Thursday, September 26, 2013


I was asked recently whether we were starting to get a system down when it came to doctor and therapy visits. They wondered whether we'd been able to figure out which specialities and appointments were helpful and which were more trouble than they were worth. It's such a good question, and though my answer at the time was, "Yes, we are figuring it out," there are so many moving parts that are always changing. For example:

1. Ophthalmology. Our sense is that Keira doesn't see well. She doesn't see very far from her face and her best fields of vision tend to be low and to the right. We have been taking her regularly to a pediatric ophthalmologist. They "test" her vision by seeing how she responds to light changes, large cards with black and white designs that are flashed in front of her face, and noisy wind up toys that are presented to her. These assessments are highly compromised due to her poor motor mobility at this point, so the doctor generally tells us only what we already know. However, we have been told that, if Keira's left eye continues to wander inward like it does, he could surgically alter the muscles of that eye to straighten it out. Hmmmm...

2. Gastroenterology. Keira has been hovering at a whopping 15 pounds for months now. Her height to weight ratio is good. She still has pudgy baby legs. But with only 12-15 ounces of food intake per day, she doesn't have a lot to work with. Sigh. So, we aren't in an emergency situation, but this scenario just isn't right. I don't even know how to answer the pediatrician's questions about this anymore because there are so many theories and moving parts. She takes Miralax to make sure that the waste isn't backing up and keeping her from eating. She takes Prilosec to keep her from spitting up after she eats. She takes fortified breast milk, high calorie formula, and/or this new (brown!) toddler formula that's delivered to us from Norco medical supply. She's also trying to learn to eat, so she's taking some solids. The PT thinks she may not be eating more because her hyoid and other mouth muscles are too tight. The OT thinks she might be too overwhelmed. Jeff and I wonder if her brain's ability to register hunger isn't good. A CMV Mommy suggested that her stomach may not be emptying properly. The pediatrician wants us to consider a G-tube.  In case you don't know, that's a tube that goes straight to her stomach, through her abdomen, that we would just pump full of partially-digested food at meal times.

It's gotten complicated, see. We're going to visit a GI specialist to explore our options. I know that a G tube is on the table, but I have weird feelings about it. It seems so unnatural to me. Not that  we aren't doing anything else that's unnatural, but there's just something about this particular intervention. It makes me wonder (albeit ever so fleetingly) if she's even supposed to be here if that's what it takes to keep her going.

3. Positioning systems. During PT last week, I was asking for ideas for how to keep Keira in proper alignment when she's left alone to play. I have strategies (read tube socks full of beans), but often find that her head still slumps to one side. This is problematic because we don't want K to develop scoliosis and back pain on top of everything else. The PT advised me to start researching positioning devices, including something called "Tumble Forms" and "Stroller Wheelchairs." Such devices, paid for by Medicaid, would become the place she would sit in the house during all downtime. They are adapted to suit kids for their particular needs. As something I've been curious about for a while now, I was excited when the PT said it was time to start looking into this stuff. The funny thing is, in spit of my excitement, I haven't yet. I guess I know that once we go down that road, there's no going back. Once we have a wheelchair in the house, we may always have a wheelchair in the house.

As these issues circle round and round in my head, I'm reminded of something a friend said to me a while back. The friend lives in Cambodia and said something to the effect of "I feel sorry for you for having to do this in America." I was puzzled by her comment, and asked her to tell me what she meant by that. She explained that in America there are so many expectations. Because there are so many options and so much science and so many specialties, a mom is expected to access every possible accommodation and intervention, which can be exhausting and can actually take the joy out of parenting.

Such an interesting perspective, I thought. And so true. We usually feel so lucky to live in the U.S. and have all of the latest and greatest available to us. Whereas in Cambodia, or elsewhere, you have your baby, you love your baby, and you do the best you can with what you've got. Period. So much less of this tightrope walk between the hope for more development and services and interventions on one side and acceptance, love, and resting in is on the other. I know that those things don't have to be mutually exclusive, but it isn't easy to hold them at the same time.

As it turns out, accommodations and interventions don't always seem so accommodating.

I know, right?

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