• What we’ve been up to…

    Kara – where have you been? Why haven’t you been posting sneak peeks from your sessions? Well, here is a post to explain where I’ve been for the past two weeks.

    As many of you know, our daughter has had many medical complications, and has had a g-tube (feeding tube) since she was 5 months old. We have been through over two years of weekly feeding therapies, which all use the “SOS” (Sequential Oral Sensory) method. Meaning – at the child’s pace, introduce them to textures, smells and tastes and combine it with sensory exercises (i.e., skin brushing, motor play, etc.) to reach a comfort level with food. Even with two years of therapies, with some outstanding therapists, it was becoming clear that this approach was not working for our daughter: she had made little to no progress in actually eating in that two-year time frame.

    One Sunday morning, when having breakfast at IKEA (a weekend regular for us!), I was hooking up Kate’s g-tube to her pump for her feeding. A mama came up to me, and introduced herself, and asked if Kate has a g-tube. We started talking, and it turns out, her son had a tube as well. She told me about a program through Seattle Children’s Hospital that uses a hunger-based approach and is one of only three programs in the country that WEANS kiddos off g-tubes by actually allowing them to be hungry. Kate has been so stuffed with formula for two years, she was literally almost never hungry – certainly not enough to make her try food, which to her, was “unsafe” and honestly, just not necessary since her nutritional needs were being met. She literally didn’t know she had to do something in order to not be hungry. As I sat there at IKEA and watched this woman’s son EAT breakfast, I had to find out more. (thank you thank you thank you JM for coming up to me and introducing yourself – you changed our lives!!)

    Fast forward a few months, and Kate was officially cleared to start the program at Seattle Children’s Hospital. We were there every day for two weeks, from 9 a.m. to 3 p.m., where we did three meal sessions with our angel therapist Karen Quinn-Shea. She showed such care and patience with Kate (and me!) – I will be forever grateful.

    Kate’s calories were cut by over 80% by 5 days into the program (fluids were maintained with water to prevent dehydration). It was simply amazing to watch Kate’s transformation. Over the course of the two-week program, Kate went from just touching food to her tongue, then taking a bite but spitting it back out, then taking a tiny bite and swallowing, then taking bigger bites, and so on…. She definitely has foods she will try (crunchy or hard foods) and foods she will not (purees like yogurt and applesauce). Her favorite foods? Bacon, Eggo waffles, M&M cookies, and most of all, White Cheddar corn puffs from Trader Joe’s…

    Kate has a long way to go to be taking in all of her calories, but we are ON THE ROAD. I could not be happier, and frankly, she’s pretty happy too. I can’t imagine being filled with formula all day AND night could be pleasant.

    Here are some photos of our journey.

    In our Radio Flyer, wandering the halls between sessions. There are just NOT enough wagons at SCH. Stay tuned for a blog post on what I intend to do about it.

     

     

    32 Responses to “What we’ve been up to…”

    1. These are so beautiful Kara. Thank you for sharing your life and always being such an inspiration. <3

    2. LindaR says:

      Thank you so much for sharing your amazing journey. Little Kate is such a beautiful little girl. I am so happy for the two of you. How wonderful that she is eating! The photos tell a beautiful story.

    3. Kathryn Page says:

      Kara – I’m so thrilled for you all. Tears in my eyes. Go Kate!!!!!

    4. Jennifer White says:

      Those pictures are so immensely precious! I love the one of Kate with papa! Let me know how I can help you get more wagons at SCH!

    5. gigi says:

      Amazing photos! So happy for you and your little (big) eater!

    6. Kerry Varnum says:

      These are so touching, Kara. I hate to see little people suffer, so a few of these made me tear up. I hope it continues to be a successful journey for your little beauty.

    7. Amy Lucy says:

      Every one of these images showcasing your incredibly strong daughter is priceless. What an inspiration you and Kate are to all of us!

    8. Megan Moore says:

      Oh, Kara! Kate is AMAZING and strong, she is such an inspiration. I am so happy for you guys that you had such a great experience. What a brave little girl. And what a wonderful mama too! <3

    9. Eldri Marshall says:

      I am so happy for you both! What beautiful pictures of your little girl’s journey- you are both amazing.

    10. Ali Smith says:

      What an amazing little girl you have there. Thank you for sharing her story and telling it through these amazing photos. :)

    11. Amory says:

      What a beautiful story! We have also spent many days in the hospital with our son over the past 3 years and I think your pictures so appropriately captured the different emotions. Love it!

    12. Erin says:

      Such an amazing little fighter!!! May God continue to bless your little girl :)

    13. Kara, these are amazing photos documenting an amazing story. I’ve never heard of a child being successfully weaned from a g-tube… it’s miraculous! I couldn’t be happier for you and Kate. It must feel like a whole new world is awaiting her. Thank you so much for sharing this incredibly inspirational story with us and with such emotion in your photography. Wow.

