Tuesday, 25 November 2014

So Much To Say

A visiting kangaroo at playgroup
I can't believe Felix has almost finished two terms of full time kindy! In that time we have seen him develop and grow so beautifully. He now plays happily alongside other children, and most of the time he sits and eats with them. For those of you who have followed my blog, you will know how much of a big deal that is!


Not only can Felix read his alphabet and say all of his numbers from one to twenty, but he has started to read thanks to an amazing early learning program suggested to me by Down syndrome SA. I have only worked with him on his words a few times, but he already has ten sight words memorised after only showing them to him once. He really is a little sponge who loves to learn. I can't wait to keep adding words. Hopefully he will continue to enjoy reading them, and will have a long list of words prior to starting school this time next year.

Painting at kindy is hard work!

Felix's vocabulary is still limited, but it has grown a lot since he has been at kindy. He is becoming clearer with his words and is initiating conversation with the words he does have. This morning when I went into his room he said (and signed) "Good morning". He then went over to his cupboard and said, "nappy", because he knows that's what we do first thing. While I was making his breakfast, he told me he needed his "bowl, spoon, mins (vitamins)", and told me the porridge was "hot" when I got it out of the microwave. When we drive Aaron to the bus stop in the mornings, Felix now says "Aaron, bus, school".

In the afternoons he tells me "rest, ipad" because he wants to take his ipad into his room so he can have a little rest. Recently, after being in Adelaide for another surgery, Felix spoke to his Granny on the phone. He said "Deb, Darren, Cate, Daniel, happy, sad, baby, crying" What he was communicating, was that he had seen all four of those people. He had felt happy, but a bit sad when he was in hospital, and there was a baby on the ward who was crying (he was a bit upset about that at the time, so it must have been memorable to him).
Recovering from general anaesthetic #6

Communication is such an important part of life and, although speech isn't the only way to communicate, it certainly helps. Knowing some of Felix's thoughts and feelings now, through speech, is quite incredible and makes me so emotional.


When I break it all down, there is actually a lot of medical stuff that has gone on this year. Thankfully, there is nothing too significant, but the inconvenience of tests, hospital appointments, diet restrictions, overnight city stays etc can all become very exhausting at times, for both Felix and the rest of us.

In the past 11 months, Felix has had a sedated MRI which showed that his Ventriculomegaly is stable, which is awesome. He has had two surgeries for grommets, his adenoids and tonsils out and, most recently, the poor little guy had a circumcision.
4th birthday

In addition to his surgeries, he has had to do four hydrogen breath tests to check for any intolerances to lactose, lactulose, sucrose or fructose. These required him to fast for long periods of time, and to have a restricted diet. Unfortunately one of the tests really upset his stomach and made his day (and mine) pretty miserable. There were lots of baths to be had (we were both covered....twice!)  We have an appointment with the Gastroenterologist in a week to get the results, and to see where we go from here. He may just need some blood work done, or it could be as nasty as a bowel biopsy. Hopefully it will be something simple and we can start working on getting his belly sorted out.

After speaking to someone, with a lot of experience with kids with Down syndrome, I have been told we need to push to find out what is happening with the hearing in Felix's left ear. She was annoyed to know that the Audiologist dismissed Felix's lack of hearing so quickly with a, "Well he has 100% hearing out of one ear so that will be enough for speech development and cognition". As she pointed out, that would never be 'good enough' for a typically developing child, and we need to push for a hearing aid for that ear if the next test comes back with the same result. It's sometimes so easy to feel intimidated by Doctors and specialists because they are the 'expert'. I need to keep reminding myself that, as Felix's Mum, I am the expert on Felix and I need to fight for what he needs. It was a good kick up the butt for me!
The London bus. Felix and his friend Liam are in the window
at the top with the balloons

Felix had his tear ducts probed when he was about 2 years old. He had always had gunky, watery eyes and the probe worked beautifully with the results being immediate. Unfortunately in the past two weeks, the gunkiness has returned. I actually took him to the GP for eye swabs because I thought he might have got conjunctivitis from kindy, but the results were negative. I have a feeling another tear duct probe might be in the future too.

