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Thread: No more waiting for walid !!!!

  1. #16
    Join Date
    Jul 2011
    Posts
    535
    Debbie, do you have other children?

    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/

  2. #17
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Welcome. I am glad that your son will be getting the help he needs
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  3. #18
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    I wish I lived closer so I could come to Walid's party! I'll be thinking of you guys though and post some party pics okay? As far as packing for Walid goes, he'll mostly just need really comfy sleeper pants/sweat pants, underwear, either a pair of slippers with rubber soles or those type of socks that have little rubber thingies on the bottom so he doesn't slip as those floors at Shriners are spit polished, lol. Since Elias was in traction 24/7 I brought him button-up flannel shirts b/c it would have been difficult to pull anything over his head. With Walid only being in traction half time, maybe that won't be an issue. I'd also take along comfortable blankets (I like down b/c they're warm and light) for both of you and favourite pillows too. Not sure if Walid is much of a reader but books are a great idea although Elias did say with the halo on it wasn't as comfortable to read b/c it was a strain on his eyes. I read my books though. Anything that you forget or need can be bought in Spokane.
    Last edited by Elisa; 10-24-2011 at 12:05 PM.
    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

  4. #19
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,551
    With planning, you can forget just about everything like myself, and then buy when needed when down in Spokane. Pictures are important, I donít have many of my back pre-surgery. Once they operate, thatís it.

    Linda has a great list on her site just in case you have not seen it.....
    http://www.scoliosislinks.com/PreparingforSurgery.htm


    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

  5. #20
    Join Date
    Oct 2011
    Location
    kelowna
    Posts
    22
    Quote Originally Posted by Doreen1 View Post
    Debbie, do you have other children?

    Warmly,
    Doreen
    Yes Doreen I do ... my daughter is nineteen. She is great, she keeps me grounded. This has been hard on her too, she cries when I mention anything about the surgery but of course never in front of Walid.

  6. #21
    Join Date
    Oct 2011
    Location
    kelowna
    Posts
    22
    Oh yeah slippers ... that is a great list that you passed on Ed. Wow what a great collection of people that really support each other ... i am blessed. And like you say Carol whatever we don't bring we can get in Spokane. Walid is very excited and busy with last days at school, his clubs and of course now the party. I had just put some clothes out for his suitcase and i come home everthing already packed. Everything will be perfect.

  7. #22
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    How are things going with the party prep and other things?
    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. #23
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,551
    Debbie,

    Is it party time? I could use a cocktail right now.

    When are you guys off for Spokane?

    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. #24
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    It is party time Ed but since we both live too far away from Walid, we can have our drinks at our own home. ;-)

    http://www.chbcnews.ca/video/shriner...76#top+stories
    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

  10. #25
    Join Date
    Oct 2011
    Location
    kelowna
    Posts
    22
    Hey, hey... too bad you guys weren't at the party for sure. The last thing I should have been doing is having a house full of guests the day before the trip to Spokane but clearly it was a worthwhile sacrifice for Walid. He was the main attraction and shone with all the attention.

    The next day he woke up to tell me "That was the best day ever Mom". I really relaxed as well especially by the end of the night ... sipping wine with my best buds into the wee hours of the morning might not have been the smartest thing to do before a big trip but surrounded by their love and support I just sat back and felt blessed. The morning was a bit of a scramble making sure everything was packed and all the last minute stuff arranged. Thanks again for the great list of things to pack, Ed. I had a bit of a race ahead of me knowing that my car lights were not working (only high beams, yikes, just for emergencies); enjoyed a beautiful drive with fabulous scenery and mister chatter box filling the time with his bazillion questions, we cruised into the hotel parking lot just at dusk.

    Next day at Shriner's Spokane was a lot of pre-admit business and Walid ended the day with an invitation to the Halloween party ... what a great welcome ... trick or treating through the whole hospital; everyone dressed in costumes and lots of candies.

