sat and played with him for a while. It was great to see them both together again. They are pretty much the same size now; the only thing different is that Felix looks older in the face. It won't be too much longer and Noah will be towering above our little shorty. I'm looking forward to watching them as they grow. I'm so glad that Noah will grow up seeing people with Down Syndrome as just a 'normal' part of life. He won't know anything different because he will have always had Felix around. That goes for our future Grandchildren too. I'm thankful that there will be a whole new generation of kids, growing up, with an acceptance and a love for people with Down Syndrome.

Did I Say I Despise Ear Infections?

Look where I found Felix when he
woke up this morning

On Saturday afternoon I thought Felix was getting sick, because he'd been a bit flat, but by later that night, he was full of energy and seemed fine. All day Sunday and Monday he was OK too, with no signs of being unwell. In, what has become the norm for Felix, he suddenly got very lethargic late this afternoon. He lay down on the couch and, later, was laying on the floor. When I went over to see if he was feeling alright, I picked him up and noticed he was burning with a fever again. I still can't believe how quickly his fevers start. Being already 3pm in the afternoon, I didn't like our chances of getting him in to see our Doctor, so late in the day, and was dreading the thought of having to sit up at the hospital again.

I decided to try and get Felix in to see the Doctor anyway. Thankfully, when I mentioned to the receptionist that he was running a fever (again), she told me to bring him down there in an hour. I think they're so used to Felix being there with a temperature, that I could probably call them and say, "Can I book him in for the usual."

I knew the Doctor was going to say that Felix has an ear infection. With Felix it is always his ears! I also had a feeling it would be his right ear again, which it was. The right ear is the one the surgeon had trouble putting the grommet into, and the right one was the one infected last month as well. The Doctor couldn't see either of Felix's eardrums properly because there was so much wax in there (something that has caused issues for Doctors since he was tiny), but there was definitely an infection. Poor little guy...he never complains when he gets an ear infection. He doesn't scream or cry; he just gives us all extra cuddles until we notice he has a fever. He's such a little trooper!

Only the cool kids wear bowls on their heads

The highlight of today was when Felix decided to say the word "Daddy". He has continued to be so stubborn when it comes to saying that word, shaking his head and refusing to say it, even though we heard him say it months ago. I think it was a bit of a game to him. We would say, "Say Daddy!", and he would either sign the word or click his tongue and laugh. Today, Nathan was holding Felix and he looked at a photo of Nathan on the wall and just said, "Daddy", as clearly as anything. Once he'd said it once, he said it a few more times. Needless to say, Nathan had a big grin on his face. He's waited a long time to hear him speak that word. Hopefully we'll be hearing it a bit more over the coming days.

Our precious little guy is tucked up in bed now; fast asleep. Hopefully the antibiotics will kick in quickly and he will wake up feeling much better in the morning. He's such a sweet little boy and I hate seeing him unwell.

Party Time

Loving the bead maze

It seems to have been a week full of time spent in crowded rooms, with lots of little children running around. Yesterday, Felix and I went to help celebrate Jacob's second birthday. I've mentioned Jacob in my blog before. He and Felix are two, of only three, little ones in our town who have Down Syndrome. The other is the beautiful Sophie, who is a little bit older than the boys. We met Jacob at Easter time, when he was a couple of months old, and he and Felix have been little buddies ever since. Jacob is so much bigger than Felix now (even though he's 4 months younger). It's hard to believe Jacob was ever such a tiny baby, who needed surgery to repair his heart. He has gone from strength to strength and is doing so well!

Happy with Mummy

Felix was a bit of a leech at the beginning of the party and clung onto me tightly. It was OK, except that it was also about 40 degrees (celsius) in the shade and I was melting from his body heat. He was very interested in everything going on around him; the balloons, the toys and the people walking around, but he wasn't quite brave enough, initially, to let go of me. One thing that surprised me, however, was that he was happy to eat. Usually when there are other children around, including our baby Grandson, Felix refuses to eat. After I got him a plate of food, he sat next to me and ate quite happily. That was definitely a breakthrough moment for him, especially considering the amount of kids milling around.

