[tri-med] Re: Those with a g-tube kiddo...

----- Original Message ----- 
From: "Wendi"
> When/how did to make the switch from a crib to a regular bed?

This is a really hard one - and one that requires mummy's instinct.

Alex was in a cot for a loooong time. I cant remember exactly but around the 
3 - 3 1/2 mark maybe even older. He was moved when he DID start climbing out 
of the cot with g-tube hooked up to the pump.

He went into a 3/4 bed and I put rails up around the sides (about 3/4 of the 
way down the bed) simply to stop him rolling out of bed and to discourage 
him from getting up. The first few nights I slept on the floor beside his 
bed but eventually I moved back to the lounge / my own bed.

I did set up an intercom between the rooms so I could hear him when he woke 
up and go straight in. Eventually I set up a camera system so I could watch 
him. Back then that was a big deal but these days you can buy baby watch 
camera's / intercoms from Toys r Us.

I also special ordered an extra long extension tube. Without measuring I 
think they are normally about 8 inches long - I ordered Alex one that was 24 
inches. When attached to the pump it gave us almost the length of the room 
before it tugged on his button if he did get up and go a wandering. If you 
are using a Mic-Key (and from memory you are using the Bard) I can send one 
to you.

I also attached the pump tubing using an "idiots loop" - honest thats what 
its called. You create a loop in the tubing and then tape or pin that loop 
to the child or their clothing. That way when they "pull" it pulls on the 
loop not the button. If need be I can send you a diagram or picture to show 
you. I think that was the single best thing to avoid pulling his button out.

I put a barrier across his door so that he could only wander as far as his 
tubing would allow if he did get up.

I also invested $20 on a door break alarm. If all else failed, and he 
disconnected his tubing or pulled out his button and tried to live the 
immediate vicinty the door break alarm would sound and wake me (because it 
was a different alarm sound to his machines). Alex sleeps with his door open 
so the door break alarm is on the hall door - its still there actually.

For whatever reason it didnt take Alex long to realise that he needed to 
call me when he wanted to get up. I left his favourite "quiet" toys at the 
bottom of the bed to encourage him to stay in bed longer and if he indicated 
that he wanted up I always responded immediately. I dont think we lost any 
buttons due to him getting up. I also worried about him choking himself with 
the tubing but he never did that either.

I dont think Alex has ever accidentally or intentionally pulled out a 
button. Other people have, I have but he hasnt. It also hasnt stopped him 
doing a single thing - from sliding down slippery dips on his belly, 
abseiling (rapelling to the US folk), kayaking, climbing monkey bars - he 
does it all. I worry that he will pull it out - other folk worry that he 
will pull it out - but he doesn't. And even if he does its no biggy. I carry 
a spare and can replace it. If he did discoonect the pump tubing at night - 
all that left was a MESS and mean I had to guesstimate how much extra I had 
to get into him during the day to make it up. And thats why G*d made 
Oxy-clean - its brilliant for dealing with milk/formula and urine.

I hope that their are some ideas in there that will help. These days he 
simply discoonects himself from his machines and gets up like any other kid. 
And like every other teen I wish I could get him to roll the leads up and 
put them away when he does get up :-)) Talking of which I had better go and 
do that - hes up and playing with the animals.

Life consists not in holding good cards but in playing those you hold well.
                                            -- Josh Billings

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (12 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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