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Thread: CN Central: October Updates

  1. #51
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    Tamie, I'm so sorry to hear this. What a scary time for all of you. Watching dr.s work so hard an see so many things going wrong is just and awful place for anyone to be. Praying that he stabilizes and doesn't have to go back to the hospital. Keep us posted. I hope you're able to get some rest and take care of yourself.
    Rose, Praying for more poop and no seizures! So glad you were able to decorate.
    funnylegs, I will take a look at your link when I get some free time thanks!
    Mary Grace

  2. #52
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    I'm sorry that you got bunged up too! It is quite uncomfortable to be constipated, and thank you for your empathy toward Jon, as you suffered with your own issues.

    Today, he did produce a few nuggets on his own, without any intervention, so we give lots of thanks for that gift! He's tired though, as he had insomnia last night and only slept for 3 1/2 hours. So, now we're on seizure watch. We're praying that he falls asleep early tonight.

    I finally got out our Halloween decorations, such as they are, and decorated Jon's and Michael's rooms. Took down summer decorations and put up fall decorations. A bit late on that, but it's done now.

    I've been having internet connection problems with Time Warner, so I haven't had a chance to visit your link. I will try as soon as I post this, because I wanted to respond to you before we lost our connection again.

    Edited to add: I was able to read your blog post. What a great experience for you and your audience. Honest questions too, which really opens up the dialog. You are doing great things with your films and with your presentations. Success! Celebrate! I'm so proud of you!!!

    HAPPY HALLOWEEN TO ALL!



    Love & Light,



    Rose
    Thanks Rose! I drank a lot of water and finally "went". I'm glad Jon produced some himself. THANK YOU SO MUCH!!! Yes I am purposefully trying to start honest dialogue. In my humble opinion above all we need honesty or we are not going to get anywhere with disability or race relations etc. I am now communicating with a young disabled girl from that screening who wants to be a director herself. She wanted pointers etc which I was happy to give her. I always celebrate everything related to my films! Glad you got your Halloween decor up.

    HAPPY BELATED HALLOWEEN EVERYBODY!!! I had a nice Halloween. I met up with a few friends,handed out candy to trick or treaters and stuffed myself with junk food LOL.

    Tamie, I am praying for Tyler!

    THANKS SO MUCH for the support Mary Grace!!! I put all of my recent film blog links into a blog post here http://www.braintalkcommunities.org/...Outreach-month on Braintalk as well in case that's easier.
    Last edited by funnylegs4; 11-01-2015 at 04:39 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  3. #53
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((HUGS TO ALL)))))) ~

    ((((((Tamie, Hubby & Tyler)))))) ~

    Anxiously awaiting an update on Tyler. Continuing healing prayers that Tyler is stabilized and improving and that you are at home. Please post when you have a moment.

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

    How is Kathleen? How many more weeks until the cast is removed? How's PT going? How are YOU?!

    Thank you for your poop prayers! Not a lot going on in that department today. I tried a glycerin suppository, which spit right out! Put it back in, it melted, and that's about the end of that story. So I will probably try an enema tomorrow. We do hear bowel sounds (at least Jim hears them). For some reason, Jon's motility has slowed down these past few months. Could be the seizure meds, since we had to increase them again after he had the seizure.

    I try to remind myself that antibiotics can result in C-diff, which is horrible and difficult to treat, as Jon can't take the preferred antibiotic for C-diff. He's never had C-diff, for which we give copious thanks. I would much rather contend with constipation, the enemy we know, than C-diff diarrhea.

    I finally finished the fall decorations today in Michael's room. It looks lovely, of course, but every year, I find the seasonal decorating to be more tiring (possibly because I'm getting older?). I decorate his room for every holiday and seasonal change. It's how we honor and pay tribute to him and bring him closer to us at these times. For me, it isn't a chore; it is a joy. But my body is not as agile as it used to be, and standing on my feet too long does a number on my joints (RA).

    Yesterday, we cheered on American Pharoah, as he ran an incredible race to win the Breeder's Cup. He is retiring to stud now. His jockey, Victor Espinoza, said that he was going to be sad not to be riding Pharoah again, but that he wanted the horse to have "a good, happy life, and I never want him to get hurt." I presume the odds of injury increase with the amount of racing/training the horse does. What a great horse, certainly the best in my lifetime, and I've seen a few winners. I'm sure that he will turn the heads of all of the fillies waiting to be his one true love.

