Re: Re: Appt. with KKR

[Guest guest]

,

Yes, 's band has Steelers decorations on it. I already told my husband we will have to hide it when we get in to Cleveland!! LOL!!! It's too bad that we won't get a chance to meet. I've only ever seen two other babies with bands/helmets and that was at 's orthotists' office and neither one of them seemed to want to talk. I could go on for hours if I met another plagio mom!!!! Hope all is going well with Dane. Take care. I will keep you posted about 's appt.

AnnMarie and (14 mos.)

STAR grad

Tort resolved (?)

PS -- Any recommendations for any good restaurants near Straight Ahead?

> > >> > > If you haven't been to our groups website lately, you can check it out> at> > > http://www.TorticollisKids.org> > >> > > Without all of you this group wouldn't be possible!! Thank you!> > >> > >

[Guest guest]

Thanks Debbie!! I will keep everyone posted. Take care.

AnnMarie

Re: Appt. with KKR

Ann Marie:That's great you'll be seeing her - It's a good idea to get thoroughly evaluated by one of the best (from what I've heard) tort. experts. Good luck - happy travels . Let us know what she says & how it goes.Debbie Abby's mom DOCgradMI> > > > The Plagio Group!!> > >> > > Just wanted to let you all know that I spoke to Karmel-Ross on the> > > phone this past Saturday morning. She agreed to do a consultation for> > > > next Saturday at Straight Ahead at 2:30 p.m. We are about 2 1/2 hrs.> east> > > of Cleveland. One hour east of Pittsburgh.> > >> > > Our reasons for an evaluation are 's jaw asymmetry, last> little> > > bit of tilt, the apparent "spasms" he seems to be having and the lack of> > > stretching/strengthening/massage our PT has us doing at home.> > >> > > 's PT and I have not seen eye to eye on several occasions.> She> > > has quite a big ego and has the "know-it-all" attitude about> > > torticollis/plagio and the treatment for it. She does not like it when> I> > > give any kind of input towards his therapy. We go through EI for his> > > therapy, and she is the best and most experienced PT they have, so> finding> > > another is kind of out of the question. Besides, has been> > with> > > her since July 2001 (about 9 mos.). I've learned a tremendous amount> from> > > this group, the tort group, and also from my own research, so my> > questions> > > can be very knowledgeable. I just wish I would have found these groups> > > before his treatment began, so I would have had a jump start on his> > therpay.> > > I do think our PT has helped him tremendously and I am grateful to her> > (she> > > is actually the one who got the ball rolling for his STAR therapy - even> > > 's neuro thought "repositioning" was the answer, he was 6 1/2> > > mos. old at the time!!)> > > Our PT considers 's tort (left-sided) to be resolved and he> has> > > complete ROM, but I will not be satisfied until he sees the "expert" on> > > torticollis.I am so glad that she does consultations. Like I said> before,> > > if I would have known back at the start of ' s therapy, what> I> > do> > > now -- I would have taken him to Straight Ahead from the very> > beginning!!!!> > > After all, we are only a couple of hours away. But you can not dwell on> > > what you should have done -- you just move forward and hope for the> best!!> > > I will keep in touch with you all. Take care.> > >> > > AnnMarie & (14 mos.) > > > STAR grad> > > Tort resolved (?)> > >> > > PS -- When explaining to KKR 's course of treatment for his> > tort> > > and plagio, she seemed very surprised that he was in his "original"> > STARband> > > for the entire> > > time (7 mos.) and also that our PT has not had us do any> > > stretching/strengthening at home throughout 's therapy. She> > said> > > his tort was very mild and he did not need any more than what she was> > > providing (?)> > >> > >> > >> > >> > >> > > If you haven't been to our groups website lately, you can check it out> at> > > http://www.TorticollisKids.org> > >> > > Without all of you this group wouldn't be possible!! Thank you!> > >> > >

[Guest guest]

Ooops, sorry AnnMarie, I didn't get to that post that explains what your

going to KKR for!! I know how you feel, one minute your thinking, resolved,

resolved, and the next your like, wait, are you tilting because its a comfort

zone, or is this regression!? I know how you feel, you have come so far and

you want to make sure that you don't lose ground that was worked so hard for.

I feel the same, if there is any hint of a recurrence I want to pounce on it

and make sure he is fine, whatever it takes. I am totally responsible for

his future!

It took me about 2 months before I would even say, resolved, and now that I

say it, he was tilting all last week!! Please let me know what tips KKR

might have for our growing boys- stretching is no longer possible while he's

sleeping!! Thanks for letting me vent- hopefully he'll continue to be

straight for a long while now and not get me so paranoid!

' Mom (tort resolved(?!) DOC grad)

[Guest guest]

Thanks Niki, Marci, Debbie, , and !! I'll keep everyone posted as to what KKR has to say. She wants us to bring our cam corder so we can video the session. I think that is great!!

I am excited about going but also very nervous!! has been in PT for 9 mos., so far, and was in his STARband for a total of 7 mos. Just when you are thinking everything is just about over with. . . . . . .

does look really good and I'm very happy with his progress so far. When I tell people that I am taking him for this evaluation they say, "I can't tell anything is wrong with him. I think he looks fine." It's just that I need this -- for my own satisfaction (and mostly for s!) If later on in life I find out that I could have done more for him, and I didn't, it would just kill me!! I want to do the best that I can for him now -- and I think KKR is the best. So here we go!!!!!!!!!!!!!

AnnMarie & (14 mos.)

STAR grad

Tort resolved (?)

PS -- , yes, is my first and only child (so far). Thanks for the restaurant tips!!!