Fun stuff-

There are always adventures to be had with Felix! He had a wonderful fourth birthday party a couple of months ago. He had lots of friends travel long distances to celebrate his number themed birthday party. There was lots to eat, painting and playdough, water play and bubbles, and of course playing with the sheep and the chickens. He had the best day! We are thankful to everyone who came to celebrate with us.
With the money he got from his sheep's fleece

Only a few weeks ago, Felix (and I) had the honour of being in the Adelaide Christmas pageant on the London bus! It was always a childhood dream of mine to be in the pageant, so to have this opportunity really was a once in a lifetime chance for both of us. Nine other gorgeous kids, with Down syndrome, and their parents also got to ride the bus. It was an amazing experience. My friend and I had tears in our eyes, as our two handsome little boys waved and smiled at the crowd as we drove along. We even got the chance to see Father Christmas arrive in Adelaide at the end of the pageant! Felix is still talking about the "red bus". I don't think he will be forgetting it in a hurry!

The Christmas craziness has begun with a whole bunch of extra stuff to add to my crazy schedule. During the madness, I'm so thankful to have Felix. He keeps me grounded and always reminds me that life doesn't have to be frantic all the time. He still makes me stop to smell those roses!!

Saturday, 25 October 2014

Country Parenting a Child With Down Syndrome

Recently I was asked to do a guest blog for a lovely Mum who is also blessed with a very handsome little man with Down syndrome. She suggested I write about my experiences with country parenting a child with Down syndrome.  I thought I would share what I wrote here as well, since it's been ages since I updated my blog. If you would like to head over to Annie's facebook page and follow the links to her blog, the address is https://www.facebook.com/Mummalove.blog

Country Parenting a child with Down syndrome

I am a 43 year year old Mum from rural South Australia. I have had 9 children, and am Granny to 2 beautiful Grandchildren. A couple of months before my 40th birthday, I gave birth to a little guy, Felix, who has changed my life in the most incredible way. We found out at 19 weeks pregnant that Felix had an absent nasal bone; a fairly strong indicator for Down syndrome. Coupled with another few 'soft markers', including my age, our medical team were pretty convinced. We opted not to have any further testing, but studied up on Down syndrome to prepare for the birth of our son who, I might add, we had just fallen even more in love with.

At 36 weeks pregnant, my waters broke and I was flown, by the Royal Flying Doctor Service, to the city to deliver our much anticipated little boy. He was born, as expected, with those incredible almond shaped eyes, a single crease on his palm and a big gap between his toes. He had Down syndrome, and he was absolutely perfect. He only needed a couple of days in the special care unit with a NG tube for feeds, before he was strong enough to breastfeed properly and could come home on day 4. He has been charming the world ever since!

Country parenting, when you have a child with Down syndrome, provides some challenges. You need to enjoy driving long distances, have a reliable car, and a bottomless tank of petrol! Services are not at your doorstep, and it often requires having to go out of your way to access therapies, medical assistance and early intervention.

When Felix was born, we were living in a large regional country centre, four hours drive from Adelaide in South Australia. Although there weren't as many services available as there are in the city, we were lucky to have a Paediatrician who travelled regularly to the area, a team of therapists (although they changed often), a wonderful playgroup for children with special needs, a fantastic GP and a hospital emergency room for all those middle of the night croup attacks. We still had to travel to the city for specialist appointments and surgeries, but we are lucky because Felix hasn't had any life threatening health challenges.

A few months before Felix's 3rd birthday, we moved to a tiny little farming town 2 1/2 hours from Adelaide. The nearest hospital is 40km away, as is the nearest GP and Felix's Physiotherapist. Our Paediatrician is 100km away, and so is Riding for the Disabled, where Felix does horse riding. Finding therapists has been incredibly difficult, so we have resorted to driving really long distances to access quality services for Felix. This can be exhausting at times. There are often weeks when I'm in the car more than out of it. However, when I look at the way Felix is developing so beautifully, and I see the benefits of the early intervention he has received, I am so thankful and I know that all that driving has been worth it!

The pay off to country living is, of course, the lifestyle and all the learning and discovering that comes with it. Everyone in our tiny little community has embraced Felix and love spending time with him. He has been invited out to farms to watch the sheep shearing, and been driven around to see all the animals. He has patted alpacas, pigs, goats, cows, horses and sheep. He has had rides on huge pieces of farm machinery, motorbikes and go-karts. He regularly splashes in puddles and plays in the mud. He was even given a pet lamb for his 3rd birthday last year! Collecting the eggs from our chickens is one of his favourite things to do. He has learnt to be gentle with the eggs... after a bit of trial and error. There are always different places to explore, which is perfect for a boy who loves being outside. Felix is a bit of a local celebrity. Being such a small place, everyone knows him and goes out of their way to say hello. Felix always obliges with a smile and a wave. I wouldn't swap our lifestyle for anything in the world!

