03 May 2010

We Were On...


Cathal, unfortunately, was not too happy about being there, as you can see from the clip. Every time I spoke he got even more upset ("don't tell them Mammy...DON'T TELL THEM ANYTHING!!!"). But didn't Nan P do well

Grandparents Unite!

24 April 2010

Vote For....


has been nominated for two Webby Awards, Best Documentary Series and Best Reality. You can vote for them here. Click on the appropriate category, register to vote, and click till your hearts content. If they win, the cast get to go to New York, wouldn't that make a great episode!

A message from The Specials from KADA Films on Vimeo.

18 April 2010

Hip Hip HOORAY!!!

A few days ago, Cathal's cardiologist gave him the all clear....

That's right, Cathal's heart is looking fantastic.....wohoo!!!
We were in and out of the doctors office in 5 minutes, RECORD TIME...

And guess what, our cardiologist doesn't want to see him for another year :-)

I've had a big cheesy smile on my face all week

Hip Hip HOORAY!!!

My heart? There's nothing wrong with it now,
it's as good as perfect

09 March 2010

Happy Birthday Cathal

Two years ago today (10/03/08), our little boy was born. A few hours later, he was whisked away to Crumlin Children's hospital where he was diagnosed with having a couple of major heart conditions.

A brand new Cathal

One year ago today (10/03/09), Cathal was in ICU just 24 hours after having his big heart surgery, and things were looking a bit hairy. We did not know if he would make it through the night.

About 4 weeks after surgery

Today (10/03/10), I am glad to report that it is Cathal's birthday...HORRAY!!!! He's a big boy now, and full of big boy ideas, tantrums and laughs.

He is here, he is healthy, and he is thriving. To celebrate our boy, and to start putting together some happy memories of his birthday, we decided to hold a big birthday party for Cathal last Sunday. I would firstly like to thank everyone who came, everyone who helped set up the room and clean up, and those who helped out with food, balloons and the sound system (you all know who you are).
I would also like to thank everyone who put money into the Heart Children Ireland box. Cathal already has far too many toys, and we thought that the money that is spent on birthday presents would be better used helping out other cardiac children. I know a few of you brought him a present too, and you really shouldn't have...but thank you too :-)

A grand total of 445euro & 10cent was collected on the day.....Amazing!!!!!!

And finally,
Happy Birthday Cathal

All dressed up for the party
(and ready to be an emergency page boy if the need should arise)

This party is not too bad Mammy

26 February 2010

Pour grand-père

Joyous anniversaire grand-père :-)

10 February 2010


Even though Cathal may not be doing that well on the gross motor side of things, his speech and communication in general are coming on leaps and bounds. We could not be happier with him. He is babbling away, he has lots of conversations that we can't understand and he tries to talk to other children (not to adults.....what he has to say is a big secret and is on a needs to know basis, grown ups don't need to know). The reason that we can't understand half of what he is saying, is because we are pretty sure he is babbling in Russian. The variety of sounds he is able to produce is incrediable.

Apart from babbling, he is imitating a huge amount. He can say "READY, STEADY, GO!", although, when it comes out of his mouth it usually sounds like "eeeddy, deeeddd, OUOUOUOU!". But he has the intonation and an approximation of the words, and that is the first step. He dosen't have any clear words yet, but we are getting close.
Over the last three months, using a check list that Downs Ed have published (Vocabulary Checklists and Record Sheets: Checklist 1- First 120 words), I have realised that Cathal understands about 120 words (not all of them published on the checklist, but extra ones I've had to add), he can understand and sign 70 words, he immitates 30 words and he can spontaneously say 28 words (we are usually the only ones that understand). He still cannot say any words clearly enough for others to understand. But according to Downs Ed, on average, a child with downs syndrome will be able to learn to understand and sign or say 100 words. I think we are doing pretty well here, and I have to say, when I first ran through the check list and totted up the numbers three months ago, I was very surprised as to how much Cathal actually understood. I'm very proud of my little boy.

