So Brave

Looking through Isaiah's legs

I finally got around to taking Felix for his blood test this morning. I got myself organised and then got Felix dressed and was pretty much ready to leave, when Nathan told me he had better go and get dressed too. I admire the fact that he was willing to come with us, but I told him he wasn't allowed to come (Hahaha! Poor hubby!) Nathan hates injections, and I knew it would be too much for him to see Felix have blood taken. Felix gave Daddy a big hug and, although he wouldn't admit it, I saw the relief on Nathan's face!

Silly me! I thought that if we went to the hospital early in the morning, we would get in and out quickly. I was wrong! There was a room full of people all waiting for blood tests. Felix set about entertaining the people in the waiting room while we passed the time. He crawled up to one lady and looked up at her until he got her attention and she started talking to him. He turned to another lady and gave her a big smile. There was another little boy there who was a year old. Felix very bravely went up to his pram to say hello, but bolted back towards me when the little boy started crying. He has always hated it when babies cry, so he snuggled into my shoulder until he stopped crying.

Cutie pie

Eventually Felix's name was called and we were able to go into the room to have his blood taken. Another nurse came in to help hold his arm still, and I had my arms wrapped around him to keep the rest of him from wriggling. The nurse commented that he had good veins so his blood would be easy to draw. When she put the needle in, Felix looked at the nurse and then back at his arm. I started talking to him and he looked up at me and smiled and 'talked'. After a while I looked down to see that there was no blood in the syringe yet, and the nurse was moving the needle around under his skin trying to find the vein. Felix hadn't even flinched!

Finally, after what seemed like forever, the syringe filled up and the nurse was able to remove the needle. I told Felix it was all finished, and he signed 'finished'. While the nurse was disposing of the needle and finding a bandaid for his arm, Felix looked up at me and signed 'finished' again. I think he just wanted to make sure that there was nothing else painful about to happen to him. When we were about to leave, I said to Felix, "Say thank you" (and I signed 'thank you'). I was really impressed that the nurse asked how to sign 'thank you', and she signed it to Felix. I always appreciate when people make an effort to do little things like that, above and beyond what they need to do. She was so lovely to Felix and gave him so much encouragement. It's things like that which make your day, especially when dealing with so many different health professionals all the time.

Hello Granny!

We should get Felix's blood test results early next week. I'm not expecting anything to be out of the ordinary so hopefully we won't get any nasty surprises. However, as all my friends with little ones with Down Syndrome will know, it's much easier to sleep after all the results come back clear. I have a busy weekend coming up so that should keep me nice and distracted for the time being. Looking forward to letting you all know some good results next week!

Changes

Look out... Mum's in a cleaning frenzy!

Phew! What a day! I didn't get a chance to take Felix for his blood test today because there was so much going on at our house. Hopefully tomorrow won't be quite so frantic, and Nathan will be home so he can help me hold Felix down (if he doesn't pass out!)

Our eldest son, Daniel, offered for Mel, Joel and little Noah to move in with him until they find somewhere else to live. They will have much more space there and Noah will have his own room. It's been very squashy for them all in one little room especially as Noah is wanting to roll around and explore a bit now. Today has been non-stop packing, moving and cleaning as they have moved out, and Isaiah and Aaron have moved back into the house. They very graciously gave up their bedroom for Mel and Joel when Mel was pregnant, and moved out into our shed which is freezing in winter and really hot in summer. They were both very happy to be back inside and out of the cold tonight!

I might be safer up here!

Felix has loved all of the moving and packing. He has been playing in boxes and making lots of discoveries as things have been moved around. Amongst all the other chaos, I have been cleaning out our shed over the past few days, as well, and have been sorting through old toys. Felix has enjoyed pulling things out of boxes and playing with all of the 'new' things (which have been reboxed up to take to the goodwill store). I can't believe how much stuff the kids had stored out there, and Felix certainly doesn't need any more toys.

We are waiting to buy new beds for Isaiah and Aaron, so we have put their mattresses on the floor for now. Felix had the best time tonight belly flopping down onto one of them, then standing up and walking across to the other one and throwing himself down on that one too. He laughed and laughed and had a great time. He kept saying "baba" (brother) and seemed genuinely happy to have the boys in the bedroom across the hall from him. In fact, I think the older boys enjoyed having him come and visit their room as much as he did. I never get sick of hearing them all laughing hysterically with each other. It's a beautiful sound.

Going to miss seeing this gorgeous
face every day. Granny loves you Noah!

Things are certainly changing in our family at the moment, and change isn't always easy. Our eldest daughter, Amy, is moving out of the state and will be living almost on the other side of the country soon. We already don't see her as often as we would like to because she lives 4 hours away, but it will be even harder when she leaves.  Joel, Mel and Noah have moved out and that will take some adjusting to as well. We will miss hearing his little chuckles coming from their room in the morning, and even hearing his cries during the night. Joshua (16) will be going away for school next year. We will miss him terribly too. I can't believe that after all these years, we will only have 3 children left at home. Our house will feel very empty.

BUT, the future is bright! We knew the kids would all have to go their separate ways eventually and, although I'd love to keep them all tucked away under my wings forever, I am so proud of them for reaching out to do the things they want to do with their lives. I'm looking forward to seeing what the future will bring for all of them. I'm so thankful that, whatever the distance, we are so close as a family. When we all get together it's as though we've never been apart. The great thing about having Felix when the other kids were older, is that they don't like to leave it too long between visits because they love their baby brother to bits, and miss him when they're not here. Felix is going to have lots of places to go for sleepovers when he's older, and I have a feeling he's going to be spoilt for many years to come!

