+ Reply to Thread
Page 2 of 3 FirstFirst 1 2 3 LastLast
Results 11 to 20 of 21

Thread: Is it supposed to get worse before it gets better?

  1. 11-11-2011 08:48 AM #11
    Carmen77
    Carmen77 is offline
    Mommy to my "Little Tonka" Carmen77 will become famous soon enough Carmen77's Avatar
    Join Date
    Jun 2010
    Location
    Phoenix, Arizona, United States
    Age
    35
    Posts
    3,888
    Rep Power
    27

    Default

    Quote Originally Posted by Janet
    I got an email back, I'm doing everything I'm supposed to be doing, her body just doesn't like the suture material.
    So what did it say?
    Carmen
    Mother of 2 Girls, 4 Boys!
    Mateo Tolentino 10/21/09
    Dx - 07/08/10 Sagittal Synostosis Surgery Date: 08/23/10
    Dr Singh (CFS) Dr Shafron (NS)
    We are on the other side
    Lucas Jeremiah 11/25/10
    Dx - 03/31/11 Plagio/TorticollisHelmet Therapy 06/03/11
    Dx - 07/20/11 Mild Metopic W/Trig (wait and see)
    Reply With Quote Reply With Quote
  2. 11-11-2011 08:51 AM #12
    MomofJCW
    MomofJCW is offline
    Mom of 2 wonderful boys! MomofJCW MomofJCW's Avatar
    Join Date
    Oct 2010
    Location
    Virginia
    Age
    35
    Posts
    514
    Rep Power
    9

    Default

    I hope it all works out!
    Aisha

    03/30/07-Jeremiah (multiple medical issues and delays)
    Posterior CVR 03/31/11 (4yrs old)
    Dr. Rhodes CFS and Dr. Gary Tye NS @ VCU Medical Center
    Bilateral fronto-orbital advancement 01/10/13 (5 1/2yrs old)
    Dr. Bartlett CFS and Dr. Storm NS @ CHOP

    www.caringbridge.org/visit/jeremiah2007

    We are on the other side again!
    Reply With Quote Reply With Quote
  3. 11-11-2011 09:39 AM #13
    Janet
    Janet is offline
    Registered User Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet's Avatar
    Join Date
    Mar 2007
    Location
    Mississauga, Ontario, Canada
    Age
    39
    Posts
    20,403
    Blog Entries
    3
    Rep Power
    123

    Default

    Quote Originally Posted by Carmen77 View Post
    So what did it say?
    That it still looks like it's a reaction to the suture material, it may take awhile for it to clear up, keep doing what I'm doing and hang in there.
    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

    Reply With Quote Reply With Quote
  4. 11-11-2011 11:21 AM #14
    Carmen77
    Carmen77 is offline
    Mommy to my "Little Tonka" Carmen77 will become famous soon enough Carmen77's Avatar
    Join Date
    Jun 2010
    Location
    Phoenix, Arizona, United States
    Age
    35
    Posts
    3,888
    Rep Power
    27

    Default

    Quote Originally Posted by Janet

    That it still looks like it's a reaction to the suture material, it may take awhile for it to clear up, keep doing what I'm doing and hang in there.
    I'm sorry Janet! This must be so frustruating for you! Praying it clears up soon!
    Carmen
    Mother of 2 Girls, 4 Boys!
    Mateo Tolentino 10/21/09
    Dx - 07/08/10 Sagittal Synostosis Surgery Date: 08/23/10
    Dr Singh (CFS) Dr Shafron (NS)
    We are on the other side
    Lucas Jeremiah 11/25/10
    Dx - 03/31/11 Plagio/TorticollisHelmet Therapy 06/03/11
    Dx - 07/20/11 Mild Metopic W/Trig (wait and see)
    Reply With Quote Reply With Quote
  5. 11-11-2011 11:43 AM #15
    Janet
    Janet is offline
    Registered User Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet's Avatar
    Join Date
    Mar 2007
    Location
    Mississauga, Ontario, Canada
    Age
    39
    Posts
    20,403
    Blog Entries
    3
    Rep Power
    123

    Default

    It is frustrating, I see all the children on here with perfect scars and so many without healing issues. It's nothing that her surgeon or anyone else did, it's just her body is reacting to the material...I just hope it heals fast, this is the last reminder.
    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

