Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Friday, February 5, 2010

The Last of the Mohicans

An informal survey of Eliza's friends from the world of the non-eaters has lead me to the conclusion that this little band of brothers and sisters, about 20 strong that we know from therapy and support groups, has dwindled to:



For sure the other kids still have feeding problems, but they have moved from non-eater to picky-eater. In case you are not aware of the subtle difference, let me tell you I would gnaw my own arm off if Eliza moved into the realm of picky-eater. Of course you are thinking "oh Anne, have you had your head under a rock, because surely you would have noticed that Camp Non-eater was pretty quiet lately." Alas, it seems my head was firmly buried in a stone quarry. What got me to just about jump out of the quarry was a post I ran across in cyber world with a list of foods for kids who had "feeding" issues. The foods included refried beans, pan fried broccoli, tofu, snap peas, waffles ... dare I go on? Are you flipping kidding me? If Eliza ate only refried beans I would be doing the happy dance until the next millennium.

Kind of sad to think that my perspective has been changed by one spoonful of refried beans.

Moving to France seems more and more like a good idea. I can at least go to social functions with Eliza, her bottle and a mini cupcake for another couple of years without getting the hairy eyeball. Right?

14 comments:

Shari said...

My son is still in the same camp as Eliza - and we are part of the feeding group! He is about to turn 3 at the end of the month and still only drinks formula. He will put lots of different food in his mouth but will not chew or swallow it. I am with you - I would be thrilled if he was a picky eater or would just simply chew or swallow something! I have lost count of how many different therapists and methods we have tried!

Cora said...

I know that my kid belongs to the "picky eater" group, but she wouldn't touch any of those foods on that list except for waffles.

I'm sorry that Eliza's still in the non-eating group, but I do believe with time she will eat. Keep it up....and remember that she IS making progress1

SpeasHill said...

Okay, as the mom of a picky eater (with feeding issues, not, you know, normal toddler pickiness), I can't imagine Becca eating ANY of the foods you mentioned for kids with feeding issues. Refried beans? Are you friggin' kidding me? Next time Becca eats relatively well and I do my happy dance, I'll do an extra one in Eliza's honor. Maybe we can channel some chomping her way.

Tasha said...

You're not alone. Bree is only 1, but doesn't drink at all by mouth and eats about 3 tbsp of food a day. I am thankful for the 3 tbsp but I'm right there with you...I'd give anything to have that amount increased.

Anne, Eliza Grace's mom said...

Tasha,

I don't know if you have considered a tube weaning program at all but there is a well respected one in Graz, Austria that now overs an online netcoaching program for parents who can't go there. It may be worth looking into especially since Bree will eat some amount of food, even though it is a small amount.

The clinic's website is
http://www.notube.at/

There is a similar program in Madgeburg, Germany but I don't think they offer the netcoaching for parents. I had spoken last year with one of the doctors at the Germany clinic and unfortunately the program would not be well suited to Eliza because of the combination of poor oral motor skills and sensory issue. Their programs have worked well with kids who will put some food in their mouths.

Anonymous said...

I know Eliza is not Kenzie... but I really really think Kennedy Krieger was a saving grace. Kenzie went from completely 100% tube fed (no bottles no food no nothing) to 1 year later (last friday to be exact) a "picky eater"

Like you said in your post I was BEYOND thrilled to hear in our followup that Kenzie at the moment is not behaving like a feeding disorder kid but like a picky eater. We have never felt so proud and never felt so happy with the really hard decision to go there a year ago.

There are many kids there that have severe sensory issues and were micro premies and the road when you leave is really not an easy one but Kenzie and her roomate Lilly are both now a year later eating solids (not fully but on the way) and learning to chew better each and everyday.

You should really consider it (i know weve emailed before but you can always reach me via facebook)

- amy greenspan kerker

Anne, Eliza Grace's mom said...

Amy,

Thanks for checking in with us! I am so very glad to hear how well Kenzie is doing with her feeding.

I have in the past looked into KKI and similar places such as the Marcus Institute. While they have been able to provide statistics and information on the success of their programs with tube fed kids and tube weaning I have never been able to get clear information on the success of their methods with children like Eliza who are not tube fed, who have severe oral defensiveness (Eliza never even put toys in her mouth as an infant) and very poor oral motor skills.

Some of her feeding therapists have tried a behavioral approach to her feeding similar to what KKI does (keeping her in her chair, "take a bite," not allowing her to refuse the bite, etc.). It was pretty disastrous and set Eliza back on her bottle feeding for weeks which was dreadful so I am pretty hesitant to go down that road again.

How is Kenzie doing otherwise? I hope you are well!

Mel H. said...

I have one of each at home. Non-eater Daphne continues not to eat. Picky-eater Lucy wouldn't touch any of the foods on that list either. Maybe the beans. If anything, Daphne has taught me that I definitely don't have to worry about Lucy's picky eating. She's eating.

babybeckhamsblog said...

