Re: gae new member

[Guest guest]

hi Gae,

We live in NZ, i am a SAHM, and we are going to be homeschooling next year -

i didn't think I'd be able to as Josh took up so much time i felt i

practically ignored Ben for a while there ... a least he didn't starve 'cos

he knows how to reheat leftovers in the microwave ;0) ... but, things are

easier now days ... works as a Chemical Engineer and is going to be

having some holidays soon, should be at home for the whole month of

January - it'll be great! He has had to take a fair bit off work this past

year with Josh needing a few ops, so it'll be nice to have a true break as

nothing much planned for January.

Josh is such a character, he is just starting to decide that he doesn't want

to swap a toy with Ben if he hasn't finished playing with it - boy does he

let us know he still wants that toy! This afternoon he ate sand and had his

first swim in the paddling pool ... so we are truly into summertime

activities. I thought it was quite an accomplishment to swallow sand as he

doesn't eat much food orally ... although he really wants to, and seems to

be getting better each day at eating foods. He has a sensitivity to bright

light, so that it our biggest hurdle at the moment, I just want to go out to

the park, but, not possible as he doesn't tolerate the sunlight - and I

can't get him used to sunglasses ... I have a basket full of sunhats that

don't do the trick either. Luckily we have a nice area just out the front

door that I can make quite shaded. He has taken off with his mobility lately

and gets up on straight arms and knees to crawl, then gets down onto tummy

to commando along very fast! He is also keen to climb up the stairs ... so

we end up with mini obstacle courses around the place so he can practice

climbing overthings... at least that is my excuse for not folding up the

washing for the last 15 months :0)

Josh's other medical issues are cleft lip, cleft palate, one kidney, kidney

reflux, charge ear shape, moderate hearing loss in both ears, coloboma in

one eye, glaucoma in the other eye - very short sighted in this eye,

hypoparathyroidism, undesended testes, swallowing troubles, used to have

severe reflux, epsteins anomaly, and a small asd, the vsd has closed up

itself, and no heart surgery needed at present, ... he has had ops for a

gtube, nissans, veisicostomy, cleft lip, cleft palate, glaucoma, just got

hearing aids and loves it (i can't get one to stay in). hmmm, i think i am

forgetting something, oh well that is probably enough!!

The info for the manual is at the bottom of the email ... or look on the

charge foundation web site, at http://www.chargesyndrome.org

hth,

Jo

ds Ben 5-4-99, ds Josh 20-08-02

----- Original Message -----

> thank you for the welcome. i can't believe our children are only eight

days apart. how is

> josh doing? i would love to hear more about him and you and your family