Things may change as Felix gets older. There may come a time when, being closer to the city, might suit Felix better. He may want to socialise on a regular basis with other kids who have Down syndrome. It will really depend on what is important to Felix and what will make him the most happy and content in his life. For the time being, country living suits him perfectly. He is happiest when he is wearing his gumboots and throwing out grain to the chooks....and I'm at my happiest watching him!

Saturday, 30 August 2014

Kindy Fun

First day at Kindy
Well so much for easing Felix slowly into Kindy! He has taken to it like a duck to water and is already doing two full days a week! That was unexpected!!

Felix's first day of Kindy was an emotional one for me. I felt like after almost 4 years of being together, day in and day out, with intensive therapies, hospital stays and crazy amounts of play time, I was losing my little buddy. Having Felix around me constantly had become the norm, and the thought of dropping him off at Kindy and driving home without him seemed like an alien concept. There were also the worries that any parent, of a kid who needs a bit of extra help, has. Will he adjust to the new environment? Will they understand him? Will the other bigger kids be too rough with him? My mind was going a mile a minute!
Got his bag...ready to go

When we walked into the Kindy the first thing that hit me was that the kids were HUGE! Felix is a tiny 90cm tall and only weighs 12kg. He's probably the size of an average 2 year old. These kids were typical sized 4 year olds and towered over our little guy. Felix played coy for a little while, especially with all the excitement and noise inside the centre, but as soon as he saw the door to the playground open he walked away from us and straight outside. Once he was happily playing, we left him there for the next few hours. I didn't cry until we got back. As soon as I saw him content and happy, playing just like all the other kids I had to brush away the tears. He just looked so comfortable, covered in paint, with a big smile on his face. It was one of those moments I will cherish forever. As soon as he saw us standing there watching him he beamed the biggest grin ever. He rushed over to us and grabbed one of each of our legs and looked up, so excited to see us. After a quick leg hug, he went back over to what he was playing with which confirmed how settled he was.

Loving the Kindy playground
For the next 3 Kindy sessions we left him for 3-4 hours, but from week 3 onwards, he has been there for the two full days and is coping beautifully. The staff have told us that he is doing really well. He loves playing outside, doing crafts, and he paints lots and lots of pictures. They have also said he is cheeky and has a good sense of humour. He loves spending time gazing at himself in the mirror in the bathroom, and he has an eye for the pretty girls (volunteers at the kindy). Sounds like our boy!! The entire staff at the Kindy have been amazing. They have been so welcoming to Felix (and us), and always take the time to fill us in on his day when we arrive to pick him up. We feel so thankful! Did I mention they also love the hugs? :)
Dress ups for Kindy book week

The other kids are doting on Felix and he is always greeted by them when we arrive. The Kindy teachers have been teaching the children a few basic signs. How sweet to see Felix laying on the carpet one morning, and one of the little girls lay down beside him, face to face, and sign "Good morning" to him. Adorable!! A few of the kids have been coming up to us at the end of the day and telling us that Felix is their friend and they like playing with him. It makes me feel so warm inside to see how children that age do not discriminate. They have no pre-conceived ideas, but just see Felix as another friend to play with. Such a pity that changes in a lot of people as they grow! I also love the honesty and curiosity of kids Felix's age. One child said to me, "Why doesn't he talk?" I explained that he can't learn to talk quite as quickly as her, so he uses his hands to talk instead. She thought that was really cool and, this week, her Mum told me that she is teaching her little brother how to sign!!  Aren't kids wonderful?

In other Felix news.... We have even more speech/communication, which is super exciting. This morning I told Felix we were going horse riding. His response? "Piper...Yay!" (His horse's name is Piper). Yesterday, Felix found a picture of a tub of yoghurt in one of his sign language books. He walked up to the fridge, held up the page in his book and said, "gurt, gurt" and signed "please". He obviously really wanted yoghurt!! In my last blog I mentioned that Felix can read the alphabet... now he can say it all the way through without actually looking at any letters, which is pretty cool. When Felix and I were in the car this week, I heard him spell S-P-O-R-T-S. Looking out of my window, I saw that we were stopped next to a sport's store.

