Sunday, January 15, 2012

All Systems Working

Maybe I should knock on wood.  Lily has been doing so well lately.  It's as if all systems are finally working together the way they should be working for her little body. 

I guess it was around Thanksgiving, maybe a little after that, when the vomiting started again.  Lily had been off of all of her medicine and was doing fine, and then one day it all started back.  As always, it also brought on the frustration. 

When there's vomiting, I dread leaving the house.  One day, we were in the car--this was probably a good 30 minutes after she had eaten--and she vomited while we were driving down the road.  Another day, I had to pick Gabriel up from school so he could go sing carols at a nursing home, and one of the teachers looked in the car to say hey to Lily and Soleil and told me that Lily had thrown up.  I don't even know when that happened.  It could have been while I was loading up the car; it could have been while I was waiting outside for Gabriel.  Needless to say, I had to ask other moms who were at the nursing home if they would take Gabriel in for me.   It makes me a nervous wreck!  I've joked and said that maybe my calling is to be someone who puts together carseats.  (I've taken Lily's apart enough times to wash it, that I could do it with my eyes shut!)

Anyway, after talking to the GI, we discovered that sometimes coming off of the medicine causes a lag in the symptoms the medicine is preventing.  Hence, Lily not vomiting after we took her off it when she had that terrible cold some time ago. 

I guess I should also add that at the time, we had just begun slowly starting Lily on a higher calorie formula.  I started by just giving her 1 ounce mixed with the old formula once a day until I built her up to 1 ounce mixed with the old formula at each feeding.  We are now doing two ounces of the new formula and 1 ounce of the old at each feeding.  Because this formula is thicker, it is difficult for children, like Lily, who have motility issues to tolerate.  So here's another reason the vomiting was probably occurring.

But the doctor told us to give the medicine a week to get in her system, and almost as if she had a crystal ball, the doctor was dead-on.  A week went by, and the vomiting stopped!  Since then, and it's been at least a month, Lily has vomited twice:  one time when Dave fed her while she was still asleep in bed, and just the other day when I decided to give her her water while she was asleep.  For that, I can't complain, and getting out is a whole lot less frustrating!

I called this post "All Systems Working" because it seems like, for Lily, her body's systems need to work a certain way.  It's not just about making sure that her formula is moving through her at an adequate pace (motility).  It's about making sure that she's had, preferably, two bowel movements per day and that they're a certain consistency.  It's about making sure that there's no reflux--not just so her esophagus doesn't get damaged, but also because reflux can aggravate the sinuses, which, for Lily, can also cause gagging if the mucus is too thick in the back of her throat, which then will definitely cause the vomiting.  It's making sure there's no UTI, because UTI's can cause vomiting.  (And yes, we did check for UTI when the vomiting started back.)  And it is about making sure that we give enough time in between feeds and water so what she's had has had enough time to move through. 

All small pieces of a puzzle that cooperate one day and connect and then pull themselves apart when we're least expecting it and decide not to fit the next day.  The picture is constantly changing. 

As is Lily.  While the scale isn't showing much weight gain, her little head is plumping up ever so slightly, and her legs are beginning to feel thicker.  She feels different when I pick her up, so hopefully this new formula is working.  She was such a skinny, little thing!

She continues to amaze her therapists and us.  Each day we practice sitting with a "pretty back"  (not bent over with her muscle bump sticking out), and each day she sits for longer periods of time and will even play with toys with both hands while sitting.  She's enjoying the riding toys she and Soleil got for Christmas.  She is taking tastes of strawberry yogurt and strawberry pudding and peach yogurt--something unheard of in the past!  She's taking steps with less assistance, and she's doing a great job grasping things like the handles on the riding toys.  It's a joy watching her determination and how she enjoys life.  She inspires me--yes, this little girl with her developmental delays and her mental deficiencies--she inspires me, in so many ways, to be better at so many things.  There aren't too many "normal" people out there who have the ability to do that.  What a wonderful little girl!


  1. Lilly was also a hard worker in therapy. They said she didn't whine like their other patients. :-D

  2. How wonderful! Isn't life like a dance? And when everyone (or all systems!) can move together it is so beautiful. Keep up the good work, Lily (and mama, too!).

  3. I thank God for His constant and continual protection over Lily--for every time she amazes the medical community, for every time He imparts supernatural wisdom to docs, and, mostly, for the dedication of her stellar family who loves her so!

  4. We are curious what medicine Lily is using for the vomiting. Your feeding sounds a lot like Faith's feeding issues. We have now added bleeding from the rectum to the mix, but apart from that we have similar sounding symptoms.