Daisy

New Zealand, September 2003

Daisy was born on 30 September 2003, 8-10 weeks premature. She was diagnosed with Cri du Chat recently at one year old. The moment she was born and she cried her first cry I remember saying ‘she sounds just like a kitten’.

Daisy rolled back to front at 3 months old. At about 5 months we were starting to wonder about her development rate as she didn’t progress from there. Her paediatrician queried cerebral palsy, but after blood tests we finally had the diagnosis just after her first birthday.

Daisy is a beautiful, happy baby, with a real personality. She still rolls back to front, and occasionally front to back but gets her arm stuck under her and can free it now and then. She usually gets stuck on her tummy and cries or whinges until someone comes to pick her up. She can’t push herself up on her arms. She sits with support, but throws herself back when left unaided. She shakes and hits her head a lot, pinches and scratches herself a bit too.

Always taps her feet on the ground, always needs to be moving. Squirms a lot. She tends to become quite frustrated that she cannot move around and then she whinges for someone to entertain her. Also she’s not really a good sleeper which will probably change in time as she’s only one, I hope.

She only tolerates pureed food, lumps cause her to gag. And she’s just started holding her own bottle. Daisy had reflux which was quite well controlled with Gaviscon which she recently came off and is doing well. She has constant ear infections and is on the waiting list for grommets. Every cold and bug around is picked up. She throws up a lot when she has just an ordinary cold. A cold causes her to become quite sick.

Daisy recently started an early intervention centre called the Champion centre. They have an OT, physiotherapist and speech and language therapist. Daisy goes once a week for an hour. They’re really great. She also goes swimming now and then, she loves the water.

I have found this site really informative, and it’s great to hear from other parents with children who have Cri du Chat.

Update on Daisy November 2006

Daisy is now 3 years old. She started crawling a few months after her 2nd birthday and in the last 7-8 months can walk with someone holding both her hands or unaided with her walking frame. She can pull to stand against furniture and climb up on the couch and get down.

Daisy understands close to 100 words and about 30+ sentences/commands. I started a game to build her vocab “where’s the…..?” and she points to things I name around the room. She learns new words quickly and is accurate every time.

She communicates with sign language, body language and a few sounds. Words starting with ‘s’ she will make an ‘ssss’ sound, ball and school are ‘oowa’ and she can say her name although not always clearly.

Yum and yuck are the only other words can say. She does try really hard to copy words but they more often than not come out ‘da’.

She continues attending the Champion Centre one morning a week for early intervention. They’ve done so much for her. For the last 6 months she has been spending one morning a week in the preschool at Van Asch Deaf School picking up sign language quite easily.

She also goes to preschool in the afternoons most days, the staff are so good with her and include her in every activity, she learns a lot from the other kids. Her favourite things include going to preschool as she loves playing and being around other children, swimming (we have hydrotherapy once a week) or anywhere she can find water, looking at books, cuddles, playing with the dog or cats, turning the TV on and off which we are trying to stop, the vacuum cleaner, cell-phones, opening drawers and cupboards and emptying them out, anything she’s not allowed, and just making a mess really. She loves music and follows along with some of the actions.

Eating is still an issue, most of her food is mashed with small lumps, rice, peas and corn with sauce are about the biggest lumps she can tolerate as she doesn’t chew at all. She likes to eat a lot despite being so skinny and is finally starting to feed herself.

Overall she is a very happy, friendly girl who waves to people with her biggest smile as we walk past them. She’s full of energy, very cheeky with a good sense of humour. A real drama queen when she is tired or doesn’t want to do something or hurts herself. We are really happy with her progress, all the help and support we’ve received is the reason she has achieved so much.