Wonders never cease. Last week was our first week hiatus from taking the Periactin. We are supposed to do the Periactin four weeks and then take one week off so that their bodies don't build up too much of a tolerance to the medication. It was a true test to see if the medicine is really getting them over an eating hurdle. And I can officially say that for Cameron it has. It's a miracle drug and works exactly like it's supposed to do, though I know for many kids it does nothing for them.
As you might have read in my earlier post, during last week there was a significant drop in the amount of volume of puree foods and liquids Cameron was willing to tolerate, but his interest in eating real food actually increased. At Wegman's grocery store I got an egg and cheese and artichoke frittata (more of like an omelet than a frittata) and he ate 1/2 of that artichoke and all. He also saw a banana on the kitchen counter and asked for it. I gave him about a 2" whole, unmashed section of the banana and he ate it happily. Pretty much he's just been munching non-stop for a whole week.
And this weekend, oh this weekend.... The boy is a bottomless pit! Saturday we re-started our regiment of Periactin, but this time I only gave 2mls after breakfast around 9am. Within an hour he was demanding food. "Cameron, you hungry! Mommy, you hungry! Cameron eat breakfast? Cameron eat snack?" It's so beautiful to hear, even if it's repeated over and over and over and over in a increasingly faster and higher pitch. He now easily consumes one full cup of diced peaches in syrup, his new favorite snack, which he calls "Sweet" not peaches. He also eats about 1 cup of Veggie Sticks a day or more, up to 4 grapes cut in quarters at a sitting, a full serving of freeze dried apple chunks. And every meal he not only eats 1/4 of some kind of grilled cheese sandwich or 1 to 2 full Sweedish meatballs, he also eats a full 6oz of a stage 3 puree plus up to 4oz of whole milk. On Sunday I almost thought I was asleep and dreaming because in under 45minutes he consumed one FULL banana and demanded more. (I drew the line at one full banana. Don't want to freak his system out more than it already has been.) Then tonight he ate about 1 1/2 of meatballs, 1/2 serving of steamed green beans for which he demanded sight unseen until I put them on his plate, plus 5oz of milk and 5oz of a stage 3 puree.
I can not believe this kid is eating like a typical child. I am flabbergasted at the suddenness of the change in his eating. It is just plain WEIRD to be sitting at a meal with my husband feeding Evan and I don't have to do anything because Cameron is now self feeding everything but the purees. I blinked and POOF! He's eating! How did this happen??
For Evan, I think that if he were past the hurdle of touching food to his teeth, maybe if he were already nibbling foods on occasion, a good bit more interested in the food on MY plate, then I feel this medicine would definitely have him eating bigger bites and more quantity. But as it is, he's hungrier and more willing to eat what I make him take on the spoon, so he's eating 4oz of stage 2 foods pretty well and consistently. But he can not tolerate solids in his mouth beyond rolling one goldfish cracker around on his tongue until it's soggy and all the salt is gone. He will take a piece of steak or a meatball speared on the end of a fork and suck on it but he will not eat it or nibble. We play games to get him to touch food to his teeth, he enjoys the games and will play along but barely. He definitely knows that it makes us happy to have food touch his teeth because he tells us he's doing it, he shows us and looks at us seeking approval and encouragement, which we try to give in spades. He even tells us frequently, "Enan is eating." I just wish I could figure out a way to make him comfortable to bite into foods just the teeniest tiniest bit, a tweezer sized pinch like Cameron started out doing. Then I would know that he's on his way and we are not at a permanent stale mate. I have not given up, but it would be nice to see some improvement sooner rather than who knows when.
At least now I can put food in front of one kid and spoon feed another at the same time. If you have never tried to feed two resistant toddlers at the same time, even two healthy no problem eaters that need to be fed by you at the same time then let me assure you, it is STRESSFUL. We've been fighting this battle to get them to an acceptable weight and growth pattern, a healthy sleep pattern not interrupted by spontaneous vomit, a moderately normal approach to eating their entire lives. I don't even know what it's like to have a normal life with toddlers, without always having to worry about this weight gain or that amount of vomit every two to four hours twenty-four hours a day. To think that all of the sudden I have to actually come up with meal plans for Cameron so I always have foods for him to consume is just awesome and strange at the same time. I carry food on my person at all times for that instant that someone has an inkling that they want some food to munch on. I'm excited for the day that all of this clicks for Evan and he finds the pleasure and joy that Cameron has now found in food. All I need to do now for Cameron is teach him to take medicines by mouth, which will be tricky but definitely doable.
