Monday, 26 August 2013

Getting Stronger

Enjoying exploring
Last time I blogged, I wrote about Felix starting to get sick. As is Felix's style, he ended up with a gunky, weepy, ear (although it was his 'good' ear this time). The poor little guy was an oozy mess for a few days; sticky eyes, snotty nose, messy ear and extra drool. When he approached us to give us a kiss, we had to dodge to try and find a dry spot on his face. Thankfully, apart from a couple of nights of coughing, it didn't develop into croup as well, so that was a huge relief. The Doctor prescribed antibiotics for his ear, and gave us a prescription for Redi-Pred to keep on hand in case he got croup as well. The Doctor (who we hadn't seen before), was actually able to get a good look at Felix's right 'problem' ear, and saw that it looked good and the grommet was sitting exactly where it should be.... awesome!

Felix charmed his way into the heart of his new Physiotherapist today. She had me strip Felix down to his nappy so she could have a really good look at his back and legs. He thought it was hilarious to be running around with no clothes on in her warm office. It's been so cold that, apart from bath times, he's been wearing layers and layers of clothes. He was quite the little entertainer. The Physio was really happy with Felix's development. She made a mention of how well he uses bilateral motion eg. clapping, throwing a ball with two hands etc.

Due to hypotonia, people with Down syndrome walk with quite a 'wide base', meaning they walk with their legs further apart than most people. Felix's gait, although improved from using the 'Happy Strap' while he was learning to walk, is still wider than it should be. The Physio suggested some ways to try and increase the strength in Felix's quads, which will also help his hip placement. One of the things she suggested was encouraging him to ride his push-along bike, and to see about getting him a balance bike. Felix has never been very interested in riding his bike so he might need a bit of encouragement, but it will be worth it if it helps to strengthen his legs. It's good to be given  constructive suggestions from Felix's therapists. I like having advice we can work on, rather than just be told to 'keep doing what we're doing' (which has been said often before). Like I always say, I know Felix is doing well but there is always room for improvement and challenges and, if he is willing, why not try?
So clever!

Something I am looking forward to is starting hydrotherapy with Felix once a week. The Physio will be in the pool with us and we will focus on activities to strengthen Felix's muscles. He loves the water and I'm looking forward to seeing his reaction to this type of therapy. I am hoping it will be really beneficial for him and will help with his muscle tone. I'm sure he'll also have a lot of fun. I have noticed that when I lay him down in the bath to rinse the shampoo from his hair, he really enjoys it now. He kicks his legs and swishes his arms through the water by his sides instead of protesting. I think hydrotherapy is going to be one of his favourite things!

We've done quite a lot of exploring lately. Last weekend we went for a drive to a beautiful, little, country town surrounded by hills. Felix had an impromptu physio session, climbing steep hills and walking through long grass. He was drawn to big muddy puddles, and enjoyed the new experience of walking over a wobbly swing bridge. He wasn't so sure about the sensation of the bridge swaying under his feet, but he did really well keeping his balance.
New playground...lots of fun to be had!

A couple of weeks ago we were lucky enough to receive some disability funding to purchase an amazing playground for our backyard. We have already seen the benefits to Felix's gross motor development, with him attempting to climb the climbing wall all by himself and navigating the different levels of the playground. He even managed to hang on to the swing, while I pushed it, without any support from behind or in front. He is so determined to do things himself. Now if, for some reason, I'm unable to drive the 40km to take Felix to kindergym, we can have a good therapy session in our own backyard. The only down side is that we already found a big brown snake right next to the playground. At least we know to be extra vigilant, especially with the warmer weather about to start, but just a little bit of a worry!!

Sunday, 18 August 2013

Sick Chick

Watching TV with Atlas
I've got quite good at predicting when Felix is going to have a bad night. After two days of an increasingly snotty nose, and a day of sticky eyes, last night was definitely going to be a long one. I got in to bed as early as possible, knowing that I would be woken up soon. An hour later, I heard that all-too-familiar barking cough coming from Felix's room, through the baby monitor. Thank goodness we bought him a double bed (I highly recommend it for anyone who has the space). I grabbed a few pillows to prop myself up, climbed into bed with him and lay him on my chest. Felix doesn't usually like cuddles when he's trying to sleep; he likes his own space. That's how I knew he was feeling lousy, because he snuggled into me and fell asleep. If I kept him upright, it eased the coughing a bit and he seemed to breathe easier but, as soon as I lay him down, it started again. Hence, my night was spent sitting up. I
More drawing
managed to doze off around 5am but was woken shortly after by a little voice saying, "Mum" and a sticky, snotty little face pressed against my cheek. As tired as I was, it was a beautiful way to be woken up. I asked Felix to go and get a book, so he sat next to me and looked at his books while I tried to doze off for a few more minutes.