MRI Results

Just too cute

Felix finally had his appointment with the Paediatrician today. A couple of months ago I got a call from his Office to say that he needed to get together with us to discuss Felix's MRI scan. I was a little bit worried because we had already talked to him about Felix's MRI (and the fluid on his brain), so I wasn't sure why he needed to see us again. We had already agreed to a follow up MRI scan in 12 months time to check that the fluid hadn't increased in his ventricles, and we were all pretty confident that the levels would stay the same. I rang to make an appointment, but couldn't get in until today so it's been a long wait.

I was relieved to find out that the only reason why the Paediatrician wanted to see us, was because he had received a copy of the MRI pictures and wanted to show us exactly what was going on inside Felix's brain. We had seen so many pictures of the ventricles in Felix's brain when I was pregnant with him because they were measured on the ultrasound every 2 weeks, from 25 weeks onwards. The MRI pictures were even clearer, and were quite amazing to see. The Paediatrician pointed out the enlarged ventricles and also mentioned that there appeared to be other 'spaces' in his brain which appeared to be larger than they should be. These, he said, indicated that Felix's brain possibly didn't develop fully (nothing to do with Down Syndrome). We both agreed that it doesn't seem to have affected Felix's ability to learn and develop. It will be interesting to observe him over the coming years and see if it makes any difference then. Until then, we will stick with our original plan to do a follow up MRI early next year, and if the results are stable, we'll be able to wait another 5 years before repeating the scan again.

Put the camera away Mum

While I was with the Paediatrician I remembered to get a referral for the Opthamologist next month. Felix will have his eyes looked at through some more sophisticated machines, to make sure he doesn't need glasses yet. I also picked up a request for his next lot of blood tests (which he hasn't had for 12 months). Kids with Down Syndrome are regularly checked for any thyroid problems, which are common in people with Down Syndrome. Sometimes medication is required, from a very young age, to keep thyroid function under control. The benefit of being tested regularly means that any issues with the thyroid can be quickly addressed before they become too much of a problem.

The other part of the blood test is to check for leukaemia. Unfortunately children with Down Syndrome, under the age of 5 years old, have a slightly elevated chance of developing leukaemia than other children. Medical opinions vary as to how often they should have their bloods checked for leukaemia. Some Doctors may recommend it every few months and others, like our Paediatrician, only check it once a year. The wait for the result of this particular test is always nerve racking, even if your child appears to be healthy. The thought that they have been tested for something so horrible is a daunting one. I couldn't bring myself to take Felix to have his bloods done today, so I'll have to steel myself and take him tomorrow.

Doing some walking and showing off
his perfectly straight crease on his
left hand ( a unique trait of Down Syndrome

Several times today I looked over to see Felix toddling across the floor, taking more and more steps on his own, which makes me so proud. The Paediatrician was very impressed that he is walking and also with the amount of signing he can do. He has no concerns at all with Felix's development as far as gross and fine motor skills. Felix has put on some weight, although he is still very tiny (almost at the bottom of the Down Syndrome weight chart, with his length at the very bottom). I think he's only going to be a little shorty when he's grown up but, as we all know, good things come in small packages!

Engagement Fun

Sculling the (non-alcoholic) wine for the toast

Yesterday we drove to the city to help celebrate our eldest son, Daniel's, engagement to the lovely, Cate. We are so proud to have Cate as part of our family. It's a great feeling to see Daniel so happy and so in love, and to see the way that he and Cate compliment each other. Their engagement party was a great time to catch up with friends and family we haven't seen in ages, and to meet the rest of Cate's family too.

Us with 7 of our kids, their partners and our Grandson
(Amy and her boyfriend are missing from this one)

Felix, as usual, was fantastic on the 4 hour drive. At home he is not at all interested in watching TV, but in the car he loves to watch his Play School dinosaur DVD or the Wiggles. I have to remind myself to keep my eyes on the road when I'm driving because I love to look back at him, in the rear vision mirror, and watch his face as he listens to his favourite songs. One of his favourites is a dinosaur song which talks about a dinosaur shaking it's head. He watches it and shakes his head frantically from side to side and then walks his hands up his chest when they say "Stomp, stomp, stomp".

It was an early start for us because Felix woke up at 4.30am that morning. He only had a 40 minute nap during the drive and then had a lot of excitement at the party. He was a little bit overwhelmed by all the new faces and all the people who were coming up to talk to him so he didn't want to be held by anyone except for Nathan, Isaiah, Aaron or me. He shook his head whenever anyone else tried to pick him up and hid his face. By the end of the day he still wasn't giving out cuddles, but he wanted to point to everybody's noses (he's just realised that everyone has one), and he happily gave out some kisses. When he gives someone a kiss, he also has to kiss the person next to them and the person holding him as well.

Walking practice at the party

Regardless of the fact that Felix didn't want to be picked up by many people, he certainly got lots of attention. People I had never met before came up and said, "This must be Felix". He was all smiles and loved the attention. He even did his 'crazy face' for a few people. He had lots of "Oooooh's" and "Ahhhhh's" when he saw the engagement cake (which looked like it was made of Lego, with Lego Cate and Daniel on the top). Cate's Mum got a great photo of his "Ooooooh" face!

4 Generations
Our son Joel, his son Noah, my Grandma, me & my Dad

It was beautiful to be there to see my Grandma meet my little Grandson Noah for the first time (her Great-Great Grandson). She couldn't wipe the smile off her face. My Dad hadn't met him before either, so he enjoyed meeting his Great- Grandson for the first time too. We were able to take a photo of the five generations; Grandma, my Dad, me, Joel and Noah all together. As you can probably tell, I love making memories through photographs and this will be one that I will treasure.

Joy in Sadness

Today has been a sad one remembering our precious daughter, Eden Grace, on what would have been her 8th birthday. However, the closeness I felt to Nathan and our other kids today was beautiful. All of our older kids (who no longer live at home), sent me really touching messages as did other family members and friends. I am so thankful that I am surrounded by people who keep Eden's memory alive. It really is a blessing!

