Friday 22 March 2013

World Down Syndrome Day 2013

Felix had the BEST day!
I've finally got back to my computer after a long drive home today.

I hope you had a fantastic World Down Syndrome Day celebrating the lives of the beautiful loved ones in your life, who have Down Syndrome. 

I've had a busy couple of months planning a fundraiser for the Early Intervention class at Down Syndrome South Australia, and am pleased to say, it was a huge success. I chose to hold it on World Down Syndrome Day, so we could all get together and enjoy our children, and each other, while we celebrated the day. It was wonderful to see so many families, friends and precious little faces (many, covered in cake by the end...especially Felix's buddy, Liam!) I was a bit worried that nobody would come, so I was really pleased to see so many people there.

What I enjoyed most, was the diversity of the group. Some of us knew each other; old friends and new. There were some family members, but probably most exciting of all was a handful of older people, who saw the fundraiser advertised in their church newsletter, and came along, even though they didn't know any of us. I had some wonderful conversations with them as they asked questions and commented about how 'marvelous' our little ones were. The children certainly changed a lot of pre-conceived ideas yesterday!
You're enjoying that, Liam!!

One of 'our' parents, Mum to a beautiful little girl with Down Syndrome, spoke to the group about her and her daughter's experiences in the Early Intervention class from only a few weeks old, right up until her fourth birthday. She was so easy to listen to and gave such an informative talk about what happens at EI. I'm sure it was just as interesting to those hearing about it for the first time, as it was to me. She also showed a DVD with photos, of her daughter, over her time at EI. It was gorgeous, and brought tears to my eyes.  I'd like to publicly thank her for doing such a brilliant job and for being willing to share her story with a room full of people.

Some of our afternoon tea
Something I noticed yesterday was that even though there were quite a few kids rushing around (one super cute little man was riding his bike), there was only happy noise and no crying. There was dancing and smiling, and excited squeals and laughter. It was so precious to see the kids interacting with each other, and the adults, and having a wonderful time.  I was really excited when one little girl, who I haven't seen for months, came rushing straight up to me with a huge smile of recognition...so sweet! It was great to see how much the kids have all grown and developed since I saw them last, and it was fantastic to meet some new parents with their children too. There was a man, in the church office, who said to me as we left, that it was a joy to listen to the sweet sounds coming from the hall where the kids were playing.

Felix with his Granny and Papa
Thank you to everyone who participated in the day, and helped me in the planning and organisation side of things. It always takes lots of hands to make something like that happen. Thank you so much! To everyone who gave a donation, I am so grateful. We managed to raise over $1000 for the Early Intervention class, which will be put to good use enhancing the learning of so many special little people. 

We have had a lot going on in our lives recently, so I have decided to have a little break and set my blog aside for a couple of weeks while I regroup. I thank you so much for reading my ramblings. I am constantly encouraged by messages of support and love. They are greatly appreciated. If you would like to message me privately, please email me at kpaskett86@gmail.com      I'm sure I will have many more Felix antics for you when I come back. Much love x x x

Tuesday 19 March 2013

Two More Days!

Enjoying some quinoa
It's been a frustrating couple of days for me. I have been looking forward to the World Down Syndrome Day fundraiser, I've been planning for this Thursday, for such a long time. Things were moving along nicely, and I only had some last minute organising to do, when I came down with an awful cold two days ago. I have felt absolutely lousy. Why is it that I can go nearly twelve months, without being sick, but just when I need my energy the most.... Bam! I didn't think I was going to be able to finish getting things done, but I've managed to drag myself around and finish what I needed to. I'm feeling significantly better today so, hopefully by Thursday, I'll be back to normal (whatever that may be...hahaha!)

Poor Felix. I have been trying to keep my distance from him a bit, which is hard when I'm home with him all day and want to snuggle him all the time. I've been so worried that he'll get sick before Thursday and I don't want him to miss out on celebrating with us all. I'm really looking forward to introducing him to the people who haven't met him yet, and for him to spend some time with his little friends. He has already missed out on Playgroup this week, so I think he'll be looking forward to running around and socialising a bit.

Still eating...watching Aaron blow out the candles
Felix has been a bundle of energy the past couple of days. It's always the way with kids; the more worn out we are, as parents, the more energy they seem to have. I have been trying to pack boxes, to take to the fundraiser, and Felix has been unpacking them. I got all of his clothes and toys packed, for his sleepover with his Granny and Papa, and he promptly pulled everything out and scattered it all over the floor. I'm taking some blocks to the fundraiser, for the children to play with. I've lost count of the times I've had to pick them up today and put them back in the container, because Felix tipped them out. He's been a little monkey, but I think he's been so bored, stuck at home with a sniffling, sneezing Mum, that he had to entertain himself somehow.

Bet you can't squat and eat like this!
I'm pretty sure Felix is still feeling well because his appetite is as huge today, as it has been over this past week. He had only just finished his breakfast this morning, when he started asking for more food. He's been a bit spoilt over the past week. I've been doing a lot of baking for the fundraiser, so he's been licking the beaters and tasting the cakes. He's probably had more sugar, in one week, than he has had his whole life! Thankfully, his favourite snacks, at the moment, are a little more healthy; sultanas and grapes. He opens the cupboard and gets out a little plastic bowl, and holds it out to us to fill up with them. He knows exactly what he wants, and he shakes his head frantically if we suggest something he doesn't like. He has become very independent at dinner time, and likes to feed himself without help. He's still learning to master his fork and spoon, and will still often resort to picking up his food with his fingers. It's much quicker to eat that way...and a boy has to eat!

