CFS says we're done... if we want to be.

[CalinaLily]

Man, I was not expecting to have a choice regarding our helmet therapy, but our CFS said at our appointment today that he's happy we've stuck with the helmet therapy as well as we have, that Calina's head looks as good as he could imagine it looking, and that if we're sick of dealing with the helmet - or she is - that we could stop now. I told him that we were going back to pick up helmet #3 tomorrow, and he told us that there was no harm in continuing, but that we shouldn't feel like we HAVE to from this point.

I mean... what am I supposed to do with this information? I wanted to just leave off her helmet then and there and tell our orthotist, Jim, "Sayonara, sucker... seeya again never!" But then another part of me is scared to death that we haven't done as much as we could (there's still a little indentation on one side) or worse, that her forehead will pop out again if we stop now.

My gut's telling me that it just feels too good to be true to think that I have the power here... That I can just stop anytime I want to... Because the look on Calina's face when I touch her forehead when her helmet is off totally breaks my heart -- she closes her eyes and leans into me. I know she'd sigh if she knew how. I just feel so bad for her and I want to be able to have her feel all over again...

I told him that Jim is really concerned about backtracking and that he likes to overcorrect to make sure that any reverting to a narrow sagittal-looking head doesn't take it outside of a "normal" range... and the surgeon told me that in his experience with all of the endoscopic kids he's done - basically point blank - that wasn't going to happen. Her bone is all grown back, her head won't be changing much one way or the other, helmet or not.

So, naturally, I turn to you guys... I know only a few of you are out of your helmets already, but once you're done, have you noticed any changes for the worse that made you wish you'd stuck with the helmet a little longer? Or... for those of you still in helmets (who know exactly what I'm dealing with on a daily basis), what would you do if given the option?

[Tyler&Jakobsmommy]

Ugh!! Thats a tough decision. We were told after a year old that the helmet won't do to much. I know what your talking about with the head rubbing. I remember when the boys had their helmets if you would rub their heads their eyes would roll back.lol!Sorry I'm not much help.

[Leighasmom]

yikes no help here either we didn't have endo. We were told that after a year old the helmet wouldn't help much either but our dr did worry about Leigha reverting back to her head trying to grow in the coronal head shape and that is why we had a post op helmet thearapy with the CVR surgery. I guess like everything else go with you're gut. Leigha too loved to have her head rubbed when her helmet was off but when I think about how relaxed i get with having my hair brushed I guess it makes sense.

[Sophia's_mom]

Oh Melanie, I want to jump up and down and celebrate for you and sweet Calina. I am so bias right now, if someone told me to be done with the helmet I'd throw the darn thing in the lake. I'm ready for it to be OFF! That being said, I'm still scared of her head regressing and that will be one of the main things I talk to our CFS about when we go in Dec and they release Sophie from her helmet.

I guess on this one you almost have to go with your gut. I'm a little confused about why the doctor would say "Stop if you want to"? Is there any reason to leave it on? Will it do some more good? Maybe it's a gray area and there is no definate "Yes, it will still help" or "No, it won't do anything more". I put a lot of stock in the opinion of our orthoist at Hanger, if my doctor gave me the choice I would want his advise too.

Good luck! I'm sorry that decision was put in your hands, I honestly don't know what I would do faced with that.

[Avery's Mom]

Since you have not been in helmet THAT long and the next one is ready I would get the new one and then when she outgrows that one maybe stop? If you are already in number three at just a little over 4 months then it won't be that much longer and you can then say you followed it through.

[CalinaLily]

The helmet that came was made incorrectly and didn't fit!! IS THAT A SIGN??? hahaha

We sent it back and had them remake it properly, and we'll have it fit to her for sure. We may have her wear it till Christmas, maybe the end of January, maybe till it doesn't fit anymore, but... This will definitely be the last one.

I'll probably post some photos before long (when I REALLY feel like we want to chuck it) to see if she meets with your approvals. :)

[JillysMama]

I think you're making the right decision keeping it on for a while longer. I met a lady at the bank the other day and the doc told her she could take her baby's helmet off a bit too soon (she didn't say how early it was, sorry) and the head regressed. It regressed enough to where the mom regretted taking it off.

I've read that our babies brains grow 80% of their adult size brain in the first year. (Does that make sense?) So like if our brain is at 100% now (cause it's not growing anymore) then in the first year it grows to the 80% mark. That's why after one years old it doesn't make that much of a difference. My NS has also told me several times that the sagittal babies have a little relapse after the helmet is taken off. That's the reason they overcorrect. Hope this helps!

[mommy22]

Yeah our NS says the same thing. Even though if she told us we could be done with it, I'd definitely take it off.

[CalinaLily]

Ugh, our new helmet is making me crazy. The fit is all wrong, and it keeps sliding down into her eyes. (There's NO contact at the back of her neck!) She just started crawling, so her shoulders keep pushing it up, and she has to tilt her head waaaaaay back to look up at us. Dangit.

All our other helmets have been big during their first week, but they always seem to tighten up within that time... This time, not so much. Another appointment on Monday is in order... :::

[ayersjulie]

good luck on Monday. I hope they can the helmet to fit better. Poor little Calina :(