Re: Re: help help losing my motivation

[Guest guest]

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Hang in there. got to the point where she didn't want to have it OFF. Jen

[Guest guest]

Well today I took Grace out and someone asked about her helmet. I explained a little bit about it and the woman was very nice which made my first encounter easier. My mom thinks she looks darn cute in it, says she looks like she put a little mixing bowl on her head. Her helmet is plastic and then it has layers of some kind of material inside that they peel away as her head grows. It has a hole in the told and then a chin strap. We called the orthotist this morning about the fact that it slides down so far and he said that was normal right now because the helmet does not fit her because it is not supposed to fit her, her head will grow to fit it and then the whole thing will be better. He said we want it as far down on her forehead as possible? Does this sound right? Plus now I am wondering about the tort side of her face that is flat and the chin strap pushing on it and not helping it to fill out? I am also wondering that if with time she will begin to look side to side again, right now the helmet is cumbersome and she won't rotate when we try to get her to look to the tort side. Ahhhhh so many questions it is so nice to talk to people who have been through the same feelings that I am going through now. The ped when I talked to him yesterday made it sound like she was in awful shape but the PT said she is great with wonderful rotation and now we just have to work on her ear to shoulder motion. Ok well sorry for a long post just thinking out loud!! Thanks and Grace

[Guest guest]

I'm not familiar with the style of helmet Grace has, but a chin strap doesn't sound very helpful in that particular way. Every single concern you have you should voice to your specialist, even if the answer is a " that's supposed to happen " it will give you piece of mind.

My wife hated our DOC band for a few days. She couldn't stand the fact that she couldn't hold him close and nestle his head under her chin te way she always would. And the constant sliping over the face problem was maddening! Then the poor boy couldn't get comfortable when in his crib. We really didn't think we were going to make it. that was an unbelievably long 9 days ago!

Get the answers you need, leave no stone unturned, but stick with it. We can see a difference in ryan's head already, and can't wait for him to be as good as he can be. He's gotten used to it for the most part, and we love decorating it with stickers!

I know 's helmet is pretty low in the back, so NOT putting him in outfits with heavy collars helps from pushing it forward on his face when he looks up. if yours is that way you might want to double check that. As you go to your visits they will shape the helmet to fit better even as Grace grows into it.

--

Joe O'Connor

streams2oceans@...

Charlotte, NC USA

[Guest guest]

Oh I so relate to your wife. The first thing I said when we put it on was that I missed kissing her head and holding her close! That is good to know about the slipping thing over her eyes. My husband thinks I am crazy because it has only been two days and I keep calling the orthotist. My husband thinks that the guy knows what he is doing but from some of things I have read I am not so sure they always do! I didn't really think about the asymmetry of her face and the chin strap until this afternoon (my mom pointed it out to give me one more thing to freak out about!!) But I will call the orthotist on Monday for sure because we have worked so hard I don't want to see it all go downhill from a chin strap! Thanks -- and Grace

[Guest guest]

That is very good advice on the shaving. It seems to be driving me more crazy then her! I will talk to the orthotist about this do you think that two weeks is too long to wait (that is her next helmet check) or would you go sooner and talk to him? I find myself now looking for people with kids that have helmets just to make me feel better and feel like I am not the only one!! I had never heard of this and neither had my family and now that my mom talks to her friends about it they all seem to know someone who has had to deal with this or is currently dealing with it. One mother of triplets has to have 2 out of 3 in helmets. Thanks for the advice and I will look into the shaving option.

[Guest guest]

and Grace- I am glad your first encounter with the outside was so good that is wonderful. I bet she looks adorable in the band- I think all of our kids are cuter than most anyhow:-) are you doing stretching exercises- if so make sure you are removing the band to continue doing them-and if not you may want to ask your ortho about exercises and incorporating them in your daily routine to be sure she continues with the rotation. Good luck and heres to more good days. keep up the great work mommy!

Beck

[Guest guest]

Thanks for the encouragment! Today has been better and to know that it will take awhile for the fit to adjust is good to know. We have been taking the band off to do her therapy or timing her therapy to coincide with the times we have to take her helmet off to check for the red spots. Tonight we are supposed to have her sleep in it for half of the night so we will see how it goes. She is napping now though in it and doesn't seem to mind! I will keep you all posted on how the next week goes I am just hoping that it will get easier and easier! Thanks and Grace