Just trying to be a kid.
Ellie was just featured in the Boston Children ' s Hosptial Thriving blog. She is just a kid trying to be a kid.https://thriving.childrenshospital.org/short-bowel-syndrome-care-ellie/ (Source: The Short Gut News)
Source: The Short Gut News - March 23, 2018 Category: Gastroenterology Source Type: blogs
Ellie's First Post
Hi, My name is Ellie and I am starting to blog for the first time :)This is me. I am 10 years old, in 5th grade and live in Massachusetts. I have a dog named Tillie and a brother named Will.10 years ago on today my family brought me home for the first time!!!!!And my mom and dad just showed me the video of my mom moon walking out the door of Boston Children ' s Hospital with me for the first time. My parents can be strange!! WHO WALKS BACKWARDS OUT OF A HOSPITAL??????I have broviac CVL and I am the 23rd person on Omegaven, and I am still on Omegaven.I went to clinic this week and I had a DEXA Scan. I had to ...
Source: The Short Gut News - December 11, 2016 Category: Gastroenterology Source Type: blogs
Hole in the Wall Gang Camp, Success!!
Ellie loved it! We went to go pick her up and she was so happy we wished we could have left her there for another week. There were 7 girls in her cabin ranging in age from 7-9 and a wide range of diagnoses. She loved all the girls and can't wait to see them next year. From what she told us, it sounded like there was a party almost every day with different themes. This picture is from the Carnivarty. (Carnival+Party)She swam in the pool 2 days, learned archery, caught her first bass, built the Santa Maria out of wood, took cooking classes, completed a ton of craft projects, performed Cotton Eye...
Source: The Short Gut News - July 20, 2015 Category: Gastroenterology Tags: omegaven Summer Camp TPN Source Type: blogs
Ellie Goes to Camp!
I can honestly say that I never thought we could be saying this, but Ellie is at sleep away camp for the week! She is at The Hole in the Wall Gang Camp in CT. It took a ton of planning, scheduling and packing. The last time Ellie spent a night without one of us was Thanksgiving 2006 and she was inpatient, with Sue our favorite nurse, at Boston Children's Hospital. I thought Ellie was too young for sleep away camp. But she disagreed. Gib got the paper work going and now we are without Ellie for a whole week. She has a team of counselors, nurses and doctors taking care of her for us....
Source: The Short Gut News - July 10, 2015 Category: Gastroenterology Tags: Short Bowel Syndrome Summer Camp TPN Source Type: blogs
Resources for Kids with Central Lines
There are tons of resources out there for kids with central lines, Short bowel or on TPN. (Adults have used them to explain their central lines to younger family members too) I have helped my home infusion company produce many educational resources but my favorite thing they have produced is their children's books and the Strap Wrap. If you are interested in any of these books or the strap wrap just email Abby at abrogan@thriverx.netMy Special Line: This early reader or read-to-me book addresses the importance of good line care in a simplified manner with rhyme and repetition. The book’s messag...
Source: The Short Gut News - December 8, 2014 Category: Other Conditions Tags: Children ' s books education short bowel TPN Source Type: blogs
Central Line Care Videos produced for Boston Children's Hospital starring Ellie.
< div class= " separator " style= " clear: both; text-align: left; " > < b > Last winter we had a the pleasure of helping < a href= " http://www.childrenshospital.org/centers-and-services/home-parenteral-nutrition-program/educational-videos " > Boston Children ' s Hospital Home Parenteral Nutrition Team < /a > and the < a href= " http://www.dana-farber.org/ " > Dana-Farber Cancer Institute < /a > create a series of videos on Central Line Care. & nbsp;Ellie and I had fun we honored to be a part of something that we hope will help others just like us. & nbsp; < /b > < /div > < div class= " separator " style= " clear: bot...
Source: The Short Gut News - July 24, 2014 Category: Gastroenterology Source Type: blogs
Central Line Care Videos produced for Boston Children's Hospital starring Ellie.
Last winter we had a the pleasure of helping Boston Children's Hospital Home Parenteral Nutrition Team and the Dana-Farber Cancer Institute create a series of videos on Central Line Care. Ellie and I had fun we honored to be a part of something that we hope will help others just like us. Oh how I wish we had these videos to watch when we were starting out.To watch all the videos visit: childrenshospital.org/centers-and-services/home-parenteral-nutrition-program/educational-videosHere is a sample of what we did:Hand Washing:Using Hand Sanitizer:Scrubbing the Hub:Connecting Tubing:Changing the Dressing:I hea...
Source: The Short Gut News - July 24, 2014 Category: Other Conditions Source Type: blogs
Ellie was in the Boston Globe again!
