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!!