Leaping into Julianne's
arms

After a while, Jacob's Mum asked me to take some photos, so I removed Felix, from my lap, and put him on the ground next to me. I asked a friend if she could look after him for me and I went and took some photos. Just as I walked away, I saw Felix throw his arms around her neck (her son was in her lap), and give her a big cuddle. It's the first time I've been able to walk away, when Felix is feeling a bit anxious, and not have him cry. It was great to see that he was comfortable to sit with someone else while I walked away. I think he must be beginning to realise that I'm still going to come back, so he doesn't need to be worried.

Happy birthday Jacob!

For most of the party, Felix was eyeing off a toy. It was a little table with wire bead mazes all over the top of it. I could tell he really wanted to play with it, but was too shy. I pulled the table a little bit closer to Felix, until he decided it was a safe distance away and, finally, left my lap and stood and played with the beads, pushing them along the wire. It was a fantastic toy; so colourful, with so many different shapes. Felix thought it was wonderful, and I enjoyed watching him play alongside the other children at the party. He's slowly growing in confidence. We have our good and our bad days, but there are a lot more positive ones recently. I'm sure the day will come when he will run into a room, full of children, and be completely comfortable. On that day I'll probably be wishing he was still snuggled on my lap.

Hard Head

Hey, good looking

Felix was really flat when he woke up this morning. When I went into his room, he was laying on the floor cuddling his monkey and grizzling quietly to himself. I picked him up and carried him to our bedroom where he just snuggled in to me and lay there, perfectly still, having cuddles. Much as I enjoyed cuddling him (he's usually too busy these days for more than a quick hug), I knew that the only time Felix is that cuddly is when he is sick. When Felix gets sick, it's generally either an ear infection or croup, so I expected him to go downhill during the day. Instead, he seems to have picked up a little bit so, fingers crossed, it was a false alarm.

It was really hot today so it was a good day to get the windows washed and get some Vitamin D from the sunshine. Felix was keen to go outside, so I took the cover off his sandpit and started to wash the front windows. When I looked back at Felix, I saw him squatting down next to the sandpit, with his head resting on the edge of it. He was obviously still feeling a bit ordinary, so I took him back inside and he sat on the opposite side of the windows, smiling at me as I washed them. I'm sure he stayed a lot cooler than I did outside!

Kisses for himself

Later in the day, I went out in the backyard to wash the back windows. Felix was feeling much better, so he came outside with me. He's constantly signing 'outside' lately, because he wants to play with the dogs, so he was happy to be out there. I filled up his little play table with water and he had a great time playing and splashing. Of course, he found the dog's bucket of water as well, so he ended up completely soaked. After a while, he seemed to be getting really tired again so I walked over to get him and take him inside. Just before I got to him, he slipped on the wet concrete, fell back and bumped his head really hard. Felix has to have one of the toughest heads because, after a few tears and a big cuddle, I checked his head and he only had a tiny, little red mark there; no bump and no blood! After a nice splash in the bath, he was perfectly happy and ready to play again.

Each day with Felix brings with it something we find funny. He has such a huge personality and never ceases to make us laugh. Tonight, Aaron had gone to a friend's house, so we only had Isaiah and Felix home for dinner. It had been such a hot day, so Nathan and I decided to get junk food instead of cooking. I drove up the road to Hungry Jacks (Burger King, to my American friends), and bought our dinner. When I got home Isaiah opened the front door, with Felix up on his shoulders. The second the door opened, I heard the word "Yum", as loudly as anything, come from Felix. He speaks so few words, that I always think it's awesome when he uses one of them. We only buy take away food about once a month but, for some reason, it always manages to get a "Yum" out of Felix. It makes my home cooking feel very insignificant when a box of fries can bring so much excitement. He's such a funny boy!

Crazy bunch

Just before Felix went to bed tonight, Nathan and I were playing around with the camera on Felix's ipad. We showed him how to take photos of himself, so he was snapping away like he was the paparazzi. When he looked back at the photos of himself, he kissed his own pictures. Hahaha... he has such a healthy self esteem!  After Mr. Vain had finished kissing himself, we took a few photos of the three of us. My favourite is  one of the three of us doing Felix's crazy face. I just had to post it on my blog to share it with you all :)

Let's Dance

Felix at dance class wearing his Valentines Day sticker

Yesterday we took Felix back to his dance class for the first time this year. The last couple of times he went, he really struggled in the class. He didn't cope well with being in such a small space with so many children. Coupled with the loud music, and the kids singing and dancing, and it was Felix's worst nightmare. For the third activity this week, however, Felix showed us how much he has relaxed being around other children. He coped so much better with dancing, than he did last year.