Felix and I have an early start in the morning, and a long four hour drive to the city. I won't be posting a blog tomorrow, but look forward to filling you in on the fundraiser when we get home on Thursday night! Have a great World Down Syndrome Day, whatever you are doing, and wherever you are celebrating. If you haven't thought about World Down Syndrome Day, but would like to do something, contact your local Down Syndrome Society and see what events they have on. Go along and enjoy the fun!

Sunday 17 March 2013

Happy St. Patrick's Day

Happy 13th!
Happy St.Patricks Day! Thirteen years ago today, I gave birth to a gorgeous little boy, Aaron. My labour only lasted 25 minutes, and he took a while to start breathing properly from the shock. Thankfully, after a bit of oxygen, he pinked up nicely and got to meet his 6 older siblings who had all witnessed his birth. He was delivered by an Irish Midwife, which was very appropriate for the day. He has grown up to be such a great kid, with the most mellow personality and fantastic sense of humour. Happy birthday, Aaron. We love you so much x x x

Busy boy
Felix must have got tired of hearing he'd only put on 200grams in the past six months. It seems, he's determined to rectify that by eating constantly! I am shocked at the amount of food that tiny little body has managed to consume over the past few days. It seems all we hear is "eat" (spoken and signed).

I took Felix to a little friend's birthday party yesterday. While all the other kids were running and playing, Felix sat and ate. I had put a selection of food on to his plate and he ate all of it, and then asked for more. I refilled his plate a second time and he ate all of that as well. The lady, sitting next to us, couldn't believe how much he was eating. She said, judging by the size of him, she wasn't sure where all the food went. Maybe, finally, Felix is having a growth spurt!

Prior to the food being served, Felix enjoyed a big play in the sand pit. There were a lot of kids rushing past him and making quite a bit of noise, but he seemed unbothered by them, which was great. Once he discovered the slide, I endured my exercise for the day, lifting him up to the top and sliding him down, over and over. He doesn't quite have the neck strength to be able to go down a big slide by himself yet. His hypotonia makes him very floppy, and his neck falls back quite easily (banging his head into the slide). As long as I can keep him upright, he has the time of his life on the slide, laughing his head off and then signing 'again' as soon as he gets to the bottom.
I'm watching you Cookie Monster

While Felix was still eating, Cookie Monster and Elmo arrived at the party. From a safe distance, Felix thought they were fantastic. He started pointing at them as soon as he saw them, and making lots of excited sounds. I let him sit, at a distance, for a while until he was used to them being there, and then decided to take him over to see them. He surprised me by being quite OK with being close to them; he even gave each of them a 'high 5', which was great. I handed my camera to someone so I could hold Felix, and get some photos of he and I with them both. That's when it happened...... Elmo touched Felix! It was the whole Santa thing all over again. His whole body tensed up and he started making a really weird noise; not a cry, not a scream, but an 'I'm so scared, I don't know what to do' noise. I'm not sure who I felt more sorry for, Felix or Elmo. The more Elmo tried to make friends, the more Felix freaked out! I'm pleased to say, it didn't last long. We managed to get a couple of photos. My favourite is of Felix looking very suspiciously at Cookie Monster!
Eating and watching Elmo

Today, Felix literally ate from the minute he got up, until he went to bed (except for when he had a sleep). He always eats a big breakfast, then after his mid-morning snack, he goes back to bed. Today, we had visitors so Felix didn't get into bed at his usual time. I decided to give him lunch, before his sleep, which he ate very quickly, and then slept for a few hours. When he woke up, he was sitting, eating another plate of food when Nathan got home from work. Nathan didn't see the plate of food I had made for Felix, so when Felix walked over and asked him for food, Nathan went and made him another one. He wandered back and forward between the two plates and ate both! Unbelievable!! In only a couple of hours, it was dinner time, and Felix ate even more food. Being Aaron's birthday today, we had birthday cake after dinner. I was relieved, when Felix picked up his piece of cake and threw it off the high chair and onto the floor. Thank goodness! I didn't think he could have possibly eaten anything else.


Friday 15 March 2013

Family

Bedtime smiles
Do you ever have one of those days, when you look at your kids and just think, "Wow! I am the luckiest person alive!" I've had a few of those moments today. Amy, our eldest daughter (21), called to tell me she had just picked up some letters from her old school. Twelve years ago, Amy (then aged 9), Bekah (then aged 8), Daniel (who was 11), and Joel (who was 6), put a letter inside a time capsule at their school. In the letters, they wrote about what they thought they would be doing in ten years time (the capsule was opened a couple of years ago). Amy went to visit there today and was given the letters back. She promptly sent me photos of them and we had a good laugh at what her goals were, at the age of 9! It got me to thinking about the kids when they were younger, and how precious they were. It also made me think about where they are now, and how much my love for them has grown even stronger. I am so proud of all of our kids! However, it must be said....of course there have also been days when I would gladly have given them away ;) (Love you kids!)

Asleep on the couch
Another one of those moments was tonight, after we had got Felix ready for bed. Isaiah (14) and Aaron (13...in 2 days), were playing with Felix and making him crack up laughing. It's always such a joy, for us as parents, to watch all three of the boys having fun together. In times like that, the age gap doesn't matter and the fact that Felix has Down Syndrome is irrelevant. Their laughter continued all the way into Felix's room as we all put him to bed. As he lay down with his monkey and his 'ugly' sock cat, he had the biggest smile on his face. He was so peaceful; secure in the knowledge that he has a family who adore him and would do anything for him. Love our boys!