All of these things are HUGE to us. Speech is something that is coming along slowly so we celebrate every new word, and get extra excited when there are a couple of words together. Felix is attempting to say more every day and we are understanding more as well. It's a team effort. When Felix communicates something to us and we respond correctly because we understand him, he looks so satisfied and it's a great feeling. I can't 
wait to see what the coming weeks bring.

Saturday, 19 July 2014

A Time For Reflection

More time has ticked by without me updating my blog. It seems the days go faster and faster as Felix gets older. 
All grown up

Sign language cards for kindy
I have felt really emotional over the past couple of days as I've been preparing for Felix to start Kindergarten in two days time. It really does only seem like yesterday that he was a tiny, completely dependent little baby, yet, here he is almost four years old and about to start a new phase in his life. Felix has never gone to child care, so this will be the first time he has been left, with a group of other children and not a babysitter. I will be honest and say I feel really nervous, although I'm confident that our little superstar will do really well (while I sob into a giant box of tissues).

Full time Kindy is two full days per week, but the Kindy Director has suggested easing Felix in gently until he's completely comfortable there. We are going to start with a couple of hours at a time. If he seems really settled, they will call us and we can leave him there longer. I'm sure it won't be too long before we can leave him there for the day. At this stage, Felix will not have any additional help, in the form of a support worker. The Kindy is confident that they will be able to manage without the extra help. Felix is a pretty easy going little guy so, hopefully that will be the case.

Waking up from surgery
A few weeks ago, Felix went into hospital to have his tonsils and adenoids out, as well as a good clean out of his ears and a new grommet for his left ear. The Audiologist could not get a response from Felix's left ear, when he had his hearing test recently, and suggested he may not be able to hear from that ear. Hopefully after getting rid of all the wax and replacing the grommet, his next test will be better. 

The surgery went really well, but we weren't prepared for the long recovery time. Felix had to stay overnight in hospital and then we had to stay in the city for a week post-surgery in case of a bleed from his tonsil surgery (we live too far away from a major hospital). Poor Felix didn't pick up as quickly as we thought he would and ended up needing stronger pain relief over an extended period of time. Four days after the surgery he started running a fever which lasted a couple of days. He was really miserable. On day seven, we packed up the car ready for our drive home, and I noticed blood on Felix's pillow. When we called the hospital, we were told to bring him straight in. He was readmitted, and put on IV antibiotics for an infection. After an uneventful night in hospital, he was discharged. The Surgeon didn't want us coming home but, after a week with hardly any sleep, I begged him to let us leave and he reluctantly did.
Too cute!

Felix still needed regular pain relief for another 4-5 days when we got home and he was on antibiotics. Just when we thought he was almost better, he came down with a really awful cold. He had low-grade fevers in the evenings and even vomited once. Poor kid! He had more Panadol and Neurofen in that 3 week period than he has ever had in his life! Thankfully, at the end of week three, Felix is back to his normal self; eating like a horse and into everything! The great news is that, since the surgery, Felix is sleeping much more soundly and not having periods of apnoea AND he isn't snoring!! As much as it wasn't the most pleasant thing to watch him go through, the results have been good, so it was worth it!

So, what has Boy-Genius been up to? I've mentioned before about Felix's love for numbers. He still loves to count anything and everything, and is still working on numbers
11-20. He's definitely got the 'een' part down on thirt(een), fourt(een) etc, and it sounds pretty cute as he repeats "een" with enthusiasm. He can recognise all of his colours if we ask "Point to the brown one...green one" etc and can say a few colours too, and he has an amazing knowledge of shapes, including rectangles, crescents, hexagon etc. The biggest surprise for us, is that Felix has taught himself the alphabet and can say all the letters. Considering he still has limited speech, that is really exciting! He uses a mixture of proper names and phonetic sounds for the alphabet. For example he says A (ay), but says Z (zzz), although in recent days, I have noticed him saying both the proper name and the phonetic sound for most of his letters. All of these sounds are pre-reading skills so we're really pleased that he is showing so much interest in letters. Felix's speech is coming along slowly but surely. His vocabulary is expanding and his speech has become a lot clearer. I just love his little voice!

