Monday, February 28, 2011

Eat to Live...

Every little moment matters. I can imagine that if you don't have a child with health issues, you might take certain things for granted. Like mealtimes. It's almost funny how much joy I get from watching my little guy eat "normal" things. Like a quesadilla (vegan cheese of course), or a PB&J. We've even gone out to eat as a family a few times in the last week. This is HUGE. And Sean and I have been so thrilled by how wonderfully Max has done. He sits in his high chair. He eats. And eats. And eats. And of course he throws some things on the floor, but he's 21 months old.

Had he not been sick, I might've taken this all for granted.

A dear friend emailed me the other day, and said that she's excited to hear the next chapter to my last blog entry, about what happens next with Max's eating and how we treat the Delayed Gastric Emptying. Well J, I had to laugh when I read your email, because the truth is that I HAVE NO IDEA!

I was hoping that by saying that part was "to be continued" it would buy me some time to figure all of this out. Yeah, not so much. The easy part? Smaller meals, properly spaced. Nothing high in fiber, nothing too high in fat. But according to the allergists, we can start trialing SOME of his allergens again. And according to the GI and nutritionist we shouldn't. According to some very helpful research that we've found online, we should be dosing his meds differently. And according to the pharmacist it won't matter. According to Max he is ready to "eat, eat"! And according to the Gastric Emptying Study we should probably wait a few more minutes.

While I have become an expert in many things GI/Allergy/Nutrition, I often have no fucking idea what to do next.

So we let Max have a Mickey Mouse shaped pancake at the diner yesterday morning, even though it had milk and egg in the batter. And I'm leaning toward following the "Reflux Rebels" cult and forcing the pharmacist to make his reflux meds in 5 day batches, because my charting shows that it does make a difference. And when Max eats a huge amount of quesadilla with vegan cheese and ground turkey for lunch, I am mostly cheering for him as he takes these great half-moon shaped bites out of it like a BIG BOY does, while at the same time feeling a little anxious that maybe I'm feeding him too much what if he can't handle ground turkey is the tortilla too high in fiber oh no maybe you should stop and have some water does that burp mean you're about to puke?????

Like I said, we're somewhere between not knowing, and finally figuring it out.

Tuesday, February 22, 2011

On The Other Side Of This....

Yes this is a picture of Max trying to climb the outside of the staircase. It has nothing to do with this post, other than it's cute. Until he hurts himself, I guess....

When I was in college I worked at a residential treatment center for kids who had been through severe trauma. They would often go into violent rages, and we were all trained on how to safely and gently restrain them until they were safe enough to not hurt themselves or anyone else. This information also has nothing to do with this post, except for the fact that I learned a valuable lesson in that training. There will be a point when we are on the other side of this. There will be a point when something scary ends, and you have reached the other side safely. The time will come when whatever weighed so heavily on you happened yesterday, and now it's tomorrow, and you are on the other side looking back. Actually, the way we were taught it in restraint-training was "when the 150 pound ten year old is breaking windows and overturning tables, and then tries to beat you up, just remember that it will end at some point." Nice, huh? But it stuck with me. And when I'm scared, or anxious, or it's 8 am and I'm at Stanford hospital wondering "How in HELL is my 21 month old going to hold still for a 90 MINUTE Gastric Emptying Study while being restrained to a backboard and placed underneath an ultrasound machine?" I have to remind myself that this afternoon we will be running up the rubber mats at gymnastics, and Max will reach out to hold my hand and his little voice will yell "Go, go, go!" and he will laugh out loud as we run together all the way up to the top and then roll down again. This afternoon, we will be on the other side of this.

So he spent 90 minutes lying there, watching Curious George, alternating between calm repose and screaming hysterically "Ouuuuut!". He was amazing, quite frankly. He was absolutely god-damn amazing. So adaptable. So sweet. So resigned. So great at calming down and getting in the "zone". We needed this test. We need to know how food moves through his belly, and at what rate. It is one of the last remaining pieces to this puzzle. But when he had finally relaxed his body, and was watching The Man in the Yellow Hat chase George around for the umpteenth time, I walked quietly behind him where he couldn't see me, and cried. Because his little head was just barely peeking out of the machine. And his sandy blond curls were fanned out on the pillow that was soaked with sweat and tears, and his bangs were brushed to the side where his Daddy had been stroking his forehead when he was singing "Itsy Bitsy Spider" to him.

I cried about how beautiful and resilient and charming and happy he is, even after going through all of this. He should've been at music class this morning, not eating a bowl of breakfast laced with radioactive isotopes so a cranky radiology technician could track it's journey through his digestive system.

He had to lie there for 30 minutes, and then they kept him in the swaddle/seatbelt/really it was a straight-jacket but his hands were free for a 20 minute "rest" period, and then 30 minutes more. So when the tech came back in to say that she wanted him to stay there for 15 more minutes while she did her paperwork and reviewed whether or not they needed to take more pictures, it didn't go over so well. I followed her back into her office. "Um, excuse me?" I said, with my I'm pretending to be nice but I am about two seconds away from becoming super-bitch if you fuck with my kid voice. "Yes?" she said. "He's done." I said. Sweetly.

