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Thread: spinecor

  1. #1666
    Join Date
    Sep 2005
    Posts
    195
    Hi all, I got a call today from Dr. Ouellette in Georgia. He is planning to come to Miami in June (around the 8th-9th), so I am still waiting to get her braced. Now that I've made the decision, I just want it NOW! The good thing is that we are going on vacation from May 30-June 7 (Costa Rica), so Emily will have one more vacation free of a brace. I'm sure she will be happy.

    I hope that you all can come up with a good solution for beating the heat in a brace, as I am very worried about the hot and very humid summers here.
    I just pray we can get throught the summer with no storms, as we always lose power. What a nightmare that would be.

    Gerbo, those body sleeves you posted the link for look interesting. Have you found a place in the states that sells them?
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  2. #1667
    Join Date
    Dec 2004
    Posts
    236
    Quote Originally Posted by emarismom
    Gerbo, those body sleeves you posted the link for look interesting. Have you found a place in the states that sells them?
    Hello, Coolmax is a pretty common brand, you usually can find them at sporting goods store, like Sports Authority, or Dick's; I think someone told me even Target had them. p

  3. #1668
    Join Date
    Jul 2006
    Location
    CA
    Posts
    64

    Celia's Flowers

    A little late, but Celia, your flowers are amazing,
    very pretty. I love the colors !!

  4. #1669
    Join Date
    May 2005
    Posts
    776
    Gerbo, those body sleeves you posted the link for look interesting. Have you found a place in the states that sells them?
    no, i live in the UK, hopefully Pat's reply will help you. otherwise, just do an internetsearch....

  5. #1670
    Join Date
    Sep 2005
    Posts
    195
    I have seen the Under Armor brand in Sports Authority. However, I haven't seen them in a tank top, just in short sleeves and long sleeves. Maybe I'll check this weekend, another thing to add to the "weekend list". I'm a teacher and we have 12 more days to work!!! I can't wait, this upcoming summer is MUCH needed.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  6. #1671
    Join Date
    Sep 2006
    Posts
    33
    Hey everyone:

    I've been worried about the heat issue too (my daughter was already looking flushed yesterday and we haven't even hit the real hot season around here).

    I hunted around and found the CoolMax tank tops on the L.L. Bean web site. They only have women's sizes, but I went ahead and ordered some smalls and am hoping they'll work (they'll have extra smalls arriving June 25th). They're 19$ and come in happy colors. I'll let you know if they work out for us.

    Caroline
    From Massachusetts, USA
    7-yr.-old daughter in Spinecor 9/06-10/07
    Vertebral stapling surgery done 10/07 at Shriners in Philadelphia

  7. #1672
    Join Date
    Mar 2004
    Posts
    1,138
    To beat the summer heat, we have A/C and cotton clothing is a must! During most of July we head up North and spend our time by a lake.

    Allegra/Christine,

    Thanks for the nice comments! Christine, have you tried beneficial nematodes for the grubs and Japanese beetles? Here's a link:

    http://www.marchbiological.com/L/ben...nematodes.html

    I'm a real plant collector! I'm in the process of getting two lilacs for the garden both called Beauty of Moscow and here is a picture I found on the internet: They're soooooo beautiful, huh ??? I want them now!!!!!!

    http://www.extension.iastate.edu/NR/..._of_Moscow.jpg


    *
    Last edited by Celia; 05-11-2007 at 12:24 PM.

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  8. #1673
    Join Date
    Jan 2006
    Posts
    513
    I love gardening too! As soon as everyone I am related to doesn't have a health problem, I will do more. It is something I love. I want to paint, too.

    William is 13 and his diabetes is more difficult to control now than it has ever been. Part of that is the 13 year old surge for independence, but inability to manage on his own, and stubborn desire to not be controlled by a mom. Pubery plays havoc with blood glucose, too. As a result, his HA1C was 9.5 in January, and 8.5 in April.(He hasn't been out of the 7's since the first year of his diagnosis until now. That is 9 years.)


