Monday, August 24, 2009


I think back to when Julia was little and how effortless she made it seem to progress through the typical baby stages - cooing, holding head up, laughing, sitting, eating, crawling backwards, cruising, crawling forwards, walking, eating table foods, drinking from a cup. I now know how complicated each of these actions are and think babies are brilliant since they usually acquire these skills in the span of a year or 18 months.

Children with delayed motor skills go through the learning process much slower and often with a team of people directing, prodding and moving their bodies for them all in the effort to train the brain so they can eventually move on their own. For us this means an endless group of people coming in and out of our house, a daily schedule that is set around therapy schedules, and endless worry about each milestone not achieved. It can get very tiring, but it also makes the celebration of each milestone achieved that much sweeter. It makes you want to dance around the room laughing and twirling the girls. It makes you want to bake a cake and........hmm, thinking of cake brings me back to the original topic of this entry - feeding!

The motherly instinct to feed your children is so basic and strong that it is pretty much universal. And when you have a child with motor delays feeding is often a daunting challenge. We are lucky that Emma does not have many challenges with sucking - she was able to nurse fine and transitioned to a bottle seamlessly. The fact that Emma loves to take a bottle has been a HUGE advantage in keeping her nourished. When Emma is in the never-ending teething process, unable to, or just plain doesn't want to eat it's nice to know that she will always suck down 6-8 ounces of fluid. It nice to know, but in my heart what I really want to do is feed my child. I want to not have to worry about weight checks and I want to eliminate the words "failure to thrive" from my child's medical files.

And so the focus of some of the therapy and specialist appointments took shifted to teaching Emma to eat. At this point I had already had enough people telling me what to do and how often to do it and I wasn't looking forward to the input on the feeding. But, I sucked it up hoping that Emma would benefit from the expert advice and that meal time would result in less frustration and fewer tears shed by me or Emma or both of us.

We added oral exercises with chewy toys to our daily list of activities with Emma. She still has oral aversion some days but other days she lets them in her mouth so that is progress. I shifted my focus from eating table foods to making meals that make appetizing purees. And, for good measure, I replaced many of our standard foods with organic foods. Emma now has days when it's a pleasure to feed her (i.e., opens her mouth for the food and finishes a meal in a 30 min. block of time) and days where she has her mouth clamped closed like a pit bull. It seems to me that just when I'm about to give up on Emma eating she comes through with a couple of good eating day. It's almost as if that she likes to take me to the brink of breaking only to pull me back to sanity with a smile, laugh and a ravenous appetite.

I would say that we are now in a feeding routine that works for us. I've accepted that Emma will willingly eat food about 3-4 days/ week and the other days I will have to hide it in her bottle. I've also accepted that she will be eating pureed and mashed foods for a while before she moves to more solid foods. She is adept at drinking out of a training cup and is even getting close to holding it herself. This would be a HUGE achievement in my book since it would give Emma a lot more control and provide us with a bit more time not spent on direct feeding (currently it takes about 3 hours/day). We'll find out in October if Emma is on the height/weight curve they want, but to my eyes and arms Emma definitely feels like she is growing at a healthy rate.

Another change we made recently is changing Emma's nutritionist to Kelly Dorfman mainly for her experience in using diet to address dyspraxia and language delays in children. Since Emma's oral motor skills are delayed and she has some traits that are similar to dyspraxia we felt Kelly was a good fit for Emma's team. Our initial consultation focus was around changing Emma's diet to address her acid reflux and constipation. We also talked about supplements available to promote brain development and better motor skill control for Emma. The outcome of our consultation is a change in Emma's liquid intake from a mostly milk/formula/Pediasure base to a mixture of almond or soy milk, unsweetened coconut milk and a special formula powder. We also are introducing DHA and a liquid vitamin specifically developed for brain injured children to help Emma achieve our goal of less reflux and constipation coupled with good brain development. We are phasing the changes into her diet and have a follow-up appointment with Kelly at the end of September to review Emma's progress.

Well, there you have it. We're doing a lot to make sure that Emma has the best foundation possible - therapeutically and nutritionally - to help her heal and we're learning a lot along the way. As always we are happy to make course corrections as necessary, but for now I think we are on the right path.

4 Comments from readers:

Anonymous said...

Kelly Dorfman!! I've got some of her stuff printed out and I've heard soooo many great things about her. That's wonderful that you're working with her! Absolutely wonderful.

You guys have so got it going on, it's lame I know to be told "you were meant to be her parent"....but darn if it isn't true. I don't know anyone who could do the job you're doing and do it so beautifully and with such a positive attitude. You're an inspiration to me and through this blog you'll reach others as well.

Ps. I know what you mean about having so many people telling you what to do and how and when to do it. It's MADDENING!!

Wherever HE Leads We'll Go said...

So glad that you have found something that is working for you and Emma. She sure is adorable! Hope that she continues to grow well and eat like a champ. : )

I totally relate to your comment about people telling you what to do and when. With so many therapists involved in Emily's life - there is no way we could do everything that everyone tells us (unless we gave up sleep, work, leaving the house, etc.).

Heather said...

Sometimes I hate the way my worth as a mother is tied to how well my child eats. I'm on cloud nine when Nate seems to enjoy his meal and actually swallows it. I feel totally deflated and disappointed when he tongue thrusts it out or throws it on the floor without even trying it. I should at least be grateful that his left-handed throwing skills are coming along nicely.

The Calm The Storm said...

Unbelievable! I am learning so much from reading your blog!!!
I love the pizza crust shot :o)