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Thread: No more waiting for walid !!!!

  1. #31
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    Nov 2010
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    The puppet show was so weird b/c when the therapist came into the room with the giant girl puppet wearing a halo (didn't notice it right away) I was positive they had the wrong room! I went from sobbing to laughing instantly and I could hardly concentrate on what she was saying b/c I found the whole thing hysterical and the look on Elias' face was priceless.

    BTW means 'by the way'.

    I was wondering if Walid had back/neck pain at all before the halo application. Elias was in terrible pain before he was scheduled for surgery/traction and he said it felt like a hot knife sticking through his back and it hurt him terribly when he's sneeze or cough. The traction was an instant relief for him b/c it pulled everything up and straightened him out a lot more.

    No, haven't finished my book yet, got about forty more pages to go out of 647 pages. In a way I don't want it to end b/c I'm enjoying it so much.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  2. #32
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    Oct 2011
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    kelowna
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    Quote Originally Posted by leahdragonfly View Post
    Hi Debbie,

    I have been wondering about Walid and how everything was going. Thanks so much for the updates and photos. Yes, Shriner's is an amazing place, isn't it? I am sure that Walid will become more accustomed to the halo (I am sure it can't be fun but he sure looks likes he's standing up straighter in the photo). When my daughter was in St Louis Shriner's there was at least 5-6 young kids plus one teenage boy in halos, and we would see them attending classroom, in the playroom, etc.

    You sound calm and like you're doing a wonderful job being at his side. Please keep the updates and pictures coming. We are all thinking about you both!
    Thanks Gayle,

    You certainly have been through alot of spine stuff. Glad to hear that both you and your daughter have had such recent good outcomes. Thanks for your comments, the knowledge you have is so appreciated ... this is all quite new to me. I am quite overwhelmed by all the posts but it feels so good to know that there is as much information here as I need and want. What is the future for you now ... continued monitoring and check-ups. Do either of you have any limitations now. Blessings to you from Walids' mom, Debbie

  3. #33
    Join Date
    Mar 2010
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    2,755
    Debbie,
    I just read through your story. It is incredible that your hospital put him on a waiting list. In the picture of him at the beach, I wondered if he had trouble even breathing! Poor kid. I'm so glad that you guys got to Shriner's when you did. It probably saved his life. You are a very good mother. The way you handled things and going public had to have been difficult in some respects, but it absolutely paid off! Yes, I agree with the others that it was a blessing in disguise that Walid didn't get seen at the BC Children's hospital. I wish Walid, you and your entire family and circle of friends all the best. The picture updates are wonderful, and yes, you can see progress already in this very short period of time. Imagine how tall and handsome your son will be when he's all done (he's a handsome boy already), but to have that fixed, be able to breathe and stand tall without kinking his poor neck. This is just an amazing story. You and Elias' mother I'm sure have a lot to talk about.

    Take Care!

  4. #34
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    May 2009
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    3,745
    i just looked at the video....
    if your son's spinal condition does not constitute an emergency, i cannot imagine what would!
    i am so glad you took him to Shriners!!

    jess

  5. #35
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    Quote Originally Posted by jrnyc View Post
    i just looked at the video....
    if your son's spinal condition does not constitute an emergency, i cannot imagine what would!
    i am so glad you took him to Shriners!!

    jess
    I know! If her son was being put on the back burner and she already had visits with Reilly & the Gang... there was no hope that Elias would have been seen any time soon. So bloody scary. O_o

    This is where the Net is imperative.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  6. #36
    Join Date
    Jan 2008
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    NC
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    Puppet show!

    Still one of my favorite anecdotes from the forum. :-)
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #37
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    Nov 2010
    Location
    British Columbia
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    I have to agree, it took me from despair to laughter in a few moments. It's not often you can switch like that, and especially in that situation. Still makes me laugh when I think of it; they think of everything.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  8. #38
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,551
    Debbie

    Its great to see that things are rolling along.....and that Walid is adapting to this big change in his life. I can imagine how scary it is for kids his age to have to go through this, and I see that the hospital has things covered quite well in this regard. I think that Walid is not only extremely brave, but also very lucky to have such a fantastic group of people, the people of Shriners.

