We have an appointment to take OUT the feeding tube, folks!

We are beyond excited to share the amazing news that we have an appointment scheduled to remove Lucy's Feeding Tube!!  Her next esophagus dilatation and endoscopy is scheduled for September 2nd and her GI doctor thinks it would be a good time to take out the feeding tube at the same time!  That was definitely what we were hoping to hear at her GI appointment this week and are so, so pleased that the doctor agrees with us.

Lucy has made SUCH tremendous eating progress in the past year.  Recently I was looking back on her food journal from a year ago and she was eating baby food, individual Cheerios and Baby Yogurt Melts, cut in 4 pieces (these are like the size of a large chocolate chip to start with!)  Now, she can eat anything that fits through a food grinder and eats Cheerios by the bowlful, crackers, cookies and even blueberries with very little trouble.  We couldn't be more proud of our little girl and are very excited to have her feeding tube out.

This means that we can take her swimming, which we've only done a few times and always with much anxiety, extra preparation and large pieces of adhesive involved (and NEVER in a lake!!)!  She won't have to be careful about sliding down the slide on her tummy.  She won't get strange looks from kids or people who see her lift up her shirt at the park and wonder what is on her stomach.  She won't have to lie still multiple times a day while we change her dressing - which still constantly leaks.  It means we can stop spending $20 a box on tape (which we are so grateful to have found - it is truly the best, least irritating tape we have found - and we tried A LOT!) and that I can re-deploy all the closet and drawer space that is devoted to extra tape, gauze, dressing and other g-tube supplies.  I can stop carrying around my emergency "just in case her tube comes out while we are not at home" packet.  It feels like a HUGE step forward in her healing process and again, we are so pleased.

So, prayers that nothing changes between now and September 2nd and a huge THANK YOU to all of you who have been our comfort and listening ears during this journey.  I cannot tell you how much I appreciate being able to take Lucy somewhere that isn't our house and feed her through her feeding tube without feeling like people are gawking.  I understand human curiosity - it is just uncomfortable when it is directed at your child.

Obviously, Lucy still has a long road ahead of her towards "normal" eating and removing the tube (which he haven't even used for awhile now) doesn't change anything about that.  However,  something about this step forward feels monumental and we are all about celebrating it!!

"Be joyful in hope, patient in affliction, faithful in prayer." (Romans 12:12)