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

    Now, you are mentoring! How fantastic! Your films are opening so many doors, so many opportunities to connect and network, and enlightening others. I am really happy for you. You are making a difference in this world, and I applaud you, my friend!

    Being well hydrated is quite important to well functioning bowels. It's hard for the bowels to compete with the bladder, where most of the water goes, so you were very smart to consume more water to help your bowels move. With Jon, it is a delicate balance, because he has lymphedema and often fills with fluid in his gut. He is well hydrated, but he can go the other direction fairly quickly.

    And I'm sure that you know that stuffing yourself with junk food isn't going to do your bowels any good. So be sure to eat healthy food now and keep your water intake up. So glad you had a fun Halloween.

    ((((((Marcie)))))) ~

    It's so wonderful to see you posting here. Please join us and bring us up to date on your life. I would love to know how you and your boys are.

    ~ * ~ * ~ *~ *~ *~ *~

    So, October is behind us, which means it's time for us to have a new CN Update thread. I'll kick that off in a few minutes.

    Before I do, however, I just want to say THANK YOU for being here. We may be a small group, but we are mighty in our love and support for each other. And we are terrific Prayer Warriors. I continue to hope that former members will return to join in our conversations, and that new members will do the same. And we are here, holding down the fort for them, when that happens.

    And there are plenty of chaises here for everyone



    And a never ending supply of these, with whatever you'd like included in it ~



    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 11-01-2015 at 07:33 PM.
    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.

  4. #54
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    Tyler is slowly improving. SATS staying down, no more violent vomiting, blood pressure still too low, but better than it was, temp staying down. Still gagging and retching, cold sweats, seizing, coughing and needing frequent suctioning, but better. Thank you for your kind words and prayers. Truly appreciated.
    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."

  5. #55
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    So glad to hear he's improving. Prayers that he continues on the road to recovery.
    Mary Gace

  6. #56
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    ((((((Tamie, Hubby, & Tyler)))))) ~

    Thank you for taking the time to update us, Tamie. I can imagine that your free moments are few and far between. That's good news that Tyler is showing slow improvement.

    I'm wondering about his "SATS staying down." Did you mean heart rate? Our hospital administers O2 at 2 liters, when SATS consistently stay below 88. We put Jon on O2 in August, when he had pneumonia, because he couldn't maintain SATS above 90 for more than a few minutes on room air, and he was working really hard to achieve the mid-80s. Respirations above 20, flaring nostrils, a slight moan, when he exhaled, all signs that he needed O2. On O2, his heart rate came down, as did his respirations.

    Are you deep suctioning his lungs? Or suctioning orally with a Yankauer?

    Blood pressure is such an individual thing. Jon's normal can be 98/63, for example, which would be considered low for the average person. But he is nonambulatory, and he's taking AEDs, which lower his BP. So the hospital doesn't get nervous, until he drops below 85/below 55. He's either been given a medication to elevate his BP via IV, or he's received a bolus of 500 cc water via IV.

    Is Tyler taking any antibiotics now? I'm trying to recall ... I think you said Augmenten and Zithromax were next in line to be tried.

    Healing prayers continue many times every day for Tyler, and strength and rest for you and your husband.

    Please keep us updated, Tamie. Oh, and I've started a new update thread for November, so we can continue our conversations there.

    Lots of love and positive energy flowing your way ~

    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.

  7. #57
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    My dear Tamie,
    I am so sad to hear that poor Tyler is having such a terrible time (and you too). I can't imagine how he must be suffering and you must feel so helpless because he never seems to catch a break. It seems that perhaps he's slowly getting better, but I do wish that he was in isolation at the hospital at least you would have support. I'm very surprised that they didn't offer that when he was in - I was surprised that they sent him home so sick. I'm just so sorry that it's been so difficult - you are all in my prayers. I hope you will be able to get some rest. We're all thinking of you, Tamie, and of course of your sweet Tyler too. Sending love and healing prayers, Donna xox
    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


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