"I'm sorry?" she said.

I said "He's DONE. We're taking him out now." NOT so sweetly.

"But we might not have gotten enough pictures....." she said.

"He's been in there for an hour and a half. Sorry. That's it." Except my "sorry" wasn't really an apology at all, it was more like "Sorry that I am looking at you like you are a total moron for thinking that it is ok to ask a toddler to endure this for any longer. And I'm sorry that I am being 'that mom' right now, but I'm allowed to be. Because I am his advocate. My husband and I are the ONLY ones with his very best interest in mind. And Max can't tell you to go fuck yourself, and your paperwork, because he's not yet two years old. But I can. And I will. Because my job is to protect him and make sure that he only has to endure what is absolutely necessary to keep him healthy and safe. Sorry."

And I wasn't even finished with the last few words (and a GREAT steely-eyed glare) when I could hear Sean ripping the velcro off of the "seatbelt/really a straight-jacket" and wrapping Max in a huge hug.

Guess what? He does have Delayed Gastric Emptying. It's official. Even with the medication that he's on, his digestion is still delayed. What happens next? Well, that's another post. But for now, we are breathing a little easier knowing that we finally have a framework for what is going on.

And this adorable little guy?

Let's just say that the radiology tech called me at 8 am the next morning.

" this is C. from Radiology. Yeah, well, we were cleaning our machine last night and we found some of your sons TOYS stuck in there."

After the first 45 minutes Sean and I just might have let Max entertain himself by stuffing things into the ultrasound machine by his head. Maybe. I mean, hypothetically, if we did, who would blame us right?

"Yeah, my boss wanted to know why they were there. And I told her that THE MOM was letting him PLAY with them during his procedure."

Yes. I was. Thanks for calling!

Sunday, February 20, 2011

Piano Man

Do you see the one random curl sticking out from the back of his head? That's what helps him to play so beautifully....

Saturday, February 19, 2011

There and Back...and Back Again

The rain is beating a staccato rhythm on our windows, and my two boys are chatting in the living room about "car, car" and "beep-beep". All is right with the world, even though most days it isn't.
My happy little guy is sick again, vomiting three times in the last week. Once in the car seat, on the side of the road, while some bitch in an ugly sedan yelled at me to move out of her way. "It's an EMERGENCY!" I yelled back, as I was frantically undressing my toddler in the back seat, peeling away his puke-stained clothes and wiping his little shivering body down with a baby wipe. "Brrr! Cold!" he said, with his eyes wide, perched on the edge of the backseat. My own eyes brimmed with tears as I snuggled him back into the spare sweatshirt that I found next to the snack cup and the ten stuffed animals on the floor.
Though our week has been marked with 1 am drives and 6 am wake-up calls, I am overcome with pride for our brave, silly, sweet little boy. He is a one-kid love parade. All week he's been saying "Hug!" and then coming up and giving us a hug. He says "kiss" and grabs your face and plants one on you. The other night he rolled over next to me in bed, hugged my leg, opened his little eyes and said "Hi!" and went back to sleep!
He was sliding a credit card (yes, he loves to play "pay"...I know, consumer lifestyle, blah blah)down his car ramp the other day and I heard him say "Set, Set, GO! Wee!" like we say when we're sliding at the park. He says "tick tick clock" and counts with us when we go up the stairs. Favorite numbers that he chimes in on are always "two, eight, nine".
He still loves hiding in this darn tent, and yells "No! Hide!" when we tell him it's time to go. In fact, he makes us chase him around the dining table when he doesn't want to go somewhere. I've started leaving a coveted toy on the chair closest to the door when I want to lure him out, and sure enough, he comes tiptoeing out like a little mouse to snatch it and run back, but I catch him (of course) and delight in the fact that I am still smarter than he is (is that wrong?).

As hard as it's been, as long as our nights can be, as terrified as we are that he is sick again and nothing seems to be working, we are still struck by how amazing it is to have this little person in our family. I love hearing his tiny voice shout "rain, rain!" as it hits our window. I love that he takes my hand and tells me to "walk, walk" so he can show me something. I love how he curls up next to me when I put him down in the guest room, and I fold my legs over his tiny legs to keep us warm. I love how his big eyes look at me (from about 2 centimeters away) when he wakes me up in the morning, and when I open my eyes he gives me a huge grin, and then snuggles back next to me. Even if it's for only 3 seconds more, and then he's off and's still the best thing in the world.

Friday, February 11, 2011

Five For Friday

1. We still have to drive around to get Max to sleep. Every nap. Every night-time. I'm a one-woman neighborhood watch program. I know who's home, who has a new car, whose kids are out past curfew. I dare someone to burglarize our 'hood, cause I'm out there and I will be the one to bring you down. Really. Someone please break into a car or something so that I can put all my driving around to good use.

