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Thread: CN Central: November 2017 Updates

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    Cool CN Central: November 2017 Updates


    ((((((Hugs to All)))))) ~

    Okay, my dear friends, I feel like I've been monopolizing the forum with Jim's and Jon's updates. Now it's YOUR TURN!

    I truly want to hear about your lives, your children and what's been happening in your world. PLEASE share your latest news here.

    Pull up a lounge chair and spill the beans!



    Your smoothies are waiting ~



    Or, if you prefer with the cooler weather, we have specialty coffees for you ~



    The weather is gorgeous with abundant sunshine and soft sea breezes.

    Let the chatting commence!



    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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    Rose, thanks for starting this thread great idea. Time to catch up with everyone here. Reading your post made me really really wish that we were all pulling up a chair with a drink or cup of coffee together!!! Kinda brought tears to my eyes!

    Anyway I have my coffee and here's our update. Kathleen just had her routine blood work done we just got home from that. She was a real trooper! They must have taken over 10 viles!Stool sample too to check the Crohns. But it's all done! We'll get those results this week. She's been pretty healthy and happy lately and school is going very well. She works a little in the office and seems to like it. She played football with our Challenger league Saturday was her last game. Went to a big Halloween party and trick or treating. She was Dopey from Snow White. She picked it back in August. She had an appointment at Shriner's a couple weeks ago. They are very concerned about her hip rotation and her knee which bends inward toward her other leg (bow legged but just her left). Thinking she is going to need hip and knee surgery. Next Thursday she will be having some extensive testing, an electronic gait analysis, and xrays. This will give us a better look at whats best for her. The Dr. is concerned about arthritis and ruining what was done to her foot a couple years ago. And just becoming less and less independent. If it needs to be done we have through her 21st year to do it then we are done with Shriner's. I think it's the best place for her for this. It's just starting to get cold around here we had a very mild fall. I'm starting to plan Thanksgiving dinner. I LOVE making this for my family! One of my favorite meals. My older kids are good. Kelly went to Spain on a yoga retreat. Patrick coached a JR. Blue devils team and had an almost undefeated season. Lost the last game. They did a very nice "hero appreciation" day to teach the kids about respecting these people we depend on. And as with every game stood very respectfully for our anthem!!! So that's our update who's next? Pull up that chair!
    Mary Grace
    P.S. I'll get some pictures up too!

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

    Thank you for your newsy update!

    I hope that Kathleen's blood work is good. Please post when you get the results. So happy that Kathleen is healthy and enjoying all of her activities. What position does she play in football? Amazing that she can play, with her orthopedic issues. Kathleen is a princess ~ she would have been perfect for Snow White! But, I'll bet her Dopey costume is darling. Many photos, please!

    Shriner's is such a wonderful organization. I'm so glad that they are on top of everything with Kathleen. They were so fantastic to her and you with her last surgery, so at least you have that assurance should she need hip and knee surgery. There should be a Shriner's for adults! Maybe we should encourage them to expand their services.

    How cool that Kelly went to Spain on a yoga retreat. That sounds fantastic. I wanna go!!! Congratulations to Patrick!

    Are you still providing care to little ones at home, Mary Grace? Your hands are certainly full.

    Your Thanksgiving feast will be extra delicious, because you make it with so much love. What a beautiful family you have ~ I can picture you on Thanksgiving Day, and it warms my heart.

    I too wish that we could literally gather on the beach, or anywhere, for beverages and conversation. I imagine with all of us together, there wouldn't be a second of silence, and I'm thinking there would be tons of laughter and fun. We've all been friends here at CN for so many years. And even though it's virtually-based, the love we have for each other and our deep connection is very real and wonderful. Every strong relationship is founded upon commonality and communication. And we have that in abundance.

    Looking forward to your updates, Mary Grace ~

    Come on, everyone, please join Mary Grace and me! We have lots of tasty, nonfattening, healthy, organic treats to go with our beverages, as well as luscious dark chocolate!!