Not long after I got up, I heard the news that another precious little Trisomy angel had passed away. Little Corbin, who had Trisomy 13 and was only given a 1% chance of surviving until birth, died after a few short months on earth. He defied all the odds, and brought unimaginable joy to all who knew him. His Mum is incredible and, despite her enormous loss, is celebrating his life; the life she was told he would never have. What an inspiration! Another reminder to treasure every moment we have.
Cheeky boy

Despite not feeling well today, Felix still enjoyed his food. He has very specific routines when it comes to eating. He has porridge for breakfast every morning, and he sits on our bed when he eats it. I do the spoon feeding (for anyone who had visions of a quilt covered in porridge). He likes to play on his ipad when he's having breakfast and lets us know how annoyed he is if we've forgotten to charge it. At 11.30am every morning, he has a very early lunch. He has a special mat which he spreads out on the floor by himself (making sure the corners are nice and straight) and he sits on it and waits for me to bring him his food. He quietly eats his lunch, has a drink and then brings me his plate when he's finished. I usually take the opportunity to quickly fold the washing or drink a hot cup of coffee while he's occupied.
Nice squiggly lines 

We were running late at dinner time tonight, so Felix looked a bit confused. We usually all sit at the dining room table with Felix in his high chair so, when he was hungry but we weren't ready yet, he straightened his mat out on the floor and said, "eat". Then he walked over to the baby gate outside the kitchen and shook it before heading back to his mat again. He picked up his drink bottle and stood it up nice and straight on his mat and said, "eat" again. He dropped plenty of hints that he was ready to eat NOW, and looked very satisfied when his dinner was ready. It was really cute to watch him communicating his needs to us, using some words and some gestures. The way he thinks through problems and solves them in his own unique way is so clever. He amazes me every day.

Speaking of words.... Felix is using a couple more spoken words just in the last two days. He has completely dropped the sign for 'Dad' (which has been his most used sign) and now uses the word "Dad" all the time. It seems so weird to hear him saying it instead of seeing him sign it for a couple of years. He has also just decided to start calling me "Mum" consistantly. He has said "Mum" every now and again before, but he says it all the time now, which kind of makes me melt just a little bit. I asked Felix, on Friday, if he wanted to get in the car to pick up the kids from school. He looked at me, smiled, and signed "brothers". He may not have all the spoken words yet, but he sure is such a clever little guy!

Wednesday, 14 August 2013


Singing 'eyes & ears & mouth & nose
The ignorance of some people still never ceases to amaze me!

Recently, we decided to buy Felix a new car seat. I travel 1000km each week and he is in the car all that time. The old one didn't support his floppy little neck when he fell asleep, so I wanted something more supportive. The other thing he needed was a new stroller which would fit him now that he is a lot bigger, but can still lay back if he falls asleep. I was looking for very specific things relating to both items, so I contacted a specialist baby shop in the city. The woman I spoke to, over the phone, was very helpful with her suggestions so I decided to make the purchases from that store.

Mummy's glasses
The only time I could make it to the store was on a Sunday so, unbeknown to me, there were different staff members working than during the week when I had called. I walked in and explained that I had spoken to someone on the phone about a stroller for my 'almost' 3 year old who had Down syndrome (thinking that might trigger a memory). I mentioned the stroller I wished to purchase, and that was when it started. No, the woman I spoke to didn't work on the weekends, but did I say my son had Down syndrome? Had I looked at (points to the ugliest, most bulky stroller in the store) this pram? This one is for 'disabled' children! Taken aback, I said that no I hadn't see it but I would like to purchase the other stroller. Was I sure? This other one was specifically for 'disabled' children. I stifled my desire to punch her in the nose, and insisted that I wanted the other stroller.

Not impressed with his alien hat

It didn't stop there. The sales assistant then told me that she had a friend with, "One of them" (referring to a child with Down syndrome). She asked me, "Does 'yours' communicate?" Still feeling offended, but trying to take the opportunity to educate, I told her proudly that Felix can sign over 100 words, and has a few spoken ones. She quickly told me, sounding irritated, " You're lucky. The 'one' my friend has can't communicate at all. I can never understand a word he's saying. He just sounds like he's grunting all the time, but it's OK he's in (a home) now, so I don't have to see him anymore." I was furious at the way she talked about this poor man and was rendered almost speechless. I did manage to try and explain that the tongue is a muscle and people with Down syndrome have poor muscle tone which can also affect their tongue, and can make speech very difficult. She rolled her eyes and said, "You don't need to tell me. I know ALL about it". Aaaaaagh!! Unbelievable....and she works in a store specifically for parents with new babies! I dread to think about a brand new, hormonal Mum, coming to terms with having a child with a disability, walking into that store and being met by someone like that. She should be ashamed of herself.

