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Thread: Feeding Frenzy

  1. #31
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    Oh Rose, I normally use bad language. I really don't. But boy, I feel like turning the air blue when I read what you have to go through to get your essential life support supplies for Jon!!!! I just cannot believe how difficult it is to get the life sustaining basics. It's not fair. Well, at least there was British humour. That is wonderful, thank goodness for the Python lads! I really hope you get this new hassle sorted out soon and I send my love and hugs. xoxo I sure don't know you keep your sense of humour!!!!
    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


  2. #32
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Done Deal! Crisis Over!

    ((((((Donna))))))~

    My dad was a sailor in the Navy, my grandad was a police officer, and my husband is a Brit. Let's just say that I've been exposed to a wide ranging variety of colorful language.

    And let's just say that at times during this crisis, the air in our home was the color of TyDBol toilet cleaner. Quite blue.

    You're absolutely right that it isn't fair to Jon or to us as his caregivers that his essential needs are denied. But the most horrific thought is those patients, who don't have a Rose and Jim to fight for them or to fill in the System's gaps. Those people are the ones, who desperately need the System to work, and at its current rate of decline, based upon my experience, the System is going to cause harm, injury, illness, and death to those people.

    That is more than unfair. That is criminal.

    UPDATE

    Today, we gave the suction canister and "connectors" a trial run. It works. Not as effectively as the DeVilbiss, of course. We'll see how it goes. Meanwhile, I'm ordering DeVilbiss canisters on line.

    To wrap up the "Feeding Frenzy" aspect of our saga ~

    The pharmacy liaison called and left a message today that tomorrow, 8 cases will be delivered to our doorstep of Vivonex formula in 1500 ml bags!

    I guess that N E S T L E S is back in B U S I N E S S! (Sing it, my friends! )

    Yay! Now I can start the new year working on toning my arms, lifting that hefty bag up the pole! But it sure beats running out, because you forgot to add a box, and re-priming the beast again! YAY! Convenience! YAY!

    Humor ~ is my coping tool, my saving grace, my crisis diffuser, my tension reliever, my way of relating to and helping others.

    For my on line grief column (and some day, my parental grief guide book), I researched tears and laughter. Both are physiologically, as well as psychologically, beneficial. I didn't know these facts during all of those years that laughter and tears helped me through my life. But it made total sense to me, since I'm still standing. I'm still laughing and crying every day.

    Sometimes I step outside of my life and imagine it as others might see it. It's like a movie ~ a drama, a tragedy, a comedy, a romance, an adventure, a mystery, an educational documentary all rolled into one unending epic saga. And that makes me laugh. I think, "who would ever believe it?!" I have lived it, and even I shake my head in disbelief!

    Humor has kept our marriage in tact. Jim and I have an established banter, and we laugh often. Sometimes it's hard to find humor in anything, so we search for it.

    Humor is a life boat in a turbulent sea of stress. It is my first line survival mode. And, so far, it seems to be working.

    So here we are now, with respiratory supplies and formula. I can't reclaim the time and energy these issues unnecessarily stole from me. So I will look forward, and remember that nothing is ever a sure thing. And that will help me to be prepared for anything.

    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.

  3. #33
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Whew! So glad you have the supplies!! :) And....I was singing that nestle line in my head as I read it...even before I got to the part where you said to do it....LOL!!

    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!!

  4. #34
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa)))))) ~

    Advertising.

    It works.



    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. #35
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    YAY! Nestle pulled through! So happy for you guys!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  6. #36
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    Rose - I am so happy that things are getting better for you. YOU, Like myself are like dogs with bones, do not try to take them away and when it is our children, we WILL move heaven and H*** to make it happen. You have my respect. I will pray that things get better for you and Jon and your family.
    Blessings
    Alex44
    Skypilot

  7. #37
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4 & Alex44)))))) ~

    Thank you so much.

    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. #38
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4 & Alex44)))))) ~

    Thank you so much.

    Love & Light,

    Rose
    You're Welcome Earth Mother!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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