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Thread: The countdown is on...

  1. #1
    JillysMama is just starting out JillysMama's Avatar
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    Default The countdown is on...

    I haven't been on in a while, but I thought I'd post a quick update. We are almost 9 months post op and we've done 9 months of helmet therapy. Hard to believe it's been so long! We have an appt on July 1st with the NS and he's going to decide if she's done with the helmet. He's been telling us all along that she's progressed so well he thinks she'll be done. Our orthotist has also been telling us that her head looks great and we should be done soon. I was trying not to get my hopes up, but honestly my hopes are WAY UP. If they tell us we'll need the helmet longer I'll be fine with that, but it's gonna suck. Wish us luck!!!

    I've attached a couple recent pics of her head without the helmet. She still has a tiny bit of bogging on the right eye. The left eye seems like it's worked itself out. It's not noticeable to anyone but me because I'm the ultimate head picker. Even my hubby has no clue what I'm talking about. I'm told by our orthotist that the bogging is the last part to work out and it usually takes care of itself after the helmet comes off.

    Anyway, can anyone tell me if there is a way I can be notified whenever someone posts something new in the "Helmet Therapy" forum? I looked through my settings and couldn't figure it out. I want to help out my fellow helmet mamas and I have a feeling I'll be on here even less when she is not in her helmet anymore. If anyone can tell me if it's possible and how to do it that would be awesome.


    Things I would like to pass on to new mamas about to go through helmet therapy:
    - It's really not that bad after you, the baby, and your spouse get used to it. Sounds silly, but in time (it took us a month) you'll all get so used to it that it won't have a huge impact on every little thing.
    - After a while you don't care that people are staring at you in public places. You'll learn cool ways to answer the question, "Why is your baby wearing a helmet?" Some of our favorite responses were, "Skydiving accident." "She's getting ready for her launch to the moon." "It's to make her more durable."
    - The helmet really does work well and we've been VERY pleased with the results. The results were noticeable with each change we made to the helmet and we're very glad we did it.
    - There are a couple advantages to having the helmet. The best one is when she started pulling herself up, cruising, and finally walking she fell about 100 times a day. The helmet was her saving grace on many many occasions. And when I'm trying to clean her nose or face and she's turning her head away , her helmet is much easier to grab and hold in place than her squishy head.
    - By far my favorite part of the helmet was what we called "helmet time". It was the one hour a day she got to have the helmet off. During that hour me and my husband just played with the baby. She had our full attention and the three of us had so much fun together. If we weren't forced to have one hour of helmet free time each day we wouldn't have cut out that time for each other. It's now part of our daily routine and I really hope it doesn't change after the helmet is gone.
    - BUT MOST IMPORTANTLY: Getting to know the other helmet moms on this site and posting experiences and questions is so therapeutic. There are amazing families on here and the support helped me immensely during our whole journey. PM me any time at all or you can just email me at jeanmjohnston@gmail.com.
    Attached Images
    Jean

    Mama to Jillian Alexis
    Born on 6/29/09
    Diagnosed with Sagittal Craniosynostosis 9/14/09
    Endoscopic surgery 9/28/09
    Started helmet therapy 10/7/09

    We are on the other side!

  2. #2
    Nezzy will become famous soon enough Nezzy's Avatar
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    That is a great posting that I am sure will inspire and help many helmet mommies. And I LOVE the sunscreen hair pic..Nick's hair looks exactly the same after I spray down his cute little head with sunscreen.
    Heather
    Nicholas - born 3/4/09. Sagittal Synostosis. Posterior CVR 9/15/09 with Dr. Fearon and Dr. Sacco - Medical City Dallas.
    http://www.caringbridge.org/visit/NicholasNezich
    http://www.onetruemedia.com/shared?p...3242&skin_id=0

  3. #3
    Sophia's_mom is on a distinguished road Sophia's_mom's Avatar
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    Great news! She looks amazing! It'll be great to finally be helmet free and enjoy your baby girl just being herself! I've taken a break from CK too and subscribed just to the helmet therapy thread. When you log into Helmet Therapy look at the top right of the screen and click on Forum Tools then select Subscribe to the fourm. From there you can select how often you want updates and what method. Hope that helps.
    Tessa - mom to Sophie and Ben
    Little Miss Sophie - 12/22/08 - Sagittal - Endo surgery 4/16/09 @ St. Louis Childrens
    Baby Boy Ben - 12/14/11 - No Cranio!

