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Posted 2015-04-06T15:36:00Z

Breathing, Shots, and Painting

Breathing, shots, and painting... probably not something you'd normally hear strung together in a list, huh?

Since my last post I have some good news. The phrenic nerve pacer (a diaphragm stimulator... think of it as a pacemaker for breathing) will probably not be needed. I am now able to generate some of my own breath so they have slowly started to wean me off the ventilator. My forced vital capacity (fvc), and negative inspiratory force (nif) are improving on an almost daily basis. When I arrived at Craig both scores were zero.

Also, I have been receiving a daily shot in my stomach to prevent blood clots. I never minded the shot because I could not feel it--until last week. Now I don't like it, but I guess that's a good thing.

I miss my friends at home, but I have met three other teenagers who are patients here at Craig with spinal cord injuries. Craig Hospital wants to plan an outing for the four of us to get off campus and do something together.

Finally, a fun video I wanted to share of me painting... it's not a Picasso, but a fun distraction from all the work.

http://youtu.be/V_O6nyjM_Bk

Thanks again for responding to my posts, I can feel the encouragement and love everyone sends. They make me smile and laugh and I appreciate every one of them.

Gracie

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Comments (48)

  • Anne Weber
    Anne Weber

    Hi Gracie and family So good to hear some good news of you. What a struggle you have every day! We are all praying for you daily. Fondly, Anne Weber

    11 years ago · Reply
  • kate ford
    kate ford

    Painting is so good for the soul! Thank you for being a beacon of light and hope as you recover. Have a happy day. Kate

    11 years ago · Reply
  • Rebecca Goodman
    Rebecca Goodman

    This is progress in such important areas. You and your family continue to be in my thoughts. Great news!

    11 years ago · Reply
  • Michelle Keenan
    Michelle Keenan

    Hi Gracie!! Every bit of good news is a worth celebrating!! Yay!! We are praying and pulling for you!!! Love you!! The Indiana Keenans :)

    11 years ago · Reply
  • Irving Soto
    Irving Soto

    Miss and love you Gracie!! Always thinking of you <3

    11 years ago · Reply
  • Dallis Richardson
    Dallis Richardson

    You paint better than I do! (Although I have to tell you that's not a huge compliment...) Gracie, the best news, believe it or not, is that you can now feel those awful shots in your stomach. That seems to be not a nice thing to say, but you're getting some feeling back, and that's awesome! And to go on an outing with some new friends--I am so happy to hear that! You have become so very literate about all that is going on with you, probably more than you ever wanted to know. It is so special when you are the one sharing with us; it brings you closer to us, and us to you. Keep up that good, hard work. What an inspiration you are!

    11 years ago · Reply
  • Ashley
    Ashley

    Dearest Gracie, Very Exciting news! I'll have you know that butterfly/flower picture you did with your mouth is way better than any picture I've ever painted with either hand! We sure miss your family in the neighborhood. It's been helpful seeing your sweet grandmother walking Brillo here lately. Your aunt came into my shop and told me how well Cody is doing at their home, such a relief. Of course, Otis is still missing him. We are all busy and excited about the Run With Grace event coming soon. Lots of people are signing up. Know it'll be a big success! Sending you all our love today and everyday, The Foxes

    11 years ago · Reply
  • Diane Jaskolka
    Diane Jaskolka

    WOW! You go girl! : )

    11 years ago · Reply
  • Vanessa Furlong
    Vanessa Furlong

    Gracie, Such good news. :-) praying for some fun times when the four of you go on your outing. Love the updates, and love you!

    11 years ago · Reply
  • elissa ross
    elissa ross

    Gracie...all good news. Can't wait to celebrate graduation with you....the local paper said you were planning on coming back home for that. Look foreard to the visit! warmly, Elissa Ross (Aka Hannah's mom)

    11 years ago · Reply
  • Meryl Wieder
    Meryl Wieder

    Brave New World for a courageous Explorer. I hope that you have a wonderful outing.

    11 years ago · Reply
  • Jeri O'Mahoney
    Jeri O'Mahoney

    I think your artwork is pretty impressive! All great news! I'm sorryish, that the shots are painful, but who would have ever thought that would be good news...Sending good thoughts for you and your family. -- Jeri O'Mahoney (Daisy's mom)

    11 years ago · Reply
  • Steve Stewart
    Steve Stewart

    Gracie, all good news. Love the painting.

    11 years ago · Reply
  • Virginia Shanks Lordan
    Virginia Shanks Lordan

    Wonderful news that the nerve pacer not be needed. Along with the "feeling the shots" these things mean you are making progress. That is the important thing. A day at a time, a week at a time. I hear too that you will be going to a new doctor. All good news. Love, Virginia

    11 years ago · Reply
  • Barry Fisher
    Barry Fisher

    hi Gracie Girl! I'm glad to see all your improvement! We continue to pray for you and our church has included you in their prayer groups! Keep fighting! We miss you. Barry

    11 years ago · Reply
  • Joyce Margolin
    Joyce Margolin

    Dear Gracie. You are an inspiration. Such strength and positiveness you demonstrate. Keep up the hard work you are doing. We look forward to your return to SB. Joyce & Don

    11 years ago · Reply
  • Kathy Weiner
    Kathy Weiner

    Good Morning Grace, Love your butterfly, flying free. We are keeping posted of your progress and celebrate each new gain. Keep up the good work. Love, Kathy Weiner, Tricounties physical therapist.