Our crazy, funny little boy!

This is only a quick blog today because I'm struggling to concentrate, but I just wanted to share this picture of Felix which made me smile today. Our friend, Jim, added this saying to a photo of Felix and sent it to us this morning. It was great timing because it certainly gave me a giggle. I just want to point out that the majority of people we have met since having Felix have been incredibly supportive. The people who have responded negatively to Felix are in the minority and I put a lot of their reaction down to ignorance. Hopefully this picture of Felix might make people think, and realise that those with Down Syndrome are not scary; in fact, they can be a lot of fun!

Tough day!

Do your crazy face, Felix!

I've always been impressed by Felix's level of comprehension, and I'm proud to say it's just getting better and better. He is almost 23 months old and he is following basic instructions so well. If we ask him to stand up, when he is sitting on the floor, he will stand up. If we ask him to walk to us, he will. The funniest thing is when we ask him to do his 'crazy face' or 'big eyes'. He will open his eyes wide, stick out his bottom teeth and push his jaw forward. It is the most hilarious face and has us all in hysterical laughter. The fact that he does it on cue is fantastic! He gives kisses whenever we ask for them, which I love, and if we ask him to sign a particular animal or vehicle he will do it. He surprises us every day with something new.

Watching the trees blow in the wind

Today there was a severe storm warning for our area. There was a huge amount of wind, and we were expecting hail. Felix loved it! He sat by the window for ages, looking outside at the trees getting blown around. Every now and then the wind would die down and we could hear birds chirping very faintly. Felix would make his eyes huge and tilt his head as he listened, then he would sign 'bird'. When he signs 'bird' it's the sweetest thing because his fingers are so tiny; it looks so cute. I took Felix outside to have a closer look at the trees and to feel the wind in his face, which he has always enjoyed. He busily pointed here and there, showing me that the trees were moving in the wind. He wasn't too happy when I brought him back inside because we had to walk past his sandpit and he thought it would be a good idea to play in it. Being an extremely windy afternoon I thought we'd better give it a miss.

I've been having a tough day today. Eight years ago, exactly, I was in the labour ward in the beginning stages of an induction. I had an ultrasound earlier in the day (at 19 1/2 weeks pregnant) and found out that the tiny baby girl I was carrying had passed away. The years have passed, but the pain of that day remains. Some days it's harder than others and today has definitely been one of those days! Nathan and I were talking tonight and we both agree, that because of Eden's death, it has definitely made Felix's life all the more precious.

Losing Eden made accepting Felix's diagnosis of Down Syndrome so easy, because he was alive and incredibly beautiful! I was in love! To hear him cry when he was born was the most incredible sound I had ever heard! I've never been able to thank our tiny little bird, Eden Grace, for the lessons she has taught me or tell her how much I miss her, but I hope she knows. This one's for you baby girl x x x

Tongue Protrusion in People with Down Syndrome

Tongue protrusion in people with Down Syndrome

Since Felix has been born I've had quite a few people ask me why Felix, and others with Down Syndrome, often have their tongue sticking out. There are several reasons for protrusion of  the tongue in people with Down Syndrome. I'll try and explain these as best as I can.

- Babies with Down Syndrome usually have a much weaker suckling motion than other babies, often making breastfeeding very difficult. The weaker suckling, combined with a higher than average palate, means that babies with Down Syndrome will usually hold their tongue in a forward position in order to effectively feed. 

- People with Down Syndrome generally have smaller mouths and higher palates, making their tongue disproportionately big in relation to their mouth. It used to be thought that their tongues were bigger than usual, but it's actually their mouths and jaw which are smaller. 

- Very often, those with Down Syndrome have narrower airways, sometimes causing respiratory problems. As a result of this, people with Down Syndrome may have trouble breathing through their nose so will breathe through their mouth instead, thus protruding their tongue.

- The most common reason for protrusion of the tongue in people with Down Syndrome is poor muscle tone (hypotonia). Various muscles of the body can be affected by hypotonia, including the bowel (causing constipation), lungs (difficulty breathing) and limbs (affects the ability to stand, sit etc). The tongue, of course, is another muscle and can be difficult to control if the person lacks strength in that muscle. Felix will hold his tongue inside his mouth most of the time, but if he is concentrating hard or is tired it will protrude from his mouth a bit.

I explain it as being like when you or I go to the dentist and have an anaesthetic in our mouth. For a few hours afterwards, our mouth will hang open and our tongue will protrude a bit and feel huge inside of our mouth. It feels like we lack control of it's motion. If we try to talk, we sound a bit funny and may even drool a bit. This is similar to the lack of muscle strength people with Down Syndrome experience. People often say that those with Down Syndrome 'talk funny'. Try speaking out loud next time you've been to the dentist and really think about it. It's not that you don't have the ability to talk, but when you lack the strength in your tongue it affects the sound of your speech.

There are conflicting views amongst parents of children with Down Syndrome about what to do about tongue protrusion. Opinions vary from ignoring it, to pushing their tongue back inside their mouth every time it sticks out. I believe people need to do what they feel is the right thing for them and their child, causing the least distress as possible. Personally, we're not worried about it at the moment. Felix was breastfed for 18 months (which meant he had to build up some strength in his tongue, because it's harder to suck than a bottle). We have also tried to use cups which encourage him to hold his tongue in a more natural position. He does protrude his tongue sometimes, but I think we'll wait until he's older and then maybe remind him to put it back inside his mouth if he's doing it excessively. 

