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Thread: Asger five years old, will finally undergo surgery here in Denmark on September 8

  1. #1
    line
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    Default Asger five years old, will finally undergo surgery here in Denmark on September 8

    Finally, we have a date September 8, Asger will go through his first cranial surgery. I look enormously forward to it's over.

    it's so hard, this whole case with Asger. it's the first I think about in the morning, and the last thing I think about before I fall asleep.
    And when I wake up in the middle of the night, because asger is crying and whimpering half asleep, it makes me sad, knowing that he has had to struggle with this for 5 years. without us having known what was wrong with him.
    But thankfully we can soon see an end to it all. how should I prepare myself and my family to this.
    how much do he need to understand when he is 5 years old and must go through such an operation. he needs to understand some of it , but at the same time he should not be afraid therefore I have been trying to find a way to explain, for him, why he must go through surgery.
    And it is hard to find the right approach.
    Therefore I have tried to explain to him what the problem is, and why there is a need for surgery.
    I told him that if his shoes were to small, his feet would be in pain. and it would not be good for his feet, so he gets some bigger shoes so his feet will not bee in pain, and the feet will have room to grow. I sat it was the same with the brain it has the skull which must also grow, so that the brain is not squeezed. and if it can not grow the surgeon helps make the skull bigger. so there is room for the brain to grow in.
    I told that he could not feel it, but that he would get a scar from ear to ear. and would be given medication so that it would not be painful. and he would not be able to see for a few days, his uncle is blind, so it's not something that scare him. I have said that he can listen and touch things and that we will be there and talk to him. and after the explanation, he was ok.
    and I thought he had understood enough. but he's just a small child, and also a dreamer. A few days after. he said to me, will i also get new feets, or can we just buy some new shoes. : )

    so we will just take it as it comes, and help him through this. He is a fantastic boy and I am sure he will handle it well.
    Thanks again to all you wonderful parent. who help us through the last 8 months .

    Please send good thoughts to Asger September 8 when he goes through surgery here in Denmark
    Line Bruhn Andersson

    Mom to
    Emil Gustav 28.03 01 (no cranio)
    Asger Valdemar 19.03 06 Asger has been diagnosed with Sagittal Synostosis at the age of four.
    Alfred Sejer 29.06 10 (no cranio)

  2. #2
    Mom of 2 wonderful boys! MomofJCW MomofJCW's Avatar
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    I wish Asger the best luck on Sept. 8th! He will do great. Both of Jeremiah's eyes were swollen shut by the end of the 1st full day in the hospital and he did great with communicating how he felt. He would not ride in a wheel chair the day of discharge so we walked all the way to the front of the hospital with both eyes closed. It took about 10 mins but he was happy that he accomplished it.
    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
    http://craniocarebears.org/2013/jeremiah-sagittal/

    We are on the other side again!

  3. #3
    Corrected mild metopic Monkey'sMommy has a spectacular aura about Monkey'sMommy has a spectacular aura about Monkey'sMommy's Avatar
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    It sounds like you have done a wonderful job of preparing him for the surgery. I love your comparison of shoes that are too small, and yes, I think a new pair of shoes are in order for him! We'll all be thinking of you both on the 8th. Do let us know how it goes. Good luck!
    Kristin, Chronic Lyme Disease
    Big Sister Bear 9/2005
    Little Brother Monkey 6/2009, Metopic Cranio dx at 12 mos, CVR/FOA at 20 mos.Drs. Martin and Castiglione, Connecticut Children's Medical Center (Autism Spectrum Disorder)
    Monkey's Blog: http://www.MetopicMonkey.blogspot.com

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    fitmomof2ae will become famous soon enough fitmomof2ae's Avatar
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    I love your analogy. Yes, I think he needs a new pair of slippers for the hospital too! How cute!

    I wish you the best on Sept 8. I bet he does great! He sounds like a brave boy.


    Sagittal surgery - 02/26/2009

    Second surgery suggested to correct a bump on the head and fill in soft spots.

  5. #5
    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 Line, your post brought tears to my eyes. I wish him and your whole family the best of luck.
    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


  6. #6
    On the other side again! jjmc123 is just starting out jjmc123's Avatar
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    Great comparison with the shoes!!! Try to give him something to look forward to right after surgery, a present or tv or something. That really helped Logan. We also had a bunch of care packages with us in the hospital and would let Logan open something when he had to do something he didn't like.
    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
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    Mommy to my "Little Tonka" Carmen77 will become famous soon enough Carmen77's Avatar
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    Love your explanation to him! Does your hospital have child life specialist, they are great with older kiddos and preparing them!

    Wishing you all the best.. will be sending prayers!
    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)

  8. #8
    Olismommy Olismommy's Avatar
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    Hi Line!

    I'm so glad to hear Asger has a surgery date. I know you have waited a long time for this! If Asger ever wants to talk to Oliver about his surgery, Oliver would be glad to talk. Oliver has lots of positive things to say about his time in the hospital! We will send you guys extra good vibes on September 8! Jess
    Jessica

    Mommy to
    Oliver (06/06/06) and Pearl (09/01/10)

    Oliver has been diagnosed with Sagittal Synostosis at the age of four.

    http://www.caringbridge.org/visit/oliverbakerballantyne

    http://thebeneficialbee.blogspot.com/

  9. #9
    line
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    Thank you all for your sweet words
    yes I also believe it is necessary to give him new shoes :)

    it has been such incredibly long process, with so many challenges for us as a family.
    Now we may soon see an end to it

    We look forward to being on the other side.

    Jessica, I would love for Asger and Oliver could talk together, I think they would have plenty to talk about,
    not only cranio stuff, but also their goats and chickens.
    but unfortunately he does not speak English yet.

    it's been amazing to follow Oliver, although he is far away, it is your journey that comes closes to our experience whit cranio
    it's great to follow your block.
    Last edited by line; 08-21-2011 at 01:02 AM.
    Line Bruhn Andersson

    Mom to
    Emil Gustav 28.03 01 (no cranio)
    Asger Valdemar 19.03 06 Asger has been diagnosed with Sagittal Synostosis at the age of four.
    Alfred Sejer 29.06 10 (no cranio)

  10. #10
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    [h=6]Frustrating, they just postponed Asger's surgery until Monday morning, so a few more sleepless nights. so fingers crossed for Monday, September 12[/h]
    Line Bruhn Andersson

    Mom to
    Emil Gustav 28.03 01 (no cranio)
    Asger Valdemar 19.03 06 Asger has been diagnosed with Sagittal Synostosis at the age of four.
    Alfred Sejer 29.06 10 (no cranio)

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