Fun with his brothers
This morning Felix had a follow up appointment with the GP to check his ears again! We had been putting the bicarb drops in them to dissolve the wax but, the last time we checked, his right ear was still blocked. Thankfully, the drops did their job this time and the GP could clearly see his right eardrum. As we suspected, there is no grommet in there any more. Felix goes back to see the Ear, Nose & Throat Specialist in a couple of weeks, so I'll use the drops prior to going, so they can have a clear look as well. I'm not sure where we go from here, but it would be great if they could multi-task and do his grommet, MRI and his (possible) hernia all at the same time. I think that's wishful thinking though!

Afternoon walk with Daddy
Earlier in the afternoon, Felix was sitting on his picnic mat, eating his lunch while he watched Playschool. It's the time of day he likes to sit quietly, undisturbed by anyone, and eat his lunch. After a few minutes, he had gone very quiet, so I went to check on him. He had climbed up on to the couch and was fast asleep. He must have been so tired. I only ever recall him doing that once before when we were at my parents house. He slept soundly for a couple of hours, looking very tiny up on the big couch. He looked a bit bewildered when he woke up. I don't think he was sure where he was. He woke up in a great mood though, and giggled and smiled his way through the rest of the day!


Thursday 14 March 2013

Group Therapy

Still cute even with a dirty face
Felix spent the morning, with me, making some paper cranes for a centrepiece I'm making for the fundraiser next week. He played with the off cuts of paper, while I folded. He loves little pieces of paper, crumpling them, folding them and trying to cut them with the scissors. It kept him occupied while I attempted to perfect the paper cranes (hats off to the Japanese students we've had stay with us before; they're not easy to make!) He thought the cranes were great. He sat, signing 'bird', and making a funny squawking noise every time I finished one of them. At least he recognised them as birds; I must have done something right!

When the Occupational Therapist was here the other day, I asked her again about group therapy for Felix. She had mentioned it towards the end of last year as something that would benefit Felix, because of his uneasiness around other children. She said there was a group running already, but it was for children, Felix's age, who weren't walking yet. Thankfully, for us, some of the people in the group hadn't been attending so she asked if we'd like to bring Felix along. She also recognised that, although Felix is walking, he's not boisterous and wasn't going to intimidate the other children. If anything, he would be more worried about them.

Brotherly love
Today was Felix's first group therapy session and he really enjoyed it. There were a few different activities set up around the room and the idea was that the children start on one activity (by themselves) and then move around the room, every ten minutes or so. The Occupational Therapists/Physiotherapist watched them play and observed what they were able to do etc. There was also a welcome song at the beginning and a goodbye song at the end, with another break for another song in the middle of the session.

I don't want my shoes on!!
Felix started at the chalkboard, and he was amazing today. He drew some beautiful circles to start with, which impressed the Occupational Therapist. After that, she put the chalk at the bottom of the board and asked Felix to draw a line 'up', and she drew one. Felix copied her and drew a line going up. They did that several more times and then she started at the top of the board and drew a line 'down', and asked Felix to do the same, which he did. She looked pretty pleased with him, and then tried something a bit harder. She asked if he could start at the top and draw a line down, and back up again, like a 'V'. I was doubtful he could do it, but the doubt disappeared in a split second, when he did exactly what she had asked. He drew a perfect 'V'. The OT was really excited about that, and I was pretty blown away. He's always full of surprises!

Felix enjoyed the other activities as well. He tried to thread some beads onto a pipe cleaner, and pushed some shapes into playdough. He played with some puzzles, and enjoyed putting plastic coins into a piggy bank. He had a great morning, and the highlight was that, after initially being shy, he was quite comfortable with the other children, and even threw the ball back and forward to Jacob (his little friend) a few times. All in all, it was a very positive afternoon.

Wednesday 13 March 2013

8 More Days

I had tears today! Nathan and I took Felix to Kindergym together. During song time, Felix walked over to the box and got out a shaker out and gave it to Daddy, then he went back and got one for me too. Finally, he went and picked one for himself to use. He has never had the confidence to do it that many times, with so many children around. We were very proud! It got even better when the songs started. He actually stood in the middle of the circle and danced, and shook his shaker. My eyes are welling up now just thinking about it. It was such a precious thing to see him so caught up in the music and dancing, and oblivious to the other children dancing beside him. It's such a little thing, but to us it is huge!

I'm so excited that in 8 more days, it will be World Down Syndrome Day. It's the second year it has been officially recognised by the United Nations, which is really exciting! I have been working hard at planning a fundraiser to coincide with the day, to raise money for the Early Intervention class at Down Syndrome South Australia. Even though we haven't been able to take Felix to the Early Intervention class more than a few times, due to distance, we truly appreciate the amazing job they do to enhance the lives of little ones, with Down Syndrome. The times we have been there, it has been an incredible experience for us, and for Felix.

If you live locally and would like to join us to celebrate the lives of beautiful people, just like Felix, we would love you to come. I have attached a flyer about the day for anyone who is interested. If we have never met, please come and introduce yourself on the day. It would be great to meet you. If you can't make it, but would like to make a donation, please email me at kpaskett86@gmail.com for more information.

Tuesday 12 March 2013

Therapy and Doctors

Enjoying the sunshine
Considering it's been a 40 degree (celsius) day today, it's been a busy one for us. This morning, before it got too hot, we decided to pack Felix, and all three of our dogs, into the car and go to the dog park. It was already pretty warm, but it was beautiful to be out in the sunshine. The dogs went crazy, and ran themselves ragged, chasing the balls and each other. Felix though it was great to have a huge, grassy oval, to walk on. He enjoyed throwing a ball to the dogs, and then running after them. It's beautiful to watch him having so much fun.

