Moo, Baa, La La....Cookie!

The year is wrapping up, and I realize that a lot has happened in the past six months. In late summer, we moved back to Maple Valley to live with Gabriel's grandparents, and developed new daily routines as I became the full time employee and Thomas became the stay at home dad. We also had to switch therapists since we moved outside the service area of our therapy center. That was really hard; his ladies have seen him go from a 6 mo./2 mo. baby to walking, eating, signing and babbling. Now we have to somehow trust new people that haven't seen him grow, learn and change to be able to carry on where his previous therapists left off.

In terms of language development, we've seen a huge shift. Gabriel went from babbling and using only the "more" sign to using "please", "all done", "sit", "open" and "help" with the correct intent. "All done" was a big one. We finally had a cue where he could tell us he was full at mealtimes, instead of just waiting and watching for the barfy-face. And then, one day, I was reading an animal sounds book to him and I paused at "a horse says...." and he filled in "NEIGH!" very enthusiastically. It surprised us all, but he had memorized the book and actually would associate the correct sound with the correct animal, even if read out of order. Here's a video of him reading the book, "Moo, Baa, La La La", with me



We've moved on to play with his stuffed barnyard animals. He still mostly throws them around, but sometimes you can catch him doing things like this:



Now, he's using more words than signs, and he loves to identify colors for you. Here's one more, just to show you how far he's come. He's play talking on the phone and then reading himself a book:



Even as language is developing, feeding still remains a challenge. We've hit a texture plateau, meaning he eats solids, but only in puree form. We've tried introducing third stage foods, and he can deal with a few bites, but he can't have a whole meal with that much texture. He has his "safe" textures that he knows he can handle, but anything outside the box is really hard to deal with. This applies to liquids as well. We are still working on cup drinking, and the thing that works the best right now is a Honey Bear drinker. Through the straw, it allows us to get a small portion of milk/yogurt mix into his mouth while we encourage him to close his mouth around the straw. He doesn't have to suck, just squeeze to make it work. We use a milk/yogurt mix so that the liquid isn't as runny and he can handle it a little better (plus yogurt is a favorite food and he will ask for it by name). With this, we can get him to self-drink about an ounce or two per day, so the tube is still our primary fluid conduit.

On the other end of the spectrum, chewing also seems to be a foreign concept. I finally got him to reliably lick foods if I tell him to touch it to his tongue, but if he actually bites down and gets a small piece of something in his mouth, he can't handle it and gags until the piece of food comes out. He hasn't figured out how to manipulate foods in his mouth, and by extension he hasn't figured out how to spit things out, so the only way he can get unwanted things out of his mouth is to gag and vomit. We have a long way to go. Thomas has started showing Gabriel some Cookie Monster videos, hoping to have him learn by observation. So far, we have only succeeded in addicting our child to Cookie Monster and he will ask for "cookie" several times a day (he only gets to watch it once, though).



One other complication we discovered is that Gabriel has a partial vocal cord paralysis on the right side. We finally made an ENT appointment and they stuck a scope down is throat through his nose (he was NOT amused). What this means is that liquids can sneak past the vocal cord barrier and that may make it harder for him to learn to drink. There are several treatment options available; right now we're just taking the "wait and see if therapy can help him compensate" approach, but we may have to take surgical steps to either "plump up" the paralyzed vocal cord or move it over surgically so that the gap can be closed by the functioning vocal cord. If you want more detail, have a look at this webpage, it gives a really good overview of what the ENT told us.

Physically, Gabriel is doing very well. He's progressed to jumping, stair-climbing and generally climbing all over Mommy and Daddy. His favorite game is to stand on your lap and then just fold his legs and drop, eliciting an OOF! from the parent in question. This is apparently hilarious. Now that we have a child who loves to run, we also take him hiking. Here's a few pictures of our outings.

On the boardwalk, he's pretending the leaf stem is a straw and putting it in the indentation just under his lower lip (this is how he thinks straws work).

At Christmas, his Grandma got him a "beep beep". We had requested it since he needs to learn to use his feet to push himself forward and backward. That night, at bedtime, instead of crying for Daddy, he was crying for the "beep beep". I think it is a winner.

