Wednesday, July 4, 2012

Summer Camp 2012 and Happy 4th!

 This is Lily's third week of Summer Camp, and things are going well.  She comes home exhausted and falls asleep around 8:30.  (Normally, she doesn't fall asleep until 11:30 or so.)  The first week, the campers celebrated holidays.  Lily dressed as a fairy for Halloween day, she wore her "Lucky to be me" shirt for St. Patrick's Day day, and she dressed in red, white, and blue for Fourth of July day.  She got to go trick-or-treating, dye Easter eggs, and plant flowers, and trickled throughout the day were therapy sessions, outdoor walks, and dancing "lessons."  I'm told that the OT got Lily to take a few sips from her sippy cup!  Way to go, Lily!

Lily's second week had a camping theme.  She missed that Monday because we were out of town.  But throughout the week, the campers did campfire painting, had fun in sleeping bags and tents, fished in a "pond" in the gym, and took a real hiking and fishing trip.  Again, scattered throughout the day were therapy sessions and other activities.

We're in the middle of Lily's third week.  No therapy today because of the 4th of July, and Lily missed yesterday due to two doctor's appointments.  Camp resumes tomorrow, though, where it will be Athlete Day.  (Monday was Doctor Day, and Lily got to dress up as a doctor.  Talk about a change of roles!)  On Friday, she gets to go to the Ice Palace and go ice skating!

I'm so excited about next week!  Last year, the finale was a luau.  This year, it's going to be a PROM!  How cute is that?!?!  On Monday, the campers are going to make flower arrangements and corsages and boutonnieres.  Tuesday, they get to shop for their prom outfit and have a tea party.  Wednesday is Spa Day, so they'll get manicures, pedicures, and facials.  Thursday is Prom, so the campers will have their makeup done and hair fixed.  Friday will be a field trip to the waterpark.  What a week!!!

Last weekend, we took a trip up past Atlanta to celebrate Joey's 3rd birthday.  Joey also has Trisomy 18.  We spent the weekend with her and her family, and Lily went to her first Braves game!  Joey has been sick for the past few days, so please pray that she gets better soon and the doctors can find out what was causing her high fever.

Good news from Lily's doctor appointments yesterday!  We don't have to see the nephrologist for another six months, and the pulmonologist took Lily off of the Pulmacort.  That was a breathing treatment Lily had to have every night.  We had to follow it with a tongue wiping so she wouldn't get thrush in her mouth.  That's not something that's easy to do since Lily's not thrilled with things being in her mouth unless it's on her own terms.  But the good news is that Lily is down to five medicines:  Erythromycin for motility, Prilosec for reflux, Singulair and Nasonex for allergies, and Iron.  She was on seven (or more if she needed an antibiotic), so five is a nice relief.

Today, July 4th, is a bittersweet day for me.  The sweet--celebrating our freedom and our country--is probably obvious.  But today is also the second birthday of a Trisomy angel, Lilly. (Her blog is I miss Lilly, as I know her family does.  And while I know that they are saddened by her loss, I also know that they celebrate the time that they had with her and their faith gives them strength in their loss.  How I admire this family!

And not to sound morbid, but thinking about one angel always make me think about others.  There are so many others, unfortunately, but a few come to mind because I was more closely involved with them:  Alice (oh, sweet, sweet Alice), Mikayla, Julia, Oliver, Caleb, Nolan, Brianna, Breanna, Grayson. . .Sadly, that list goes on. 

BUT, what strikes me so about the loss of these precious children is the greatness that has come out of the loss.  All, and I mean all, of the mothers of the children listed above have been so inspiring in their loss.  These mothers have walked through their loss with such grace and beauty.  I am constantly saying that I hope I will be able to do the same in the light of my own loss.  
So on a day like today, I am celebrating, sure, but there is also a sadness that keeps knocking at my heart.

I will post pictures of Lily's camp experience later, but Gabriel needs some attention, so we're going to either play superhero or look up knock-knock jokes on the Internet.

Happy Fourth!


  1. I am glad Lily is having so many fun opportunities! Erin

  2. What an amazing few weeks! I'm so thankful that Lily gets to experience all of these things!!