Sunday, July 19, 2015

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 Eyed Joe dance on stage with her cabin and did a solo demonstration of animal noises for the whole camp.

On the last night she was awarded a cooking award for a banana bread she made while she was there. Then her cabin later that night gave her an award call, Princess Energizer Bunny, for her endless energy.  Which if you have met Ellie, you know this was the perfect award for her.
These are photos of her with some of the counselors.
The medical team was amazing.  They set up her TPN and Omegaven at night, hooked her up, took care of her Omegaven throughout the night, got her line ready for swimming (twice) and had no leaks.  They kept her up to date on all her medications and oral fluid intake and never need PRN hydration.   She had a primary day nurse named Rose that she really bonded with and a night nurse, Kara that she loved as well. 
Ellie and Rose

And with the help of the Danielle the Dietary Intern, she tried some new foods and found she loved them.

She had a bed in the Yellow cabin but spent her nights in the Moose lodge, the  lodge that is attached to the clinic.  This is because her Omegaven bottles need to be changed at night.  But she befriended the other girl staying there and they had sleepovers in each other's rooms a few of the nights.  
Ellie's bed in the Moose Lodge.
Over all it was a huge hit and she wants to go back for as many summers as possible.

Will had a great time while she was away.  We tried to keep him as busy as possible and made sure he had a great week too.

It was very odd not having Ellie around.  The first few days we walked around positive that we were forgetting something big.  Nighttime was the hardest time, we couldn't shake the feeling that we should be doing something.   We made it just over 48 hours before we called to the camp to check in on how she was doing. Next year will be easier.

We are incredibly grateful to everyone at Hole in the Wall Gang camp that make Ellie's week so much fun.  Now we leave you with the Hole in the Wall Gang Camp song Ellie taught us.
This camp was good to me! 
This camp was good to me!
Thank you Paul for this Hole in the Wall!
This camp was good to me!

Friday, July 10, 2015

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.  We spent the past week packing all of her medical supplies.  This tool helped us get ready.  
We hit the road at 7 a.m. this morning with a very excited little girl. We had to remind her that she needed to sleep the night before camp.  If it was up to her she would have stayed up all night asking us questions. 

We spent 3 hours checking her in and explaining her medical stuff (TPN, Omegaven, G-tube, meds, oral fluids, diet and dressings) to the team.  Then took her to her cabin.

 Ellie is in the Yellow cabin.  She actually has to sleep in a a lodge that is attached to the hospital because of her Omegaven bottles needing to be changed at night.  But she gets a bed in the cabin and will spend all her time in the cabin and then sleep and get dressed in the lodge.  So she gets 2 beds.  It does make her different than the other kids, but she was very happy to have 2 beds.
 Overall Hole in Wall Camp is like a typical summer camp on steroids.  And that is coming from someone that spent 4 summers at summer camp and another summer as a counselor.
 We left Ellie in her cabin and went to the family lunch.  Then hit the road home.  Needless to say both Gib and I cannot believe that this is really happening.  I think tonight will be when things really sink in.  We will be able to sleep through the night, there will be no beeping pumps, no medications to get ready, no formula to mix and for the first time since 2006 neither one of us is on call.

The fact that Ellie is gone hit Will halfway home from the camp.  But, a well timed ice cream cone solved the problem.
If you want to send Ellie a letter at camp, email me at and I will send you her address.

Monday, December 08, 2014

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

My 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 message is that a central venous line is special and needs to be kept safe, clean and dry. 

Let's Learn About Central Lines: This new book for elementary aged children discusses central lines, basic central line care and how children can begin to take an active role in caring for their central venous line (CVL).
      What is a CVL
      Who might need a CVL
      How they can help keep their CVL clean and dry  

HENRY IMAGINES, An Adventurous View of Short Bowel Syndrome: 
This is book was written by a father about his son with Short BowelSyndrome (SBS) - a condition many children and adults are living with all over the world.
      By using his imagination, Henry takes the trickier parts of everyday life with an ostomy, G-tube and central line and turns them into an adventure! If your child or a young person in your family, school or neighborhood has this condition or has an ostomy, central line or G-tube this book is a great way to help them learn and have fun.  To order your copy visit:

Strap Wrap: A medical free alert device for children or adults on IV nutrition support. 
The strap can wrap around a seat belt strap,  purse strap, diaper bag or backpack strap.  The straps contains medical a short medical history, medications, allergies, Dr. contact information and emergency contact information.  It was created a grandmother of a consumer of BioRx the parent company to ThriveRx.  
Watch this video to see the Strap Wrap in the news:

If you are interested in any of these books or the strap wrap just email Abby at

Thursday, July 24, 2014

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.

Here is a sample of what we did:

Hand Washing:
Using Hand Sanitizer:
Scrubbing the Hub:
Connecting Tubing:
Changing the Dressing:
I heard from another parent that one or more of these videos are playing on the patient channel at Boston Children's all the time as well.

Monday, May 12, 2014

Ellie was in the Boston Globe again!

Make-A-Wish accepting frequent flyer miles
See the whole article at:

Last 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 never thought we would wake up to Ellie in the Globe again.

 If you have miles that you are not planning on using or can't use before they expire, please consider donating them! Once donated, the miles never expire. Participating airlines include Delta, US Airways, and United/Continental. More information at

Thursday, March 27, 2014

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!

Saturday, November 09, 2013

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 escort/drag/carry Ellie past the hordes of googins and out into deeper clearer water where the novices didn't dare.  What they found there was nothing short of spectacular.  Turtles, live corals, and fish like Ellie and I had never seen before.

Ulua, or trevally, cruising the reef.

Ellie showing off the surface dives that she practiced in the pool all summer.

Abby the Underwater Superhero showing off on the bottom

One very cool urchin.

A school of convict tangs


One of the many poses that Abby used to escort Ellie around the reef.

All told Ellie and Abby were in the eater for almost three hours with one short break for Elecare and snack. Will, was happy as could be to patrol the shore wade in the warm water and throw pebbles.
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