2. Max "helped" me fold the laundry this week by taking clothes out of the basket, giving them a good shake, and then putting them in a pile. At first I couldn't figure out what he was doing, but pay attention to how you fold laundry next time....see the shake?

3. Max ate 2 bites of blue crayon yesterday. He ran away too fast, and I couldn't catch him before he chomped down. Doesn't help that he was yelling "No! Hide!" Inappropriate response was to tackle him, grab crayon, and then laugh hysterically when he had bright blue saliva dripping out of his mouth. I will not be adding this to the food log that we show the GI doc.



Ok, I lied. It's actually 6 For Friday....


Tuesday, February 8, 2011

In My Dreams

Dear Max,

You're big. Really. You are officially a toddler boy. And I am overwhelmed with gratititude, love, and laughter as I watch you enjoy every minute spent hiding under your tent....

Peeking out at the world....

being silly on purpose....

and dreaming up new games to play....

You are thoughtful and curious. You walk your train tracks over to the windowsill one by one, and then race your train up the wall.
You have learned to "dunk" your ball in the basket (yesterday you said to me "Dunk ball!"), and you know how to "roll" it vs. how to "throw" it and "kick" it. We play "kick" in the living room, and you take my hand and tell me "walk" as you lead me over to where you want to play. You have so many new words, like "cupcake" and "slide". When I tried to give you your bottle yesterday you said very forcefully "NO thank you"! And best of all, you reach out and put your hand on my chest and say "love". Well, it's your own word for love, because it sounds like "oooof". Of course there are the oldies but goodies "booooo" for blueberries and "chick" for chicken. You love your new friend "Si-Si", and when we played at her house you both ran up and down the hallway cracking each other up. You with your "marching run" and S. with her dancing wiggle. I am so proud that you are a sweet friend and that we are blessed with knowing so many wonderful families. Even though you dumped water on each other at the water table. S. wiped your mouth for you when you ate some bubbles by mistake, and you gently closed the door of the play car when she sat in it. I love watching you learn about being a friend.

My days are better with you in them. They are what I dreamed about when I thought of being a mom. And sometimes they're nothing like what I imagined. But that's OK. We're making our way.....
Look closely at what's on his fingers...he walked all around like that for a while!
The other night you slept beside me in bed, and when you were sound asleep you started whispering. "Mo-Mo?" you said, in a tiny quiet voice. You must've been dreaming about Smoky the cat (you call him Mo-Mo) who sometimes visits our backyard. And then you said "Da-Da". I don't know what your dream was, but I love that your little imagination is still at work, even when you are sleeping. We've had some nights recently where you have amazed us with your sleep. Some nights where you have gone to bed in your crib, and woken up in your crib. Some nights where you have slept straight through. I am so ridiculously proud of you, and so unbelievably thankful that you are starting to feel better.
Naps or no-naps. Driving around or snuggled next to me in bed. In yesterday's jammies or your weekend "Jersey Warm-Ups". You are my best, through and through.


Monday, February 7, 2011

Bounce, Bounce!

There's a game I like to call Bounce's one of those things that only a Baubee could teach me!

It goes a little something like this....

Sunday, February 6, 2011

Eatin' Machine

Dear Fans,
Thanks for worrying so much about me over the last few months. It's nice to know that you guys are keeping up to date on how crazy my life is....but I wanted you to know that I am DOING GREAT! After the great Neocate Experiment, my doctors finally figured out that my belly needed some help with emptying. And that my acid needed to be kept in check a little more.
And then my mom might've gotten kinda bitchy at them and asked not very nicely if I could start eating solids again. Thank goodness my doctors know how to deal with bitchy moms, 'cause they said OK.
And here I am, eating the first solid food I had in a month.....a BANANA! And let me tell you, it was the best fucking banana I've had in my life. Sorry Mom, but it was! Want to know what made it even better?
Baubee and Uncle Scottie were there at the table giving me a "hooray" with each bite! Hey, um banana? Don't come back up or anything ok? You're great and all, but I'm really over seeing everything come up again. OK? Thanks.
Moving right along, the next day I had some Rice Chex.
And they came EVERYWHERE with me.
I SO remember how to do this....
So far, I've had rice, toast, butternut squash, crackers, rice chex, avocado, blueberries, carrots, chicken, raisins, oatmeal, grapes, and some other stuff too. The other day I sat in my big boy booster seat and bellied right up to the table, no tray or anything! And I ate some chicken just like a toddler boy, holding on to a whole piece and taking bites off. Mommy got a little misty eyed, because in the month that I wasn't eating, I was growing from a little baby boy to a big toddler boy. No more high chair, no more baby bites, shit...I even hold my bottle by myself. Yeah I know, that one was a long time comin'!
My belly is so full now, that I think I'll just kick back and sip my double espresso... Don't go anywhere....I got my eye on you....