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Thread: our NS trip

  1. #1
    happy2bjustmommy
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    Default our NS trip

    Lets just say yesterday was very eventful!
    I got everyone loaded up, into the truck, and got in, and the darn thing wouldn't start! Right then, it starts POURING! my christmas decorations all get knocked over by wind. I call hubby, and he comes to the rescue. Turns out the cable on the battery was loose. I knew i was going to be late, but i decided to go anyway. I get to my 215 appt, at 230, sign in, pay 35 dollars, then the power went out. We waited for about an hour, then the doc takes us into his private office, because it was too dark in the medical office. He didn't have D's full chart. Didn't have his growth curve. he measures his head. ( 42.5 cm) and asks me why i am there, ( since we didnt have the chart) I tell him, we are there to go over the MRI results, and of course, they are on the computer, and there is no power. So he asked me for my phone number, and told me he will call me.
    Then i go to leave, and i ask myself. WHY did i have to choose this trip to the doc to skip the sling and take the car seat. D was sleeping, it was pouring, and we were late already. Now i have to walk down stairs, because of course, this specialist is on the 4th floor. LOL

    So today the NS called. It appears ds has a mild metopic synostosis, but nothing else. No microcephaly,( meaning brain is NOT too small) and everything looked great.
    So now we are wait and see.

    At this point, i am going to be taking pics of him, in different angles, every few weeks, so i can see if any major changes come up, and if so, i will be going to another doc ( CFS) so get another opinion. For now, i am going to relax a bit, stop worrying so much ( yeah right) and enjoy my holiday!
    Melissa
    Homeschooling mom to
    Samantha 8
    Gabby 7
    Emma 5
    Diesel May, 2009 D has Apnea, Reflux, Seizures, , mild Metopic synostosis. No surgery recommended. Wait and see approach!

    Diesel Head Album

  2. #2
    audra15 is on a distinguished road audra15's Avatar
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    Great news!
    Sounds like a crazy appointment though!!!
    Beth
    Kyra Rose - born 5/25/09
    sagittal surgery -10/14/09 at CHOP

  3. #3
    Avery's Mom Avery's Mom's Avatar
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    Good for you but sorry the trip sucked!
    Kelle
    Mom to Samuel Avery
    Born August 10, 2007
    Right Lambdoid Cranio
    Complete bilateral cleft lip and palate
    Surgery at CHOA April 14, 2009



  4. #4
    Sophia's_mom is on a distinguished road Sophia's_mom's Avatar
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    Sorry for the sucky day, but the GREAT news makes up for that. Yippee!!!
    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!

  5. #5
    Moderator Shar will become famous soon enough Shar's Avatar
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    I can totally picture the whole thing in my head since we're in the same state! That gusty wind/dust/rain storm, the office visit (been there three or four times with H, tho we've never been there with the power out), the trip out to the parking garage.

    I am so relieved to hear that D is a mild!!!! GREAT news!!!!
    Shar
    Mom to H (11/2007 ~ born with a Metopic Ridge, no surgery needed)

  6. #6
    Amy K will become famous soon enough
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    That's really wonderful news!! Have a great Christmas!
    Mom to Camden Sagittal Cranio Kid
    Posterior CVR- Fearon/Swift
    Anterior CVR/FOA- Genecov/Weprin


  7. #7

    Default

    What a roller coaster of a day. but fantastic news!!!!!
    Patrick - 12/28/07

    Briefly misdiagnosed with Craniosynostosis
    Final diagnosis of plagiocephaly with 12mm of cranial vault asymmetry and a scaphocephalic head shape, probably from in-utero molding.

    Helmet Therapy Graduate! 10/08

  8. #8
    lovin' my lambdoid cutie boy! evergreenmom will become famous soon enough evergreenmom's Avatar
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    Great news- now just enjoy the holidays!!
    Kristin, Momma of two rambunctious cuties:
    Lucy born 3/05 "failure to thrive"- negative percentile on growth chart for weight 3/06 to 3/08
    Xander born 3/08 Left Lambdoid Synostosis and Chiari Malformation- Posterior CVR Surgery 2/09 w/ Dr Fearon and Dr Sacco at Medical City Hospital Dallas, TX (fought insurance and won in network gap exception) rant rant rant....

  9. #9
    Monica is just starting out Monica's Avatar
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    That's wonderful news. I can't remember if I asked you who you were seeing? We're in AZ as well.
    Monica and Tony
    Charlie - 8/13/99
    Lucy - 2/27/02
    Alexander - 4/22/05
    Florence - 11/26/07 (metopic - surgery on April 9, 2008)
    www.metopicflorence.blogspot.com

  10. #10
    Moderator Shar will become famous soon enough Shar's Avatar
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    She's seeing your NS, Monica. :o) Can't remember his name at the moment, is it Dr. Moss? H was seeing Dr. Shafron.
    Shar
    Mom to H (11/2007 ~ born with a Metopic Ridge, no surgery needed)

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