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 abrogan@thriverx.net and I will send you her address.

3 comments:

Anonymous said...

I'm so happy for Ellie! I sure you hear it all the time, but you guys are amazing parents! Great job raising a confident daughter!
-Katie Murray
(Scott's mom)

Susanne B. said...

Hi Mass. Brogans. Such exciting news to hear Ellie is at "away" camp. Our CA grandson just experienced a week of day camp for physically challenged. They did such wonderful things that Jack (6 with quad-spastic cerebral palsy) is now determined he is sleeping there next year and my daughter is gleefully planning that her daughter at 13 will fly to Maine a week ahead of their regular 3-week Maine visit. We are the grandparents of Camden Brown, who is doing well. Quite small for his age, he is having a great experience playing golf with Grampy and taking lessons at Bangor Muni with "real" clubs! Glad Beth posted to Martha's Facebook so I saw it. Seems so long ago when Gib answered a blog inquiry and followed through with a question about Lake Wassookeag and an intro to Martha.

Anonymous said...

Just stumbled on your page. My son is 4 years old and has Short Gut. We are in Ottawa, ON, Canada but we see followed at Sickkids in Toronto. It makes me so happy to see a child with the same thing as my boy and is doing so well.