Later, Felix had an Occupational Therapy appointment. I appreciate that his therapist is able to come to the house, for Felix's session. It makes him feel really comfortable, being in his home environment, and it makes it easier for me too, with one less place to have to take him. Felix was in a funny mood today; he hadn't had a sleep so he was being a bit naughty and showing off. As soon as his therapist arrived, he turned his little activity table upside down, and then tried to tip his table and chairs upside down as well. It's hard to keep a straight face when he gives you a cheeky look and then proceeds to do something he shouldn't. I told him off, and then managed to distract him by asking him to come and draw on his chalkboard.

Chasing the dogs
The therapist is very pleased with Felix's development. She believes that his fine motor skills and his cognitive ability is pretty much on par with other 'typical' kids his age, which is wonderful. His gross motor is more delayed, due a lot to his hypotonia (poor muscle tone). She is hoping to do an assessment, along with a Physiotherapist and a Speech Therapist (if there are any available here, due to a lack of staff), in about a month's time to see where he is at developmentally across the board. I'm not a huge fan of assessments, due to the comparative nature of them, but I am keen to see which areas Felix is more delayed in, so we can focus our time and energy on those things, and less on the things he's doing well in. I think it will help us be able to fine tune his therapy and see what we really need to concentrate on.

Wearing his favourite hat from his Papa
In the afternoon, Felix had to see his Paediatrician. It's been six months since we've seen him, so we had to catch him up with all the latest on Felix, including his ears and possible hernia. We also had to get a referral for him to have his next MRI to check on his hydrocephalus (fluid on the brain). If the levels of fluid have remained steady, since his last scan a year ago, we won't have to worry about another MRI for about five years, which would be awesome. We're hoping for a good result! I just thought I'd mention that hydrocephalus and Down Syndrome are not linked to each other. The hydrocephalus occurred when Felix was still in the womb, totally separate from the fact that he also had an extra chromosome. The Obstetrician and Paediatric Neurosurgeon, as well as the rest of the 'team' who met regarding Felix (when I was pregnant),  had never actually come across another baby with both diagnoses.

The Paediatrician did all the usual measurements today. Felix has only put on 200grams in the past 6 months, and now weighs 9.2kg, at 29 months old. He is 81cm tall which, even on the Down Syndrome height/weight chart, is really tiny. All our other kids were very petite too, so we're not worried. He eats well and sleeps beautifully, so I think that's a good sign. The Paediatrician isn't quite so convinced. When Felix goes for his MRI, he's going to get them to do complete blood work, and test for Coeliac Disease as well. He just wants to eliminate that as a reason why Felix may not be gaining weight. He said that even if those tests come back clear, he would like him to see an Endocrinologist to rule out other possibilities. I'm fairly sure everything will be totally fine and he's just going to be a little guy but, hey, who am I to argue with the Professionals?
Cooling down, at the end of the day,
with his dinosaur

Felix had his ears checked, yet again, by the Paediatrician. He had all sorts of problems trying to get a visual of his eardrums. He could only partly see his left one (and he couldn't see the tube the GP saw last week), but he couldn't see his problem right eardrum at all. He commented that Felix has highly unusual shaped ear canals. He now joins a long list of Doctors and Specialists who have said the same thing. Felix was an absolute trooper, and didn't even flinch with him poking around in there. He's getting quite used to it, I think. We will keep putting the bicarb drops in his right ear until he sees the GP in a couple of days. Hopefully, by then, he will be able to get a good look.


Monday 11 March 2013

Little Fish


We've been having a heat wave, here in South Australia over the past week, so last night we decided to take Felix, and one of our dogs, to the beach to cool down a bit. Felix was excited, even just getting his bathers on. He loves the beach, and last night was no exception.

Gone are the days of Felix sitting in one spot on the sand, or paddling his toes at the edge of the water. As of last night, he just wants to keep walking out into the water; the deeper, the better! As soon as we got to the beach, he walked to the edge of the water, and just kept going. He had little waves splashing him in the face, but was not bothered at all.  Every time I tried to turn him around to lead him back to where it was more shallow, he got cranky with me and pushed my arm away. He was quite confident in his abilities, but I knew that at any second, he was going to try and sit down and the water would be way over his head (I'm a little bit paranoid about him getting another ear infection so I didn't want that to happen). He maintained his balance, even with the waves trying to topple him over. I was very impressed.

After a while, I convinced Felix to come and play in the sand for a while. He didn't want to just sit, though. He wanted to go for a bit of an adventure. He walked up the beach, over different surfaces; hard sand and soft, and piles of deep seaweed. It was great to see him navigating so many obstacles, without once tripping or falling over. He has become a lot stronger in his legs, through climbing and balancing on things at Kindergym, and at home. I think he has become a lot more aware of his surroundings too; knowing when he has to be careful and slow down, and when he can just rush. The beach is a perfect place for him to practice all the new skills he has learnt, and it's a bonus for us to be able to see him enjoying himself so much.