For a long time, Felix's Paediatrician has had concerns over his slow weight gain. Now, I'm not a fanatic when it comes to supplements but try to give Felix a healthy diet and lots of 'brain food'. However I heard, through a T21 parent's group, that there was a multivitamin available specific to people with Down syndrome. Some of the parents spoke about weight gain and growth in height, so I thought we would give it a go. It may be coincidence but, within a month, Felix had put on 1kg in weight and had grown 2cm. I couldn't believe it! He has finally reached 12kg, 3 months before turning four years old. I think we'll keep up with the vitamins and see if they also help to boost his immune system against all the Kindy bugs! 
Cheeky boy!

The next few months are going to be different and I'm really going to try hard to embrace the changes. There was a point in our lives (during my pregnancy), when we wondered if Felix would ever be able to do the things that other children his age can do. Now, we can proudly say that he is holding his own with his peers, and excelling in some areas. Now is the time to let go, and give him the opportunity to grow and develop even more. Think of me over the next few weeks as I cut the apron strings......

Friday, 9 May 2014

Growing Up

The kids have just gone back to school for term 2 of the school year. In just over ten week's time, Felix
Doing a tour of an old prison...fun exploring!
will be starting full time Kindergarten. I am feeling the whole gammet of emotions; excited that our little miracle boy is growing up and ready to explore life outside of his family, and terrified that he might be upset or not cope (or is that me I'm talking about)? The staff at the Kindy have been wonderful. They have encouraged us to stop in for visits to get Felix used to the centre. Last Friday morning Felix and I went for a quick visit. As usual, Felix clung on to me at the first sight of other children, but settled quickly. We arrived at Kindy right on rest time. We went into the 'quiet room' and all the children were laying down listening to some music. Felix snuggled in to me, but I pointed to the others and told him it was time to lay down for a rest. To my surprise, and delight, Felix lay down on his tummy, just like the other kids, and stayed that way until he was told to sit up again. He's a fast learner, our boy!

Cuddles with a little lamb
His counting has continued to come on in leaps and bounds, and the speech to go with it. He is speaking the numbers much more clearly and is attempting numbers 11-20 now. Most end with "een", but we're getting there. Recently, I thought I should probably do some work with Felix on colours, so I asked him to pass me the blue block....which he did. Beginners luck maybe? Then I asked him to pass me the yellow block, which he did; then the red block, and the green! I realised, fairly quickly, that he already has a good grasp of his basic colours, and can say the word "green". He's always full of surprises.

Felix has a favourite jigsaw puzzle, which has numbers 1-10 as well as some shapes; a circle, square, triangle, heart and a star. He loves to play a game where he sits down and we ask him "Where is the four?" or "Can you pass me the circle?" I'm pretty sure he could do the puzzle blindfolded! I'm really excited that he is starting to say the words circle "ool", triangle, also "ool", square "air", heart "are" and star "dar". If he spoke the word "air" to me any other time, I probably wouldn't know what he was telling me, but in the context of the puzzle, I know exactly what he's saying, as he places the square in the correct spot.

My inspiration
Because Felix's speech is delayed, it is another reminder to me to be attentive to Felix when he is talking to me. I really need to take the time to listen carefully to him. Often times I am pleasantly surprised to discover he is actually speaking a word to me and not just making a sound. He must get so impatient with us sometimes, when he is using a word quite clearly, but we haven't tuned in our ears to hear him properly. Listening to Felix talk is a little bit like listening to someone with a different accent to your own. Once you are accustomed to the accent, it makes it much easier to know what is being said.

Hanging out with some new Mums and their babies
During the school holidays, Felix got to spend the best part of a day on a nearby farm. He met huge mobs of sheep and some goats; sometimes standing right in the middle of the paddock and helping to feed them. He saw dozens of brand new lambs, some only a day old. He got to ride in a tractor, on a go-kart and a motorbike. The smile on his face, as he whizzed past on the motorbike, was priceless. He had the biggest grin. When the motorbike slowed down, he signed 'again, again' until it sped back up again. The farm dogs loved Felix, and he gave them big cuddles. It was such a wonderful opportunity for Felix to experience being out on a farm. We have dogs, cats, a sheep and some chickens, but to see all the animals on such a large scale was so much fun for him.
Taking joy in the little things

As the days go by, I still fall more and more in love with our little guy. He never fails to delight me, to make me smile or to warm my heart so much it feels like bursting. I can't get enough of watching his love for learning, and his excitement for life. He continues to be my inspiration!