Make-A-Wish accepting frequent flyer miles See the whole article at: http://www.bostonglobe.com/lifestyle/travel/2014/05/10/the-tip-make-wish-accepting-frequent-flyer-miles/U5yXAQGSafN1TgRBEvD8hM/story.htmlLast fall after our trip we talked to Make A Wish about helping them in anyway we could. Ellie and I went to a basketball game at a local college to help raise awareness and said we would be willing to do more. They asked if they could use some pictures of Ellie for an internal newsletter and we sent them 5-6 photos from the trip saying they could use whatever they wanted if it helped others get a wish too. We nev...
Source: The Short Gut News - May 12, 2014 Category: Other Conditions Source Type: blogs
Sharing Your Story Can Be Such a Blessing to Someone Else!
I was searching the internet for something else tonight and found this.It was heart warming to see, and I loved the message. We hear from families still today that say our blog helped then when they needed it the most. Even though we don't update nearly as much as we should we keep it up and running just so it can be there to help another family when they need it. If you have a blog, Facebook page or group that you want to spread the word about just let us know! (Source: The Short Gut News)
Source: The Short Gut News - March 28, 2014 Category: Other Conditions Source Type: blogs
A Very Wet Day
Thursday was a wet day, A very wet day. We were up very early to slog through Honolulu traffic to Hanauma Bay, a marine reserve that was set up to conserve and manage a very healthy and very accessible coral reef near Honolulu. We were told to get there early to make sure that we had a space in the parking lot (Make A Wish made arrangements just in case it was jammed) and we were there for 9:45 AM, along with about a zillion GoPro-toting tourists that really didn't get the concept of don't stand up on the reef.But fortunately, I had forgoten that Abby Brogan also moonlights as an underwater superhero and proceeded to...
Source: The Short Gut News - November 9, 2013 Category: Other Conditions Source Type: blogs
Dry Day
Waterproofing Ellie has been very successful for us over the years: Some Press n' Seal on the CVL cap and two sheets of Tegaderm over the whole site and she is good to go. but one of the downsides of this is that more than one day of this makes her skin raw and sore. So we generally try to have a dry day after every wet day to let her skin recover.For our first Hawaiian dry day we took off for the center of the island to the Dole Pineapple plantation, a spectacular tourist trap complete with a narrow gauge train, the World's largest maze (like a hedge/corn maze but with hibiscus) and more pine...
Source: The Short Gut News - November 9, 2013 Category: Other Conditions Source Type: blogs
Two-fer
Charismatic- (karizˈmatik/)Adjective. exercising a compelling charm that inspires devotion in others. Megafauna- (ˈmegəˌfônə/)noun . the large mammals of a particular region, habitat, or geological period.Monday was a good day. Especially for a girl with her heart set on seeing big ocean critters.A spectacular dolphin experience in the morning:Followed by a Do-It-Yourself turtle safari with Abby in the afternoon:Yes, Monday was a good day. For Will as well: (Source: The Short Gut News)
Source: The Short Gut News - November 5, 2013 Category: Other Conditions Source Type: blogs
The unfiltered early returns
After a quick dry run in the pool this morning, Ellie, Abby and Erin took to the sea to see some fish. Here is Ellie's unfiltered words fresh out of the water:A success. Abby had to drag her away from the fish. (Source: The Short Gut News)
Source: The Short Gut News - November 4, 2013 Category: Other Conditions Source Type: blogs
What's your Wish?
< div style= " text-align: center; " > < img alt= " Make a Wish " src= " http://massri.wish.org/~/media/Shared/make-a-wish-logo.ashx " / > < /div > < div style= " text-align: center; " > < br / > < /div > < div style= " text-align: center; " > < b > And We ' re Off! < /b > < /div > < div style= " text-align: center; " > < b > < br / > < /b > < /div > < div style= " text-align: left; " > Yes, < b > & nbsp; < /b > after months of planning and the requisite extra fun that comes with a girl with < b > & nbsp; < /b > some extra considerations, we are finally off to fulfill Ellie ' s Make-A-Wish wish: & nbsp;to swim with sea t...
Source: The Short Gut News - November 2, 2013 Category: Gastroenterology Source Type: blogs
What's your Wish?
And We're Off!Yes, after months of planning and the requisite extra fun that comes with a girl with some extra considerations, we are finally off to fulfill Ellie's Make-A-Wish wish: to swim with sea turtles and dolphins, see a volcano and go to a luau. Yes, if your deduction is up and running, we are off to Hawaii! Tomorrow morning to be exact, and we couldn't be more excited.We have known for a long time that Ellie would likely qualify for a wish and almost a year ago we started the process to apply. As we expected she was quickly approved and then it was just a question of timing and th...
Source: The Short Gut News - November 2, 2013 Category: Other Conditions Source Type: blogs