Just wanted to share some encouragement. Looks like you DD is beautiful! Our DS is slowly moving beyond his feeding issues and we send continued progress your way.

About the beans... we started looking for high calorie natural purees with strong flavors because we were stuck on minimal amounts of Stage 2 food. For probably the first 6 months we made "refried beans" by pureeing them smooth and making them creamy by adding some oil and either greek yogurt or sour cream. We did the same with hummus. By doing this we were able to get in 2-3x as many calories for the same amounts of food. Within the past few months we have been able to make them a bit thicker and most recently with some smashed beans (versus total smooth).
I understand your daughter is still working toward these goals, but I wanted to share and clarify how our LO came to eat "refried beans." Thought it may be some ideas for other bloggers.

Best wishes...

Anne, Eliza Grace's mom said...

Beckham's Mom,

I think your list of high calorie foods is great and as I said in my other post, is very helpful to parents of children who have some repertoire of foods and are looking to expand that or increase calories.

The interesting thing about Eliza's feeding issues is that she did eat purees until about 11 months old and stopped almost cold turkey over the course of a few days. Eliza then ate yogurt exclusively until about 2 years of age and then likewise stopped cold turkey. In neither instance was there a triggering factor like an illness.

When Eliza did eat purees and yogurts I was able to add things to the purees to increase the calories (for example in the yogurt days I could add pureed avocado to her yogurt). Eliza also preferred strong flavors and would even drink soy sauce two years ago.

Eliza's inability to develop a rotary chew pattern and her poor lateral lingualization prevent her from being able to chew foods. She has advanced to a mashing foods on her front molars but not to a chewing technique. It is an improvement over the munch pattern (front teeth only) that she exhibited until very recently. Because she has very poor lateral lingualization she cannot form a bolus. Even if she could tolerate the texture of say mashed potatoes, being unable to form a bolus would cause her to spit it out. This obviously limits the foods she can tolerate.

Although Eliza's brain MRI is normal, she has right sided weakness which was very marked this past year in her face in particular. Her neurologist believes that although the MRI is normal her poor oral motor skills are the result of a neurological deficit.

Add to this a healthy dose of sensory issues and you have Eliza, the non-eating 4 year old. Most of the doctors and therapists I have spoken with here and abroad do not believe that Eliza would benefit from an ABA style feeding therapy since a large component of her feeding problem is her poor oral motor skill set. When ABA methods have been employed they were disastrous. It is extremely difficult to teach lateral lingualization or a rotary chew pattern to a four year. It does become "easier" to teach these skills as the child gets older since the child is cognitively able understand how to perform the oral motor exercises and follow complex instructions.

So until then, we take baby steps in the right direction. And I would still gnaw my arm off if Eliza ate beans in any form. :)

Anonymous said...

hey mommy ur the best in the world,I am also mom to micro-preemie born at 26 wks 6 days .she is still on the bottle but ur truly inspirational ,how do u do it? My gal was born after still birth and lots of if treatments (was 26 than and shocked i needed was IF )..there are moment when i feel angry that she is like inspite of thereapy and stuff but are INCREDIBLE

Natalie and Abigail said...

I'm always reminded by your encounter with Designer Mom at the coffee shop whose Designer Child had an eating disorder ... because she wouldn't eat the sesame seeds out of her muffin. Then you spit coffee on her laughing. That may be my favorite Anne encounter story.

We have been so lucky to have moved off the non-eater list to inconsistent-eater list. It's still frustrating when they reject completely today what they ate with gusto yesterday. But, at least they will/can eat food and I am forever thankful.

I know having our girls still on bottles and hearing about Eliza has certainly helped me change some of the judgments I make when I see older kids with bottles. I was firmly in the "no bottles after 1" camp, and for the most part still am, but now I recognize there could be a story behind that bottle and you just never know.

Does Eliza drink from a straw? I can't remember what you've said about that. I wonder if it wouldn't be easier to sort-of forget about the foods and just focus on at least being able to drink from a cup or with a straw. She might drink ensures for a while, but at least you wouldn't get dirty looks because of the bottle.

And in the end, if she's drinking from a bottle for the next few years, well, there's always Saba - or France.

Anne, Eliza Grace's mom said...

Johelen:

Maybe "inconsistent eater" could be a whole new category? So the progression would be: non-eater, inconsistent eater then picky eater?

Eliza can drink from a straw cup or one of the valve-less sippy cups (those "take n toss" kinds). It is harder for her though so when she would drink 8 ounces from a bottle, if given the formula from its box (Boost Kids Essentials comes in a drink box style) or from a straw cup or valve-less sippy cup she will drink about half that because she kind of poops out. So yesterday on her way home from Sesame Street Live I gave Eliza her Boost in its box. She was hungry but only drank about 4 ounces before handing it over.

But still steps in the right direction. And yes Johelen, I still have a small weep over the angst that designer mother must have knowing her daughter will never truly enjoy a poppy seed bagel. :)

Anne, Eliza Grace's mom said...

Anonymous .... thank you for the kind comments.