By the time Felix had finished playing on the sand, he was covered in it, head to toe. He headed back to the water again, so I decided to go for a dip and take him out deeper, with me, to give him a good rinse off. He absolutely loved it. He couldn't stop giggling. He hasn't been to swimming lessons for ages, because of all the trouble with his ears, but he quickly remembered how to kick his legs. His favourite thing was when we were jumping over the little waves with a 1,2,3. It wasn't until the very end when I missed a wave (they were only tiny), and it splashed him in the side of his head and water got in his ear. Next time I'll have to remember to take his headband and earplugs with us. I worry about his ears, because he's had so many infections, but he gets them even when we don't take him in the water, so I'm not sure it makes that much difference.


Saturday 9 March 2013

Being Creative

So artistic...
We have a little artist on our hands. Felix was a bit bored yesterday, so I decided to get out his paints and let him release some of his creative energy. I set him up on his plastic table, in the kitchen, with a big piece of paper, some brushes, rollers and his paint. He was very delicate at first, dabbing the paper with a round sponge to make some circles, and then using the end of his finger to place little, tiny dots everywhere.

Crazy kid!
After a few minutes, he was really enthusiastic, changing brushes and colours and using the roller as well. By this stage, his hands were starting to get covered in paint, so he began pushing them into the paint on the paper. I helped him out by painting the palm of his hand, and then asked him to push it onto the paper. I think he remembered having to push his hands in to the dough, at Christmas time when we made his hand prints, because he knew exactly what to do. The result was a couple of perfect little hand prints on his painting. Of course, the time came when Felix thought it might be good to taste the paint. It just happened that the paint pot open at that time was the black one, making him look like he was trying out for the role of the 5th member of KISS. Nathan had the great idea of getting him to do his 'crazy face' with his black mouth. I think you will agree it's a classic!

Felix has changed his routine up and is now having a sleep later in the afternoon. Often he's not hungry in the middle of the day before his sleep so, when he wakes up in the late afternoon, after a couple of hours, he's ravenous. Yesterday, he sat and ate all of his lunch and then some of mine. Isaiah (14), told me later, that Felix also ate half of his sandwich as well. After eating lunch at about 3pm, I was pretty sure Felix wouldn't be too interested in food at dinner time. He must be having a growth spurt, because he ate a big bowl of gnocchi and lots of fruit as well. He's a growing boy!

Time for a bath..
Felix has probably only had ice cream a handful of times in his life, mainly because we don't tend to eat dessert, but also because I don't like him having too many sugary foods. Last night, I bought the boys some ice creams, because it's been such hot weather, so we decided to let Felix have one after he'd eaten all his dinner. He demolished the whole thing! He must have thought it was Christmas! Sadly for him, his stomach didn't feel the same way and he promptly threw it up as quickly as it went down. He didn't seem to mind though. I think he probably would have done it all again for another ice cream :)

Friday 8 March 2013

Imaginary Snacks

Felix drawing a dinosaur
Felix and I enjoyed a lazy morning together at home today. I sat on the computer for a little while, and made some phone calls, and Felix played happily with some of his toys on my bedroom floor. At one point he brought me his container of little animal counters to open. He hasn't played with them for a while thankfully, because they end up all over the floor and under every piece of furniture, but he does love them. I was on a phone call organising a fundraiser for World Down Syndrome Day, so I wasn't paying close attention to him. When I finished the call, Felix handed me the container of counters. Inside it, were all the yellow animals; no other colours, just yellow. He had obviously picked them out and put them back into the container.What a clever little boy! He never ceases to surprise me!
Felix and his nephew doing some
cleaning

Later in the morning, Felix was sitting in the middle of the hallway looking at one of his sign language picture books. It was open to a page that had a photo of a plate of biscuits. He was playing an imaginary game, sitting and grabbing at the biscuits and then putting his hand to his mouth and saying, "Yum". I sat and watched him for a while doing it over and over. After a few minutes I joined him and we both sat in the hall eating imaginary biscuits off the page. Once we'd had enough biscuits, Felix turned the page to a picture of a bowl of muesli. He, very delicately, 'picked up' a piece of the muesli between his thumb and first finger and then 'ate' it. He couldn't have been any cuter if he tried. I was lucky enough to have some of the muesli too, served with his very 'posh' finger grip!

Me and my boy
After our lazy morning, I had to take Felix back to the Doctor. We have been putting drops in his ears, to loosen the wax in them, in the hope that the Doctor might be able to see if his grommets are still in place. After a very long look, he was finally able to see the grommet in his left ear. His problematic right ear was always going to be the issue. Unfortunately, there was still quite a bit of wax around his eardrum, but the Doctor is still pretty sure that the grommet has come out. We'll keep putting the drops in that ear for another week and then have the Doctor have another look. The other thing we had checked was the possible hernia in Felix's groin. The Doctor has decided to send him for an ultrasound just to confirm it, because we have still noticed a bulge every now and again. Hopefully he won't need surgery, but with two brothers who have already had inguinal hernia surgery, I think it's a strong possibility.



Thursday 7 March 2013

Charming

Upside down
Felix has another new admirer today, after I caught up with a friend I haven't seen in years. Before she came over to our house, she sent me a message asking if she could bring a treat for Felix, because she wanted him to like her. I assured her the fact that she was female and over the age of five, it was a sure thing! He was definitely going to like her!

When Felix heard the knock at the front door, he rushed over, to help me open it, and my friend was welcomed with a huge smile. Of course, he pretended to be shy, but it only lasted for a couple of minutes. She brought a packet of chocolate covered biscuits with her. They were tiny little ones and Felix thought they were great. If he didn't love her before, he definitely did after tasting those! By the end of the visit, he was giving her huge cuddles and cheeky grins. He's such a little charmer!