When we first arrived at the dance class, Felix's automatic reaction was to grab onto me (including my hair, which I wish I'd put into a ponytail). He looked really nervous as he saw all the other excited, little people filling the room. He tried, with all his might, to climb into my lap; and I tried, with all mine, to distract him. Thankfully, the dance teacher already had some shakers (pom-poms) out for the kids to play with, while we waited for the class to start. I tickled Felix's toes with one of them, and then shook it on top of his head. Before long, he was giggling and laughing.

His new dinosaur puzzle

When the singing and dancing started I stood Felix up, held his arms, and moved them to the music. Every now and again, Felix would try to sit back in my lap but I would just stand him back up and keep singing and  moving him around. For some of the dances, I picked Felix up and danced around with him, which he thought was really funny, especially when we had to reach up high and then drop to the ground. He was laughing the whole time. I'm so thankful that most of the songs were Felix's favourites, which kept his attention and distracted him from being anxious. We're still a long way from him dancing by himself, but we've also come such a long way from the panic of his very first lesson. It's the little things....

I really despise buying toys, just for the sake of buying toys. I try hard to find toys for Felix which have some sort of educational element to them and will challenge him in some way. I'm a fan of wooden toys. I love how sturdy and well made they are and, call me old fashioned, but I think they look beautiful too. Recently I came across a website selling wooden toys, so cheaply, in a short sale. I bought a couple of things and they arrived today. Now I wish I'd bought more because the quality is amazing! Felix is a real whiz at puzzles. He has a few favourite wooden puzzles which he will sit and do over and over again. The one that arrived today is a dinosaur puzzle with beautiful, bright colours. The dinosaur pieces are all flat on the bottom (and quite thick), so if Felix isn't using them in the puzzle, he can stand them up and play imaginary games with them too!

Never say I won't know how to do
it yet!

The other toy that arrived today was a box of wooden, threading beads. I figured it was probably a bit advanced for Felix yet (the age on the box said 3+), but the price was so good that I grabbed one to keep for when he's older. When I opened the package today, I thought I'd let Felix have a look at the beads and show him how to put them onto the string which came with them. He was really interested so, while I did some cleaning up in the kitchen, Felix sat on the floor with the beads. He is so incredibly patient! I watched as he concentrated on putting the string through the hole in the bead. Did he give up when he couldn't do it the first, or the second time? No, he kept trying until he managed to thread one of the beads onto the string. When he did, he looked up at me with a big smile and clapped for himself. Felix  constantly reminds me, never to underestimate his ability. We will continue to challenge him. Sometimes he'll be able to do things straight away, and other times it will take him a long time but, what matters most, is that he tries his hardest and we celebrate every little success!

Back to Kindergym

Clapping for himself after he put his
shaker away

What a beautiful day! The weather was perfect, the kids woke up happy, including Felix who was smiling from the second he got up, and Nathan didn't have to be at work until the afternoon so we were able to spend a relaxing day together. It doesn't get much better than that!

Nathan and I took Felix to Kindergym this morning. It's the first time he has gone since the Summer holidays so, as with most things, we were unsure how he would react to being back there again. We finished the year, last year, with Felix starting to be a bit more settled about other children playing near him, but still very cautious. He had become a lot more agile with his climbing and was starting to really enjoy it.

Everything was hilarious today

Today was amazing! Felix had a smile on his face the entire time we were there. He participated in 'song time', shaking his shaker enthusiastically, and standing up when the other children stood up. He was just like all the other kids, laughing and having fun. He even went and put his shaker back in the box when the singing was finished, which he has never been brave enough to do before. It really was a joy to watch him today.

Felix was still slightly cautious, checking the tunnels to make sure there were no other children inside before he climbed through, but for the most part he was really confident. He was happy for the other children to touch him and brush past him. He didn't even worry when one of the babies started to cry, or when the little girls were squealing (which is great because he used to just melt into me when it was too noisy for him). He has come such a long way.