Little bits of news

Firstly, I'd like to say a huge thank you to those who have taken the time to read my blog. Since I began writing my thoughts about life with Felix, at the very end of February, I have had well over 11,000 people visit my blog. I really hope it has been encouraging for those of you walking the same path as I am, or for those of you about to embark on your journey with a child with Down Syndrome. For the people who are reading to become informed about Down Syndrome, I applaud you. You are those who, along with us who have someone in our life with Down Syndrome, are making a difference in the world and creating a more accepting and inclusive future.

Some fantastic text was added to a photo of Felix, by a friend of ours, to create awareness of the 'abilities' of people with 'disabilities'. This photo was then put on Facebook and within a day, has gone viral. I hope the photo touches many people and makes them think about how much people with disabilities have to offer the world. It's great to see Felix's little face pop up on my news feed over and over again! Thanks to Jim for the great job he did :)

Feeding the Birds

Felix the Fireman

The days I like sharing the most with Felix are the ones when we just enjoy the simple things. I love watching him experience new things, like the first time he felt the rain, and the first time he played in the sand. It's in those moments, with no other distractions, that I can truly see the wonder in his eyes as he discovers the beauty in things around us.

Today I had to take Isaiah for a haircut. The hairdresser he goes to doesn't take bookings so he has to sit and wait his turn. Felix had just woken from his afternoon sleep and hadn't had lunch yet, so I decided to stay in the car with him and give him something to eat while Isaiah went in for his haircut. When we got there, I unstrapped Felix from his car seat and sat him on the front passenger seat next to me to have lunch. He thought that was pretty cool and happily sat there munching away.

When he finished his lunch, I swapped places with Felix and let him sit on the driver's seat to 'drive' the car. He stood on the seat and held the steering wheel, turning it back and forth, stopping every now and again to sign 'car'. I had the windows wound down because it was quite warm, so Felix could hear other cars, buses and motorbikes drive past. Every time he saw one, he would lean out of the window to watch it drive past. He's become such a little boy with his love for different vehicles.

Sitting in his toybox

One time, as he leaned out of the window, he dropped a piece of the biscuit he had been eating. From out of nowhere, a seagull flew down and picked it up. Felix jumped with fright, but it was only for a second. Next thing he had his head hanging out of the window again, and watched in amazement as more seagulls started to land on the ground wait for more food. The expression on his face was pure joy; I just wanted to keep looking at him. I opened up a packet of rice biscuits I had in the car, crumbled one up, and dropped it onto the ground near the car. Suddenly dozens of seagulls started circling, some of them landing on the ground and making lots of noise. Felix couldn't get enough of them. I started handing him pieces of biscuit to throw to the birds, which he did with gusto! He would sign 'bird' and then 'more' as he looked at me, waiting for more biscuit. I couldn't believe how long the seagulls kept Felix's attention. We went through an entire packet of biscuits!

Hello Isaiah!

Our daughter, Amy (21), was messaging me last night about a post she read on Facebook about an employee of McDonalds who happened to have Down Syndrome. She was really irritated about the stereotypical comments which were made beneath it. One being that people, like this man, don't usually work because they have Down Syndrome. The other thing which annoyed her were the comments talking about how happy people with Down Syndrome were ALL the time, and how they were always smiling. She added her own comments, explaining (accurately) that MANY people with Down Syndrome are employed within the 'regular' community. It is actually more common, than not, these days for people with Down Syndrome to work and contribute to the wider community. She also wrote (correctly), that people with Down Syndrome were not happy ALL the time. They, like us, have good days and bad days. They can throw tantrums just like the rest of us, and be equally as grumpy! They are, after all, people just like you and me.

To say I'm proud of our older kids for being advocates for people with Down Syndrome, and educators to those who don't know much about Down Syndrome, would be an understatement. I love how they regularly speak up and correct misguided views, and how they genuinely want to educate others. It makes me so proud! Felix obviously didn't read the book about 'stereotypical' behaviour for a person with Down Syndrome. After we got home from our fun with the birds today, he was a grump! He was not happy and let us all know about it. He would ask for something and then shake his head and throw it away. After a nice hot bath and a belly full of dinner, he fell straight to sleep tonight. Feeding the birds must have been exhausting work!

The Show

Giving the lamb a bottle

I decided to take the three youngest boys to our local show (fair) this weekend. It only happens once a year and the boys didn't get a chance to go last time, so I thought it would be nice to spend the day there today. Nathan had to work so he wasn't able to come, which was a pity, but it was fun hanging out with the boys and introducing Felix to some things he had never seen before. We got organised early in the morning and got to the show as the gates were opening, so we were able to wander around a lot before it got too crowded. It was quite relaxing. 

"Get me away from that goat!"

Felix had big, wide eyes as soon as we arrived. He looked pretty apprehensive as he looked around and absorbed the sights and sounds. The first things he saw were the carnival rides and the sideshows. There was a lot of colour and a lot of noise. He seemed to be a little overwhelmed by everything and sat very quietly in his pram and rested his head on the side of it. It probably didn't help that it was close to his nap time. After a while Isaiah offered to carry Felix for a while because he thought he might feel a bit happier being held (such a caring big brother).

We headed straight for the shed we knew would have the farm animals in it. We all thought Felix would like to look at them. He loves animals in his books at home, and has posters of animals on his walls. Our house is full of (big) dogs and cats, so we were pretty confident he'd love it. Well...we were wrong! From the first animal to the last, Felix shook his head from side to side, "No!" If Isaiah tried to take him close to the animals, he would try and climb his shoulder to go the other way or reach out to me. If I was holding him, he would reach out to one of the boys to try and escape. The only things he didn't mind getting a bit closer to were the ducks.

