Have I mentioned the wonderful web community that I recently joined? It’s called Parent-2-Parent & Reflux in Children. All of the parents who are members have children with reflux–many are tube-fed (NG and G as well as G-J). Some have reflux as their main medical issue. Others, many others, are quite medically complex, so much so that they make Charlotte look like a super-easy case. Some kids were born with their problems. Others have gotten where they are as a result of illness, injury or abuse. It gives me a lot of perspective.
More importantly, the parents I have met there have given Philippe and me a lot of support, insight and ideas for managing Charlotte’s reflux and feeding issues (I refuse to say “disorder” until a doctor does!). It is terrific to have a place to go where there is a “roomful” of parents who get what we’re going through because they have been there or still are there.
My friend Darshani has pointed out that when feeding Charlotte is stressful or inconvenient, “just use the pump, that’s why you have it.” Philippe reminds me of this, quoting her, frequently. It’s actually why we were at Temple Jeremiah yesterday, visiting with friends and trying to feed her there. It’s also why I’ve tried to lighten up and have fed her late, and put her to bed a bit late for the past 3 nights.
Darshani also gave us a lot of tips about the pump. The best 2 tips:
1) she posted to her website (just for us!) a whole page of feeding tips and tricks. With her guidance, we have learned how to set up the pump for the last feed so that it turns itself off and we can go to bed now.
2) Darshani, echoed by many others, read our blog one day and asked why we were still using the Kangaroo Pet pump. She guided me to the Zevex Infinity with a super mini backpack. We were able to get it approved by our insurance super-easily; all I needed was a prescription from the GI doc. He and his nurse, Annie, basically said, “You don’t have the Zevex already?” and signed the script. This thing is small, light, and easy to operate. It has a tiny backpack that Charlotte will be able to wear when she starts toddling. And, if I splurge on a bigger diaper bag, I’ll be able to put the pump and its back pack in the bag. No more feeling like a pack mule. No more stroller tipping because of too much weight. The pump operates in any position, so I can literally throw it in the crib, the stroller, the car and not worry that it’s upright. I never thought I’d get excited about my child’s medical equipment. But, I love this so much that I have to share a picture with you!
On the left: The Kangaroo Pet. On the right, the Zevex Infinity. And, we now have a backpack that is half the size of the one pictured.
So, why isn’t this just the first thing they give you? Dunno.