“love your crazy, unbelievable, challenging, side-splitting, spontaneous, improbable, unpredictable, exasperating, big-hearted, absurd, delicious, abundant, inspiring, joyous, daring, jaw-dropping, beautiful life.” -Unknown
That string of adjectives perfectly describes our last few days. As it turns out, the last tube feeding (the one that I was carefully emotionally preparing for) never actually happened. On Monday night, right before bed, Francesca ate just enough Kix cereal and drank just enough water that we decided not to take the risk of over-feeding her and causing her to vomit, which would have been a negative experience for us all. Both Alfie and I have felt an incredible shift in the somewhat more sudden than expected disappearance of the responsibility of tube feeding. Francesca has been 100% tube-free and in charge of her own caloric intake since midnight on Sunday.
This step has been both liberating and terrifying. We are all still in a fog of disbelief that Francesca actually eats, even if it is typically just bites and nibbles. I look forward to that moment when the doubt and awe have completely dissipated and I whole-heartedly believe that our child really does eat. For now, there is a part of me that still feels nervous that eating could be a fad, just something she does for a day or two before changing her mind. During those long periods when Francesca has no interest in food, all of the old doubts and worries start to resurface and I feel the panic that she just might never eat. And then, she does.
We had a doctor appointment and weight-check yesterday. Francesca looks medically stable. The ear infection has cleared up completely without antibiotics, which is a huge relief. Her mouth looked a little dry, but not enough to pronounce her dehydrated. She weighed 9.51 kg (20.9 lbs), which is down from her pre-tube weaning weight of 10.42 kg (22.9 lbs), meaning that she has lost 9% of her overall body weight in just over two weeks. She has 200 grams to go before reaching the maximum weight loss that the Graz program will allow. As difficult as it is to watch her pants get too big, each bite she takes gives us the invaluable reassurance that it is so worth it.
During a trip to the grocery store, the extent of her hunger became hearteningly and embarrasingly obvious. She grabbed apples, took a couple of bites, and threw them. She sat in the cart and asked to open every bag and box. She spit out half-chewed food on the ground. She tried apples, bananas, marshmallows, frosted animal cookies, cheese, carrots, Kix cereal, Cherrios, strawberry fruit leather, apple juice, colored sprinkles, and gummy bears. As we loaded our half-eaten, destroyed, and enjoyed groceries on the conveyor belt, all I could say to the checker was, “I guess we owe you for another half of a banana.” It was a perfect reminder to never judge the parents in the grocery store with the completely out of control child. They just might have a kid who feels as though she hadn’t eaten in two years and be following a child-led therapeutic approach of “waiting, watching, and wondering.”
Francesca has found several comfort foods (in addition to ice): Kix cereal, Cherrios, pretzels, and gummy bears. She has a bowl of one (or a combination of all) in close proximity around the clock. Although I wish they were more calorically dense or nutritionally valuable, I am really just overwhelmed with joy that she is in fact eating. Some people put their children to bed with warm milk, I put mine to bed with gummy bears. She holds them in her hands and in her cheek, like a little chipmunk. She talks about eating their toes. For me, these things trump any advice from a pediatric dentist, at least for now.
It is incredible to wash Francesca’s sheets every day because they have sticky gummy bear imprints on them or half-chewed pretzels smeared all over, rather than to wash them because they are soaked in vomited formula. Yesterday, a pair of Francesca’s pants actually came out of the dryer with butter stains on them. For most parents, that is a moment to dread and for me it was a moment to cherish because it was a permanent reminder that Francesca likes to butter both sides of her toast. And even though she is not quite ready to eat it, I know that it will be delicious when she finally decides to take that first bite.
Francesca has added the improbable, inspiring, joyous, daring, jaw-dropping, beautiful words of “I eat” to her vocabulary. Words we thought we would never hear.
#1 by Melissa Thomsen on January 21, 2010 - 7:09 am
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Wow! This post made me laugh and cry and laugh again! Thank you for sharing and more importantly for being you. You are an incredible woman and Francesca is so lucky to have you as her mom. I can’t wait to hear her say “I eat” and see her bite the toes off of those gummy bears. Love you all.
Mel
#2 by chris on January 21, 2010 - 7:37 am
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Hi guys. Have been anxiously awaiting the latest post although I got a bit of news from Scott yesterday. Sounds like the little engine that could, can and is enjoying the climb up the hill. I love that washing bedsheets and butter-stained pants is now an almost joy. Blessings that all stays on track.
hugs
auntie c
#3 by Susanne on January 21, 2010 - 8:57 am
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once again, laughing and crying! Thanks for your incredible blogs, Brett! Please give Frankie a big hug from me ! SUsanne
#4 by regina on January 21, 2010 - 1:07 pm
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Great blog, our experience with margurite at Graz via the net has been quite horrible, with her accusing me of having munchhausen-by .proxy for being a mother much like you are.
Reading back on your past few weeks, you sound like me. Our kids are nearly the same age ( my son will be 2 in a few days) and nearly the same weight (he is about 10kg) and with the same fears, drs apts and weight checks etc.
Our only difference is we do not have him tube fed.. yet I always say, because we have implemented this Graz method and have had play picnics and I am looking to you for strength and hope.
It seems your sweet girl is ‘getting’ it. Our son, seemed to ‘get’ it for a few days, but perhaps we gave up to fast, and didn’t let him explore enough.
Times are heartbreaking, frustrating, and even hopeful sometimes when he pops a shrimp into his mouth the one time a week.. but thank you and we will be in touch.
#5 by Jenny on January 21, 2010 - 8:29 pm
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It IS a beautiful life!! What a breakthrough! You have worked so, so hard. Francesca is so lucky to have you, Alfie, and Blake there cheering her on and giving her the room she needs to explore…and it’s working! Yay, Frankie!!
#6 by Brett on January 21, 2010 - 10:12 pm
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Hi Regina,
I am so sorry to hear that you have not had a positive experience with the Graz method the first time around. In my research, I did find other parents who tried to wean their children several times (and sometimes in different ways) before succeeding. I know that is slightly different, since you are not tube feeding, but the premise is the same. Stay strong! I know firsthand that having an infant or toddler with a feeding disorder is such a frustrating, devastating, heart-breaking experience. It is filled with so many moments of desperation and helplessness. The best things that we have done for Francesca in the last two weeks was to give her absolute control, to stop worrying about weight loss, to give her license to express herself in whatever way she needed with food. I wish you the best of luck!
Brett