Trying to get out of going to bed
Playing with Daddy is one of Felix's favourite things to do. Nathan will lay on the ground and Felix will jump all over him. Tonight, Felix was sitting on Nathan's head. I couldn't stop laughing but I don't think Nathan thought it was as funny as I did. Every time Nathan lifted him off, he'd go back and do it again. After that, Nathan started lifting Felix off the ground and hanging him upside down. Felix was laughing and signing 'again'. I was just sitting there hoping his dinner wasn't going to end up all over the front of Nathan's shirt. Boys will be boys!

At bedtime tonight, Felix kept trying to get out of going to bed. He shook his head, 'No', when we told him it was bed time and then, very emphatically, shouted "Eat" (while signing it as well). When he realised we weren't giving in and getting him food, he walked as fast as he could down to the lounge room and started snuggling, on the couch, with his big brothers. When we tried to pick him up from the arms of one of the boys, he would dive into the arms of the other one. The whole time he had a grin on his face because he knew he was prolonging his bedtime. He wasn't too impressed when we finally wrestled him away from the boys and took him to bed but, judging by the silence coming from his room, he didn't take long to go to sleep.

Wednesday 6 March 2013

Naughty and Nice

New art for your bedside table, Mum
Yesterday, for the first time, it dawned on Felix that it's possible to remove things from the shelves in the supermarket! I had my work cut out for me, pushing a very full trolley as well as trying to prevent Felix from removing everything possible from the shelves, as he toddled along behind me.

Our shopping trip started quite well. Felix sat in the seat of the trolley, waving to people as we passed them. He had fun pointing at different things and chatting away. In aisle two, that changed. Felix wriggled out of his seatbelt and stood up on the seat (thankfully, I was right next to him so there was no chance of him falling on his head). I tried to sit him back down but he wasn't having any of it. I decided to let him walk, because he's usually very good and will follow me. I must have brought the wrong child to the shop, because this one wanted to touch everything. Before I could stop him, he had a container of yoghurt in his arms and was placing it carefully on the floor. When I directed him away from the fridge, he turned straight back and did the same thing again.

Just after falling off, he's back there again
At this point, I figured it would be easier just to carry him, but Felix didn't want to be carried. He twisted and wriggled until he was actually standing on my hip, leaning out sideways. He's very trusting, because he was pushing himself away from me so hard, I almost lost my grip on him. I quickly put him back in the trolley seat again, where he sat quietly for one more aisle, and then started grabbing the shopping from the trolley and throwing it over the edge and onto the floor. Aaaaaagh!!! I contemplated leaving the trolley in the middle of the store and just going home, but I really needed to get it done. I put Felix back on the floor to walk and handed him different groceries to put in the trolley to 'help' me. One thing I gave him was a packet of 2 minute noodles, which contained 5 smaller packets. Within seconds, he had opened the bag, spilling the 5 other packets out onto the floor. He looked quite pleased with himself. This continued the entire length of the supermarket and, I can honestly say, I had never been more relieved to get home again (little ratbag!)

Naughty? Who? Me?
This morning Felix and I went to Kindergym and I am pleased to say that he had quite a positive morning. I think his love for climbing and playing exceeds his fear of other children, in that environment. He still rushed up to me if several children ran past, or got too close to him, but for the most part, he did really well. There was one little girl, a quiet 11 month old who captured Felix's eye. She was so adorable and already walking really well. For some reason, this little girl kept walking towards Felix with a huge smile on her face. Felix, very shyly, kept smiling back at her. Sometimes he tried to hide behind me, but he would peek around my shoulder to smile at her. It was very cute!

Last time we were at Kindergym, Felix really loved the trampoline. Today was the same; he sat and watched some children jumping up and down, with lots of excited "Oooh's" and "Ahhh's". There were a lot of kids wanting to use the trampoline, so I took Felix over to a big padded mat and helped him jump on that instead. He was doing the biggest belly laughs as I bounced him up and down. The most exciting thing for me, was when I put him back on the ground again and asked him if he could jump. He squatted down and then stood up as fast as he could, lifting one foot off the ground and then once that foot was on the floor again, he lifted the other. It was a bit of a cross between a stomp and a hop, but I was so proud!! All afternoon, when we got home, he has been 'jumping'. I'm so proud of our little guy for trying so hard.




Monday 4 March 2013

Two Steps Forward, One Step Back

This face always makes me smile
Today has been a frustrating day, on so many levels. It was Special Needs Playgroup day and I was looking forward to getting Felix out of the house to be with some other children his age. He has had some really positive times recently, in groups of children, and it seemed that we were getting somewhere with his confidence around other little ones. That being said, I feel like we took a giant step backwards this morning. OK, in hindsight, maybe not a giant step backwards, but it was a big step backwards. As soon as I got Felix out of his car seat, his arms clung tightly around my neck. When we walked into playgroup, he buried his face into me and hugged me tight. I knew it was going to be a long morning.

Felix only weighs 9.1kg (20.06lbs), which isn't very much at all for a 29 month old. When you are wearing that 9kgs around your neck, it becomes quite heavy and, when that 9kgs is also hanging onto your hair for dear life, your head feels like it might dislodge and fall off. I sometimes feel tempted to shave my head just so Felix doesn't have anything to hang on to. Is Felix clingy like this, because he has Down Syndrome? No, I don't think so. I think it just proves that he is like a lot of other children, showing a particularly shy or fearful side of his personality. However, his sensitivity to squeals and screams is most likely due to his narrower than usual ear canals, making certain sounds appear higher in pitch to him; therefore unpleasant. He has got a bit better with squealing etc, but still finds the noise of a baby screaming, or really shrill noises, hard to bear.