The show was exhausting

After a while one of the men, who was looking after the animals, offered for Felix to bottle feed a lamb. He led us in behind a little fence, and Felix and I sat on a hay bale and waited for him to bring the lamb in to us. It was so cute and tiny, and very hungry. I was sure that Felix would be happy to pat this little lamb. Wrong again! He looked horrified when it came close to him and kept trying to climb off my lap. It was like having a toddler and a newborn all over again. I had to concentrate on keeping the toddler still without removing the bottle from the newborn's mouth. It must have looked hilarious! Felix settled after a few minutes and sat looking at the lamb, willing it to hurry up and finish it's milk to he could get out of there. Isaiah did manage to take a couple of good photos that almost look like Felix was enjoying it (don't be deceived!)

Shortly after we looked at the animals, Felix fell asleep for about forty minutes. Isaiah and Aaron had a chance to go on a ride and buy a couple of show bags. I can't believe Felix slept through the pounding music coming from the carnival rides. Yet there he was, mouth hanging open and head on the side, dozing away. When he opened his eyes, he was a completely different Felix. He woke up with a new lease on life and was really happy. There were a lot of "Oooooh's" and lots of pointing as he took in everything around him. He was loving it, and it made being at the show much more fun to know that he was enjoying it too.

Looking at the big Clydesdale horse

While we were on the grass having lunch, we noticed a helicopter taking off and landing nearby. Felix is really fascinated by helicopters at the moment. He has one on his 'I Hear Ewe' app on his ipad, and he loves to press it and hear the sound a helicopter makes. It's one of his favourite things to sign right now too. When we were finished eating, we decided to take Felix right up close to the helicopter and watch it as it took people on short flights. To be honest, I thought it would really scare him because it makes a ton of noise when it takes off, but he couldn't take his eyes off it. Even though there was dust blowing in his face and the sound was almost deafening, he really loved it. It hovered right above our heads before it landed again and Felix thought that was great. I think he would have stayed watching it for ages.

I loved everything about today. The fact that Isaiah and Aaron were happy with their one ride and couple of showbags (which was our agreement before we went). Not once did they ask me to buy them anything else. They happily tagged along with their Mum and baby brother and genuinely enjoyed showing Felix different things. They each took turns carrying him and never complained. I just love them all to bits :)

Kisses, Cuddles and Tantrums

Too cute

I am pleased to say the kisses have returned; permanently this time. No longer are there weeks between kisses, but they are all day, every day and shared with anyone who would like one! Felix is so generous with his kisses now, that if he gives me a kiss and Daddy is home, he has to kiss Daddy as well. If one of his brothers is in the room, he has to kiss all three of us. His kisses are delicious; open mouthed, slobbery and absolutely irresistible! He even gave his buddy, Jacob's, Mum a kiss yesterday. She has the honour of being the first 'non-family member' to be on the receiving end of one of his smooches and she was very pleased about it.

Showing off

Felix was given a stuffed toy monkey a few weeks ago by one of his Godmothers. It is brightly coloured and really cute. He was petrified of it! He didn't want to go anywhere near it and if we put it on his lap, he would throw it as far across the room as he possibly could. Isaiah (14), decided to make it his mission to get Felix to, not only hold the monkey but cuddle it as well. He sat with Felix, cuddling the monkey and showing him it was OK. Isaiah would wrap his arms around the monkey and move from side to side, saying "Ahhhh". It didn't take long at all until Felix grabbed the monkey and copied what Isaiah had done exactly. Every time Isaiah cuddled the monkey, Felix would cuddle the monkey. Problem solved. He now sleeps with the monkey in his bed :)  

Me? Determined?

Since Felix has started walking a lot more, he has taken an interest in his little push along trolley. He races up the hallway and when he gets to the end he grunts at us to turn him around so he can go back the other way. Today Nathan was playing with Felix while I went to pick up the kids from school. He told me later about how when Felix was pushing the trolley around the lounge room, he would impatiently grunt if there was an obstacle (eg. the coffee table) even a metre in front of him. Nathan would move it just the slightest bit and Felix would happily push his trolley past it. He just wanted to make sure his path was clear. He's so funny when he gets impatient. Once he is much more competent on his feet, I'm sure he will probably stomp his feet as well. He's a very determined little man, which I'm sure will give us some headaches but will also benefit him, because I'm pretty sure he will push himself to do things even if they don't come easily to him.

Friends

Beautiful Sophie

Felix has had the chance to catch up with a couple of his little friends this week. At the Special Needs Playgroup on Monday, he got to hang out with Sophie. Felix has been a bit scared of Sophie recently because she really wants to shower him with lots of love and he's not quite sure about that. He was actually really good this week and interacted with her during singing time and story time. He clapped for Sophie when she put her photo on the photo board, and he let her put the sheet over his head for the "Where is?" song. After his turn was finished he wanted Sophie to have another go. I'm hoping he'll continue to feel comfortable with Sophie and the other kids at the group. It's a small group of kids, so it's a good place for him to build up his confidence with other little ones.

Felix's buddy, Jacob, came over to our place for a play this afternoon. They haven't had a chance to play with each other for such a long time because one or the other of them has been sick, so it was great to finally get them together. Felix looked really excited when he saw that Jacob was here. They started playing together straight away. Felix introduced Jacob to one of his favourite play things; his beads. It wasn't long before Jacob was wearing some around his neck. They made quite a pair wearing their 'bling'. I told Rachel (Jacob's Mum) about my plan to replace the beads with something a bit more 'boyish' if Felix is still wanting to wear them in a few years time, but for now it's one of his cute little quirks.

Felix and Jacob

Jacob is now 18 months old, but is much bigger than Felix. He's like a gentle giant :) One of the reasons why Felix and Jacob play so nicely together is because Jacob is very placid, so he doesn't frighten Felix like some other kids do. He plays very gently with Felix and it's so beautiful to watch. He is such a sweet little boy and has the most contagious smile. Since we saw Jacob last, he has learnt to crawl and is starting to sign which is really exciting. We sang 'Twinkle, twinkle little star' so that Jacob could show us how he could do the actions, but he was so overwhelmed by everyone doing the actions to his song that all he could do was sit and smile. It was very cute!