    11 years ago · Reply
  • Mari headley
    Mari headley

    Thank you for sharing your good news with us! We are thrilled about your breathing, movement, and sensation progress!! Looking forward to reading about your outing...great idea! Last but not least, I am a huge fan of the theraputic power of art so kudos to the folks at Craig for providing you with that opportunity!!

    11 years ago · Reply
  • Cathie Watson-Short
    Cathie Watson-Short

    I just shared your video with my oldest daughter Celeste and my workmates and we are all excited for you to be gaining more sensation in your body and breathing ability and loved seeing your painting. Keep up the amazing progress. The Shorts and our family and friends are all rooting for you!!!

    11 years ago · Reply
  • Sara Bazan
    Sara Bazan

    HI Gracie! So great to hear things are progressing! you are always in our hearts! love, Sara Chimaway and Casmali

    11 years ago · Reply
  • Bill & Connie Davis
    Bill & Connie Davis

    Hi Gracie, Bill and I are so glad to hear of your progress. Slow and steady wins the race and you are certainly steadily winning the race. I looked back to the time you began this journey and am really encouraged. Your courage and "grace" through it all is amazing. You are an inspiration to us all.. love, Connie and Bill Davis

    11 years ago · Reply
  • Carol Corr
    Carol Corr

    Hi Gracie, thought I would say hello right now because I think you are amazing! It sounds like you are making a lot of progress. We are going to have Megan and Julia here next week and we plan to do a video for you. I am sure it will be a riot...they both are such hams😀. Now...I am going to look at that video. I am full of awe, truly. You have a lot of "starch" , you do. XxoooCarol

    11 years ago · Reply
  • Carol Corr
    Carol Corr

    GRACIE! Wow.......WOW! I am REALLY impressed. I don't know what to say except you are beautiful, courageous and I LOVE your painting! Lots of love, Carol and Harvey. I showed him the post and video too.

    11 years ago · Reply
  • Laura
    Laura

    Such great news Gracie!!!! Thanks for sharing, these posts are so uplifting to us all. We have been praying for everything surrounding your recovery, but most fervently for you to be able to wean form the ventilator, so that part is especially great news! Keep it up!

    11 years ago · Reply
  • Alison Strelich
    Alison Strelich

    Beautiful - you, your progress, your artistic expression, the light in you. We love hearing about your progress so much and your adventures too. Thank you for writing about it all and sharing it with all of us. You're in everyone's thought and prayers. Love, Alison

    11 years ago · Reply
  • Donna S Zehrung
    Donna S Zehrung

    Hi Gracie. We are thrilled at the progress you are making. The picture we saw you painting was better than many we have seen by professionals. You are an inspiration to so many. Anxious to hear about your outing with the three friends you have at Craig's. Our prayers are with you always. God Bless you now and forever. Donna & Ron Zehrung

    11 years ago · Reply
  • Kathy Kelly
    Kathy Kelly

    Your strength, courage, and determination are amazing, Grace. We have never met, but I follow your journey like we're old friends. Sending you love and continued recovery :-)~Kathy

    11 years ago · Reply
  • Jennifer Oakley
    Jennifer Oakley

    Better than Picasso!!!

    11 years ago · Reply
  • Michelle Grippo
    Michelle Grippo

    We are excited about the news. Glad you have met some friends...I am sure they are just amazed by you as we are!

    11 years ago · Reply
  • Donna Benton
    Donna Benton

    LOVE the news! Yea for progress! Good job phrenic nerve! Keep up the hard work, we are all so proud of you Gracie and send huge Easter Baskets full of LOVE. XOXO

    11 years ago · Reply
  • Carol Forhan
    Carol Forhan

    thank you for sharing your good news!

    11 years ago · Reply
  • Doreen Edwards
    Doreen Edwards

    Awesome report on progress, Grace! Your painting is full of spring. Love it. I can't wait to hear about the teen girl's outing : ) xxooDoreen

    11 years ago · Reply
  • Andrea Caplan
    Andrea Caplan

    Gracie you continue to inspire all of us! What a talented young lady you are. Thank you for your beautiful painting, it is like a breath of fresh air from a warm soul. Hugs💞

    11 years ago · Reply
  • Kari Martindale
    Kari Martindale

    We love reading your updates, Grace. Thank you for sharing. You truly are an inspiration. Your painting looks great too! Kari Martindale

    11 years ago · Reply
  • Cindy Billings
    Cindy Billings

    Gracie, Your news is wonderful. I know how difficult all your hard work must be, but how exciting that you are seeing positive results. I will pray everyday for your continuing improvement. Also, you are one talented painter, and that looks tough, but you're making it happen! Love and hugs your way, Cindy, Doug and Natalie

