frustrated!!

[Guest guest]

Well, we have been repositioning for 6 weeks and doing tort PT for 4,

and my frustration is mounting. I have come to term with banding my

daughter, i have already been in touch with CT in DC, but the

tort..thats another thing altogether. I am the only one doing her

stretches, my husband is affraid hell hurt her,(men are not as gentle,

hmmm), sometimes i see progress, others i see none at all, she screams

when we do the aggressive stretches which I HAVE to do, but gosh it

hurts to see her in pain, and then the stretch is not as effective b/c

shes tense...ugh!! I am not very comfortable going out with both kids

b/c of having to keep her off her head and do stretchs at every diaper

change+. Also, I read online (a dangerous place) that she could always

have a little tilt??. Coping advise would be appreciated, somedays i

feel like im drowning in plagio and tort!!

Darcys mom

[Guest guest]

I have found that singing songs with my son while doing the stretches really helps. we sing several verses of The Wheels on the Bus and he does fairly well. when I do not do this, he is also unhappy with my intrusion. I am sure you are doing all you can to do the stretches and at times you know she will be most happy to have something so unfamiliar done to her. good luck and keep trying. many of us know it is hard to hear them cry by what we are doing, but it does work.

frustrated!!

Well, we have been repositioning for 6 weeks and doing tort PT for 4, and my frustration is mounting. I have come to term with banding my daughter, i have already been in touch with CT in DC, but the tort..thats another thing altogether. I am the only one doing her stretches, my husband is affraid hell hurt her,(men are not as gentle, hmmm), sometimes i see progress, others i see none at all, she screams when we do the aggressive stretches which I HAVE to do, but gosh it hurts to see her in pain, and then the stretch is not as effective b/c shes tense...ugh! ! I am not very comfortable going out with both kids b/c of having to keep her off her head and do stretchs at every diaper change+. Also, I read online (a dangerous place) that she could always have a little tilt??. Coping advise would be appreciated, somedays i feel like im drowning in plagio and tort!! Darcys

mom

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Hang in there, this time is the hardest. It will get better.

Something that helped make the stretches more fun for us was to do

them when she was already stretching. My baby would stretch her neck

really far just to watch her sister run by. When she did this, I

would just add to the stretch vs. having a set " stretch time " . This

really helped.

Jen

>

> Well, we have been repositioning for 6 weeks and doing tort PT for

4,

> and my frustration is mounting. I have come to term with banding

my

> daughter, i have already been in touch with CT in DC, but the

> tort..thats another thing altogether. I am the only one doing her

> stretches, my husband is affraid hell hurt her,(men are not as

gentle,

> hmmm), sometimes i see progress, others i see none at all, she

screams

> when we do the aggressive stretches which I HAVE to do, but gosh it

> hurts to see her in pain, and then the stretch is not as effective

b/c

> shes tense...ugh!! I am not very comfortable going out with both

kids

> b/c of having to keep her off her head and do stretchs at every

diaper

> change+. Also, I read online (a dangerous place) that she could

always

> have a little tilt??. Coping advise would be appreciated, somedays

i

> feel like im drowning in plagio and tort!!

>

>

> Darcys mom

>

[Guest guest]

I know how you feel. My son became pretty resistant to the stretches right away

and I was

so worried that I wasn't doing enough. We both got a lot happier once I learned

to trick

him into stretching and exercising as we played and went about our daily lives.

He would

crane his neck to look at the TV (which he's not supposed to watch) so I'd use

that. When

I started feeding him in a high chair, I would turn the chair so he had to look

to his weak

side. Once I dropped the PT regiment and started taking advantage of stretching

opportunities instead, I felt like he was actually getting better stretches

since he wasn't

resisting. Also, I found that even though my son had a good range of motion

after doing

stretches, his neck muscles remained weak on one side and that seemed to be

holding

him back. Once he started crawling and I started focusing on working out those

muscles

(like making him reach high and to the weak side for toys), I saw big

improvement in the

tort. Don't be discouraged if she seems to have setbacks. Tort can come and go

if they

are feeling tired or going through something stressful.

As for your husband, I know how that goes! I had my husband take off work to

take our

son to a PT session and it definitely improved his understanding and attitude.

The STARband has been great for us. It's so much easier than you expect it will

be and

you'll be so happy once you start seeing the improvement. I think it has helped

with the

tort because he doesn't automatically roll to the flat spot like he did without

it.

Keep up the good work. Your concern shows what a dedicated mom you are!

in San Francisco, mom to Ethan, plag/tort -STARbanded at 7 months

> >

> > Well, we have been repositioning for 6 weeks and doing tort PT for

> 4,

> > and my frustration is mounting. I have come to term with banding

> my

> > daughter, i have already been in touch with CT in DC, but the

> > tort..thats another thing altogether. I am the only one doing her

> > stretches, my husband is affraid hell hurt her,(men are not as

> gentle,

> > hmmm), sometimes i see progress, others i see none at all, she

> screams

> > when we do the aggressive stretches which I HAVE to do, but gosh it

> > hurts to see her in pain, and then the stretch is not as effective

> b/c

> > shes tense...ugh!! I am not very comfortable going out with both

> kids

> > b/c of having to keep her off her head and do stretchs at every

> diaper

> > change+. Also, I read online (a dangerous place) that she could

> always

> > have a little tilt??. Coping advise would be appreciated, somedays

> i

> > feel like im drowning in plagio and tort!!

> >

> >

> > Darcys mom

> >

>

[Guest guest]

What state do you live in? Ask for an MRI. I had both a CT and an MRI. Sometimes the MRI shows things better.

From: jmw5982 <jmw5982@...>Subject: Frustrated!!cholesteatoma Date: Wednesday, January 27, 2010, 8:02 PM

I feel like I'm failing my son because I can't get the doctors to figure out what going on here! Had CT's today that they say look ctoma free... but he is having similar issues to when he first had one almost 2 years ago. Can it ellude the CT?? He has started a facial tic(mostly blinking constanly).. . has balance issues(trips over him own foot while walking straight, falls flat on his face if his foot barely brushes mine, walks into things, etc) They said his balance organs are misformed... but we're just now noticing this issue! His 1st ctoma destroyed all his inner ear bones and mastoid bone because it wasn't showing before the tics which we had a neurologist trying to diagnose.. which is who found it. So I'm scared he's suffering even more damage now that isn't being caught! We are going to see a neuologist next... they probably won't get us in for months though! His ctoma free ear had a huge decrease in hearing last year... that can't be

explained either. What do I do???? Anyone else have any similar experiences with ctomas??Jill