It's 11:45pm on New Year's Eve. This year is almost over, and the fireworks are starting to pick up outside. Luckily, Gabriel is already in bed asleep. We have a lot to work on in the next year. Thomas is working on publishing a book about preemies and NICUs, using our story as a uniting thread. We are watching our preemie grow up, and are thankful for the chance to do so. I think I need to update his blog banner, he's such a big boy now!

Punctuated Equilibrium

Okay, I realize that it's been three months since I've updated Gabriel's blog, and he's come a long way since the last time we talked. Most importantly, our little man is now TWO! Here he is at his birthday party:

He's gone from just learning to walk to running, climbing up on things, going up sets of stairs and he's just now getting the bend-your-leg-to-go-down part, too. Mealtimes have also improved. Gabriel will "help" by feeding himself yogurt or Gerber 2nd stage baby food. It's pretty messy, but his interest in holding the spoon and using it for its intended purpose instead of as a projectile is exciting. He will accept some water from a cup in his mouth, but only for a couple of sips, so we're still tubing in all his fluids. I'd like to say I could write a post every week with some small step he has taken to improve, but Gabriel doesn't really work that way.

In biology, there's a term in evolutionary theory called "punctuated equilibrium" meaning that things would stay the same for awhile and then a rapid burst of evolutionary changes would occur, and then things would say the same again until another burst of changes emerged. This seems to be how Gabriel develops. Two weeks ago his therapist had given me several things to work on with him, and these are actually things we've been working on for awhile. Between then and now, he had a cognitive shift and started doing some real turn-based play, pointing at objects, recognizing what you want when you point and something and ask him to go get it, understanding how to put together his shape/peg toy (no more trial and error), and even though he's still not talking in words, making it very clear he understands what you're saying and can make himself understood as well. He has definite conversations with his toys in baby babble, and has started babbling to us a lot, too.


His attention span has also improved, he will play with the peg/shape toy for awhile, or bring you books and actually be engaged in the book instead of just flipping pages. Given that his go-to activity has been spinning rings or bowls on the floor, it's nice to see him doing something else. Although, that means I need to upgrade some of his toys. Mostly, we're learning that Gabriel needs a lot of repetition and then he all of a sudden "gets it", just like what happened with spoon feeding back in December. So, we have to do our part and just keep showing him how to do things and talking to him and eventually he might start talking back. Until then, he's going to run run run run run run run ......and.....fall down..... and then run run run run again.

Being a "good parent"

I'm reading a book called Just Take a Bite: Easy Effective Answers to Food Aversions and Eating Challenges, and the section I just read on cultural and environmental aspects of eating was really eye-opening. Our culture puts the emphasis on us, as parents, "getting" our child to eat, and if we don't, we are "bad" parents. While many of the mainstream strategies for picky eaters are to impose penalties for not eating, force a child to eat the "yucky" foods, or offer desserts only as rewards, this doesn't work for children with eating delays or children that are "resistant eaters". Resistant eaters are a level beyond mere picky.

As parents, we are so focused on getting our child to eat, that it becomes about the food on the plate and the amount taken during the day, and ceases to be about giving the child a good eating experience. If food becomes a battle every time, and food creates negative emotions (i.e. from force feeding), it can also trigger the fight-or-flight response. Besides revving up your heart rate and breathing and making it less likely that you want to sit still and eat, it suppresses your appetite, so you're not even hungry! Talk about having the opposite effect from the intended.

Another general belief is that if you don't get your child to eat a certain amount each day (for us, as prescribed by the dieticians), you are failures as parents. No one comes right out and says it, but you feel it. Until I found a dietician I could work well with, I hated our GI appointments, because I always felt like there was this underlying judgment going on -- that it was my fault that Gabriel couldn't hold down the required calories. One of the hardest things we are trying to learn to do right now is to let Gabriel say when he's full. We want to respect his decision, even when it means he's only taken half of his "required" meal, but it's SO HARD. When is it behavioral, and when is he really full? I don't know if it is any easier for "normal" parents, because they don't have a doctor prescribed calorie goal. Gabriel's feeding has been regimented for so long, I don't know how we'll ever get comfortable with the ad-lib stage. This "clean your plate" mentality and the expectation that it is completely the parent's fault if it doesn't happen is hard to overcome. If we want to set up a hunger cycle and teach Gabriel about "full" and "hungry", we have to let him have a say.