    11 years ago · Reply
  • Sharlae Jenkins
    Sharlae Jenkins

    Yay, Gracie! Your painting is great - I love the colors! We continue to pray for you and your family. Keep up the fantastic progress. Youre an inspiration! 😘

    11 years ago · Reply
  • Fran Finney
    Fran Finney

    Gracie - I just arrived home from my flight back to Santa Barbara. Thank you for letting me share part of your day today (Monday, April 6). I loved watching that guitar video - you are an amazing musician! I am so looking forward to you and your wonderful family heading back to Santa Barbara, when you all are ready to make that move. It's incredibly hard work, but you are achieving great things from all that effort, and every single thing you achieve is yours for keeps. Hang in there. . . My love to you all -

    11 years ago · Reply
  • Jennifer Hadjian
    Jennifer Hadjian

    You are amazing Grace! I love your painting! I did one at the Painted Cabarnet here in SB and it doesn't come close to yours! ; )

    11 years ago · Reply
  • Claire Pendergast
    Claire Pendergast

    Gracie, Such great news in all fronts! It is so great to hear these updates from you! I am so happy to hear that they are beginning to wean you off the ventilator! That is incredibly good news! I'm curious what your fvc and nif scores are today. Sorry to hear about the pain you are enduring from the shots, but hurrah that you are regaining sensation!!!! That is such incredibly good news! All of this is such great progress, we are all so encouraged by it all!! Keep up the amazing, hard work!! I am also so impressed with that painting! Seriously, that is incredible that you did that with the use of your mouth!! Can't wait to see you back home so much stronger than when you left! Sending love, The Pendergasts

    11 years ago · Reply
  • Joanne Leopold
    Joanne Leopold

    WOW! Such good news! You're working so hard and now are seeing some benefits. Good for you! I've had those shots in the stomach and never thought that I'd hear that someone is glad to feel that pain, but wonderful news. Glad to hear you've met some kids around your own age going through some of the struggles you are. We celebrate all your courage and continue to pray that your recovery will get easier as time passes. Seeing love to you and your family.

    11 years ago · Reply
  • Grace Rachow
    Grace Rachow

    Gracie, you talk like a medical pro! Loved seeing the painting. Actually it does look a bit like a Picasso! Wonderful to hear the positive news. I have been hearing carpentry next door. I'm imagining an indoor freeway for your new wheels. Hmmm...four teens out on an adventure. Sounds like a pretty good premise for a movie. Looking forward to the report. Cheers from the Grace next door.

    11 years ago · Reply
  • Kathryn deBruynKops
    Kathryn deBruynKops

    Wow, Gracie, you really are amazing! It must be such incredibly hard work but it sounds like things are moving in a great direction. Thanks for taking the time to make these posts. You are an inspiration to all! Sending our love, the deBruynKops family

    11 years ago · Reply
  • Mary Pat Harris
    Mary Pat Harris

    Gracie, I just read all of your posts starting from the beginning. What amazing progress you've made! My heart was up and down with the insurance struggles to get to Craig. We had a many week delay getting to Craig due to insurance as well. The love and support of so many gives me an even greater understanding of the wonderful woman you are. I'll continue to email photos of you working hard to regain mobility and strength. You have such determination! Sleep well. You've got some great things going on tomorrow and will want to feel rested! Mary Pat Harris (Jim's mom)

    11 years ago · Reply
  • Carol Corr
    Carol Corr

    Hi Gracie, I am at my art class and I showed all the ladies here your video of you painting. They are amazed at how well you do! Truly, they are. They all send their love and best wishes and are praying for you too. You are, really, amazing! 😍 Carol

    11 years ago · Reply
  • bob dorn
    bob dorn

    You are special to our family and the progress you are making is a blessing to all of your family.

    11 years ago · Reply
  • Peggy Rogers
    Peggy Rogers

    You need to keep this painting forever...its symbolizes so much love and hope! Just beautiful, Gracie! Hugs Peggy

    11 years ago · Reply
  • Paul Corr
    Paul Corr

    (from Marc and Jane Reisman) Grace, I think the painting is incredible. Picasso surely never worked as hard on, put so much effort into, and never appreciated his work as much as I am sure you have done with yours. Great art --- perhaps not. But truly fine and inspirational art. Grace, we understand that all of your victories, however large or small, are the result of a tremendous amount of work on your part, and I am sure none of sees how hard you and your family work to get to the point of those successes. You are so lucky to have Emily and your folks working with you as a team, and they are so lucky to have you toiling to gain independence. And there are thousands of people watching, following, and cheering for you. Our best, Marc and Jane Reisman

    11 years ago · Reply
  • Nikki Riedinger
    Nikki Riedinger

    Hey Gracie! It has been so great to read these updates and hear about your amazing progress. It's so great to hear that you're able to move and breath a bit more! I wish I could visit you in person and just give you a giant hug, but until that's possible, just know that my family and I are all thinking, praying, and rooting for you! You are such a strong person and you've already come so far. Just keep pushing Gracie! And please let me know if there's anything I can do <3

    11 years ago · Reply