    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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    Hello all...hmmmm, Tyler has been Tyler. A couple of UTI's, but reasonably healthy. AD episodes have subsided, which is an enormous relief. Two years of watching him suffer through those nasty bouts took their toll on all of us. Unfortunately, in their place, the seIzures have escalated. We just started his 23rd anticonvulsant (Perampanel) last week in the hopes of regaining some semblance of seizure control. It will take a month or more to get to a therapeutic range. Seems to make him sleep a bit better, but not seeing much reduction in his seizures. He just never seems to be happy any more.

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    Hi Everyone,

    So hereís what I have been up to. My film is still in post production because we had a problem with some of the audio not synching. I also seem to be getting screening offers like every single day for the new film but nobody seems to be reading the fine print that the film is not yet finished LOL.

    My friend/teacher with the stroke is doing very well. He is helping me with another of my crazy schemes involving a presentation. I told him he didnít have to but he seemed really into it. He has had to cut back on work hours because of the stroke but said little things like this are fine for him physically.

    I also have to write something about disability media portrayals again, any movies in particular you all can think of that have bad disability portrayals? Particularly characters that are one dimensional etc?

    Thanks for restarting the update threads Rose! Mary Grace, hope Kathleen won't need surgery! Tamie, so sorry to hear of the seizures!
    Last edited by funnylegs4; 11-10-2017 at 03:35 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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    ((((((Tamie)))))) ~

    While I'm thrilled that the AD episodes have subsided, I'm so sorry that Tyler's seizures have escalated. To what do you attribute the cessation of the AD episodes?

    I've never heard of parampanel. Is it new? I will pray that it will work and that you will soon see a reduction in seizures. It's so unfortunate that the CBD Oil didn't work.

    How are you and Jerry holding up? Are you getting more rest and sleep? Hope both of you are taking good care of yourselves.

    As always, healing prayers are on the way. Please keep us updated.

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

    What a compliment to you as a filmmaker with folks clamoring to screen your new film! I hope you're able to work out all of the glitches, so you can release it soon. I'm looking forward to seeing it!

    I'm so glad that your teacher/friend is doing well, and he's wise to reduce his work hours and stress. You have been such a wonderful friend to him, i'm sure that he is more than happy to help you with your presentation.

    I can't think of any recent movies, which portrayed disabilities poorly. But then, there aren't that many movies about people with disabilities. Jim and I watched a 2016 movie on Netflix, which we really enjoyed: "The Fundamentals of Caring." It might not be everyone's cup of tea, because it's a tad quirky. But we thought it was honest and moving, with relatable characters.

    Please be sure to let us know when your film premieres!

    Plenty of lounge chairs available, and servers waiting to bring you beverages and snacks (and chocolate!) at your beck and call ~ Please join us!



    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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    Hi Everyone,
    I've been away at a childhood disability research conference which was really interesting and fun. https://www.brainchildpartners.ca/ If you are interested in seeing the program, click and hold the three little lines on the top right and the drop down menu with programming will appear. The genetic research was really interesting. We had families on the panels with researchers who told the stories of discovering genetic anomalies and also I talked to one researcher, Dr. Jerome Yager who is looking at the role of broccoli sprouts in rats to prevent in utero CP the way folic acid prevents spina bifida https://www.ualberta.ca/integrative-...s/jerome-yager. I add the links in case anyone else is a science nerd like me :). Our family is doing well. Nick is great - he's back to himself after a terrible summer and his latest wonderful find is spoken word books. He's listening to all the sports and wrestling bios he can find. So cool! Natalie is busy in Milwaukee at her American material culture (decorative arts) institute and is coming home for Christmas - yay! Winter has arrived here - it's -8 today. Love to all!
    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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    ((((((Donna)))))) ~

    Unfortunately, I can't find the three little lines on the top right of Brain Child Partners to get to the programming! Do we need to be registered to connect to the programming? I would love to see your presentation.

    I'm in awe of all that you do to advocate for people with disabilities. Your energy, wisdom and knowledge are incredible. Thank you so much.

    What a relief that Nick is finally recovered from the pump replacement and enjoying his life again. I know you're thrilled to have Natalie home for the holidays. The aroma from your kitchen will be exquisite, I'm sure!

    We're missing Nick's wonderful smile in your signature photo. Photobucket changed their policies on 3rd party sharing earlier this year. I remember when it was free. Sign of the times ~ $$$.