    My mom has had a precipitous decline from frontal lobe dementia in the past 2 years. She has always been a vivacious active woman. She is only 65. She now requires constant supervision and care. She is like a toddler with her reasoning abilities. Frontal lobe dementia attacks the cognitive functions before memory. She was diagnosed with endometrial cancer today. She is already weak from her dementia, because it has affected her physically, also. She has to have a hysterectomy. If it has metasticized(sp?) I don't know if Dad will choose chemo for her or not. I hope she can recover from the surgery. She has always been the best mom ever. I am not ready to give her up.
    My dad has really suffered. He had just retired. He is young also. He is a former president and CEO of a regional bank. He now works as a consultant for the same bank. He planned to travel with mom in his retirement years. He is now a caregiver to the love of his life. That is a really hard adjustment.
    He is heartbroken.
    I spent half of last year at their home helping them. I am a homeschooling mom. Nobody has done much schoolwork! Ugh!!!!!!!!!!!!!!!!!
    That stupid house that I have been trying to move into since 2005, flooded in December, 2 weeks before our move date. It flooded half the upstairs and half the downstairs.
    I was depressed in March and April. That was the first time I had to think about the whole crazy situation. Also the first time I let it get to me. Not helpful!
    I am fine now. I have always been a count your blessings kind of girl (The alternative is not helpful, and God is always good).
    I hope I get to move this summer.

    You all have made Rachel's scoliosis bearable in the midst of other burdens. I am more than grateful for you, and I love you! I don't know what I would have done without you!
    Hugs!
    Cheryl
    Last edited by cherylplinder; 05-11-2007 at 06:03 PM.
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  9. #1674
    Join Date
    Jan 2006
    Posts
    513

    CeThe young mother set her foot on the path of life. lia's mother's day poem

    This is Celia's poem from last year. It bears repeating.


    The young mother set her foot on the path of life.
    "Is this the long way?" she asked.

    And the guide said: "Yes, and the way is hard. And
    you will be old before you reach the end of it. But
    the end will be better than the beginning."

    But the young mother was happy, and she would not
    believe that anything could be better than these
    years. So she played with her children, and gathered
    flowers for them along the way, and bathed them in the
    clear streams; and the sun shone on them, and the
    young Mother cried, "Nothing will ever be lovelier
    than this."

    Then the night came, and the storm, and the path was
    dark, and the children shook with fear and cold, and
    the mother drew them close and covered them with her
    mantle, and the children said, "Mother, we are not
    afraid, for you are near, and no harm can come."

    And the morning came, and there was a hill ahead, and
    the children climbed and grew weary, and the mother
    was weary. But at all times she said to the
    children," A little patience and we are there." So the
    children climbed, and when they reached the top they
    said, "Mother, we would not have done it without you."

    And the mother, when she lay down at night looked up
    at the stars and said, "This is a better day than the
    last, for my children have learned fortitude in the
    face of hardness. Yesterday I gave them courage.
    Today, I have given them strength."

    And the next day came strange clouds which darkened
    the earth, clouds of war and hate and evil, and the
    children groped and stumbled, and the mother said:
    "Look up. Lift your eyes to the light." And the
    children looked and saw above the clouds an
    everlasting glory, and it guided them beyond the
    darkness. And that night the Mother said, "This is
    the best day of all, for I have shown my children
    God."

    And the days went on, and the weeks and the months and
    the years, and the mother grew old and she was little
    and bent. But her children were tall and strong, and
    walked with courage. And when the way was rough,
    they lifted her, for she was as light as a feather;
    and at last they came to a hill, and beyond they could see a shining
    road and golden gates flung wide.

    And mother said: "I have reached the end of my
    journey. And now I know the end is better than the
    beginning, for my children can walk alone, and their
    children after them."

    And the children said, "You will always walk with us,
    Mother, even when you have gone through the gates."
    And they stood and watched her as she went on alone,
    and the gates closed after her. And they said: "We
    cannot see her, but she is with us still. A Mother
    like ours is more than a
    memory. She is a living presence."

