Tuesday, June 30, 2009

Harnessing independence.

There are many things that I said I would never do before I had kids- that when I had kids I realized were not the end of the world. Matching clothes- overrated. Dirty faces-inevitable. Still won't drink out of a cup after Bella though- ick. The child is the opposite of a particle filtration system, which in my beverage is not a welcome thing. But I will not leash my child. As a younger person, I always thought-if you want to walk something on a leash- get a puppy. I have four of them. 2 of which run in opposite directions when we are in public. That's why I bother taking the older two, so they can help corral the little monkeys when they break free. People out there will not put a leash on an animal - but put a friendlier version on and call it a harness. There is a child equivalent- if you haven't seen it- you probably don't have rope burns on your legs. Here's how it works..It is a fluffy backpack, inocuously disguised as a frog, or teddy bear. And attached to the backpack, is a leash. SO your child gets an additional 3 feet of grazing space before you can yank them back into your bubble. It's like hands free parenting- leaving your hands open to juggle shop items while your child is 3 feet away also "juggling" shop items, or clotheslining some poor unfortunate soul.

Don't get me wrong- I don't think leash parents are bad parents. Strapping a child into a stroller isn't much more than a comfy restraint system with storage and a cupholder, it still seems less demeaning. Everyone has their personal choice. I more often than not choose not to go out as opposed to battling toddlers or leashing them, that's my choice.

Unfortunately for the past 6 months, Lily has spent a huge chunk of her time leashed to some sort of contraption. Every night we hook her up to her feeding tube which is about 5 feet of clear tubing attaching her belly to the pump that delivers nutrition. The plus side- she doesn't starve- the down side- she is stuck. She can't get up in the middle of the night to go potty, she can't get out of bed and wander or get a book or a drink of water. On the plus side- she can't get out of bed and wander. So she would sit in bed and scream at the top of her lungs moooooommmmmy!!! And when my heart climbed back into my chest- I would run and see what the crisis was. I learned not to show my face when she yelled for daddy- which was problematic when Phil was at work. It was Ok though, after a few tries, she switches back to moooooommmmmmy.

Now that she is done with the inpatient chemo- we have weaned her from her feedings at night. She is eating like a normal kid again and even resumed her love affair with ketchup. It has been an interesting experience. We started by gradually decreasing the quantity of her feedings at night. When she would wake up nauseous, we'd up it a little the next night. We got down to 10 mL per hour- which ends up being about 90 mL a night- which is not much- it's a few swallows and we established that nausea was no longer a problem. The problem was her attachment to the routine, the hooking up of the tube and having that with her at night. This past weekend- Phil packed up all the paraphenalia in the little back pack and some cans of formula- but she requested not being hooked up. Score. As soon as we got home, Phil dismantled the pole the feeding machine hung from and took all associated machinery out of her room. She saw what was going on and did not like it. That first night was rough. She didn't want to go to bed. But she finally did, and it was a treat to have her walk in our room the next morning and declare that the sun was awake so it was time to go downstairs.

We still use her tube for medicines 4 times a day. I have started reducing her anti nausea meds (we are down to half her usual dose)and haven't noticed a major change. We had a little field trip to radiology today to do her bone age to see how it has progressed since the last time. Other than that, I am party organizing. As for the party- it is fenced and kid friendly so feel free to leave all leashes at home.


  1. Hooray!! One more hurdle cleared! I can't imagine the sleep disruption being hooked to tubing would create---yey freedom! I can't wait to see/hear about the party, and I soooo wish we could be there to celebrate with all of you. Independence day has even more symbolism this year. Love you!!

  2. I am so excited for you, Lily!!! I am so proud--you have been so brave for so long. Your Mommy and Daddy are so brave, and Phillip and Kiera and Bella have been so brave, too! I wish I could be there with you this weekend to celebrate how far everyone has come and survived. We will celebrate here for you and watch the fireworks thinking of YOU! I am so in tears knowing that you have moved away from the feeding tube. I love you all. God bless - Love, Grandma

  3. Congratulations!!! You are doing it!!! How wonderful to have so much to celebrate!!! I wish I could be there to celebrate with you. I look forward to hearing all about it. Yeah for Lily and the Mallory's. Love, Mom(Grandma)


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)