Saturday, 8 March 2014

Counting 1, 2 ,3

Felix with the chooks
At the beginning of our 'Down syndrome' journey, the unknown was a bit daunting. Felix's diagnosis in itself didn't bother me, but I often got ahead of myself and worried about him being teased at school, or where he was going to live and work when he was older. I also had preconceived ideas that parenting Felix was going to be completely different from parenting our other kids. I expected his development to be slow; really slow. Due to his dual diagnosis of Down syndrome and Hydrocephalus/Ventriculomegaly, there was talk of surgeries, a shunt in his brain, wheelchairs and complete and utter dependence on us for all of his basic needs. There was also talk of death. "Prepare yourselves, because this is NOT going to end happily" was what we were told by the Obstetrician.

No hands!
Fast forward 3 1/2 years. Tonight, Felix fed himself his dinner which he promptly ate up and then signed and spoke the word "more". After his second helping, he put his plate on the cupboard and signed "bath". He's had a long day horse riding at Riding for the Disabled, and then playing with the chickens at home and collecting the eggs, so he was ready to get clean. We went into the bathroom and I started running the water. Felix got his liquid bath soap out of the cupboard, squeezed some in the water and then put it back neatly in the cupboard. He managed to get his jeans off nearly the whole way by himself, and then I helped him with his shirt. Once he was in the bath he signed for his toy fish and motioned to the other toys he wanted to play with. I told him the body parts he needed to wash and he correctly identified all of them and washed them. This is the little boy I had previously had so many concerns about.... he has completely squashed all the worries I had about his development. Yes, he learns things more slowly, but certainly not as slowly as I had thought. His mind and body are constantly active, wanting to learn and do new things. He is full of life and I have learnt to live in the NOW and not get ahead of myself!

The most exciting moment of Felix's development, over the last month, was when I realised he could recognise every number from one to ten, even out of order. Equally exciting was the fact that he could speak (not sign) each of those numbers as well! One (uh), two (oo), three (ee), four (pour), five (pibe), six (ks), seven (un), eight (ayt), nine (noin), ten (den...always shouted for effect!). Over the past few weeks the words are becoming clearer and clearer. His favourite game, at the moment, is for us to write random numbers on a piece of paper and for him to say them. He gets them right 100% of the time. We can't even trick him with a 6 and a 9!! We've always spent a lot of time counting things with Felix, but have never actually pointed to the numbers. We're guessing he has learnt to recognise them from the counting apps he has on his ipad. I have put up some beautiful, bright number posters in his room since realising his love for numbers. We often wake up to a little voice, through the wall, counting very loudly in his room!

The funniest moment of the last month happened in the chicken coop. Felix was copying the chickens, bobbing his head up and down and scratching the ground with his foot. He looked hilarious! Even funnier was when he watched the chooks pecking the ground. Before I could stop him, he had bent over and pecked the ground with his mouth...what's good for the chickens must be good enough for him, right? His face said it all; he promptly stood back up with his tongue out, covered in dirt! He didn't look very impressed. I'm guessing he'll leave the pellets to the chooks next time!! Hahaha!
Story time for sock cat

We have recently started some more regular speech therapy with Felix. We have found an amazing therapist who Felix responds to really well. She said that Felix is consistantly using sounds for certain things, showing a good indication that his speech is coming along really well. He is starting to mimic a lot more sounds and copy simple sounds we make. The great thing about his therapist is that she corrects things that we, as parents, are doing and shows us different ways to encourage communication from Felix. Not that what we're doing is necessarily wrong, but it may not be as helpful as doing it a different way. It's amazing the little things we do or say, without even realising it. Having a third party watch how we interact with Felix
is really helpful.
Dressed up in Daddy's boots

Hydrotherapy is going really well. In fact, Felix is so relaxed in the water now that he sometimes likes to
just lay on his back and float. Last week I thought he was going to go to sleep! His kicking is coming along
slowly but surely. He will often only kick one leg at a time (while holding his thigh with one hand) but hasn't quite got a grasp on alternating his legs yet. He is amazing at balancing on a foam board in the water and is able to stand for a while, unaided, without falling over. I'm so proud of the way he follows instructions and nearly always does what his therapist asks him to do. On days when he is in 'a mood', he will try to do his own thing but, with some encouragement, usually gets back to what he's meant to be doing. He's a bit stubborn sometimes!

