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Thread: Daughter's upcoming hip surgery - need advice, opinions, anything ))

  1. #21

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    stupid thing won't let me edit or delete.. will get back later
    Last edited by jul97; 04-23-2013 at 05:01 PM.

  2. #22

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    Thank you, Rose! I know your family has to deal with serious medical issues, considering Jon's condition, and weight, daily, so I've no right to whine! And I applaud to our husbands - I know God doesn't give us more than we can bear, but without them.. We're truly blessed!

  3. #23
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    I'm sorry Sonya has an infection. Please keep us updated on how the surgery goes when it does happen and I will pray for you. Your friend's adopted child is beautiful.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. #24
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tina & Sonya & Daddy))))))

    Oh my goodness, Tina! You've not done any whining!!!

    I was attempting to convey my empathy for you, as I've been in your situation (or similar) many times with both of my sons. I truly understand (as we all do here) how stressful everything is, so that you know we are in the boat rowing with you.

    My husband literally drove up to my front door to transport Michael to school. Prior to meeting him, I was a single Mom for 12 years. When we met, my boys were 21 and 22. And the timing of Jim's appearance in our lives was Heaven-sent, because I could not have managed caring for my boys on my own through their adulthood and numerous hospitalizations. One of Jim's favorite lines to me is: "I'm here to help you."

    I'm so happy for you and Sonya that you have a loving and helpful husband.

    How is Sonya responding to the antibiotic? I hope it's clearing up and that she is doing well.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  5. #25

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    Thank you, funnylegs, Rose, Lisa, everyone! )) We're doing so far so good - the infection seems to have cleared, started new rounds of tests, doctors' appointments this week (only valid for 10 days before the surgery), the new date is set for May 17 - Sonya will turn 10 yrs old this day - hmm, hope this is a good sign? I'll keep you updated, maybe not immediately after the surgery since I only have computer (and Internet) at the office at the moment.
    Funnylegs - yes, my friend's new daughter is beautiful - met her the other day - she's beaming, eager to fly to the US (hopefully this week) to have the whole new wold open to her!
    Rose - so happy Jim drove up to your door one day And I do believe he's God-sent!

  6. #26
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    I hope the surgery went well if Sonya had it and I hope your friend's daughter gets to fly to the U.S soon. That is so exciting!!!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  7. #27
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tina & Sonya & Daddy))))))

    Thinking of you and praying that Sonya's surgery went well and that she is recovering nicely. I'll be looking forward to your update, when you're able. I suggest that you start a new thread, so we'll notice it right away.

    Healing prayers on their way to you ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  8. #28
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    I just re=read all the posts here and looked at the dates. Gosh, I hope and pray the surgery went well. I hope your sweet Sonya didn't have too much pain or spasm. Thinking of you and sending you and your daughter very gentle hugs.... Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  9. #29

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    Dear community friends,
    Thank you for all your support and prayers!! We were discharged from the hospital last week and this is the 1st day I’m back online – Sonya had surgery on May 21st – they did adductors myotomy, Achilles tendon reconstruction on her right leg (equinovarus, monoplegia) and Strayer procedure on her left leg, all in one go. The surgery itself went well, without any complications, and her immediate recuperation was OK (they kept her in ICU for the first 24 hrs to monitor and forestall any possible problems), but what comes after that.. like I feared, we had issues related to her post-surgery monitoring – when the doctors changed dressing on her stitches (on the 3rd day), they discovered pretty large necrotic patch on her right leg, pretty bad pressure sore on her left – I understand it’s not the doctors’ fault, since Sonya’s right leg is paretic and has poor microcirculation, but I have issues about her follow-up once the problem was discovered – the doctors simply removed the cast from her right foot and then were basically helpless – we as parents had to use our skills and intuition to make things better. The staff was very friendly, but since our 2nd surgery (pelvis/femur reconstruction) will be much-much more complicated I don’t think this plus our intuition and knowledge will be enough to deal with any post-surgery complications which are bound to happen. Just one incident that tipped the scale in favor of looking for other options – me and my husband noticed that Sonya’s heart rate was elevated the first few days after the surgery (120) –called the doctor on duty, he inquired about her normal heart rate (100), and didn’t consider the ‘20’ additional bpms significant enough to take any actions about it, he just.. left and we were left to our own to use our intuition, again, and to realize that it was the indicator of pain Sonya was experiencing and to up her dose of pain killers (which, again, we were left to our own to chose from). We were told by our friends from the US later that the connection between the elevated heart rate and pain is obvious, well..Maybe I’m being idealistic, I realize that the state of our children with multiple disabilities is first and foremost our responsibility, but at least we’ll be bound to receive adequate post-surgery monitoring. So, we’re now looking for Shriners hospital to apply to – why Shriners – they are known for their orthopaedic achievements and, hopefully, they still offer free surgeries even to international patients. The other thing is that Sonya’s surgeons now rush us into the 2nd surgery right away – we go back to the hospital to have her cast removed on July 4, and, provided there are no additional pressure sores under the cast, they want to do the 2nd surgery (osteotomy) in a few days after that – it seems a bit too radical to me – I understand their reasoning but I don’t think it will go well with Sonya – she’s a tenacious, resilient child, but her resilience has its limits, so I’m wondering now if we can afford a few months break before the surgery (there’s a waiting list at Shriners like everywhere else) or we’re just making matters worse. Also, we’re wondering now to which of Shriners hospitals to apply to – some of them are known best for spinal injuries, some for burns’ treatment, cleft palate, etc. We’ll be grateful for your insights. I hope this post of mine is not too terse or gloomy, it’s must that we need to move quickly, and I don’t want to degrade our surgeons or medical system, no way, the surgery itself was tops, they’re very skillful, but with a child like Sonya (well, with any child) we need to have excellence in everything. Thank you!

  10. #30
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Sorry to hear things are not going too smoothly. ((((hugs)))) I am from the US, but I don't know much about Shriner's except what you already had in your post. I hope someone else knows more about what location would be best for your daughter. Sounds like your faith in your surgeons is not too great. I would go with your gut! Doesn't hurt to explore other options....better to do that than have regret later on. I pray her sores heal fast and she does better at home!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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