On the positive side, Felix is still doing really well. He is making more and more speech sounds, which is exciting. We have found that he is drawn to the television show, 'In the Night Garden' and, as much as I find it annoying to watch and can't see any educational value to it at all, Felix seems to make a lot more speech sounds when he is watching it. I discussed it with someone at Down syndrome SA yesterday and she said to put it in the 'strange, but harmless' box and told me that whatever encourages our kids to talk is a good thing. She also gave me a copy of a DVD which she also referred to as 'strange, but harmless', and said that several children (with DS) increased their level of speech after watching it, so to try it with Felix.

Felix had a great time at Early Intervention yesterday. We blew bubbles again, this time focussing on the 'b' sound in 'bubbles'. The kids attempted to slice up bananas with a butter knife, which was good for both coordination and hand strength, and Felix rode a little bike around the room more than he has ever done before, which was awesome! After getting over his initial shyness, Felix sat and played with his little buddy, Chloe, swishing cheerleader-type pom-poms around. They chatted away to each other in their own language, which was very special to watch.
Kisses for Aaron after his bath

In the city, on the weekend, Felix spent a day with his Granny and Papa. I don't know who was more worn out when we picked him up, Felix or them? They had all gone for a big walk and had a play at the park. Felix met a little girl at the playground, who instantly took to him. Mum told me that she even picked Felix a flower and gave it to him.... so cute! The three of them had tea parties, read stories and looked at the birds in the garden. When we got back, Felix was inseparable from his Papa. He kept walking over to him and resting his head on his shoulder. They have a special relationship which is really precious.

Friday, 2 August 2013

More Adventures

Painting with his friends
For the first time in quite a while, the sun was shining yesterday. I took the opportunity to spend most of the morning outside with Felix. I took his painting easel out on the grass and opened up his paints, which he thought was wonderful. He really loves painting, and spent a really long time concentrating on creating his work of art. The dogs played near Felix, while he was painting, and sometimes came and sat next to him. In between painting, Felix gave them cuddles and big kisses. The dogs took advantage of that by sneaking in a couple of big sloppy licks, right on Felix's mouth....totally gross!!

Exploring the bush
About a week ago we had the opportunity to go out in a 4WD to explore some of the country side nearby. We saw so many kangaroos; a lot of them giant, red ones, hopping along in the bush as we drove past. It was an awesome experience for Felix. He really loved seeing all the animals and, even though he sees sheep all the time now, he still got excited to see them out of the window, often signing 'sheep'. Every so often, we stopped the car to have a walk around. Felix explored the scrub, walking up and down the hills, picking up sticks and squatting down to look at things on the ground. He even got to see an old gold mine, which he thought was great. He kept wanting to walk back inside of it, but the massive drop at the end of the tunnel was a bit of a worry, so we had to keep a close eye on him. I love seeing him outside, experiencing new things. It is the best kind of therapy for him!

I took Felix to his Early Intervention class at Down Syndrome SA on Wednesday. Since our move, it's now only a 400km round trip instead of 800km, which makes it so much easier! Felix hasn't been to EI for so long, but he walked in like he owned the place! He was totally at ease with all of his little friends there and was completely comfortable to walk away from me and play. He loves the big ball pit they have there, and spent a lot of time diving into it and throwing the balls around. He didn't particularly want to sit still during the song time, which is quite unusual for him but, after 2 1/2 hours in the car, I could appreciate his need to stretch his legs. He did enjoy popping the bubbles we (the parents), were blowing. We were encouraging the children to make the "p" sound, by saying "pop", but Felix preferred to say "bub" for 'bubbles' which I was really pleased with because I love him using the words he knows how to say. Later, we held feathers in our hands, and blew them off (again using the 'p' sound). Felix didn't get that concept at all. He just wanted to pick up the feather and throw it into the air to watch it float to the ground.... typical boy!

Clever at climbing
Today we spent the morning at Kindergym. Felix is getting braver and much more confident all the time. Today I noticed that he wanted to try all the different activities that were set out, instead of just sticking to the things he is familiar with. He played on the inflatable jumpy castle and slide, which he loved last time, but he also climbed some wooden frames and ladders, played with a hula hoop and rode in a little car. He played in the ball pit and found a giant ball which he pushed around for a while. He had lots of fun inside some tunnels, even laughing when other kids started crawling in behind him. He still quickly crawled away from them, but he did it with a huge smile on his face and then went straight back into the tunnel again. So different from the Felix we used to know, who had to check the tunnels thoroughly to make sure there were no other children around. I'm loving watching him come out of his shell.

Loving Kindergym
Tonight, I loved watching Felix wrestle with Isaiah and Aaron on the floor. He was laughing so much as they played with him. He has enjoyed catching up with most of his older siblings over the past few weeks, and it's obvious how much he misses them when they're not around anymore. We have found him asleep on the spare bed in his room after they have left. It's sad, but beautiful at the same time. He and his sock cat are still inseparable at bed time. I'm sure he knows his big sister gave him that, so it's his way of keeping her close to him. All the kids are so important to him, and I know he will continue to look up to them as he grows. He's a very lucky little boy to have so many people who love him so much.