Hungry boy
As the morning progressed, Felix hung onto me a little less tightly. He interacted beautifully with the adults who were there; smiling and waving and being very charming, but refused to leave the safety of my lap to sit next to another child, or even play close to them. He was at his most relaxed during song time, and was happy to get down off my lap to put his photo on the board during the welcome song. As soon as he had put his photo on the board and clapped at how clever he was, he quickly climbed back up onto my lap and assumed the baby koala position on my chest. I do enjoy his cuddles, but I consider it a really successful morning if he has at least some interaction with another child, which didn't happen today.

There were other frustrations today regarding Felix's therapy. Being a country town, our facilities are quite limited at times and staffing can be minimal, or even non-existent. We really want the best for Felix, especially during his formative years when he has such a huge capacity for learning. I sometimes feel like we're beating our heads against a brick wall to try and get appointments to check on his progress. Usually, I don't let it get the better of me but today I felt very frustrated and overwhelmed by it all.

Do you mind? I'm eating!
If there's anything that can make me feel better when I'm feeling a bit flat, it's some time with Felix. When we got home from playgroup, Felix relaxed immediately. He told me he wanted to eat, so I got him a snack and we sat and just hung out together. We read some stories and sang some songs. Felix picked up one of my dresses and put it over his head and then laughed and laughed when I pulled it off and said, "Boo". He just made my heart melt today. He spoke a couple of new words, "Ball" and "Baby" which was super exciting. To see the way he concentrates so hard on putting his mouth in exactly the right position before he tries to say the word, is really amazing. It's obvious to me that he has so many words on the tip of his tongue, just waiting to come tumbling out. He has already learnt to speak four new words this week and we're thoroughly enjoying hearing that precious little voice starting to vocalise. Exciting times!

Sunday 3 March 2013

Happy Birthday Daddy!

Happy birthday Dad, from Felix.....
We have enjoyed a lovely, lazy Sunday today, made even better because it's Nathan's birthday. Felix woke up extremely early this morning. I'm telling myself it's because he wanted to be the first to wish Daddy a happy birthday, and not because he's going to get into the habit of waking up super early again. We were just getting used to our 7am sleep ins! Felix ate his porridge on our bed, like he does every morning, then he helped Nathan eat his French toast as well. Even if he's full from his own breakfast, Felix will always manage a few extra spoons full from our plates. It's the one meal of the day when he eats like a horse.

Even though our house seemed really empty for Nathan's birthday today (this time last year, we had 2 more kids still living at home, plus a very pregnant Mel), we had fun with our remaining three boys. The older boys helped Nate to set up his Playstation (He's always been an Xbox fan), and answered his questions about the games he was playing.  Felix walked up the hallway, carrying a bag of donuts for Daddy's birthday, and saying "Yum" which was pretty adorable. It was great to hear from our older 5 children who we miss so much. We had a surprise visit from Mel, who brought Noah around to wish Pops a happy birthday. They stayed for dinner with us, and we all enjoyed Nathan's requested dinner of Nachos, Salsa and Guacamole. I haven't seen Felix eat that much dinner in a while; he couldn't get enough of it!
.....and Isaiah and Aaron

There was a little bit of excitement, around lunch time, when I noticed one of our dogs chasing something across our backyard. I realised fairly quickly that it was a brown snake, so I rushed outside (in bare feet) to keep the dogs away from it, while Nathan pulled on some boots. The snake slithered into our shed and, when I opened the door, I couldn't see it for a while. There's only one thing worse than having a snake in your yard... having a snake hiding in your yard and you can't find it. Eventually I saw it underneath our BBQ and he looked pretty annoyed, thrashing around. I still didn't have shoes on, so Nate had the job of killing it while I kept the, very excited, dogs away. We haven't had a snake in the yard for a while but we'll be extra vigilant whenever Felix is outside in the near future. Unfortunately, the snakes around here are deadly, and we never know when one of them might make it's way into the yard.

It's been a great day!
Felix added another word to his repertoire today and no, it wasn't snake; although he signs snake and says, "Ssssss". He picked up a teddy bear and said, "Ahhh, teddy"as he gave it a big cuddle. His speech is coming along so well. He is making lots of new sounds and, like the bird noise he learnt at my parent's house, he mimics different sounds he hears. As well as speech, Felix is starting to take much more of an interest in learning the actions to songs. While watching Play School, in the car when we were driving last week, we noticed him copying the actions to a lot of the songs. Today, he was watching The Wiggles while he ate his lunch and stood up every so often to wave his arms or stand on his toes. He still likes singing face to face, the best. The TV is OK sometimes, but he really prefers it when we join in with him and sing and dance. This morning he and I sang (and signed) happy birthday to Daddy. Felix enjoyed it so much, we had to sing it about four times!






Saturday 2 March 2013

Our Little Shopaholic

Fallen asleep with his head in the crocodile's mouth!
I think I've worked out why Felix hasn't been eating well recently. When I was putting him into his car seat this morning, I noticed he has a really big ulcer on the side of his tongue. The other day, he cried but I couldn't work out why. I think he must have bitten his tongue, judging by the ulcer. Poor kid, no wonder he's been miserable when he's offered food. I know I hate to eat when I have one; it's really painful. Hopefully it will heal up soon and it won't bother him any more.