    Yikes! -8 degrees!!! I guess you'll want a cup of java instead of a smoothie! Or perhaps a hot toddy!

    Thank you for rejoining us, Donna. We've missed 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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    Quote Originally Posted by Donna Thomson View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi Everyone,
    I've been away at a childhood disability research conference which was really interesting and fun. https://www.brainchildpartners.ca/ If you are interested in seeing the program, click and hold the three little lines on the top right and the drop down menu with programming will appear. The genetic research was really interesting. We had families on the panels with researchers who told the stories of discovering genetic anomalies and also I talked to one researcher, Dr. Jerome Yager who is looking at the role of broccoli sprouts in rats to prevent in utero CP the way folic acid prevents spina bifida https://www.ualberta.ca/integrative-...s/jerome-yager. I add the links in case anyone else is a science nerd like me :). Our family is doing well. Nick is great - he's back to himself after a terrible summer and his latest wonderful find is spoken word books. He's listening to all the sports and wrestling bios he can find. So cool! Natalie is busy in Milwaukee at her American material culture (decorative arts) institute and is coming home for Christmas - yay! Winter has arrived here - it's -8 today. Love to all!
    Donna, wow! Broccoli preventing CP eh? That's a new one on me. Thanks for indulging my science nerd side! The program was interesting.

    Rose, Thank you! My film will be out very soon and I will share the link here as soon as I can! If you want to see Donna's program its free but on my browser its on the right side and they are not dots, but 3 white lines you click on. Do you see 3 lines anywhere? (No offense to Donna, its my computer)
    Last edited by funnylegs4; 11-12-2017 at 06:52 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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    Hi guys! Here's a garbled copied and pasted lineup from the conference - but you'll get the idea. It's all interesting and this is one of three days of presentations. Day 2
    LISTENING TO CHILDREN’S VOICES: PROMOTING YOUNG PEOPLE’S ENGAGEMENT AND PARTICIPATION

    Tuesday, November 7, 2017
    3:45 PM 5:00 PM
    Prince Ballroom South (map)
    Children and youth are commonly considered incapable of understanding and participating in discussions and decisions that affect them. Consequently, their input is frequently discounted. We will discuss current research and practice innovations which demonstrate that the capacities of children and youth are systematically underestimated and that their exclusion from discussions and decisions that affect them can be experienced as harmful. We will also discuss strategies for promoting the engagement and participation of young people in matters that affect them.

    Moderator: …ric Racine
    Speakers: Franco Carnevale & Dolly Menna-Dack
    NOV
    7
    Day 2
    HEALTH BREAK

    Tuesday, November 7, 2017
    3:30 PM 3:45 PM
    Prince Ballroom Foyer (map)
    NOV
    7
    Day 2
    CAN BASIC RESEARCH AND APPLIED RESEARCH BE FRIENDS?

    Tuesday, November 7, 2017
    2:15 PM 3:30 PM
    Prince Ballroom South (map)
    This session will frame a debate on the interaction between basic research and applied research. The speakers will reflect on their experience bringing basic science discoveries to be evaluated in the clinical research domain. In our current era of patient oriented researchers, the panel will reflect on how patients and researchers can work together most effectively to promote the translation of discoveries in the lab to better patient outcomes. This discussion will also extend to the opportunity to enhance our training programs for patient oriented research that cross the basic-applied divide, and the opportunity to make basic research more accessible to citizens.

    Moderator: Derek van der Kooy
    Panel: Donald Mabbott, Freda Miller, Rebecca Ruddy
    Key responder: Roderick McInnes
    NOV
    7
    Day 2
    MAKING RESEARCH UNDERSTANDABLE: NEW CHANNELS OF COMMUNICATION

    Tuesday, November 7, 2017
    1:00 PM 2:15 PM
    Prince Ballroom South (map)
    Research (both its process and its results) has often been opaque to non-researchers, sometimes, it seems, deliberately so. In this session we will learn from three people who in different roles and mainly through the use of various social media, including YouTube videos, blogs, Facebook, and Twitter, have succeeded in helping families understand research, engage in it as partners, and apply its results. And with so much misinformation and context-free information floating about, especially on social media, our experts will discuss ways of ensuring that what they convey is accurate and sufficiently nuanced while still engagingly and effectively presented.