Felix and Noah watching the rain

Felix is still getting used to sharing the limelight with his little nephew, Noah, so we have to watch him carefully when they are together. Sometimes Felix can look like he's being really gentle but then he'll grab poor little Noah's face. It started off beautifully this afternoon. Noah was sitting in the Bumbo seat looking out of the window at the rain and Felix was sitting next to him doing the same. It was gorgeous to see them both so fascinated with the rain running down the window and seeing the water rush down the road. A bit later, however, Joel was laying down with Noah up against him when Felix suddenly launched a toy saucepan towards Noah and hit him in the head. Noah didn't react at first but, after the realisation that his head was sore, he started to cry. Felix looked a little bit puzzled at what had happened and tried to climb onto my lap, but I told him it was naughty to throw things at Noah and moved him away from me. He looked broken hearted and his bottom lip dropped. I had to resist the temptation to pick him up and cuddle him straight away. After a minute or so, I told him to say sorry to Noah and gave him a snuggle. Hopefully he'll learn to be a bit more gentle.

I just wanted to make mention that Noah's beautiful Mummy, Mel, has started her own blog about breastfeeding. Mel is only 17 years old and has showed an incredible level of maturity and a natural ability as a new Mummy. I'm so proud of her. If you'd like to have a read, her blog is http://mommagotmilk.blogspot.com.au/

Little milestones - Great Reward

Having a picnic with our puppy, Atlas

Last week at Kindergym I was starting to get a little bit concerned about Felix's interaction with other kids his age. When we were going to the regular Playgroup, Felix was starting to learn to play with a lot of other kids running around, making noise and sitting close to him. Since we stopped going (because of the time change being during his sleep time), he hasn't had a lot of exposure to big groups of kids. Over the past few weeks I've noticed him develop almost a fear of other (small) children. Last week it was the worst I've ever seen him. If another child came to within a couple of metres of him he would lay face down on the floor and refuse to move until they went away. If they got too close he would climb up in my lap as quickly as he could. I decided that the only way forward would be to keep attending places where there were a lot of kids, give him lots of reassurance and hope he learns to feel more comfortable.

This photo made me laugh so much

I went to Kindergym this morning expecting him to behave like he did last week. I was pleasantly surprised to see that, although he was cautious at first of the other children, he didn't appear to be frightened. The first little boy who approached him was just walking slowly which definitely helped. A bit like me when a mouse rushes out from under the freezer and across my foot, Felix jumps if kids come rushing really quickly towards him. By the end of this morning's session he crawled right away from Nathan and I and sat near a mini basketball hoop where a little boy was playing. Felix found a ball on the ground and threw it towards him. It was beautiful to watch the little boy pick up the ball and go and hand it back to Felix. Each time after that, when Felix threw the ball, he would bring it back to him. When another child came and took the ball he was playing with, the little boy found another one for Felix. It might not seem like such a big deal, but a lot of kids with Down Syndrome find large groups of people quite challenging, so for us to have this tiny breakthrough with Felix was fantastic!

We noticed a couple of other things this morning too. Felix's ability to climb up the obstacles (various big padded blocks and soft stairs etc), has improved incredibly. He loves, what I can only describe as, a huge big padded donut shaped thing laying flat on the ground. The sides are about as high as Felix is tall so when he's in the middle of the donut he can only just see over the top. There are a set of soft stairs which he has to climb up before he reaches the top and then can lower himself into the middle. Usually he gets to the top of the stairs and needs help to lower himself down the other side. This morning, he climbed the stairs then spun himself around to lower himself feet first into the middle of the donut without any help at all! Nathan and I both had huge grins on our face as we sat and watched him.

Having a laugh on the toilet

It's funny; we don't ever really notice what Felix can't do compared to other kids his age. I think we get so wrapped up in how incredible we think he is, that we completely forget that most of his milestones are reached later than other kids. Today we had a reminder when a gorgeous little girl came running past Felix. She was at least 20cm taller than him and definitely much bigger. She was jumping and climbing and talking. I asked her Mum how old she was and got a huge shock when she said she was 18 months old. Four months younger than Felix, but I would have guessed at least a year older. The great thing is that I can honestly say it didn't make me feel sad or disappointed that Felix isn't doing a lot of what that little girl is doing. In fact, just after I spoke to her Mum, Felix successfully maneuvered himself over the top of a big padded block all on his own, so Nathan and I went back to cheering our clever little man. Shortly afterwards he walked away from us towards another little boy. He still usually only walks in between people, so to walk independently away from us was awesome! The little things have become incredibly exciting and never cease to fill us with so much pride.

No Apologies

Enjoying pushing the car around

I've had quite a few people question why Nathan and I were not upset when we received a pre-natal diagnosis of Down Syndrome with Felix. Most people have a period of shock, grief and a whole bundle of mixed emotions when they find out the baby they are pregnant with, or have just given birth to, has Down Syndrome. This is perfectly understandable. When you fall pregnant you expect to give birth to a baby with the same number of chromosomes as you and your partner. Your main concerns are whether or not you'll get much sleep, what colour to paint the nursery and whether you want to breast or bottle feed. To be told that the wriggling, beautiful little bundle growing in your belly isn't 'normal' (in the eyes of the medical profession) can be devastating. I totally understand that, and no one should feel guilty for those feelings.

