August 2013 Updates:

More News from Hahgoot

At school Hahgoot had a “Jeans for Genes” fundraiser day. She was one of only two kids in the whole school who

remembered to come in Jeans to school that day!

As Hahgoot summed it up: “It was weird and embarrassing to be the only one actually doing the right thing...”

Yes, it was certainly a confusing day...

Hahgoot lost another tooth – and this time really lost it... As it fell at school

she wrapped it up in a tissue and packed it (as we discussed at home) but

she decided to put it in her lunchbox and didn’t tell me so I accidentally threw

it out with all the leftovers...Luckily, the tooth fairy found her letter of

explanation and still left a gold coin...

If you remember from an earlier presentation, Hahgoot was sick with a fever during Adrian’s

birthday party. The next morning she started crying when she was standing at the sink to brush her teeth as her legs ached so much she couldn’t

stand. She still had a fever so I kept her home for a “sick-in-bed” day and hoped it was just flu like body

aches. Well, it wasn’t...

Hahgoot couldn’t stand or walk for three days!She wasn’t paralysed but had bad pains if she put any weight or pressure on her legs. She spent nearly three

days in bed or in front of the TV downstairs. I tried warming her legs with a hot water bottle (bottom), massage (she didn’t like the touch) and rest. Barak had to stay home from work and help carry her to the doctor, who did his best to not freak out (like we were trying to).

We all decided after some research that it was a complication from the fever and should subside when

the illness goes away.

Luckily, we were right...

It wasn’t easy – I had to ask Hanna to pop over and mind Hahgoot when I had to go drop Alma off at day care.

After about two days the fever went down and the flu cleared off, but took us another day to encourage Hahgoot to start walking again as her brain crystallized around the

idea that she’ll have pain if she stood up.

We had some mood swings and some meltdowns this month....

And we kept going to Blaxland on the train every two weeks for OT.

One time we took the early train by mistake so had an hour to kill. Blaxland’s main road has about 4

shops, so there wasn’t much to do there early in the morning... Hahgoot was lucky to get a Danish snail

and a giant babycino!

While waiting for the OT session to start, Hahgoot made an artist studio with lake from LEGO... Interesting design!

We are trying a new method to keep

Hahgoot focused on her work, called

“The purple zone”. Nice idea, worked

about twice as long as it was a novelty... You can count on me to find interesting graffiti,

even in sleepy Blaxland...

Hahgoot LOVES the Thera-pattie which is a great way to strengthen her

muscles and keep her calm.

Alma of course needs to try the therapeutic play dough as well...

Bec made a detailed Morning Routine Chart with Hahgoot. The nice part about it, in my eyes, was the ability to take out each task card and carry it with you (to the toilet for example) so you don’t forget why you went there in the first place... Which is a common problem with Hahgoot with such complex procedures. What Hahgoot liked was the computer program for colouring the images... She used the chart about twice, but that’s OK,

there has been a general change for the better with this tiresome routine anyway.

I bought Hahgoot a diary with a musical magnetic lock. At first she was worried about using it (it isn’t loud, but she got stressed anyway) but when she heard the nice music

she really liked the diary and the lock.

Hahgoot showed Alma how to open the diary and then was very generous to let her write in it too, which lovely.

Hahgoot’s not precious about her privacy with the diary.

Her first entry was about her embarrassing “Jeans for Genes” day...

Hahgoot started lessons with a new swimming instructor, Amy, on

Sundays, and things started off OK. She is not negative about jumping in the water but she doesn’t jump, it is

more like falling...

In our next presentation:

Art Attack class in action!