Other cultural/environmental expectations that I find myself subject to are "don't play with your food", "don't talk with your mouth full/don't chew with your mouth open", and the belief that certain foods are for certain times of day. We are expected to teach our children table manners pretty much as soon as they start eating. However, the gateway to accepting food by mouth is the fingers. Touching, feeling, and playing with food makes a child more comfortable with that food, and by extension, they are comfortable putting it in their mouth. So we are ENCOURAGED to give Gabriel food to play with; it's a success if he will touch something new. We've seen this in action. When he first started, he would not even touch food, let alone put it in his mouth. It wasn't until he was comfortable touching purees and playing with a spoon that we were able to put the food on the spoon and into his mouth. Chewing and talking with a full mouth is also encouraged on our part, to show Gabriel the mechanics of eating, that we're comfortable with it, and that this is how you move food around in your mouth and swallow. He has all these beautiful teeth, and still doesn't really know how to use them.

Certain foods for certain times of day is very prevalent in our culture. Think about all the marketing that goes into promoting pancakes for breakfast or steak for dinner. McDonald's will only sell you an Egg McMuffin up until 11am, after that it's hamburger time. Diner restaurants will have "Breakfast served all day," emblazoned across their menu so that you can feel awesome about having pancakes for dinner. Kids that are learning to eat need to learn that all food is the same, all food has the same value. It's harder to be picky if no food is held up on a pedestal over others. They may still have favorite flavors, but WE don't need to be the ones telling them that cake is awesome, green beans are gross, and basically training them that the non-nutritious dessert is better than the nutritious chicken, green bean and yam casserole. There is also no reason that you can't have carrots for breakfast and cereal for dinner. I know I'm subject to this: I make Gabriel cereal for breakfast, a protein/veggie mix for lunch and dinner and give him yogurt and fruit for snack. I'm trying to learn to be more flexible and give him whatever works, but since I spent so long making tube recipes, counting calories, and ensuring he gets the USDA mandated balance of foods, it's hard to make that transition.

Raising kids seems to be all about tuning out the world and its many conflicting messages. Food is just another one to learn to ignore. If he's happy and healthy, that's what matters. Now, why can't I remember that on the difficult eating days?

Bipedal Baby

Yes, the joyous/dreaded moment has arrived. Gabriel started WALKING a few steps about a couple weeks ago, and now he is quite good at it. He still enjoys crawling since he can get around faster that way, and the funny knee hop is also a favorite. But he is pushing up to standing on his own and walks across our (admittedly small) apartment all by himself. Walking is not without its trials and tribulations. He falls. A lot. But he's getting good at detouring to a chair or wall to steady himself before he completely loses his balance. What's next? Hiking the Wonderland Trail with Daddy? Running a marathon? Only time will tell what Gabriel will do on two legs.

Manners

Over the past month, we have been adjusting to our new normal, a baby that eats! Gabriel has been taking all of his food by mouth and we only have to give medications and water through his tube. However, he has come up with some interesting ways of letting us know when he is done with food (whether the meal is over or not). Spoon throwing had become a daily sport in our house: how far can you fling it? Can you get it under the couch? What sort of splatter pattern can you create? And so on.


So, Mommy decided to take a stand. Spoon throwing is unacceptable behavior; you get three chances and then everything gets taken away and you get ignored for the length of time it takes me to wash the dishes. It took about two weeks, but we managed to get spoon throwing under control. In the end, I had to tell him "no" and give him a 10 second time out (turn him around and ignore him) every time he threw a spoon to really help him make the connection that the spoon-launching was the undesirable behavior. Now, he usually makes it through a meal without the spoon-toss event. He has learned to hand us the spoon if he doesn't want it or he will try to lean over and put it on the table. Now we seem to be moving on to recreational vomiting (again!). Remember that from awhile back? It used to be a great way to get Mommy and Daddy's attention in a hurry. It took us awhile to figure out that's what was going on and that we had to ignore it, mess or no mess. Anyway, he hasn't figured out the appropriate way to let us know that he is FULL and DONE, even though we use the baby sign language "all done" at the end of every meal. He has yet to present that sign to us. It's an ever changing landscape of behaviors.