    This definitely paved the road for the halo surgery the next day. Unfortunately it was a bit of a gong show in the morning when the hotel missed our wake-up call. Luckily my internal alarm clock was working and when I opened my eyes to see the glowing light of 5:31 I shot out of bed and started packing things up including Walid in record time. Me looking like godzilla, we arrived at the hospital just before six. Walid was definitely scared and nervous waiting for surgery but he had developed a trust that Shriner's Spokane really cared for him and he cooperated like never before in a hospital setting - mom was relieved especially with the memory of the need to call code white just weeks earlier when Walid refused to cooperate and drink the sleepy juice before his MRI and had to be held down for a shot that immoblized him in a few minutes.
    DSCF5208.jpgDSCF5212.jpg
    I experienced quite the shock when he appeared about an hour later with his halo; not looking very angelic. It actually looks quite barbaric but the difference it has made in Walid's back already is worth it (he does not agree). His head is not thrust forward as severely and the stooped over stature that I have come to accept in my growing boy has already been altered by the weight of the traction pulling him upwards. Walid is definitely not keen on the whole thing but who would be. The halo is awkard, the weight of the traction takes it toll cauing pain and discomfort, and the liimitations this has put on him are difficult to accept. My focus and concentration is centered around him totally ... listening to him, supporting him, finding as many ways as possible to bring laughter and joy into his day. Started at five pounds and up to twenty-five as of today ... thirty tomorrow.
    DSCF5267.jpg003.jpg
    What a great hospital and what a caring expert team ... from the housekeepers to the physio, from the volunteers to the surgeon, the nurses the amazing nurses ... everyone is united in their mission to make the hardest times for these kids the best under the circumstances. I am constantly surprised as to how great they truly are!! So we are here for the long haul ... surgery is planned for February. I have some interesting videos posted on Walid's facebook page - no more waiting for walid- but have not been able to download them here. Later this week we will be getting some x-rays. Best news yet is Oma and Opa are planning on coming for a visit!! Thanks for your support ... will keep you posted with his progress. Cheers Debbie
    041.jpg

  11. #26
    Join Date
    Jul 2011
    Posts
    535
    Morning Debbie!

    I've been watching your facebook and love all the pix and videos. Thank you for sharing your and Walid's journey with the world. Continued prayers for you both.
    :-)

    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/

  12. #27
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161
    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!
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  13. #28
    Join Date
    Oct 2011
    Location
    kelowna
    Posts
    22
    Quote Originally Posted by Doreen1 View Post
    Morning Debbie!

    I've been watching your facebook and love all the pix and videos. Thank you for sharing your and Walid's journey with the world. Continued prayers for you both.
    :-)

    Warmly,
    Doreen
    Thank You Doreen ... the facebook page has been great for Walid. He gets encouragment from the posts and comments. With his developmental delay he he has a hard time accepting what is happening at times. We are sending our love and prayers to you as well ... as you endure your own wait. Any news? Waiting is difficult ... are there things you find help. If there is anything that I can do let me know!! What kind of things do you like to do? Love Debbie.

  14. #29
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Good to hear that Walid's head is feeling better. Yes, the halo definitely looks barbaric and when I was first told that Elias would have to wear one, I had a total meltdown at the hospital and they called in a therapist for me with a puppet show and all, lol. It is a much gentler way of stretching the spine out than just cranking it though. The traction felt great for Elias b/c he was so twisted up that he was in a lot of pain and the traction along with the spinal release (first surgery) got rid of his back pain but his neck was really sore from all that pulling so he had a fair amount of Valium to relax his muscles. Did Walid ever complain of pain btw?

    Edit: Oh, and I can see already that Walid is looking to be more upright.
    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

  15. #30
    Join Date
    Oct 2011
    Location
    kelowna
    Posts
    22
    You just crack me up Elisa ... breakdowns are necessary at times and can be therapeutic ... free puppet show!! Now what does btw stand for ... ie Did Walid complain of pain btw? You are teaching me so much of this computer lingo. He does beg me at times to take him out especially by the end of the day. In talking with the surgeons today they feel some short breaks are vital to ensure that we continue to have walid's cooperation. He is quite a trooper and does find joy in the smallest things. Last night a patient that is going home tomorrow after being here a month came into our room and hung out for awhile. It was so cool how she interacted with Walid and encouraged him. I am meeting some wonderful people. Wow so blessed. Walid is asking for tylenol quite a bit which does not seem like a big deal but Walid never takes anything for pain and so him asking for it indicates it must be uncomfortable. The pin sites look good but one of them is really painful when I clean it. Talk to you soon. Finished your book yet??

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