    Make sure you stay strong and try not to worry. It looks like you are handling this pretty well.

    It will be amazing to see the 1st set of sagittal x-rays in a comparison view. Of course, all the x-rays through the process will be amazing.

    Thx for posting, communication helps us all.
    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  9. #39
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    Oct 2011
    Location
    kelowna
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    Cheers Ed :-} It is scary for Walid and that is why my focus remains solely on being there for him in any way that I can.

    Puppet show ... I have not had a good belly aching laugh like I did just now reading about your special puppet therapy, Elias. I have this hilarious visual of you having your meltdown and in comes the puppet complete with a halo ... it feels good to laugh to really laugh! I have to be honest I still have some anger towards those I feel are responsible; I dismiss it as toxic to my well-being but evey now and then I cannot deny it and in that moment it is intense. Don't mess with Mama Bear kinda anger.

    Thank you everyone for your support and for validating how wrong Walid's treatment in Canada has been. Thank you Jess. Rohrer01, the tragedy is that Elias and Walid are not alone ... there are others but our stories remain easily dismissed by the hospital because no one is investigating this further. How many children and families have actually found refuge at shriner's hospital ... how many kids have had dismal outcomes because their surgeries were done way past the ideal time and how many children are currently being held hostage by the waitlist??.

    Today with the traction at thirty pounds Walid's body did some serious protesting and the pain became intolerable. Team decision to back off. Plan for x-rays later this week. Cheers everyone. Sweet dreams.
    Last edited by walid; 11-09-2011 at 03:00 AM. Reason: spellling

  10. #40
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    Jan 2008
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    NC
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    Debbie I really admire your attitude and your ability to advocate for Walid through it all. He will get through this because of you. Just wanted to say, "good job." :-)

    Sharon
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  11. #41
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    Quote Originally Posted by Pooka1 View Post
    Debbie I really admire your attitude and your ability to advocate for Walid through it all. He will get through this because of you. Just wanted to say, "good job." :-)

    Sharon
    Thanks Sharon.

  12. #42
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    Oct 2011
    Location
    kelowna
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    On Tuesday it will be four weeks living in shriners spokane hospital. Today Walid and I accidently collided - one of Walid's halo screws met directly with my left eye ... little bit of a shiner - a shriner shiner!! Surgeons are pleased with his ability to tolerate the traction ... he has his times of frustration understandably but I have developed all sorts of tricks to keep him busy!! His oma and opa are coming this thursday - best medicine!! I have atttached a little movie to give you a glimpse into our days. Walid is seeing lots of kids pull through their surgeries and sees how quick they are up and about. Definitely good preparation for him of what lies ahead!! Lots of love from Spokane ... Debbie and Walid.

    http://youtu.be/9o-4dDyivPE

  13. #43
    Join Date
    Jul 2011
    Posts
    535
    Hi Debbie!

    I was just watching Walid's FB updates yesterday and am amazed how straight he is standing. He's up to 40# now?! Wowza! My surgery date got moved up from Aug to tomorrow! How are you doing in your new "home?" I bet it is a relief when Oma and Opa visit!

    Warmly,
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a new life I never dreamed of!

    http://thebionicachronicles.blogspot.com/

  14. #44
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    Oct 2011
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    kelowna
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    Quote Originally Posted by Doreen1 View Post
    Hi Debbie!

    I was just watching Walid's FB updates yesterday and am amazed how straight he is standing. He's up to 40# now?! Wowza! My surgery date got moved up from Aug to tomorrow! How are you doing in your new "home?" I bet it is a relief when Oma and Opa visit!

    Warmly,
    Doreen
    What tomorrow ... I had no idea ... this is great news ... so very happy for you. I will be sending my love over to St. Louis all day tomorrow ... is there anything I can do for you ... anytime please let me know. Doreen this is so exciting that you don't have to wait any longer. Peace and blessings - love from debbie and walid!!

  15. #45
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    Jan 2008
    Location
    NC
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    That's an excellent film Debbie! It looks like you and Walid are handling it very well and even having fun.

    Very good Mommy. :-)
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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