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    CalinaLily CalinaLily's Avatar
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    Your little girl looks darn good to me!

    And I totally agree with the helmet being a nice "handle" for a squirmy baby head!! :) There were also lots of times the helmet made it easier to move her while she was sleeping, because we could just hold the neck of the helmet... hehe
    Melanie
    • Calina Lily born 3/19/09 Sagittal Synostosis - diagnosed at birth
    • Endoscopic surgery with Dr. Johnson & Dr. Ruiz 6/17/09
    • StarLight helmet therapy with Star Cranial started 7/13/09 & graduated 4/5/10
    My Mommy Blog - including our cranio journey

    Before and After surgery photos

  5. #5
    Avery's Mom Avery's Mom's Avatar
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    Okay that second pic made me almost spit water on my screen! So cute!
    Kelle
    Mom to Samuel Avery
    Born August 10, 2007
    Right Lambdoid Cranio
    Complete bilateral cleft lip and palate
    Surgery at CHOA April 14, 2009



  6. #6
    Registered User Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet's Avatar
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    Oh my goodness, she is so beautiful.
    Mom to Noah (no cranio)
    Fiona (Metopic):
    Surgery #1 CVR/FOA 9-26-07 (age 10 months) Sick kids in Toronto with Dr. Phillips (PS) Dr Kulkarni (NS)
    Surgery #2 Cyst removed over left eye 9/08 Dr. Phillips (PS)
    Surgery #3 Cranioplasty 10-18-11 (almost 5 years old) for soft spots filled in with titanium plates/peek implant from bone resorption and scar revision. Dr. Phillips


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    daniellelucille is just starting out daniellelucille's Avatar
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    She looks great! I do see what you are talking about with the eye, but I looked at the pics before I read your post first and I didn't see it til I read and looked for it! (And I'm quite the headpicker myself)!
    Danielle
    Married to JR (06/17/06)
    SAHM to:
    Lucas (04/07/07) - No cranio
    Jocelyn (08/04/08) - Sagittal Cranio
    Endo Surgery: 01/12/09

    Helmet therapy: 01/27/09 - 03/24/09
    WE'RE ON THE OTHER SIDE!!!


  8. #8
    JillysMama is just starting out JillysMama's Avatar
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    Update: We got our hopes up for nothin'. The NS said we need to keep it on till she outgrows it. She's still getting some benefit from the helmet and it's a fairly new one. So he basically said there's no point in putting it on the shelf just yet. I was (and still am) a little disappointed, but for the most part I don't really care. We're used to it and a few more weeks (or maybe a month) isn't a big deal in the grand scheme of things.

    Here's the funny part. About a day after her appointment she got a really nasty cold virus with a fever. We had to take off her helmet for 5 days! She hasn't had it off for more than a couple hours EVER. So at least we got a little break.
    Jean

    Mama to Jillian Alexis
    Born on 6/29/09
    Diagnosed with Sagittal Craniosynostosis 9/14/09
    Endoscopic surgery 9/28/09
    Started helmet therapy 10/7/09

    We are on the other side!

  9. #9
    MBSzafranski MBSzafranski's Avatar
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    What a cutie!! I have my hopes up about Ben's helmet deadline too- possibly 1 month. Your post was great! I love the hour per day too! Whenever we skip it I really miss it.

    You will have her pretty head back before you know it!
    Maggie Szafranski
    Tulsa, OK

    mom of:
    Ben- born 11/24/2009 - Sagittal.
    *Surgery w/ Dr. Genecov 3/3/10*
    *Helmet Therapy 3/19/10 until 7/22/10*
    Luke- born 10/11/2007
    Jack- born 6/26/06



    www.bensheadblog.blogspot.com

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