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Thread: CN Central: OCTOBER UPDATES!

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up CN Central: OCTOBER UPDATES!


    ((((((Hugs To All)))))) ~

    I know that everyone is busy with Fall ~ the start of school, the impending holidays, the end of summer. And each of you have so much happening in your lives right now. But I will continue to open an Update thread every month, so that you have a ready-made place to post, should you have a moment of free time.

    We ended September with two surprising discoveries:

    1. Our pharmacy of 40 years is closing; we need to find a new pharmacy for Jon's seizure meds. No warning. Jim picked up Jon's meds last week and was told they are closing on Oct. 1 (today).

    2. Jon's nursing service is reorganizing again ~ Jon's current nurse, who has been with us for about 7 months told us that she is being reassigned, but assured us that she won't leave Jon. Meanwhile, Jon's former nurse of 8 years is being reassigned to our area.

    This is good news knowing that both nurses will be available to care for Jon.

    Jon's primary problem these days is lymphedema. His left foot blistered from the excess fluid in his leg. Fiercely red and raw, seeping. We have treated it with Witch Hazel, and it is improving. Of course, this is an ongoing, never-ending process, because there is no cure for lymphedema. The goal is fluid management.

    Jon's current nurse visited yesterday to change Jon's catheter, and Jon's urine output has been incredible these past few days. His SATS were 99!!! We were all stunned and thrilled! With the fluid off of his lungs and heart, he was breathing perfectly.

    Not so today, the first of October. SATS are 94 again, which is quite acceptable. Urine output has slowed way down.

    Imagine an hourglass, which you must keep turning so that the sand is equal on the top and the bottom all of the time. That's lymphedema.

    Jim and I are contending with "Things that Happen to Senior Citizens." But, we're managing and functioning.

    I know that it's Fall, but if you want to get away and pretend that there are no seasons, only ocean breezes, then join me here ~



    Your chaises and smoothies are waiting ~



    Love & Light,

    Rose
    Mom to Jon, 47, (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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    rose so good to read an update. I hope to read some more updates from others. Hopefully you can find a pharmacy nearby, I'v come to know our pharmacists quite well so I know I'd miss them all if they closed up. I hope you can manage the lymphedema sounds like a full time job!
    It's been very busy here. Kathleen is back to high school and doing very well. Along with some assistant assignments she is doing some cooking, laundry, academics (science is still her favorite), and reading to a classroom of children who can't read. She's been healthy and getting to school everyday. We had just one scare last Sunday. Very suddenly I heard her crying in her bedroom. I ran to the room, she was crying so hard she was shaking. With all she's been through I'v quite honestly never seen her cry so hard.Her face was turning purple and her whole body shaking. When asked what was bothering her she pointed to the side of her belly (right side where her mic-key button is). I thought there was maybe something wrong with it. I got hold of my husband who came right home. By the time he got there she was complaining about her left leg and foot. It appeared to have tightened up and very pale. It looked like a muscle spasm. She continued to cry harder than I'v ever seen her as I rubbed and applied heat to her leg. then I felt her head and she was burning up. Took her temp. and it was almost 104. I've never seen her run a temp this high, she's usually low. I came close to calling 911. I had no idea what was causing her so much pain. Gave her tylenol and she calmed down and as the night went on her temp. was gone. She's been fine ever since. Crazy! Hopefully a one time thing. Yesterday she played football. We're already enjoying the many many apples available! I think Fall is my favorite!
    My son is coaching a 3rd/4th grade football team so we've been going to watch those games on Saturdays. It's wonderful to see him coaching, he played from the time he was 6 till he was a senior. He's really wonderful with children and is enjoying it.
    My oldest is getting used to her new home she bought over the summer. She's got it all furnished and looking very nice. We're planning a mother daughter movie/sleepover soon.
    I do love fall but those chaise and smoothies look very inviting and relaxing to sit and watch the beautiful fall leaves change from green to red,yellow, and orange!
    Prayers for good health to everyone!
    Mary Grace

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up

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

    What a scary episode with Kathleen! It's so upsetting when we can't figure out where the pain is, or what the cause is for the distress, I know. I'm so grateful that the pain subsided and that Kathleen is fine now. Her school activities sound varied and interesting, and are tapping her interests and skills. That's wonderful, but the best part is that she is well and able to attend every day.

    Football must be big in your family (ours too), and I'll bet your Saturdays are fun watching your son coach the youngsters in their games. A Mother/Daughter sleepover in your daughter's new home ~ more fun. You are truly blessed.