Medically, we are happy to report that Felix won't be needing hernia surgery. We have recently seen the surgeon and he is confident the bulge in Felix's groin is not a hernia, which is great! We also saw the Ear, Nose and Throat specialist and Felix's xray has shown that his adenoids are really enlarged. He will be having surgery in the next few months to remove his adenoids, tonsils, and to replace the tubes in his ears if necessary. His ears build up such huge amounts of wax, it's almost impossible for the ENT to see in his ears clearly, so they will give them a good clean out while he's under anaesthetic as well. We have noticed, recently, that Felix has short periods of apnoea when he sleeps. He stops breathing every so often, and then starts up again. He has also been snoring. We're hoping the surgery will correct both the snoring and the apnoea.
Lub oo Mum, even when I'm grumpy!

Tonight, as I tucked our little man into bed, I was once again overcome with wonder at our little miracle. Hearing him say, "Lub oo Mum" and signing 'Love you' when I say goodnight melts me every time.

Friday, 31 January 2014

Little Shadow

Loving the playground
I am just totally in love with our little man today. I mean, I always love him, but some days I just stare at him and think I must have done something right to be given such a beautiful gift. He hasn't even been particularly adorable today; he's been a bit naughty and grumpy, but I'm just in awe of him!

Felix has become my little shadow recently. He likes to watch what I am doing and then copy me, which is great fun! He's showing so much interest, that I am making an effort to include him in as many things as I can. Tonight, I was going to be slicing mushrooms for dinner so, before I started, I got a butter knife out for Felix and brought a stool in to the kitchen so he could help me. Straight away, he climbed from the stool up onto the bench, rather than sit on it (he obviously had different ideas to me). He watched me carefully as I started slicing the mushrooms, and then started cutting his own. It took him a little while to work out how to hold the knife so it worked effectively for him, but by the end he had managed to slice up his mushroom into little pieces. He was concentrating so hard, and looked really pleased at the end result! He did a great job.

He has become a lot more aware of what he is/isn't allowed to touch in the kitchen, and we have actually taken the baby gate down because he has been doing so well. If he sees me put the kettle on, or if he goes near the oven, he says (and signs) "hot (ot)". He hangs the teatowels on the oven door, and puts his rubbish in the bin. I have shown him which drawer he is allowed to play in; it has wooden spoons, plastic utensils etc inside. If he tries to open any of the others, or opens the cupboards, I ask him nicely to close them, and 9 times out of 10, he shuts them straight away. Gone are the days of having a little whirlwind in the kitchen, pulling out everything out in sight.
So much concentration

Felix has always loved music and, over the past couple of years, has learnt to do some actions to songs, through repetition. We have always done 'twinkle, twinkle, little star' and similar nursery rhymes, plus some Wiggles songs etc. By seeing them over and over again, he has been able to do them quite well. However, I remember wondering, months ago, when Felix would spontaneously copy actions he saw on kids shows on TV without having to watch them many times.... my guess was 6 or 7 years old. Well...as usual, Felix is throwing all of my preconceptions out of the window. Over the last couple of weeks, he is like a little mirror. If there are actions to a song on Play School or Yo Gabba Gabba, he copies them with great enthusiasm. He is a delight to watch, and we often catch ourselves just staring at him with HUGE grins on our faces.
Those eyes....

Our little man is becoming more and more stubborn and independent, which we're actually really happy about. It means that he is showing his determination to learn to do things for himself, without our help. Although his speech is still developing, he makes it very clear to us if he wants to do something himself, usually by pushing us away. The funniest thing is when he wants us to listen to him... he SHOUTS! He doesn't say a polite "Mum", he yells "MUM, MUM", usually if he is doing something he wants us to watch. His big eyes get wider and wider, and then we're rewarded with his huge grin when we stop what we're doing to watch him. The most exciting thing Felix has done this week is completely eat two of his dinner time meals with a spoon or fork all by himself. It has taken him a really long time to get his coordination right, and to get the spoon to his mouth without the food falling off, but he has made so much progress. We're so proud of him!