Enjoying 'song time' with Daddy

The big trampoline was a huge hit today. Felix had stood, watching a little boy bounce up and down on it, for a while. When he was finished, Felix looked at me and started 'jumping'; the top half of his body bounced up and down but his feet were still firmly on the floor (I think jumping will take a while to learn, but his way of doing it is pretty cute!) We figured he was telling us that he wanted to have a go, so Nathan picked him up and lifted him up onto the huge trampoline and got on there with him. What followed was hysterical laughter from Felix as he attempted to jump and bounce on the trampoline. I'm pretty sure he would have stayed on there the rest of the day if we'd let him although, I think his stomach would have started to hurt from laughing so much.

A Beautiful Face

Sigh....those eyes!

I haven't had this happen to me for quite a while, but a few days ago someone said those familiar words, "He doesn't look too Down's, does he?" I'm never quite sure how to respond when people say that about Felix. I'm assuming they think it's a compliment; expressing that he looks more 'normal' or 'acceptable' and not 'different'. What people don't realise is that to us, as parents of children with Down Syndrome, we are in love with those unique facial features of our children . We don't see our children's features as imperfect or strange, and don't consider our children to look any more, or any less, like they have Down Syndrome than any other child with Trisomy 21. It is what it is; they have Down Syndrome. Much as, I'm sure, people are trying to be kind when making a comment like that, it's actually quite hurtful. Imagine if someone came up and said, "Wow! Your child's ears don't look quite so huge today!" I can guarantee that, as a parent in love with their child, you think those ears are quite beautiful and certainly don't see them as a fault. Having someone infer that your child looks a little bit less 'ugly' or 'unattractive', is awful!

I can do cool stuff with my tongue!

That being said; for every one person who makes that (well meaning) comment, there are dozens who see Felix exactly as we do; an adorable little boy! I have lost count of the beautiful comments we have had from people about how cute Felix is, and how much he makes them smile. I think that making people smile is a gift  Felix will have his whole life. He is so full of character and already has so many hilarious quirks. I have no doubt he will bring happiness to everyone he meets.

Since having Felix, I have a new appreciation for the 'look' of those with Down Syndrome; the stunning almond shaped eyes, the tiny little button nose, and even the protruding tongue which seems so much more prominent while concentrating or tired. I see these features as something beautiful; in the same way I look at someone with a different ethnic heritage to myself, and marvel at the physical differences between them and me. It's made me more appreciative of the diversity of the world we live in and, I think, I'm much more aware of those around me.

Love that tiny nose

I can't get enough of looking into Felix's eyes. In the sunshine I can see the beautiful Brushfield Spots in them which sparkle like little stars. I love how his short, stumpy fingers comb the hair out of my eyes, and the way he kisses me with his tongue poking out just a little bit. I laugh at how much I have to roll up his pants at the bottom because his legs are so short, and the way his sunglasses slide off his nose because it's so tiny. But, for all his physical differences, I love how much he looks just like his siblings, with his facial expressions, his hair which grows in many different directions and how skinny he is. I love it when people say he looks just like his Daddy, or looks similar to me. He has so many similarities to all of us, and is much more like us than he is different. Next time you see someone who has Down Syndrome, try to look beyond the features which are different and see how similar they are to the rest of their family. I think you will be surprised!

First Girlfriend?

Sitting all by himself!

Felix and I had the best morning. It was the biggest group of kids, at the Special Needs Playgroup, I have ever seen there before. As I've mentioned, many times, Felix isn't a huge fan of a whole heap of noisy kids all in the one room, so I wondered how he would go today.

The little guy was a bit hesitant when we first arrived, but he warmed up really quickly. His teacher, Jackie, set up a pop up tent and a tunnel, which Felix loves, so he was pretty excited about that and started chatting and smiling. The parents, of the kids in the group, are all really friendly and they love Felix. They always make him feel welcome, by getting him to give them 'high fives' and bringing him the toys they know he likes to play with. When he's comfortable with the adults in the room, it makes it easier for him to adjust to all the little people who are there too.

He really likes 'mat time', and today he was very assertive in expressing how much he wanted it to start. He went and picked up a couple of photos, of other children from the group, and took them up to his teacher indicating he thought it was time to get started. She made the comment that it was the first time she'd ever been bossed around by Felix! It didn't take long for Jackie to round up all the kids and have them sitting on their chairs in a circle, ready for the welcome song; Felix's favourite part of the morning.