    14. Rosie says:

      Kara, What an amazing journey & story. I am so happy for your family & Kate that you found this program. Sounds like it was the right thing for her. Best wishes that her success continues. :)
      P.S. the pictures tell a great story.

    15. October says:

      That is awesome! I have a friend who has an almost 5 yo boy who was in the hospital until he was 2. (An O baby along with many other things.) He has a g-tube as well and they are trying to wean him. Congrats on the milestone!

    16. rigel says:

      These are some of the most beautiful images I have seen in a long time, full of emotion and meaning. I truly love them and I just want to say that I am inspired by your strength and love for your beautiful daughter. Thanks so much for sharing these and I hope things only get better and better for Kate!

    17. Katie says:

      Wonderful, touching pictures! Our 5 year old also has a gtube and has had it since he was a few weeks old. Luckily, we had good speech therapists since the beginning who have made sure he gets night time off the feed and starting 2 years ago, we gave him longer and longer periods of time not being hooked up during the day. He has went from getting so upset at the site of food he would make himself sick, to now demanding to “eat” at meal time and will actually eat certain foods. (he also cannot eat mushy stuff except ketchup which he loves!)

    18. Melisa says:

      Beautiful images!!! She is precious! I absolutely LOVE the pictures of her and her papa!!!! Thank you for sharing! :)

    19. Kat says:

      Wow…what an amazing journey. So glad you documented this. What a cutie Kate is. Wishing you all the very best.

    20. Melissa M. says:

      I love that her baby doll was involved in the entire process! Hope she continues to progress :)

    21. Amanda says:

      Wow those are amazing.. She is so pretty and sweet. Thank you for sharing with us.

    22. Missy says:

      Amazing photos and an amazing story!

    23. Melissa says:

      These pictures are so amazing – so full of emotion. I love the pictures of her and papa! I wish you the best and pray Kate continues to do well.

    24. Lacey says:

      Yeah for Kate! I can only imagine what a joy it is to watch your daughter begin to eat on her own. I pray for more blessings as your journey continues. Thank you for sharing your story and wonderful photos!

    25. Laura says:

      Kara,

      Thank you so much for posting your story. My grand-daughter was born on 3/12/2010 and diagnosed with Downs Syndrome and had a G-button put in at two months. She finally was able to leave NICU and come home a little over three months old. We have been working with her to eat all this time but have not made any progress. She shows no interest in anything that we try to put in her mouth. I kept telling the doctors that she not hungry why would she want to eat. That was not really the worst part; she had more than her share of heart issues. For a year now we have been trying to get her to gain weight in order to have her heart surgery. She was born at 5lb 15oz, and today at one year old weighs 13lb 12oz. The doctors decided we are not making progress with the weight and scheduled her heart surgery for March 22nd. I know for the past year, because of her heart issues we could not push the eating and had to keep her nourished via the g-tube. After she has totally recovered from her heart surgery, I’m going to look into to this program. Your story could not have come at a more appropriate time.

      Good luck to Kate and strength to you and your family.

    26. Candice T says:

      Such wonderful news Kara! Beautiful pictures to document such an amazing story!!! PS: Love the camera shirt!

    27. Monika says:

      Awww, what a sweet journey and I love how you documented everything in pictures. LOVE!

    28. Nancy says:

      So glad to see that Kate’s doing so well! Sophia Mae is very jealous of her “gibantic” cookie! Lots of love to you all :)

    29. Daria says:

      Kara. Congrats Kate becoming an eater!! I love your photos and it seems we have much in common. For one, my daughter just did the Seattle intensive 1 month ago! Isn’t Karen wonderful? Also, JM is awesome and now she lives a few blocks from me in Missoula! I’m writing about our experience in Seattle for a mothering online magazine to try and gain awareness of special needs kiddos. Please check it out: http://www.mamalode.com/blog/category/stories/an-unexpected-path/

      Would love to email sometime, send me an email if you get a chance!

      Good job!!!!

    30. andrea says:

      such gorgeous pics.

      the one of her and her papa is the best!!!! Love it!!!

    31. Tamra says:

      Thank you for sharing your touching, beautiful story. Your daughter is adorable, and what a huge accomplishment! Your pictures of your journey are gorgeous.

    32. Cari Wood says:

      So inspired to read your story. We are starting the same program with Karen on March 28th. I have to admit I’m a little nervous. Very excited about the potential, but nervous it won’t work since NOTHING ELSE has :) Our little one, Destiny, was in the ICU for 11 of her first 12 months and then in and out until she was 15 months. Since then she has just made leaps and bounds of progress in all areas (except feeding). I know she is capable of learning to eat, we just have to find the right method for her. I hope this is it!!!

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