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.