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Thread: CN Central: FEBRUARY UPDATES

  1. #11
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    ((((((Hugs to All)))))) ~

    funnylegs4 ~

    I'm sorry to hear that "L" had a stroke. The possibility that "L" is in hospice care seems to be coming third hand, so the veracity of whether she "might be" in hospice is potentially questionable.

    Hospice care is typically given to patients, who have an "end stage" disease or condition, with a prognosis of less than 6 months to live. A Palliative Care patient is a person, who has a condition or disease, which will result in death, but is not in the end stage. Jon is a Palliative Care patient.

    Those, who are unfamiliar with these terms and the different levels of home care, might misinterpret that full time assistance, acute care, and home health nursing equals hospice. "L" may be receiving home nursing care to help her recover, and not to make her comfortable during the process of dying, which is the primary purpose of hospice.

    "Why the hell is everybody around me having strokes???"

    As we age, and our circle of associates, acquaintances, and friends expands, there is a greater chance that we will experience ironic events.

    In 1989, every month, someone I knew or a loved one of someone I knew died. Every month. Two of Jon's classmates, two of Michael's classmates, Michael's aide (who was murdered), my mother, my grandmother, the man, who sold me our new carpet, a dear friend's friend ... it was bizarre. It was one funeral after another, after another, after another ...

    I felt like I was cursed. Then, i realized that their deaths were my life lessons. This was the year, when I would learn everything about death to prepare me for losing my children.

    For some reason, unknown to you now, you're learning about strokes. Every experience we have is a life lesson.

    I pray for healing for your teacher and for "L" and for wisdom and understanding for you as you follow your path.


    Tamie ~

    How is Tyler? What's the latest news?

    Healing prayers continuing ~

    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.

  2. #12
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    We've all come down with a nasty upper respiratory virus. On top of that Tyler is back on Keflex for an e-coli UTI, and he is still shrieking from whatever is causing him so much distress. It is endless. Poor kid really needs a break (we all do). Thanks for asking.

    Are you guys staying healthy this winter? I really don't like this time of year. Spring and summer - hurry up!
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  3. #13
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    UPDATE: "L" actually just has a nurse helping her while she recovers from the stroke. Her family lives too far away to help her so she has to have a nurse. Apparently the word "hospice" got used in a lost in translation moment by mistake. She's at that stage my teacher was at in November where she's weak and has to rest. Pray that she progresses in her recovery as my teacher did. My friend told "L" she loved her and that made "L"'s day!

    Rose,I think you are absolutely right! I'm so sorry you have witnessed so many deaths in your life. That's heartbreaking but I'm glad you learned from it. I'm learning a hell of a lot too!

    Tamie,so sorry you are all sick! Weather is cold here but could be worse.
    Last edited by funnylegs4; 02-14-2016 at 08:19 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. #14
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    ((((((Hugs to All)))))) ~

    Tamie ~

    I'm so sorry that you all have an upper respiratory virus, and I will send healing prayers for all of you to improve quickly and that it does not progress. I worried about you potentially picking up something from Urgent Care and the doctors' offices. And an e-coli UTI too? Oh dear. Yes, you all very much do deserve a break, and I'm praying with all of my might for that break to come for you soon. Try to take good care of yourselves. We send our love.

    funnylegs4 ~

    As I suspected, home care was mistaken for hospice. That's common among people, who aren't familiar with illness and recovery. I'm glad that "L" is receiving the care she needs at home, and I'll pray for her full recovery.

    Well, yes, I have witnessed many deaths in my lifetime. Those were just from one year. All of my elders have passed, and now I am an elder. That's the circle of life. Whereas, losing Michael goes against nature, as our children are supposed to outlive us. I have learned so much on my grief journeys about life and death.

    Prayers for "L's" healing and for your teacher's healing, and for 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.

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    funnylegs, I'm so so sorry to hear about "L's" stroke! Praying that she will recover quickly and completely. Keep us posted.
    Tamie, Wow you guys sure do need some healing prayers. I will send all the prayers I can for complete healing.

