Day 18: It Takes a Village

I'm in a bit of shock that our three weeks are nearly done. Today was Naomi's last day of feeding therapy sessions, tomorrow instead of the sessions she'll be having her g-tube removed and surgically closed. I came here hoping to leave no longer using the g-tube but I never dreamed that we'd leave without it. There has been a lot of smiling today. I am so proud of Naomi and the hard work she has done and I'm proud of James and myself too, this program is amazing but it is HARD WORK. I think James had a tougher day today than me as Naomi hasn't decided that he means business when it comes to meal time and she pulls all sorts of stalling techniques on him and he hasn't had as much time to perfect them but I do have faith that he will. We still have work to do with Naomi to get her eating to ideal but it all seems so manageable now.

Naomi and I both are very excited not only for her tube to come out tomorrow but to see Sam, Beth, Elijah and Mary. Neither of us has seen them in three weeks and we miss them. Last night Naomi was asking if the doctor's was open at night so they could take her tubie out and she could go home. It's the first time since we've been here she's really expressed homesickness and it made me sad.

As we wind down and finish this program I am overcome with so many emotions. Even just six months ago we began to falter in our belief if this day could ever come. One thing I know for sure, we wouldn't be removing Naomi's tube tomorrow without so many people who helped us get here. There are so many to thank. First our families who have loved and supported us in so many ways, praying for and with us, watching the kids while Naomi attended her many medical appointments, moving into our home while Naomi was hospitalized, always believing in us, making difficult phone calls for us, paying for medical treatments we couldn't afford and accepting Naomi just the way she is but always believing she could be so much more. Then there are the many medical professionals, her doctors from the family practice one who delivered her, to her pediatricians, and all the specialists we've consulted with over the years, the ER doctors, the nurses, the Child Life Specialists, the paramedics, the CNAs, the medical assistants, phlebotamists, x-ray techs. Her therapists who probably spent more time with her than any other medical professional. First, Paula, the OT at UCSF who helped with Naomi's first swallow study and opened my eyes to how much eating is a sensory experience and was our first feeding therapist, to Monica at CPMC's feeding clinic who told us that poor eating is usually a web of problems not one single thing and sent us down many yet unexplored paths, to Stephanie at CPMC who worked with Naomi for over a year and took a girl from calling a couple of licks of food amazing success to being 50% orally eating and finally here to the amazing team of therapists here at CHOC who have worked with Naomi, James and I so faithfully these last three weeks. But it doesn't end there, I've been supported by a huge network of other parents who "get it," and have kids that also struggle to eat. I love my monthly meetings with the moms (and rare dad) at the San Francisco Bay Area feeding tube support group. Thank you especially to Liz and Judy who even though their children have weaned from the tube they continue to show up month after month and give us all that glimmer of hope that it can happen for us too. Thank you also to the online support from the Feeding Tube Awareness Foundation, www.blenderizeddiet.net that opened my eyes to feeding Naomi real food through her tube and allowed me to meet Eric Aadhaar O'Gorman, a man who despite his debilitating illness, did so much to make sure everyone with a feeding tube had as much information available to them. He told me what my toddler couldn't what it felt like to be tube fed and how it felt to be overfed and how different foods really could feel different. I only with that you could be here Eric to cheer with us in this. And Jamie Kruiznenga and the Pediatric Feeding Disorders Forum on Facebook. I am quite sure that is where I learned about the program here at CHOC and that is where my most enthusiastic cheer leading has come from. Our church family and MOPS group who has prayed, and prayed and prayed for us, even when I doubted God, they never did. They've loved us beyond human possibility, made meals. given hugs, sent cards, cried with me, lifted me up and read the words of mind that my lips never spoke. The many schools and all in them that have loved all my children and comforted them through the crazy times that have made up the last five years. All the friends who have been cheer leaders, baby sitters, dinner cookers, patient listeners, booty kickers (when I got lazy), role models and most of all unconditional in there friendship and support. Two friends I have never thanked properly for propping me up through the lowest of lows. Nancy Goble, I could never have survived that year when Naomi was one without you. I doubt Sam and Beth would have ever been on time to school without you and they might have accidentally been left there afterwards if it hadn't been for your faithful rides. Your friendly smile and your willingness to give while receiving so little in return is something I treasure. Tasha King, I am at a loss of words to express exactly how much your friendship has meant to me. You listened to my tears again and again. You helped carry me through some of the worst weeks of my life. You pulled me out of my house when I just wanted to hide, you are as faithful a friend as I have ever had.

Finally I want to thank Samuel, Bethany, Elijah and Mary. You each have given up so much so your sister could have what she needed. You gave up time with your parents, you've given up space in your closets, you've given up having friends over for playdates for months at a time, you've been the only child whose parent isn't at a school event, you've given up vacations and the best seat in the car. Mary you've given up that special time when as the baby you are the center of your families universe. Those things I can never give back to you but I can say you are the most beautiful, compassionate children I have ever known and I am grateful to be your mom and for your love for your sister. Each one you, Naomi included, has done great things and you will go on to do many more great things because you are amazing people.

We have so much more than a village, we have multiple villages and thanks to all of them we are here and the view of the future is amazing.

Day 18. 17.3kg and nothing through the tube!