Mum...put the camera away!
It's Nathan's birthday tomorrow, so I needed to go shopping today to buy the ingredients for his cake and pick up his present. Felix was keen to come with me, so I loaded him into the car (along with his favourite monkey), and off we went. I didn't put shoes on Felix because my plan was to put him straight into a trolley at the supermarket, so he wouldn't be on the ground at all. Instead, I decided to pick up the present first, so Felix wriggled out of my arms to go and have a look around the shop. He was in 'cute mode' today. He went up to each customer, tapped them on the leg until they looked down at him, then gave them a huge smile. I love seeing people's faces go from unhappy or grumpy, to a smile when they see Felix beaming at them.

After we'd picked up the present, Felix decided he wanted to walk the rest of the way to the supermarket. I pushed my 'bad mother' thoughts to one side as he walked 'shoeless' through the mall, dragging his monkey by one arm behind him. I realised, quite quickly, that my super fast trip to the shop was going to take a lot longer than first anticipated. Felix wanted to stop and smile at each and every person along the way. Being a Saturday morning, it meant there were quite a few people for him to say hello to. He also decided to go and look at a few of the shops along the way. He checked out the DVD's at the music store, and he went and touched the nice, silky bras hung up in the lingerie shop. He walked into a clothing store and felt some of the clothes on the racks, and took an extra long time in the shoe store, touching several different pairs of shoes. Just as I was about to get him to move on from the shoes, he noticed a CD player, underneath one of the shelves, which was playing music inside the store. Felix squatted down next to it, listening intently.
Fun in the sand

It's funny how we have readjusted to the slower pace, since having Felix. When our other kids were small, I would hurry them up if we were out, because we had things to do or places to be. We're still busy now, but we don't feel the need to hurry any more. We really enjoy just watching Felix explore the world around him. We love watching him interact with people, and seeing the excitement on his face when he experiences something new. Even baking Nathan's cake this afternoon, I enjoyed stopping to let Felix dip his finger into the mixture, to let him try it, and then have him help me turn the mixer back on again, by pressing the button. He went from being a bit worried about the noise the mixer was making, to being intrigued by it instead.

Probably the funniest thing Felix did at the shop today, was when he saw a man on a motorised scooter. Felix stopped dead in his tracks, looked at the scooter, then back at me and signed 'car'. Next thing, he took off to chase the scooter, his hands continuously signing 'car' as he walked along. It looked hilarious, like he was driving an invisible car, as he made his way closer to the man on the scooter (which was, of course, heading in the opposite direction to where I wanted to go). Thankfully, the man was going fairly quickly, so Felix gave up the chase. It certainly gave me, and a few other shoppers, a bit of a giggle.


Friday 1 March 2013

Chalking It Up

Drawing circles
While we were in the city, we bought Felix a chalkboard. He really likes drawing but, taking our eyes off him when he's using crayons or pencils, can be disastrous. He quite likes to chew on crayons, and pencils will draw on all kinds of paper, including that which isn't meant to be drawn on. Chalk is a fantastic alternative and means that even if he draws on other things, it's really easy to wash off.

When I set up the chalk board today, Felix was really excited. He has recently learnt to draw circles, something we've been working on with a drawing app on the ipad. He's really good at them now and will draw one if we ask him to. Other than that, he draws butterflies. Of course, they look nothing like butterflies yet; he is only two years old, but he tells us they are butterflies. He will often look up from what he has drawn, and sign 'butterfly', and today was no exception. He drew lots of 'butterflies' on the chalk board and, very proudly told us all about them.

Reaching up high
One of the reasons we bought a chalkboard was because Felix's Occupational Therapist suggested finding activities for him to strengthen his upper body. She told us to encourage climbing, which isn't a problem because it's become one of Felix's favourite things to do. She also suggested encouraging any activities which  involve him having to raise his arms above his head. The chalkboard is a great tool to encourage that motion, because Felix really likes covering the whole board with his drawings, meaning he has to stretch up high to draw at the top of it. He was balancing on tippy toes today, reaching up as high as he could.

We're still a little bit concerned about Felix's health. He felt really warm again a couple of days ago, but it only lasted for a few hours and then he seemed fine again. His appetite has dwindled again for some reason. It's hard to know whether that's because he's a two year old who is too busy to eat, or if it's because he doesn't feel well. That would have to be the most difficult thing about Felix not being able to talk yet. He can't tell us when something is wrong, so we have to watch him extra carefully. Tonight he refused to eat any dinner and was quite upset at bed time, which is very unusual. When we went to check on him, we found him asleep on the floor. He has just finished the antibiotics for his ear infection, and we're about to start some drops to try and clear the wax in his ears. Hopefully the Doctor will have a better chance to see if his grommets are still in his ears or not.
Thanks for reading my story and letting
me make you smile. I'm sure I've got lots
more crazy faces to show you! Love, Felix

I just realised it's been twelve months since I started writing my blog. Thank you to everyone who has stopped by for a read, and for all the wonderfully encouraging messages from so many of you. I have had the opportunity, through my blog, to talk to Mum's who have been given a prenatal diagnosis of Down Syndrome. I've met new friends, who also have kids with Down Syndrome, and I've felt privileged to be asked lots of questions by people who want to educate themselves about Down Syndrome. Over the past year, my blog has been visited over 24,700 times by people from all over the world, which is really exciting considering I didn't think anyone would be interested in reading my ramblings. Thank you so much. It has been rewarding for me to be able to put my thoughts down, and to be able to share Felix's life with you. There have been good times and bad times over the past year but, one thing remains the same; Felix continues to bring us so much joy and we are thankful, every day, to have him in our lives.