We have our follow up with the GI doctor in 4 weeks to review weight gain and decide if it is time to wean the boys off of all formula as well as reflux medication. I am hoping that Evan has a breakthrough coming and that we'll see great weight gain and that she'll cut his formula through the pump down to 150mls at night. But he's still puking maybe once a week at night, so I am unsure that he will be ready for that step as it really depends on his being reflux free.
I am however certain that at his rate, I can probably take Cameron off his 1 hour a night 150mls bolus feeding before we ever go to that appointment. And I'm certain that, because Cameron has not vomited at all in TWO MONTHS, I can begin to ween him off of his reflux medication, Prevacid, starting then too. Then once he's off the Prevacid we will ween him off of the Periactin hunger medication and he will be a completely typical 2 year old toddler. And then with enormous luck maybe we'll survive the winter without any illnesses that require we use the feeding tube for any reason, in which case we will remove his G tube completely. Just in time for his birthday.
Edit: Just after I finished typing this I heard Cameron's pump beeping that it was done for the night. When I went to go unplug him from the pump I discovered the poor thing snoring in a big puddle of his cold wet formula. The medicine port had popped open somehow, yet again, after we'd plugged him in and double checked that the medicine port was closed. So he didn't get all of his 150mls of formula tonight, I have no idea exactly how much he got. But he was a good sport about our having to strip him and his bed down and remake it all over and put new jammies. I will be so happy to see these feeding pumps go.
Here are some pictures from our week...
Chillin with cousin Lucy.
And cousin Timmy.
And cousin Dillan.
You know that old saying? Some things....
.... Never change. (Above: cousin Timmy, Evan in pillows, and Uncle Chris. Below: Uncle Mike at the same age as Evan and Drew, aka Daddy. Same house, same location in living room, slightly newer sofa.)
Because we are superheros, we are practicing to fly like them too.
Come on Mom! You can't catch us!
A demonstration on teamwork.
The boys love to tell me that we are Shape Searchers. They tell me when they see shapes. Evan pointed out the octagon (or as he calls it "ohk-a-gone") and the rectangle ("rek-angle") on our walk back from the playground.
This is as close as Evan will get to biting any solid food.
And this is probably one of my favorite pictures of Evan.
Cameron, do you like grilled cheese sandwiches? Yes Mommy!
Chewie, sneaking in to the playroom for his afternoon siesta, which happens to be at the same time as the boys' nap.
Cameron is in the background shoving fists full of noodles in his mouth, while Evan is figuring out how to stab his meatball.
Uh, you really want me to eat this banana? (24hours later he ate a whole banana)
Feeding a toddler should always be this simple. Cameron's first full cup of diced peaches.
Evan, who was not interested in the peaches decided to visit Chewie.
This is Evan watching Cameron eat his peaches.
And this is Cameron, finishing his peaches.
The boys love to stop and smell the flowers, literally. Sometimes we accidentally come away with a petal stuck to our lip or maybe leave behind a crushed bloom or two or four. But we do love flowers.
See the tongue sticking out on Evan. This is his new thing. The therapists told me months ago, back when Cameron was doing this too, that this is a good sign of a food tolerance development coming. Evan has his tongue out all the time, especially when he's focusing really diligently on something. I love it.
By the way, this toy is a toddler magic wand. It lights up and spins and vibrates and plays music all at the touch of one button.
It is also the perfect $9 toddler weapon. We convinced the boys to put them back.
Yay for a great visit with cousins Phillipe and Sasha!
These are the faces of "get me out of this thing NOW".
I love Homestead Gardens so much.
Evan has keen eyes and often randomly shouts "A clue! A clue!" Then runs to peer closely at what he thinks is the next clue to Blue's mystery.
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