We have been working on drinking and adding textures to his food, but so far no success. It's a little easier this time, since the spoon feeding had a long lead up and then one day he literally woke up and knew how to do it, I hold out the hope that if we keep introducing the ideas, he'll get it eventually.

The New Normal

Whenever you see families with special needs children (and I guess when people look at us), you wonder how they do it. How do they deal with the extra challenges day in and day out? The answer really is that you get used to doing things differently; it becomes normal. We have been tubefeeding for over a year to the point where going out and hooking up the baby while out and about is really not a huge deal. We have our extra bag and extra feed kit and it has just become part of the process.

A week ago, we decided to try giving Gabriel all of his food orally, since he was eating so well. We wanted to see what his benchmark was; I didn't really expect him to take everything, but I wanted to see where he stopped so we knew what to work toward. To our surprise, he has been taking ALL his calories orally. Every day. And so now we have to adjust to a new normal. One that doesn't included a food pump, feed bags and endless use of the Blendtec. We aren't tube free, he still doesn't drink, but all that is going through that tube is water and medications. Every morning I wake up and wonder if it's all going to just go away, but after a week, I think eating is here to stay.

So now we're trying to think more like those other parents. The ones that have always spoon-fed their children. We can't just hook him up to his lunch on the drive home from church; we have to make time and space to feed his lunch by spoon. I even packed up his pump and put it away, although we will keep it awhile in case he backslides. It's odd being the parent of a "special needs" child that will eventually outgrow his "special needs". You sit on the fence between the two, not really belonging to either group, but trying to understand the challenges of each. We'll keep trying. And in the meantime, hopefully Gabriel will keep eating!

The gift of St. Nicholas

When we first started our g-tube journey, we heard from several sources that at some point the child would appear to have been visited by the "feeding fairy" and just GET IT. Like a switch flipping or the little cartoon light bulb clicking on above their head. Well, it's been a year and a half since we got the g-tube and it looks like the fairy has finally paid us a visit. I'm convinced the fairy's name is St. Nicholas.
St. Nicholas day is celebrated on either Dec. 6 or Dec. 19, depending on whether you follow the modern (Gregorian) calendar or the old (Julian) calendar. Between the two celebrations, several things happened. My husband had two very promising job interviews and and Gabriel got sick. It was just a mild GI bug that had us feeding him pedialyte and chicken broth for a day or two, and resulting in a very hungry baby. During this time we were praying to St. Nicholas both for a good outcome on my husband's interviews and for Gabriel's health. On a whim, when Gabriel seemed to be keeping some light tube feedings down, Thomas tried spoon feeding him, and he did fantastic, proving to us that the skill set was in there somewhere. However, over the next two days, his spoon skills declined back down to the occasional tastes. On St. Nicholas day (old style), I discussed starting hunger trials with Gabriel after the Christmas break with his therapist. During the chat, we were talking about how ideally, Gabriel would wean himself off the tube as he took more and more spoon food, and I said (and she concurred) that I didn't think that would happen with him. Silly me.
The feeding fairy (a.k.a. St. Nicholas) must have visited us that night because the next morning, Gabriel started eating from a spoon as if he had been doing it forever. In fact, he has been doing so well, that I just cut his tube feedings by half three days ago and spoon feed about a 4-5oz. of food into him at each meal. It is a lot to ask of him -- going from full tube feeds to requiring that he take half by mouth, but he doesn't seem to mind. We normally make his tube food every five days, but this time, when we run out, I think I may just see if he's ready to go all the way.
Gabriel still does not drink. We've been concentrating on spoon time, so cup training has suffered, but that will be our next goal. Even so, pushing fluids through the tube is a lot easier and faster than waiting for a meal to be fed via tube. At the rate he had been going at the beginning of December, I thought we would still have a year or so on the tube as we slowly weaned him off, but maybe we will have a Pascha (Easter) miracle this year! It's all up to him...through the prayers of his Saintly Guardians.
Oh, and yes, my husband got the job, too! :)