Incy Wincy Spider climbing up his arm

Usually, I sit Felix on my lap and, although he holds on fairly tight to me, he still enjoys participating from the safety of my knee. Today I really wanted to get a photo of Felix sitting on the chair by himself, next to the other children. I sat him on the seat and backed away, sitting in front of him. He leaned towards me, with his arms out, but Jackie distracted him by starting to sing the welcome song to the first child in the circle. To my absolute amazement, he relaxed back into the chair with a big smile. I was so excited, I started snapping away with my camera, only to realise I had left the memory card at home.... Oops! Thankfully, the sister of one of the other little boys in the group, came to my rescue and took a few photos of Felix for me.

Felix continued to sit beautifully the whole time. He got down from his chair and put his photo on the board and then happily sat back on the chair again. When the group sang 'Incy, Wincy Spider' Felix signed 'spider', running his fingers up his arm. I had a few tears in my eyes, seeing him sitting up on the chair, like an independent little boy, participating enthusiastically. It was the first time I had ever seen him so relaxed and attentive, without having a family member holding him. It's the small milestones that still continue to encourage me.

Listening carefully

There were so many special moments between the children this morning. Felix's little friend, Sophie, hasn't been able to come near Felix in about a year without him pulling away from her, or hiding his face. She sat next to him during mat time today, touching him on the arm occasionally, and Felix was totally fine with it, even reaching out to touch her at one point. It was fantastic! Another little boy from the group, who has Autism, often won't interact a lot with the other kids. This morning he went and sat down next to Felix, on the step outside, looked at Felix and said, "Hi". It was so cool to see him relating to Felix, and equally great to see Felix totally relaxed about another little boy sitting right next to him! To parents of 'typical' kids, this wouldn't seem like a big deal but I could tell, when I looked at the other little boy's Mum, that she was feeling the exact same way that I was; so proud.

When we left group this morning, Felix gave out cuddles, high fives and, best of all, he gave Sophie a kiss. He leaned in and gave her a sloppy one, right on her eye. She looked a bit disgusted and wiped it off, but then she puckered up and leaned forward to give him one on the cheek. He looked pleased, but still wiped it off; I mean, he wouldn't want to catch girl germs, would he?

So Proud!

Kisses for Atlas

We've just got back from a farewell. The boys came with us and had a great time hanging out with the other kids there, and playing on the jumpy castle. They were well and truly worn out by the time we got home.

I expected Felix to be grumpy and miserable tonight. He didn't have a day sleep again today and was getting quite irritable by the afternoon. Instead, he was just a delight! He smiled and waved at everybody. He gave out high fives, and showed off with his signing. He ate dinner beautifully; eating some of his own and sharing some of ours as well. He prompted conversation with a few people, about Down Syndrome, and I was really pleased to have some positive discussions with people about life with Felix. I was encouraged to be told some great stories about other people, with Down Syndrome, as well. One person even said to me that the world would be a better place if there were more people with Down Syndrome in it. That was pretty awesome to hear, and quite different from some conversations I've had. It definitely put a smile on my face!

Kisses for Chaos

Kisses for Envy

Recently, a friend of mine; a young woman, with a gorgeous little boy who has Down Syndrome, just announced her second pregnancy. I was horrified to find out that, instead of congratulations, several people had made comments to her such as, "When do you have your testing done to find out if everything is OK this time?" I was so disappointed to hear that people had made such insensitive comments. I really urge anyone, who knows someone in a similar situation, to offer your congratulations, just as you would to anyone else announcing such exciting news. To make comments, like the ones my friend has received, is like telling someone that the child they already have, who is much loved and much wanted, is less than ideal. If your pregnant friend wants to discuss testing, or the possibility of the child they are carrying having a similar condition, it is up to them to broach that subject with you. Be excited, be positive and be encouraging! I really hope my friend has a healthy pregnancy and a baby with no health issues but, I know for a fact, that if her second baby has Down Syndrome (or another disability), it will be one of the most loved and most wanted babies ever born. I am so proud of all she has done to raise awareness for Down Syndrome and Heart Kids. She may only be young, but she has done more for people living with disability or heart issues than most people will do in a lifetime!!

Tonight, as I said goodnight to our perfect little man, I was overwhelmed with love for him and felt an immense pride. He is beyond amazing to me. I love him more than I could ever say.

