Ready, Steady, Go

Heath is on his feet!  Over the past couple weeks, he has become a certified puller-upper and stander.  Here he is getting up to play make believe with Mr. Horse and Sheep.

Most of his make believe centers around animals who like to kiss, snuggle, fly through the air at high velocity, and of course, eat.  He makes little smacking noises as his barnyard friends munch on green toddler Legos.  Sometimes he even puts this fake "grass" up to his own mouth and pretends to eat it before politely offering more to Mr. Horse. 

The unfolding of Heath's abilities lately has been fascinating to watch.  Despite the fact that he never crawled and still bottom-scoots from place to place with effort, he has entered the stage of complete and total obsession with walking and upright locomotion.  His shoes are very much connected with this power in his mind, so much so that he can't go to sleep without them on.  After getting a sturdy pair of blue suede shoes from his buddy Zander, Heath realized that the stability and support they offered were helping him to stand and step more effectively.  He would weep giant teardrops if they were removed at bedtime, so we conceded to a nighttime footwear policy (and gritty sheets.... Eww!).  At night, his legs are moving all over the place.  Something in his brain has clicked and he feels he is ready to walk -- with our help -- everywhere he wants to go.  

The only problem is, he's not.  Or rather, certain lower backs are rebelling against spotting this little monkey as he walks up and down stairs, down the street, around restaurants, and into the kitchen for a snack.  His determined little legs are all over the place yet he is several months away at least from dialing in all the balance and coordination walking will demand.  Integrating different muscle sets is one of his challenges, but one that he is set to conquer at the rate he is going.  This gotta-walk obsession is typical for toddlers, who summon extraordinary powers to get up and running, so possibly his single-mindedness will result in leaps faster than we anticipate.  In the meantime, I envision a system of harnesses and pulleys running all over the house that would enable him to scuttle around at will as we stand, upright, cheering him on...

In the meantime, a Craigslist push-trike gives Heath a wonderful sense of freedom when we are out and about. 

 

He's also working on his penmanship.

Reading....

...and of course loving new and different foods, like Spinach Littles and Danish snitter pastry.  His weight gain was fantastic for over three weeks, then he got a cold and dropped half a pound, which he is now regaining.  Happily, he never stopped eating and drinking during his illness and we did not have to use the tube at all for supplementation!  Our pediatrician says we can remove the button from his tummy once his weight returns to its previous level and remains stable. 

Self-feeding is the next frontier! 

Heath has to work harder than other kids to feed himself efficiently, but to his credit he's determined to do it. A fair amount of food goes flying as he works to master this skill.  I feed him the first ten bites or so, then he grabs the spoon and focuses hard on scooping up food and getting everything aligned for a successful runway landing in his mouth.  When the spoon gets tiring, he plunges his hands into the bowl and tries to feed himself with his fingers.  At first, this chaos freaked me out but then I realized that learning about these crazy textures is an important part of the process.  Just as with feeding therapy, my anxiety wasn't going to help Heath relax and figure out the problem.  So we are striking a balance between ornamenting the dining room and its occupants with refried beans and maintaining sparkling cleanliness.

He's actually eating a strawberry in that picture, which takes a lot of skill! 

Maybe because Heath is telling us so clearly what he wants to learn next, I've been reflecting on the cues kids give us that they are ready to tackle a new milestone.  For tube-fed children, this can be challenging to interpret.

When Heath was on the tube, it was difficult to know whether he was ready to try eating or not.  For a long time, I falsely believed that kids who were gagging and vomiting were not ready to become eaters, because I read this in a protocol designed by a well-known feeding therapist.  I had also read that kids like Heath who had never eaten before had to be taught to use their mouth, lips, and tongue properly before they could eat, and I fretted.  How could he learn these skills when he didn't want us putting anything in his mouth?  In retrospect, I see that Heath was sending clear messages that he was ready to try food, with or without an oral-motor workout:  despite the fact that he wasn't hungry and vomited daily, he began to grab food on our plates, follow our every bite with his eyes, and go all googly in restaurants, where everyone in sight was chowing down.  Though he stopped short of tasting or swallowing much, these were signals that a part of him was psychologically and physically ready to join the feast (We knew his swallow was safe for nearly a year before he became an eater).  

All tube-fed children are unique, and some do have significant oral-motor or sensory challenges (e.g., supertasters), for which innovative therapeutic techniques exist.  In Heath's case, his mouth wasn't really the problem.  As I've written before, tube-induced nausea, lack of hunger, and oral trauma from lifesaving medical procedures were the issues that made him so averse to eating like other children.  Once those issues were addressed, his mouth jumped on board and his so-called sensory issues (i.e. trauma symptoms coupled with the novelty of eating) resolved.  Within weeks he was taking in multiple textures and consistencies:  thin and thick liquids, crumbled meat, thick breads, lumpy veggies, crunchy snacks, bananas, strawberries, cheese..... All without a single serious choking episode!  I'm so grateful his whole medical team supported giving him a chance, since we had no way of knowing for sure that he was ready to become an eater until he showed us.

Many of us in the Seattle feeding community are rooting for a little boy named Matthew this week, who is weaning here with Markus.  Matthew is a smaller kid, who had a feeding tube placed because of concerns about his growth.  Since getting the tube, he has struggled with persistent vomiting and intolerance of more than a couple ounces of food at at time.  Compared to most tube-fed children I have seen, he shows huge enthusiasm for food.  (I recall him struggling to open a bag of chips almost as big as he was last time he came to picnic!)  Though it is hard for us to see Matthew dropping weight and heading for the most challenging phase of the wean, we are all hoping to learn from him as he finds his way with food over the coming weeks.  Is he ready to eat on his own?  Only he can tell us. 

Wishing Matthew's family and everyone a happy weekend and lots of summertime fun!

Comments

[melissa aka equidae]

how great Heath is looking and so good to read such great news of eaters in Seattle. Greg hardly uses a spoon to eat he prefers hands and only accepts food from us when it is soup ( and is the time he tried to use a spoon) he does like to try the different untensils but so far sees its easier to go by hand :) I am in no hurry for him to change though yeah it can be quite messy! Still I always lay down a fork or spoon next to his meal and let him choose if he wants to try or not :) hugs dear

[Jenn S in DC]

Wow!!! This is just fabulous, Jenny. Truly, I am in awe of Heath.

[daphna]

I am so proud of Heath, sounds like he is progressing amazingly and is definitely a happy little guy!! I love his determination. I'm curious to see what happens with Matthew because he sounds a lot like my little one.

[jaymie]

Thank you so much for your comment on our blog. It comes at an ironic time. Kory and I were talking in the car on the way home about maybe trying to get in contact with you guys and talk feeding stuff! Then I come home and check my email and there was your comment!! I would LOVE to talk to you a little bit about Kanyon and if you think it would be good, I would LOVE to contact Markus. If you don't mind, maybe you could email me when you get a chance and we could "talk" a little! Thanks so much!
Jaymie

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