RE: Re: question about CHARGE kids adjusting to changes

[Guest guest]

I've got to chime in on this one! was very sick as a baby and spent many

months at the hospital. The way we comforted her was to put her down. Now, she

is six, she is becoming very affectionate and will move my shirt over so she can

put her cheek on my chest - like she is craving the skin to skin she never got

as a baby. Just thought is was interesting!

As far as the other sensory stuff...... has made great strides - I remember

when just seeing a stuffed animal would make her cry. Now she loves her

animals, sand, feather boas (ok doesn't love them but will put one on!) and

other things. It has taken years but it has come.

Good luck and keep trying.

Lori Myers

Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital

Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal

Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of

12/22/04! and lost her first tooth this month!, and Emma (4).

Dallas, Texas

Re: question about CHARGE kids adjusting to changes

,

Oh, I can relate to you about our kids not wanting to be held as a

baby. When Luke was in the hospital, he would desat a lot when we

held him. Not sure if he was too comfy or what, but that was

terrible. We would just start snuggling with him and have to put him

down so his numbers would come up. Position was very important for

his breathing. Then, after we brought him home, he never wanted to

be held or rocked. We tried as much as possible but he just bucked

backwards and made it very difficult.

I like the idea of considering 2 minutes in a different place a

success. I think staying positive will help a lot. Yesterday was a

hard day for both Luke and I. I felt Luke was never going to enjoy

so many things in life. I think the nice weather is making me a

little impatient. Thanks for the advise, I'm going try to stay

positive and patient.

, Luke's mom, 2 1/2, CHARGE

-- In CHARGE , " Weir " wrote:

>

> My experience when Kennedy was a baby was that we had to urge her

along with

> some things, even if it seemed a little " mean " at first. If it

would've

> been up to her, we never would've left the house (she hated the

sun!) but we

> just did what we could to block it and she learned to put her arm

up to

> block it if she needed it. Even when she was REALLY young 1-2

months old,

> she never wanted to be held and it seemed like we were being cruel

to pick

> her up out of the crib at the hospital, but one of the nurses said

to us

> that you just have to do it - she needs to bond with you and

realize that

> GOOD things happen when you get picked up too, not just icky

hospital

> stuff. So we'd pick her up and she'd wail and wail, we knew we

weren't

> doing anything to really hurt her, we'd just rock her and sing to

her and

> gradually she got used to it and I'm so glad I did it. I think you

just

> need to do it a bit at a time, try and distract them with something

> new/exciting, and consider 2 minutes in a different place a

success, and

> really reward them for trying something new and try to build up as

you go.

>

> Good luck

>

>

>

>

> >

> > Hi. With the nice weather lately, we've been trying to get Luke

used

> > to being outside. This has been an enormous challenge for us. Luke

> > has spent most of his life in 2 or 3 rooms in our house which is

> > his " comfort zone " . We've also been trying to take him into other

> > rooms in the house and he literally just " loses it " when we even

walk

> > towards another room. We try bribing him and using comfort items

but

> > he is one stubborn little boy. Luke has been cooped up in this

house

> > practically his whole life (except doc. appts. and VERY few trips

to

> > Grandma's house) and now it's time to get him out and experiencing

> > life a little. He has an awesome wagon with a canopy, and a couple

> > of swings outside waiting for him. I've been doing some reading on

> > CHARGE kids and their sensory issues. I guess I'm a little

> > confused. How far do I push him to do these things before I'm not

> > respecting his differences that makes these things difficult for

> > him? But if we don't push him, he'll never experience anything but

> > these four walls. I'd really appreciate some advice. Anyone else

> > ever have this problem?

> >

> > PS- There's a picture of Luke outside in his wagon on his website.

> > This was one of the first days we tried it and eventually after

many

> > tears he tolerated it, but we've never been that lucky again. See

> > the little finger puppet on his thumb? This is his latest comfort

> > item. He loves holes.

> >

> > , Luke's mom, age 2 1/2, CHARGE

> > www.caringbridge.org/mn/lukejoseph

> >

> >

> >

>

>

>

> --

> " It is far better to grasp the universe as it really is than to

persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

>

[Guest guest]

-

's advice of positive and patient is perfect. I remember trying to

teach Aubrie to eat. It seemed like it took forever and we were making no

progress. But she was eating well enough to have her Gtube removed by age

1.5 so it must have gone relatively quickly! Just didn't seem like it at

the time. Perhaps knowing that Luke will get there will be enough to keep

your " eye on the prize " and help you get through each day positively.

Aubrie also hated to be held. When she was distressed, we had to let her

rock herself. If we tried to touch or talk to console her, it got worse.

But now she is an absolute cuddle bug. She asks for hugs constantly. I'm

soaking up every minute of it. We got there by respecting her need for us

to let her be at times, but giving her cuddles and touch when she could

handle it. That gentle push concept - we gave it to her at times she could

tolerate it but didn't force it when she couldn't.

I know you'll get there with Luke.

Michele W

Aubrie's mom

[Guest guest]

-

Take the progress where you can get it! You might be on to something with

the roof thing. I know there's something to the big open sky - doesn't give

any points of reference. Imagine a tiny kid lying on his back and having no

more connection to the earth! If you have limited proprioception, then you

can't rely on your body to help you know where it is in space. Aubrie still

can't tolerate lying on her back in the swimming pool to float. Freaks her

out.

Aubrie also would cry like things hurt. Simple little things. And then I'd

start to think that the sensations she was having were like hurt to her -

equally uncomfortable. But, you know, they have got to get past these

things, if at all possible, in order to live a " normal " life. I mean,

Aubrie had to deal with hair shampooing, fingernail clipping - just part of

the deal, you know! And Luke has got to be able to tolerate being out of

doors.

You're doing a great job of watching his cues and going with his flow -

without totally giving in to it.

Michele W