Sunday, June 10, 2012

Summer time

Maggie is still wearing her brace most of the day, but we don't want to deprive her of too much summer fun so we will take it off for pool time and special occasions like a friend's recent princess birthday party.

My friends keep commenting that her neck is looking so much better. I hope so, although her therapists think she should have made more progress. I wish so, too. I'm so tired of these neck issues. It's a daily struggle to get this feisty two year old to wear her brace.

She's having more Botox next month and then in August she's enrolled in an intensive feeding program. My prayer is that it helps and not backfires (sometimes it does). Right now Maggie is drinking water and eating (and then mostly spitting out): pretzels, pepperoni, okra, pickles, goldfish, and well that's about it. Any progress on the feeding front is great. But it is all very slow. I'll admit that it's much easier to skip the "sit down and offer her food three times a day" part and just go right to the tube feeding. Sometimes I admit I do. But then I remind myself that this child has to learn how to eat, and it's totally in my responsibility to expose her to all things food. So even though she usually throws, spits, or plays with the food I put out for her-and it all usually ends up in the trash-I have to hope that one day it will pay off.

I do look forward to the day when I can sit both children down and feed them a meal and be done. No more tube feedings - oh how wonderful would that be! Will it ever happen though? That is my prayer!


  1. Her neck really does look so much better! That is so encouraging! Hope to see you guys at the park or somewhere this summer, miss you friend!

  2. Hi to all! These girls are growing more beautiful every day. Love you so much! Keep up the good work, Lee and Justin. I am so inspired each time I drop by and catch up with you here on the blog.