Thursday, May 21, 2009


Sheena's kinder teacher arranged an assessment by the school's Occupational Therapist to assess her fine motor skills. I LOVE her get-on-with-it approach. She did not run it by us first, she just got the OT to observe Sheena in different settings for a few weeks, then she prepared a report with recommendations.

Sheena's hands have always been particularly effected by hypotonia. My little finger has more strength than her whole hands. Roy's hands have 20 times the strength of Sheena's too.

Sheena still does not persistently use a pincer grasp, sometimes she relies on a palmer grasp. Her bilateral use of her hands is still developing too, where she doesn't always use her supporting hand very well to master a task like threading where it is important to use two hands. We've got a few activities to do at home.

Homework for a 3 year old. A bit tough. She's pretty cooperative with most games at the moment - she's just keen to have company while she's doing it.

Sunday, May 10, 2009

Adoring Roy

Sheena has done well to avoid Roy's horrible virus. She adores him, and expects him to go wherever she does - not so easy when he's been so sick.

Sheena's fringe is getting way too long. When we go to trim her hair she thrashes about to the point that it is dangerous to get near her with scissors, and she refuses to wear a clip or a hair-band. I guess hair-gel will be our next option. Talk about a drama queen.

Her little tantrums are improving a lot. They are not so frequent and the intensity isn't there anymore. She seems to reliably have one just before her daytime nap, but it is quite manageable. I just ignore her and acknowledge that she is feeling upset. This seems to be working for now.

She went for a huge walk today. She walked over several steep hills along our street, and kept charging ahead without needing to go in her pusher. I was very impressed. It worries me that she is going to outgrow her pusher in the next year, but that she doesn't have the stamina that other kids her age have. She is 16 kilos all of a sudden. She was 14 kilos the beginning of the year so she's been busy piling on the weight. Her top half is size 3, but her bottom half is size 1-2 because she's shorter in the legs. I have no idea how she got up to 16 kilos because she is a poor eater to put it mildly.

She went to her cardiologist this week, and her pulmonary hypertension has cleared up since having her tonsils and adenoids removed in January. She's obviously getting more oxygen overnight now that there is less tissue in her airway. Although her tonsils were only medium in size, some people with D.S have such low muscle tone that the airway closes over even with average tonsils. A huge success.

Her creative play is coming along. We had lots of animals visiting dolly in her dolls house - but I had to lead the play. Her lack of speech makes her ability to lead more complex creative play very hard. Her receptive language is ALL there, but her expressive language is extremely limited.