Food and Kids with Down Syndrome

Bath Baby

When Felix woke up this morning, he had a revolting nappy which is not entirely unusual for him. Since he's been toilet training, he tends to hang on until he's got a nappy on before he goes. This morning, however, he was crying and flinching when I picked him up. When I took his nappy off, I noticed his little bottom was bright red and looked so sore. Poor little man; that has never happened before. At first, I wasn't sure what would be causing such a horrible rash, but then I remembered that, over the past couple of days, we have given Felix milk to drink, instead of diluted juice. We stayed away from cow's milk for a long time, and only used soy or lactose free milk, because he used to vomit a tiny bit each time he had cow's milk on his cereal. In the past few months, we have tried him on cow's milk in his porridge again and he has been fine with it, so I thought I'd try him on some milk drinks. After seeing his reaction today, I think we'll be putting him back on soy milk for a while!!

I was SO happy tonight because Felix actually ate all of his dinner. He has been so fussy lately. I know that's pretty typical for a two year old, but it's also frustrating for us, as parents, trying to get him to eat something nutritious. He seems to think he can survive on peanut butter covered rice cakes and bananas! For the past few weeks, Felix has refused to be spoon fed by us. He clamps his mouth shut and shakes his head from side to side, 'No'. I wouldn't mind, if he was happy to spoon feed himself (which he can do quite well). Instead, he has just played with his food; happily finger painting the tray of his high chair with it, and occasionally licking his fingers. I'm pretty sure that, unless he is absorbing food through his skin, he's not getting too much of it into his mouth. Tonight, we had a BBQ and Felix ate most of a sausage with sauce, some onion relish, potatoes, raw tomato and cucumber. I couldn't believe my eyes!

Smoothie through a straw

Feeding children with Down Syndrome can be quite problematic due to some anatomical differences, poor muscle tone (affecting swallowing and chewing) and general developmental delays. A lot of children with Down Syndrome may choke or gag as they eat, sometimes aspirating on their food. Some of my friend's children, who are the same age as Felix (or older), are fed through a peg (a tube which goes through the abdomen and into the stomach) and are completely (or partially) nil by mouth. Others are still only eating pureed food or soft lumps. Some are eating everything that other children their age are eating.

Felix doesn't have too many issues with food but does tend to choke a lot more easily than our other children did. We still don't give him any hard fruits or vegetables, like apples or carrots, unless they are grated, and he doesn't manage to eat meat unless it is minced up, or in tiny pieces and, even then, only one piece at a time. We have always had a hard time finding a cup which is suitable for Felix to drink from and, when he first weaned himself from the breast (at 18 months), he refused any liquid at all. The cups we eventually found were great, when he had less teeth, but once he had more, he chewed the spout shut so he couldn't get any of the drink out of it. Now, he prefers to drink from a straw, but still gags quite regularly because he hasn't worked out how to swallow the liquid and breathe at the same time. I still find drinks, such as smoothies, are much easier for Felix to handle than any thin liquids, like water or juice.

Play time in the bath

I gave Felix a bath after dinner tonight. He was wearing quite a bit of his tomato sauce from dinner, and I'm sure he had half of the sand pit through his hair. His bottom was still looking very sore as well, so I figured a soak in the tub might soothe it a little bit. When I lifted him out of the bath, he looked at himself in the mirror, like he usually does, but tonight his reaction was a little bit different. He actually recognised that it was himself in the mirror, and not just another baby. He blew kisses to his reflection, but then he blew kisses, using my mouth, while he studied the mirror. I could see his little mind ticking over as he did different motions with his hands, sometimes looking at his real hand and sometimes looking at the one in his reflection. I love it when he learns new things. I have a feeling he'll be spending a lot more time in front of the mirror over the next few days. It will be just like old times....

Family and Doctors

Taking his hospital appointments in his stride

We've just got back from another trip to the city for Felix's hospital appointments. He actually slept two out of the four hours each way this time. I think he must have been catching up on some sleep since he hasn't been having naps during the day at home any more. He usually stays awake for the whole trip, so it was pretty cute to see him sound asleep, with his little mouth hanging open and his legs crossed, tucked up on his seat. He looked so peaceful, and remarkably flexible!