    Your Mother is always with you. She's the whisper of
    the leaves as you walk down the street; she's the
    smell of bleach in your freshly laundered socks; she's
    the cool hand on your brow when you're not well. Your
    Mother lives inside your laughter. And she's
    crystallized in every teardrop.

    She's the place you came from, your first home; and
    she's the map you follow with every step you take.
    She's your first love and your first heartbreak, and
    nothing on earth can separate you... Not time, not
    space...not even death

    Happy Mother's Day! You are all great mom's and dad's(that is for you Gerbo!)
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  10. #1675
    Join Date
    Jan 2006
    Posts
    513
    Can you see scoliosis accomplishing some of these things in our children? That thought blessed me.
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  11. #1676
    Join Date
    Sep 2005
    Posts
    877
    Cheryl,

    I am really sorry for all that you are going through right now. Please know how much I care.

    Thank you for that poem which once again brought me to tears.

    Happy Mother's Day to all you wonderful Moms out there. We feel our kids' pain as our own. We would gladly change places with them in a heartbeat.
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  12. #1677
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Cheryl,

    I'm sorry to hear about your situation. My mom was diagnosed with ovarian cancer in February at the age of 63. She too had surgery. She is currently undergoing chemotherapy which she will have to take for a year. There are some days where I feel like I'm the mom and she is the child. But like you, I'm not ready to give her up or give up on her.

    I've always appreciated my mom and I've always tried to tell her that and show her that, but when something like this hits your mom, it really, really makes you appreciate her. I feel so blessed to have my mom to celebrate Mother's Day with tomorrow. There are so many people on this forum who aren't so lucky.

    My mom is my hero. She has lost both of her parents, two of her five brothers and one of her sons. She has had more surgeries than I can remember, yet she has always been there for me and our entire family. She delayed an important appointment with the cardiologist (against my wishes) to be with me while Jamie recvoered from her spinal fusion. She is fighting for her life, yet she still attends all of the grandchildren's activities. I could go on forever about my mom.

    So, Cheryl, please know that you aren't alone in this struggle with your mom or your daughter's Scoliosis. With good friends like those on this forum, family support and of course God's love, we can survive anything!

    HAPPY MOTHER'S DAY!!

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  13. #1678
    Join Date
    Mar 2004
    Location
    Maine
    Posts
    28

    bodysuits

    Christine2,

    I would like to also send a message to Rita at bodysuits.com. I tried www.bodysuits.com, but didn't seem to get to the right place.

    My daughter sometimes wears a biketard under her brace to protect her legs. This only works when we are home because she has to take the brace off to go to the bathroom.

    Anyway let me know anything you figure out.

    Thanks,
    Ann Rairdon
    Mother to 14 year old daughter
    Diagnosed with infantile scoliosis at 6 months (54 degree left thoracic)
    Boston Brace for 5 years.
    Montreal to see Dr. Rivard and Dr. Coillard 7/04 to 1/08(spinecor brace and 3 casts)
    surgery with Dr. Clements Oct. 2008 (8 staples and a hybrid rod)
    3 lengthenings with Dr. Samdani
    Scheduled for fusion with Dr. Samdani

  14. #1679
    Join Date
    Aug 2006
    Posts
    369
    Hi Ann

    It would be great if we could get a design with bike shorts. It is www.bodysuit.com (not suits) Rita can be reached at comments@bodysuit.com

    Christine
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  15. #1680
    Join Date
    Mar 2004
    Posts
    1,138
    Cheryl,

    We all love you! I'm so sorry to hear about your mom and I hope everything turns out well for her. The teenage years are a real challenge and doubly so when you have a child with medical needs. You will get through this... one day at a time. The older we get the more challenges we face and hopefully we have the wisdom and patience to get through it intact. Laughter is a great coping mechanism for me. I hope we're still smiling 50 years from now Thanks for the Mother's Day poem, it reminds me of the struggles and accomplishments we moms face in life.

    *

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

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