Felix with his Special Needs Playgroup Teacher

For Nathan and I, things were a little bit different. We already had eight children between us when we met. Eight perfectly healthy, talented and beautiful children. We had made the decision not to have a child together because the other kids were older and independent and we were really happy with the way things were. We loved our kids and had a great life. Several years later, however, we changed our minds. We decided that we'd love just one more; the cherry on the top.

I was almost 39 years old when we decided to try for another baby. Nathan was only 31. We knew that there was a much higher chance that we would have a baby with Down Syndrome because of my age. In fact, we actually asked ourselves, "Are we prepared to have a child with Down Syndrome? Would that bother us?" Our answer was always that we would be happy with that. In some ways it's a little bit like we made a decision to adopt a child with Down Syndrome; except we didn't know it yet. We already prepared for the possibility even before it became a reality. When, at our 19 week scan the Radiologist said, "I think your baby has Down Syndrome", we really weren't surprised. In fact Nathan responded, "Is that all?" I'll never forget the perplexed look on the Radiologist's face.

Puzzle time

Another thing people have mentioned is that we are 'too positive' about Felix having Down Syndrome. We have been very lucky with Felix. We have not had to endure major health issues or life threatening situations with him since he was born. I can't imagine the heartache and exhaustion some parents of children with Down Syndrome have to deal with. Some of our kids have a multitude of different health issues and prolonged hospital stays. Way too many parents have to say goodbye and hold their children as they pass away. Some have watched them go through a great deal of pain and trauma. We are so blessed that Felix is so healthy. We were absolutely crushed when we were told that the fluid on his brain meant he may not survive until birth. We talked in depth with our Obstetrician about doing whatever it took to at least have a few minutes with Felix after he was born before he passed away. One of the reasons why we celebrate every day with him is because at one point we didn't even think we'd have one!

So much concentration

There are a couple of other reasons why I'm super positive when I talk about life with Felix. One is because I have already endured the loss of a child. I can't even describe the pain I felt when I lost my daughter, or the pain that still lives with me nearly eight years on. She was born asleep, so I never got to hear her cry or see her smile. I still spend time wondering what she would have been like if she was alive. To me, Felix is a miracle of life! Most foetuses with an extra chromosome will naturally miscarry. The body will reject that which isn't 'normal'. The fact that he is even alive shows that he was just meant to be! He fills my heart with so much joy, I can't help but be positive. His birth didn't take away the pain of losing Eden, but it made me appreciate the fragility of life so much more than ever before. The fact that he had Down Syndrome didn't matter. He was alive and he was perfect to me.

I can't help but celebrate this life!

Secondly, I am positive because he has changed our lives. We were in a great place before Felix came into our lives, but we are in an even better one now. He has educated us about acceptance and a love so deep it's unexplainable. We have watched our kids become educators to others and have observed them as they have stood up for people with disabilities (even deleting people from Facebook for derogatory comments). Their friends ask to come over to our house because they want to play with Felix. It's awesome! Felix has educated eight siblings who are now educating others. The acceptance is spreading and it's beautiful to see.

I'm not going to say that I never have negative thoughts. I am a fiercely protective parent and worry about Felix's future. The thought that he will be teased or treated with disrespect when I'm not around to stand up for him kills me sometimes. The thought that the fluid in his brain could get to a dangerous level again petrifies me when I think about it.  I often discuss my worries and concerns with other parents of children with Down Syndrome. But, at the end of the day, I am trying not to dwell on the negatives and get distressed thinking about all the possibilities in the future. Just for now, I'm going to enjoy every day. I'm going to celebrate the happiness and joy which Felix brings into our lives. For now he is a very healthy little boy who is progressing beautifully. If some think I'm being too positive...so be it. I have never laughed so much or felt such a unity within our family... it is beautiful and I'm loving every second!

It's Cold Outside

All smiles at the park

Felix loves it when Nathan has a weekend off work. He always comes up to our room for a snuggle in bed with both Mummy and Daddy, which he really enjoys. Nathan goes to the kitchen and makes Felix his porridge and a cup of coffee for the two of us, then brings it up to the bedroom. This is the one meal of the day which we don't let Felix spoon feed himself; we don't really want porridge all over the bed. He eats his breakfast very quickly and then always tips up our coffee cups to see if he can get any tiny drops of coffee from the bottom of them. After he's eaten, I always take him to the toilet because if I leave it too long he will do something stinky in his nappy. It's SO much easier now he's happy to use the toilet!

A bit tricky to walk with shoes on

This morning I decided to go to the shops fairly early to buy a few birthday presents for some of Felix's little friends. I took Felix with me because usually he likes to get out of the house for a while, even if it means sitting in the pram for an hour or so. I really wanted to look for some interactive books to buy for the kids. The problem is, Felix really loves books. This is a wonderful thing at home but, when pulling book after book off the shelf to look inside and see what they are like, it's difficult to have a toddler who wants to do the same. He got really grumpy. He was pulling at the straps of his harness in the pram to try and get his arms out so he could reach the books on the shelf. When I finally handed him a fairly sturdy looking board book so he could look at it, he launched it across the shop! He didn't want to look at the book I chose. He wanted to get out and help himself. Needless to say, I made my selections as quickly as I could and exited the shop. He certainly wanted to crush the stereotype that children with Down Syndrome are 'happy all the time'.

Snuggled up from the wind

Nathan suggested taking Felix and the dogs over to the park again today. The older boys were already over there, running around with their friends. It was freezing cold, but Felix really enjoys being outside, so I rugged him up in a big thick coat and we headed over there. I had put shoes on Felix's feet because I didn't want his toes to go numb from the cold but, because he has only just started walking, he struggled to do it with shoes on. The shoes, combined with the long grass made it very tricky. I admire his persistence though; he really tried hard to steady himself and take a few steps, but in the end it was easier for him just to crawl. After a while I took his shoes off and he was relieved to be able to get up and walk a bit more. It must have been really cold on his toes because after about five minutes, Felix came back over to me and tried to put his shoes back on his feet by himself. I think we all enjoyed sitting by the heater when we went home again!