Breakfast with Bekah

Felix had two post-surgery appointments; one with the Ear, Nose and Throat Specialist, and the other with the Opthalmologist. We had some mixed results. The Opthalmologist was really happy with Felix's eyes. The probe of his tear duct seems to have been successful. One of his eyes still gets a tiny bit watery, particularly in the wind, but it hasn't been sticky or runny since a couple of days after the surgery, which is great. The study of his optic nerve showed that the back of his eyes look exactly as they should and his vision is fine. We were expecting him to need glasses, like the rest of his siblings and Nathan, but it appears he has perfect vision like me! What are the chances of that? At least we have one less pair of glasses to buy for the time being. 

The appointment with the Ear, Nose and Throat Doctor was a little bit frustrating. The Doctor seemed very nervous and her hands were shaking as she tried to look in Felix's ears. She appeared a little bit annoyed when she told us she was unable to get a good view of either of his eardrums. She mentioned that his 'good ear' (not the one the Surgeon had trouble with; and the one our GP thinks the grommet has fallen out of), was a bit "mucky" (her word). She wrote us a prescription for ear drops and said to use them, not straight away, but 'when' he got another infection. She also made an appointment for him to come back in another 2 months and said, "We'll see how many infections he gets between now and then". Nathan and I are a little bit frustrated that we didn't question her more about it. We probably should have asked to see another Doctor for a second opinion, and see if they could see his eardrums. After all, we had just travelled 4 hours for the appointment and her advice was unclear. 

Hanging out with Cate

We are still learning to be assertive when it comes to Felix's medical treatment. I guess we are quite new to having to deal with so many different therapists and specialists. We know that we need to be Felix's voice and his biggest advocates but, sometimes the labels 'Doctor', 'Surgeon' and 'Specialist' can still be intimidating. It's easy to assume that, just because they have the title, they know more about our child than we do. In future, we will try to be 'politely' assertive if we have questions regarding Felix's health. 

Although we only had a quick, overnight trip to the city, we were able to catch up with some of our family, which was really special. Daniel (our eldest), and his fiancee, Cate, drove into the city last night to have coffee with us at our hotel. We're so thankful that they were able to come and see us, and it was nice to have a quick catch-up with them. This morning, our daughter, Bekah, our son, Joel, our gorgeous Grandson, Noah, and his beautiful Mum, Mel, caught a tram into the city and met us for breakfast. It was so good to see them and to give our little man a big snuggle. Felix was so excited to see them all and loved it when they came and sat in the waiting room at the hospital with us as well. He was kept very well entertained, surrounded by so many people who love him. 

Stories with his nephew, Noah, in the waiting room

The day got even better when, between appointments, we were able to go and meet our brand new baby niece in the Neonatal Unit. She was born 8 weeks early and is a tiny bundle of perfection. It was great to see Nathan's sister and share in her excitement. There is something so beautiful about the face of a Mum who has just brought another precious life into the world.

My, much missed, friend, Deb, also drove into the city to have a quick lunch with us before Felix's second appointment. Felix threw himself into her arms and had a beaming smile on his face. She even shared her coffee froth with him, just like old times. Daniel's fiancee, Cate, happened to be working at the hospital today, so she was able to join us for lunch too, which was great. Felix has taken quite a shine to Cate and she went home with some sticky toddler fingerprints on her sunglasses, and some of Felix's pizza slobber on the top of her water bottle. She's definitely one of the family; there's no turning back now!

Too Tired

Green Bay for next year's Superbowl

Today was Felix's first day back at his Special Needs Playgroup. It was also Superbowl, so it was always going to be a busy day for us. Superbowl is a bit of a tradition for Nathan and I. We always make a day of it; cooking some yummy snacks and just hanging out for the day. Being Felix's first Playgroup, after a two month break, it was really important to take him to that as well. Thank goodness for a 'record' button on our cable TV!

I got Felix dressed into his NFL jersey (Even though our team wasn't in the Superbowl, we still wanted to get into the spirit of it). I told him we were going to Playgroup to see some of his friends. He looked at me blankly because he hasn't been there for such a long time, and can probably barely remember it. When I said we were going for a drive in the car, he was pretty happy about that and was keen to toddle out the front door and into the car. I'm so glad he loves the car because of all the long drives we have to do.

