February 22, 2013Special Needs Child 1 Comment

Ezzy’s surgeon called. We have the green light to proceed with the surgery to fix the herniated portion of her stomach… Ezzy has needed this surgery for awhile. In May 2011 when Ez was 3 1/2 months, after aspirating severely, she had an anti-reflux surgery known as a nissen fundoplication (for more on this read … Read More

Keeping it Together

February 20, 2013Special Needs Child 1 Comment

Well, I have to say, this has been a really rough winter. Ezzy has been sick, in chronological order, with:A UTI and kidney stones in NovemberA reaction to Lacosamide in DecemberA severe double ear infection and strep throat (WBC 32,500) followed by a weird vomiting spell in JanuaryA GI virus (caught while inpatient for a … Read More


February 17, 2013Advocacy, Special Needs Child

I call it “the other n-word.” Being someone who prided herself on being different, who grew up weird in a rural town (and then weird in a suburban town), I have always embraced my difference different, normal has been something to be avoided. I read it an insult: Ugh, he is just so…so normal! But … Read More

Feeding Tube Awareness Week: Day 7

February 16, 2013Advocacy, Special Needs Child

Today is the last day of Tube Feeding Awareness Week! What a fantastic week it has been. It seems fitting that we wound up our local hospital on Thursday…and it appears as though Esmé is a bit of a celebrity. There were several people who had seen Esmé’s Feeding Tube Awareness Week video thanks to a … Read More

Jayla’s Wings

February 16, 2013Advocacy, Special Needs Child

I am so proud to say that I am on the board of a new organization: Jayla’s Wings. Ezzy and I first met Jayla and her mother Jenn at our Children’s Hospital. We bonded over tubie huggers and feeding tubes. And we carried on some good conversation until Jayla decided the time for talking was … Read More

Feeding Tube Awareness: Day 6

February 15, 2013Advocacy, Special Needs Child

Today’s Feeding Tube Awareness Week Topic is:Outreach: Spread the Word! Before joining the Feeding Tube Awareness Foundation, I saw my role as a tubie parent, especially one who was quite disappointed by her introduction to the world of feeding tubes, to reach out to any new tubies in my area and/or extended social circle. I … Read More

Feeding Tube Awareness Week: Day 5

February 13, 2013Advocacy

Check out the abridged version of this post on the Feeding Tube Awareness Foundation website, where I posted as Chief Communications Maman! It seems like such an appropriate thing to be writing about my daughter Esmé’s tubie for Valentine’s Day. You see, I love my girl’s tubie. It saved her life. But, I am not … Read More

Feeding Tube Awareness Week: Day 4

February 12, 2013Advocacy

The topic for today, day four of Feeding Tube Awareness Week is:We can all use a little help: Friends and Family I feel lucky to write about this topic, because my closest loved ones have been such wonderful examples of how to be supportive of tube-feeding. So, I will be using their actions as the … Read More

Feeding Tube Awareness Week: Day 3

February 12, 2013Advocacy

Today’s topic from Feeding Tube Awareness is “Been there, done that: Help for New Tubies” Getting a tube is an intensely personal decision. But, by the nature of tubes, it can be a decision that has to be made quickly…I remember that when I was struggling with the decision to place Esmé’s tube the nurses … Read More

Feeding Tube Awareness Week: Day 2

February 11, 2013Advocacy

The topic from Feeding Tube Awareness Week Day 2 is: It Takes a Village: Tubie Resources and Support Really one of the most amazing parts of entering the world of tubies has been the tremendous support and knowledge within the community of tubies and their loved ones. So many of the parents of tubies are … Read More