    Moderator: Kate Robson
    Panel: Christine Chambers, Louise Kinross, Rachel Martens
    Key responder: Ann Douglas
    NOV
    7
    Day 2
    MEET THE EXPERTS TRAINEE LUNCH

    Tuesday, November 7, 2017
    12:00 PM 1:00 PM
    North York (map)
    Network and gain valuable insight from leaders in developmental neuroscience during this luncheon. Participants will discuss topics including diagnostics, interventions, genetics, and research models with our expert table hosts who guide discussion and provide personal insight into research as well as career development.
    NOV
    7
    Day 2
    LUNCH

    Tuesday, November 7, 2017
    12:00 PM 1:00 PM
    Prince Ballroom Foyer (map)
    NOV
    7
    Day 2
    YOUNG RESEARCHERS TALKS

    Tuesday, November 7, 2017
    11:30 AM 12:00 PM
    Prince Ballroom South (map)
    During this session, students and Postdocs will give a short presentation (3mins, 1 slide) that highlights key study findings or outcomes that have an impact on their area of research. The presenters will be selected based on abstracts and “two-sentence highlight” submissions received prior to the conference. This session will give trainees wide exposure to our conference audience and a brief introduction to their posters.

    Moderator: Lucy Osborne
    NOV
    7
    Day 2
    OUTCOMES THAT MATTER: ARE WE ON THE SAME PAGE?

    Tuesday, November 7, 2017
    10:15 AM 11:30 AM
    Prince Ballroom South (map)
    Outcome measures are tools that may be used to assess a change in particular attributes of a person over time, in areas that are thought to be meaningful in a person’s life. The outcomes we measure are linked to either the effects of a particular intervention or program, or the impact of a disease or health condition, and are utilized to answer research questions. This session will provide an overview of the importance of selecting the ‘right’ outcomes that matter most. The tension between the different perspectives of researchers and patients will be shared, through illustration of ‘outcomes that matter’ for youth with a congenital heart defect and children with cerebral palsy.

    Moderator: Annette Majnemer
    Panel: Beatrice Latal, Symon Hay, Darcy Fehlings, Katie & Richard Suggitt
    Key responder: Lorraine Sunstrum-Mann
    NOV
    7
    Day 2
    HEALTH BREAK

    Tuesday, November 7, 2017
    10:00 AM 10:15 AM
    Prince Ballroom Foyer (map)
    NOV
    7
    Day 2
    EXPLORING THE PURPOSE AND MEANING OF PATIENT ENGAGEMENT IN PEDIATRIC NEURODISABILITY RESEARCH

    Tuesday, November 7, 2017
    8:30 AM 10:00 AM
    Prince Ballroom South (map)
    In this session, speakers will unpack the notion of “patient engagement” in pediatric neurodisability research and explore its potential benefits and challenges. Attendees will come away from the session with a fuller understanding of some of the issues surrounding efforts to engage patients and their families meaningfully in pediatric research. Speakers will share their experiences and reflections, encouraging dialogue and thoughtful analysis of the current state of patient engagement initiatives.

    Opening comments will be presented by Jennifer Johannesen. Drawing on her experiences of parenting a child with multiple undiagnosed physical and neurodisabilities, Jennifer will present a parent’s perspective on patient engagement in research, and will discuss what she considers would be helpful to children and families. Jennifer strongly advocates for brain-related research projects to extend beyond current confines, to include consideration of a person’s social environment, family context and other realms typically assigned to the social sciences.

    Moderator: Donna Thomson
    Panel: Jennifer Johannesen, Evdokia Anagnostou
    Key responders: Franco Carnevale, Julie Drury
    NOV
    7
    LIGHT BREAKFAST

    Tuesday, November 7, 2017
    7:00 AM 8:30 AM
    Prince Ballroom Foyer (map)
    NOV
    7
    REGISTRATION OPENS

    Tuesday, November 7, 2017
    7:00 AM 8:30 AM
    Conference Hallway (map)
    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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