Playgroup fun

It took Felix a little while to warm up at Playgroup. He's still usually a little bit thrown when there is a room full of other children, playing and squealing. One little girl, in particular, has quite a shrill scream which makes Felix tense up and hold his ears. I'm thankful, however, that it didn't make Felix throw himself into my arms, like it used to. After a while, he settled a bit and was happy to start playing with some of the toys there. He particularly likes the metal frame with wooden beads on it. He pushes the beads up and down and round the bends. He was smiling and laughing, and thoroughly enjoying himself. During song time, Felix got really involved and must have remembered what to do, because he proudly took the photo of himself and put it on the board when it was his turn. Every little glimmer of confidence makes me so happy, so I couldn't contain my smile today.

I had to cut Playgroup short this morning to get home and watch the Superbowl with Nathan. Felix quite enjoys watching the football too, so he was happy to sit with us. He loved our array of snacks, and had his own lunch box of goodies to enjoy. We tried to put him down for a day time sleep at 12pm but, once again he was still playing after an hour, so we got him up and had a fun afternoon playing with him instead. I still can't believe how suddenly he has given up his day sleeps!

After pulling out all his toys and nappies, this is where
we found him.... sound asleep!

At dinner time tonight, Felix was exhausted. He wasn't interested in one of his favourite meals; a roast dinner with lots of gravy. He picked most of it up off his plate and moved it onto the tray of his high chair, refusing to eat any of it. He didn't have a tantrum, but he was just a bit miserable because he was so tired. I finally got him to eat a rice cake with some peanut butter on it, but he was falling asleep eating it. I'm not quite sure how he finished it in between nodding off. We put him to bed as soon as he was done and, believe it or not, he STILL didn't go to sleep. He played in his room for another hour and a half (until 8.30pm) before there was silence. A few minutes ago, I crept in there to tuck him in. It was the first time I've ever found him asleep somewhere other than his bed. He was sound asleep, on his belly, in the middle of the floor. Poor kid was too tired to climb back into bed. Hopefully the later nights might mean he'll sleep in longer than 5.30am.... I can hope!!

Mr. Muscles

Glad to be outside

In an attempt to tire Felix out, so he would have a day sleep today, I took him down to our local gardens for a long walk this morning. He loved being out in the sunshine. He was excited to see people walking their dogs, signing 'dog' every time one walked past. Being his usual charming self, Felix came across a couple of female joggers on the path, and got them to stop and talk to him. They stood and smiled at Felix and told me how adorable he was. It made me puff out my chest a little bit; I'm always so proud to show off our little man.

Hiding

We stopped at the playground, but Felix wasn't too sure about that. There were a lot of kids running around, squealing and talking to each other. I think the noise level was a little bit too much for him. It took him a while  for him to feel comfortable enough to explore but, eventually, he did. He particularly loves slides, so I lifted him up and helped him slide down until my arms were worn out. I wish I could have got a photo of his beaming smile, but my hands were otherwise occupied. He's going to love it when he has enough dexterity to  go down the slide by himself all the time. I can see a lot of time playing on the playground in the future.

Slide fun

My best laid plans weren't terribly successful. I kept Felix up until 12pm, thinking he would be well and truly worn out and would fall straight to sleep when I put him to bed. He looked so sleepy; his eyes were red and puffy, and he was yawning and rubbing his eyes. I was pretty excited, thinking that I might get a couple of hours to get some things done today, without my little helper. It wasn't to be. After an hour, I could still hear Felix playing with his toys and having a great time. Little monkey! I opened his door and he wandered out, totally bright eyed and happy, ready for his afternoon adventures.

So strong!

This afternoon, while Nathan and I were doing weights in our shed, Felix came out there with us. It was a good Physio session for him, climbing over the weights and the barbells. His style is very unique; opting to go backwards over the bar, feet first. He is learning to problem solve really well and concentrates hard on navigating himself through obstacles. He even managed to keep his balance when the dogs rushed past him and almost pushed him over. At one point, Felix climbed into the middle of the trap bar and leaned forward, picking up the bar with his hands. He pulled so hard (the little veins on his neck were popping out), until he managed to make the bar move upwards (it could roll because of the weights on each side). He looked up at us with a look of amazement on his face. It was so cute. Anyone would think he had lifted the whole thing by himself. Nathan's pretty excited at his interest in weight lifting. If Felix ever makes it to the Special Olympics, I think that might be his thing!