That smile still melts me
In the past couple of days, we have started Felix on a gluten free diet and will be keeping his lactose intake to a minimum. We have been trying for some time, to get his bowel issues sorted out. He has had the big ones' like Coeliacs and Hirschprungs ruled out, but there is definitely something that upsets his digestive system. Using probiotics in his food has improved it slightly, but now we're going to investigate things in his diet, starting with gluten. We already know that too much lactose makes him vomit, but he seems to be able to cope with a small amount. It doesn't mean a huge change for Felix as he eats predominantly rice/corn products anyway, but we're hoping to see an improvement. Felix loves eating, so as long as he's still getting food, he's not going to care too much what it is!

The new school term has just begun, which means my frantic schedule of appointments and therapies with Felix is about to begin again. I'm looking forward to watching Felix's development over the next couple of months, and I'm sure we'll have lots of fun along the way!

Thursday, 9 January 2014

A Belated Christmas Update

Santa Number 1 (same photo as my last blog)
The best news I have to share in this blog, is the results of Felix's last MRI scan. I am very pleased to report that the size of his ventricles hasn't changed since his last scan almost two years ago. He still has Ventriculomegaly, but it is stable which is wonderful news. The Neurosurgeon is confident that Felix won't require any more MRI scans. Obviously we have to look for any signs of regression, head circumference increase or lack of development, but we are all pretty sure that everything is going to be fine from now on!

Felix was kept busy over the Christmas period, with lots of parties and three visits to Santa. Our local playgroup visited the 'Magic Cave' at one of the towns near where we live. The cave is located down some stairs and is basically a couple of rooms filled with Christmas ornaments, decorations and, of course, the bearded man himself. Felix was onto it straight away and flatly refused to walk down the stairs. I'm sure he can smell Santa a mile away. Nathan and I managed to wrangle Felix as close to Santa as we could, but there was no way he was going to sit on his lap!
Santa Number 2

Santa number two is a friend of ours. After seeing the very unenthusiastic photos with Santa number one, he vowed to make every effort for Felix's next visit with Santa to be a happier one. The second Santa experience was at the Down syndrome early intervention party. There was a crowd of beautiful little faces there that day and a lot of noise and excitement. After some singing and playing, Santa came in dancing to the music. Felix clung onto me a little bit tighter, but relaxed when Santa came over to give him a 'high five'. After several more 'high fives' and after watching the other kids go up and receive their gift from Santa, it was Felix's turn. He actually sat on his knee... only very briefly, but he sat there!! I was amazed! Thanks for all your hard work Santa! ;)

A few days before Christmas our little town had a Christmas party for all the locals. It was pouring with rain but quite warm, so Felix was enjoying running around and playing. Santa number three arrived on an SES (State Emergency Service) truck. Felix saw him from a distance and didn't seem to be worried at all. He was more interested in playing on the playground. Once Santa had sat down I carried Felix over to him to see what his reaction would be. He seemed to be quite comfortable, so I sat him on Santa's lap. For the very first time he sat, unbothered, and I was even able to walk away to take a few photos! OK... so he was far from giving me a huge cheshire cat grin, but it was the closest we were going to get for 2013! There is always next year!
Santa Number 4

The days leading up to Christmas brought with them an awful 'flu to our house. Felix and I were struck down pretty hard, with Felix coming close to needing some IV fluids due to dehydration. I spent my days in a fog, trying to prepare for Christmas day and the extra 8 people we had coming to stay. I'm not exactly sure how, but everything got done and we were able to enjoy a very relaxed Christmas day with our sons, their partners and our Grandaughter (one of our boys has a girlfriend who has a little girl. I enjoyed fussing over a 'pink' baby after all our 'blue' ones. She's a lovely addition to our family). I'm so thankful for our kids. They all pitched in and helped, and Felix was in his element having all of his brothers at home. He looked a bit lost when they all left again after Christmas.

Enjoying his new dress ups on
Christmas day!
I hope you have all had a good start to the new year. Ours has been a little bit shaky, with illness and a few other little bumps in the road, but I'm trying to stay positive. I'm currently enjoying having a break from therapies and appointments due to the school holidays, and working up some energy before it all starts again. There's a lot we are able to do with Felix at home to encourage his development through play, so there is always plenty to keep us busy even without his structured therapy. He has been counting anything and everything lately. Even though his speech is still developing, we can definitely hear a "four, five, six" quite often, which is so encouraging. My goal for the next few months is to start working more on colour recognition too.

Happy new year to you all. I apologise that the frequency of my posts has dropped off significantly this past six months. I will try to get back to more regular blogs over the coming weeks!