    Reply With Quote Reply With Quote
  6. 11-11-2011 11:48 AM #16
    Carmen77
    Carmen77 is offline
    Mommy to my "Little Tonka" Carmen77 will become famous soon enough Carmen77's Avatar
    Join Date
    Jun 2010
    Location
    Phoenix, Arizona, United States
    Age
    35
    Posts
    3,888
    Rep Power
    27

    Default

    Carmen
    Mother of 2 Girls, 4 Boys!
    Mateo Tolentino 10/21/09
    Dx - 07/08/10 Sagittal Synostosis Surgery Date: 08/23/10
    Dr Singh (CFS) Dr Shafron (NS)
    We are on the other side
    Lucas Jeremiah 11/25/10
    Dx - 03/31/11 Plagio/TorticollisHelmet Therapy 06/03/11
    Dx - 07/20/11 Mild Metopic W/Trig (wait and see)
    Reply With Quote Reply With Quote
  7. 11-11-2011 01:43 PM #17
    AJ's Mommy
    AJ's Mommy is offline
    AJ's Mommy AJ's Mommy will become famous soon enough AJ's Mommy's Avatar
    Join Date
    Jul 2009
    Location
    Seattle, WA
    Posts
    3,689
    Rep Power
    28

    Default

    Sorry sweetie!! Prayers!!
    ~~Shelby~~

    AJ~Sagittal Craniosynostosis
    ~Surgery 10-6-2009 At Seattle Children's Hospital
    ~Dr. Ojemann and Dr. Gruss~

    Cranio Care Bears
    www.craniocarebears.org
    Reply With Quote Reply With Quote
  8. 11-11-2011 02:39 PM #18
    jjmc123
    jjmc123 is offline
    On the other side again! jjmc123 is just starting out jjmc123's Avatar
    Join Date
    May 2007
    Age
    32
    Posts
    4,527
    Rep Power
    37

    Default

    It would make sense to me that it's getting worse as I assume the body is reacting more when they are in the dissolving process. Fiona is not the only kid with scar issues. I know from my personal experience I don't even notice 1/2 of Logan's scar issues because his hair covers it. When you posted these latest pics of Fiona I decided to check out Logan's scar and sure enough he has a couple open areas.
    Cindy

    Mom to Logan (12/8/2006) - Left Coronal

    Hospital - Connecticut Children's Medical Center (CCMC)
    Surgeons - Dr. Kanev & Dr. Casteglione
    1st Surgery (7/21/2007) - CVR & ear tubes
    2nd Surgery (    2/18/2011) - CVR #2

    Patch therapy for amblyopia (lazy eye)
    8/4/11 - 20/500 *** 10/14/11 - 20/250 *** 1/13/12 - 20/60 *** 4/13/12 - 20/60     *** 8/6/12 - 20/50

    http://www.caringbridge.org/visit/logansullivan
    Reply With Quote Reply With Quote
  9. 11-11-2011 02:53 PM #19
    Janet
    Janet is offline
    Registered User Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet Test Rep Janet's Avatar
    Join Date
    Mar 2007
    Location
    Mississauga, Ontario, Canada
    Age
    39
    Posts
    20,403
    Blog Entries
    3
    Rep Power
    123

    Default

    Quote Originally Posted by jjmc123 View Post
    It would make sense to me that it's getting worse as I assume the body is reacting more when they are in the dissolving process. Fiona is not the only kid with scar issues
    I know she is not, I was ranting because I'm frustrated with the whole thing.
    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

    Reply With Quote Reply With Quote
  10. 11-11-2011 03:15 PM #20
    fitmomof2ae
    fitmomof2ae is offline
    fitmomof2ae will become famous soon enough fitmomof2ae's Avatar
    Join Date
    Jan 2009
    Posts
    4,260
    Rep Power
    32

    Default

    Thanks for the updates. :) It will get better soon!


    Sagittal surgery - 02/26/2009

    Second surgery suggested to correct a bump on the head and fill in soft spots.
    Reply With Quote Reply With Quote
+ Reply to Thread
« Previous Thread | Next Thread »

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts

Forum Rules