A few things have focused us in his speech. The first was something I read very early on in his life, from various sources. Talk, Talk, Talk.....talk about everything to your baby, describe what you are doing, what they are doing, what is around them....keep chatting. Not an easy task for me, I have to say, I tend to be more direct in my language, I get to the point quickly, and once it's said, that's it. I would be "quiet" in nature. I have learned to keep talking to Cathal though, and I hope it shows.

Speech and Language therapy is also hugely important, if only to give the parent ideas and focus. Unfortunatly, there is a huge lack of S&L therapists in this country, and not every child gets what they need. We've been lucky to be able to avail of it through Cathal's services and therapy has paid off for us.

Reading a lot! We keep a stack of books by the side of the bed, and usually while I am getting ready to get up, the Dad is reading books to Cathal in our bed. We read him a bed time story every night as part of his bed time routine (at the moment, the favourites are Where the Wild Things Are, The Very Hungry Caterpillar and Aliens Love Underpants). We label pictures, ask him to point to different characters and objects. We animate the story by screaming along with the Wild Things, or dancing around excited when the Aliens find underpants. This all helps to build understanding and it makes talking and reading a lot of fun.

Recently, we both also completed the Hanen "It takes Two to Talk" course. I cannot recommend it highly enough. It above all gives the parent the tools in facilitating the child's language development by using a few simple strategies. The one thing that really stuck out for me through the 8 week course, was how I don't give Cathal enough time to respond. Now, I count to 10, and it works. We both saw a huge leap in his communication very soon after we started the course, maybe because we knew what to look for in him.

Lamh has been another invaluable tool. He is signing more and more all the time. Especially now that we have the Lamh a song DVD. He watches it about 3-4 times a week, he knows all the songs by heart, he signs his own version of the words, and for weeks I end up staring blankly at him while he pats his tummy. I had to sit down with him to watch the entire DVD to figure out that he was signing "animal" completely incorrectly!!! When he pats his tummy now, I know he wants to sing Old Mac Donald...

So he might not be able to stand up, but he can chat till the cows come home!

A little taste of Cathal signing and singing along to his favourite DVD

31 January 2010

Time For Some Updates, First Stop, Physio

Physio, physio, physio.....ahhhhh...it's hard work for a little boy, especially when he is absolutely, positively, not one tiniest little bit interested in standing.

Sure, who needs standing, he can bum shuffle with lighting speed (if you don't believe me, check this out, second video down). He can get everywhere he needs to, to cause complete and utter destruction to his surroundings. Please consider the following photographic evidence as proof:

"Time for a tea break I think!"

"The cat likes to scavenge, doesn't he?"

Rolling is not a bad method for chasing a balloon or his own version of commando crawling (I really mean dragging himself along on his belly), is very useful when your fool of a mammy puts a biscuit 6 feet away from you in an attempt to make you crawl.

For months we have been trying to get him to stand:
  • in front of the TV, watching High Five, and getting him to dance -He is sooooo over that now, and after an episode of this, mammy's patience wears very very thin......
  • in front of the full length mirror, singing a song- bored with that now too
  • against the sofa with the cat just out of reach- he'd much prefer to sit and try and lure the cat instead
So now our physiotherapist has given us a new technique, which involves both parents, a special song to sing only when he is standing (not choosen yet, anyone have an idea for a good standing song?). I hope this one works!! We also have to get him to "crawl" up the top step of the stairs, and I discovered this morning, that leaving the basket of washing just out of his reach is his motivator to do it.

He's getting too heavy, and I have this sinking feeling of dread that I will be carrying him until he goes to school....arghhhhhhh

And it's not that he can't bear weight, he just won't. His knees stay together, his hips don't splay out, he's just a big lazy bum. The laziest child ever to grace the face of the planet.

He's always been a bit behind in terms of physio, I firmly believe that his surgery and subsequent recovery played a big role in this. Only on Friday did he sit up on his own, with no help or support, from his belly. He hasn't done it since. But now I know he can do it!!!...

Actually, now that I think about it, maybe he can stand, maybe he CAN walk....he's fooling us all, he just wants to be carried everywhere, FOREVER....

I'm on to you mister, from now on, it's going to be hard work in physio all the way