Poor Little Kangaroo

Joel with the naughty dogs

Life is never dull in our house. This morning I was woken up just after 5am by a strange noise coming from our kitchen. I pulled on a jacket and went to investigate. What I found were three very guilty looking dogs who had managed to get the back door open and into the house. They were having a wonderful time pulling rubbish out of the bins and eating the hot dog buns which were meant to be the kid's dinner tonight; all the while spreading dirt and mud everywhere. Thankfully I heard them before they went hurtling through the rest of the house. I had visions of Felix's toys all over the back lawn. I was actually glad, for once, that I'm a light sleeper. Needless to say, all the commotion was enough to wake Felix up, so our day started pretty early this morning.

What do you mean I'm not allowed
to climb on the table?

The end of our day was even more dramatic. I had to go out for a few minutes with Joel and, because Nathan and the other boys were busy, I decided to take Felix for a drive with us. The drive there went smoothly, but on the way back a kangaroo jumped two fences, and onto the road in front of my car. I barely had a second to react before I hit it. The poor thing struggled to get up and I could see it was hurt really badly. I was feeling so sorry for the kangaroo that I didn't even check if Felix was OK (which he was...the car didn't get knocked around too much).

It was dark so Joel jumped out of the car to try and get the kangaroo out of the middle of the road before it caused another accident. He sat and calmed it down while we waited for the Police to arrive. Felix, meanwhile, sat chatting away in his car seat, a bit excited by all the action. His eyes got huge when he saw the flashing Police lights. It sure beat a boring night at home! I got him out of the car and took him to see the lights a bit closer.The kangaroo wasn't going to survive and was in a lot of pain, so the Police put it out of it's misery. I covered Felix's ears, but he didn't seem bothered by the gunshots. I think he was enjoying his adventure.

Kisses from Isaiah

It wasn't until after all this that I thought to check the front of my car. Hmmmm.... if you have never seen a kangaroo up close (those of you non-Australians), they are pretty solidly built animals. This one was only a small one thankfully, but I still ended up with a smashed headlight, front grill and a dent in the bonnet. Enough damage to need it repaired unfortunately. I started to feel a bit angry about it, but then I reminded myself that Joel, Felix and I were all OK, we didn't hit the car which was driving next to us, and it could have been a whole lot worse than what it was. Kangaroos are responsible for some pretty serious accidents at times. Thankfully it's the first kangaroo I've ever hit since moving to the country 6 years ago, and hopefully it will be the last! I think I'll teach Felix how to sign 'kangaroo' tomorrow :)

Mr. Music

This is what he was doing when I came
into the room

Felix makes me laugh so much. Yesterday morning, I left him to play in the lounge room while I went into the kitchen to make myself some breakfast. When I got back, I found him sitting in the Bumbo seat (which our Grandson, Noah, now uses). He had a book open on the tray table and was happily reading it. There was a picture of an ice cream on the page. I watched as he pretended to scoop it with his hand and then put his hand to his mouth with an "um" sound (like yum!) After he had done that a few times, he put the page near his mouth and licked the ice cream. So funny! When he finally looked up and saw me he cracked up laughing.

Guest blogger?

Recently I've been going a bit crazy, cleaning out cupboards and sorting things out (and no, I'm not pregnant!)  Anyway, I went through all of Felix's toys and sorted them into blocks, cars, musical instruments, puzzles etc  I figured that way I could rotate his toys so that he has something different to play with every now and again, and doesn't get bored by having the same toys out all the time. Today I brought out the musical instruments. Felix really likes his little wooden xylophone and got excited when he saw it. When I handed him the sticks, I deliberately gave them to him upside down and put them in his right hand to see what he would do. He went to hit the xylophone once, then looked at the sticks with a puzzled look on his face. Straight away, he turned them both up the right way and passed them to his left hand and started hitting the xylophone. Every now and again he would put a stick in each hand and alternate them, but most of the time he held both in his left hand and played it like that. He played it with his own unique style.

Pressing the button to make the
frog sound

I was sitting in front of our lounge room window today reading some books to Felix.  He really likes the sign language ones we bought for him. The pictures in it are simple, and the diagram showing how to do the sign for that picture helps us learn more sign language too. Felix sat for about twenty minutes as we read through each of the books. When we had read each of them, Felix grabbed the first one again and we started over. When he finally lost interest and wandered off to do other things, I stayed by the window and kept practising
my signing. After a while, I wondered what I must look like to anyone passing by our window. I was waving my hands all over the place, sometimes repeating the same sign again and again. I probably looked like a crazy person sitting there by myself!

Kindergym for the first time in weeks....
Yay!!!

Felix has learned a lot of new signs from an application on the ipad called 'I Hear Ewe'. I think it cost us 99c and is the one he has played with the most. There are three different pages. The first one has twelve cartoon pictures of domestic animals such as a dog, a horse, a duck etc. When one of the pictures is pressed, a voice says, "This is the sound a 'dog' makes", followed by a realistic sound. The second has pictures of twelve different wild animals and the third has twelve different modes of transport. Each can be pressed and the voice says what they are and the sound they make. The last page is his favourite at the moment. I have looked up the signs for the vehicles he likes the best and when he presses that picture, I show him the sign. So far he has learned how to sign car, motorbike, train, bike, and today he did helicopter for the first time which was pretty exciting. He thinks the sign for plane is hilarious, but hasn't attempted it yet. We're also working on boat and police car. He also likes the pictures of the monkey, duck, pig, dog and chicken because he knows the signs for all of them. I love watching him sign 'chicken'. It's adorable!