    Just for you, we will bring the chaises and smoothies to your neck of the woods this month! I would love to sit and admire the gorgeous leaves and enjoy the crisp fresh fall air, and consume all of the delicious goodies you're making with those apples! The aroma from your kitchen must be enticing!

    Thank you for updating!

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Small update which is that the woman with the stroke "L" (Not her real initial) that I posted about a few threads ago has a rare metabolic disorder which caused her fainting spells and indirectly led to her stroke but she is now on a road to recovery and progressing well as my teacher did. I'm also doing some interesting work privately with disabled and met some amazing people.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Another small update! I finally got a motorized scooter after years of searching for one that was appropriate! I had no idea what I was missing. I love scooters now!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((funnylegs4)))))) ~

    Great news that L is improving! And congratulations on getting your scooter! What kind did you get? I'm excited for you!

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    Great news that L is improving! And congratulations on getting your scooter! What kind did you get? I'm excited for you!

    Love & Light,

    Rose
    Thanks! I may speak with "L" again next week. My scooter is this one http://www.qvc.com/EV-Rider-Automati...sc=V34516-ISRC EV Rider self folding model. One of my best decisions as of late! I needed the automatic folding because I would have had trouble folding a scooter by hand.
    Last edited by funnylegs4; 10-09-2016 at 02:23 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    I got confirmation on something related to my films so you may see a blog post about it next month or the month after.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Hi Everyone,

    Since a lot of the mom's here have experience with seizures I thought I would post this here too. So today I met somebody really cool who has epilepsy. She told me what her seizures felt like which involve drooling and tingling. I realized she was describing a partial seizure and she was impressed I knew what a seizure was and what type. I may end up working with her so I just wanted to know some stuff about partial seizures. What do they look like??? I remember seeing my teacher's eyes roll when he was dizzy, and if seizures look anything like that I want to prepare myself so I don't scream if she has one in front of me. Is there anything I can do to help her during a partial seizure?? I read basic stuff online already and will DEFINITELY ask her too but I was just curious as to what your advice might be? What do you do for post seizure fatigue? She said she has fatigue after.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((funnylegs4)))))) ~

    Simple and complex partial seizures can manifest in a variety of ways. It is best if you ask her what she wants you to do for her during and after a seizure, because there is no one right way to respond, other than to make sure that she is not in danger of falling or aspirating.

    Epilepsy.com has very helpful information about all seizure types. Here are the links to simple partial seizures and complex partial seizures:

    http://www.epilepsy.com/learn/types-...rtial-seizures

    http://www.epilepsy.com/learn/types-...rtial-seizures

    Michael's partial seizures were absence/staring, which later progressed to hour long tonic clonic (convulsing/grand mal) seizures.

    Jon's partial seizures are a mixture of staring, facial grimacing, fixed, dilated pupils, hand and shoulder twitching, drooling, as well as automatisms (pulling at his G tube or trache or his shirt or sheet).

    Regardless of the type of seizure, we always stay close, comfort and reassure ("it's okay, you'll be okay, we're here, we love you," etc.), and ensure safety.

    There isn't much you can do about post-ictal fatigue, except to make sure that she's in a comfortable place (a chair, a sofa) and that she's allowed to rest and recover for as long as she needs.

    It's important that you remain calm and keep your focus on her. Seizures can be frightening to observe, and we often feel helpless. But she's going to need you to be calm.

    You might ask her about the frequency and duration of her seizures, so that you have a benchmark to judge whether she's in trouble while seizing (lasting longer than usual or having different manifestations than she's described to you as typical). If possible, note the time of the seizure onset and when it subsides, so that you can inform her of its duration.

    Ask her whether she has auras, or senses the onset of a seizure, so that she can warn you. Ask her whether she has memory of her seizure, when it subsides. Ask her whether there are specific triggers to set off her seizures, so you can help to avoid them.

    The more you know about her particular situation, the better prepared you will be to help her with it. I would imagine that she would appreciate your questions, interest and willingness to help her.

    I think that it is wonderful that you are meeting people with various neurological conditions, expanding your awareness and understanding. All of them are informing your work, your breadth of knowledge about disabilities, which will be reflected in your storytelling and your films. There is a reason for everything, and I strongly believe that this is the reason you are meeting people with various disabling conditions.

    Love & Light,

    Rose
    Mom to Jon, 47, (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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