    We've been pretty busy... I had to cancel Kathleen's neurology appointment since we both had a little cold (not a good place to bring our germs into) So it's now March 1st. I'm assuming I would have heard if the MRI wasn't good. so I'm not really worried. This week is Kathleen's winter vacation. It was extremely cold over the weekend so we really didn't leave the house. Wednesday was her follow up at Shriner's and it went extremely well. Xrays looked great. We go back in 6 months. After her appointment I drove my husband and Patrick to the airport. they're in Florida visiting MY husbands sister for a week. then I drove Kathleen and I to my sisters house for a sleepover. Our uncle passed away over the weekend and we had a wake Wednesday night and funeral early Thursday morning. It was of course sad but we saw so many relatives that we haven't seen for a long time. Kathleen came with me and as always brought smiles to everyone she met and got so many warm hugs which she loves. Today I take Kelly(my oldest daughter) in for outpatient surgery she has had a pianadel cyst for several years and she's finally getting it taken care of.
    Healing peaceful prayers for everyone...
    Mary Grace

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    I wanted to share a couple pictures of Kathleen and my sister's dog Munson. He never left her side while we were there. He snuggled her so gently.
    Mary Grace
    Sorry can't get rid of this one LOL
    Last edited by mg12061; 02-19-2016 at 06:44 AM.

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    I wanted to share a couple pictures of Kathleen and my sister's dog Munson. He never left her side while we were there. He snuggled her so gently.
    Mary Grace

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    ((((((Mary Grace)))))) ~

    I'm so very sorry that your uncle passed away. Sending prayers for peace and comfort for you and your family. Being together during such a difficult time is healing, and I know those hugs helped everyone.

    And I'm sorry that you and Kathleen have had colds. I hope you're both on the mend now. Great news about your Shriner's visit.

    How is Kelly? I pray that all went well with her surgery and that she is relieved of pain and recovering completely.

    Wonderful photos of Kathleen and Munson (is he a labrador? such sweet dogs). When I showed the photos to Jim, he said, "Munson knows that Kathleen is very special." Indeed. Munson feels Kathleen's unconditional love, her purity and innocence. He probably also wants to protect her. Dogs are exceptionally intuitive.

    Safe travels for your husband and Patrick, when they return from Florida.

    Thank you for keeping us updated!

    Be 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.

  9. #19
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    Rose Thank you for he prayers... I know the hugs and Kathleen's smile was extremely comforting at a difficult time. Munson is very protective of Kathleen when we're there. He is a big dog but so gentle. He is a labrador. We've had many encounters with animal who really took to Kathleen. I remember when she was about 4 we were at a small local petting zoo Kathleen found a baby deer sitting in a corner. She sa down and started petting it. The owner came to us and gave Kathleen some pellets to feed her. He said that they named the baby deer Grace and that Grace didn't let anyone near her or feed her. I think he got chills when I told him Kathleen's last name was Grace. She sat for a long time feeding and petting Grace. I'll have to look up the picture of this and try to post it. We have a cat who hates everyone except Kathleen. Kelly's surgery went well and she's doing pretty good. Some pain but manageable. Rich and Patrick are enjoying their visit. I"m so glad they were able to get a guys week away. we're not hating our girls week together...
    Kathleen goes back to school tomorrow.
    Mary Grace

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    Last nights pain episode lasted an hour (took a 3 minute video to show doctor)and it was the 3rd one of the day. Tyler's heart rate stayed in the mid 120's; blood pressure tanked to 76/45; temperature was 100-101. Soaked in sweat. Shrieked until he coughed and choked on the mucus he dredges up. If he keeps this up he is going to aspirate or simply burn out. We can only give him so much Motrin and Diazapam. I just emailed his doctor to see what can be done and will hopefully hear from him in the morning, cause this can not continue. He has had at least three episodes today and it is only 2:30. Can hardly wait for tonight. This has been going on now for 37 days with no improvement.

    Mary Grace, my condolences for your loss.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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