Cute Break

I know that things have been a little "heavy" around here lately, so thanks for bearing with us as we vent :) Just so you remember that there is also lots of laughter around here, we thought we'd share a "Cute Break".

I was doing dishes the other day, and looked over to find Max learning something new....

No, not how to stir with a wooden spoon, how to take his shirt off....

Well, sort of....

Ummm...could somebody help me out here please???

Dairy, Eggs, Tomato

Again, going back in time to earlier this week, when we met with the GI doctor and recieved a HUGE diagnosis:

Dairy. Eggs. Tomato.

Dairy. Eggs. Tomato. We found out today that Max is allergic to dairy, eggs, and tomato.


Max has projectile vomited HUNDREDS of times. Since he was days old. He had trouble nursing, trouble with formula, lots of spitting up, and lots of vomiting. And his pediatrician took one look at his smiley sweet face and reassured us "He'll be fine. I mean, he's not a 'failure-to-thrive' baby." And when we begged her to help us figure out why he throws up every time he cries, and sometimes for no apparent reason at all, why he doesn't sleep, why he has eczema, why his eyes were swollen and red....she suggested "You might want to try some soothing music and maybe a pacifier at night?"


So we had to figure it out on our own. Night after night we held our sweet little boy over the sink as his tears mixed with the food from hours before as he threw it up. Not even digested. And he choked and gagged and begged us with his eyes to FIX IT. Day after day, as he would wake up screaming from a nap that was about an hour too short, Sean would say to me "This is NOT normal", and I would second guess myself because of course, I'm a first-time mom and maybe I just didn't know how to get my kid to sleep/eat/digest food???!! And for the most part, Max has been a happy, charming, healthy little boy. Who is developing ahead of schedule, interacting wonderfully with the world around him, and shining his bright little personality on anyone who looks at him for even a split second.


Of course, I figured that I must just be a terrible mom then. I drive my kid around to get him to go to sleep. I don't let him cry for longer than 60 seconds because he'll vomit. I rarely leave him with a sitter because they wouldn't possibly know how to soothe him, feed him, or put him to sleep. The voices that chastised us were SO loud. If only you had let him cry it out. If only you had left him with a sitter sooner. If only you had nursed him for longer. If only you had given him a chiropractic adjustment and burned sage by his crib and tried fish oil supplements and then co-slept and maybe tried a sippy cup and you know you should really play some soothing music at bedtime. Then, the whispers of the "tsk, tsk" mommies who didn't really know us but would overhear us talking in playgroup, who were sure that this was such a nightmare for us because of something WE did, some catastrophic failure that would have been alleviated if we had only followed Dr. Spock/Weissbluth/blah blah blah because of course if you can just blame us then it could never possibly happen to YOU. Like the "Sleep Expert" who taught a class that I actually paid money to go to, who said "Look at him, he's EXHAUSTED. You have to learn to let him cry." I cried big fat tears in the back of that swanky baby clothes store where she had her "professional" seminar.


Finally, after a Candyland cast of characters that stretched a mile long, we finally have an answer. 2 Pediatricians, an opthamologist, a sensory specialist, two feeding specialists, an allergist (who missed it)and 2 GI doctors later (the first one missed it), we have an answer.


Last week the GI doctor at Stanford, who was the first one to take us seriously, found some major swelling of the lymph nodes in Max's belly (the Duodenal Bulb). Dr. C, whose response to our initial visit was to ask "So what's been done about all of this up until now?", and then we had to say "Um, nothing. Because our pediatrician told us that Max's throwing up was just "a laundry issue" since he was gaining weight." Dr. C, whose eyes grew big and concerned when we described Max's symptoms, suggested that we put him under anesthesia and put a breathing tube in while he did an Upper Endoscopy. And extensive lab work. And allergy testing. And biopsies of Max's insides. He was that concerned. And he kept repeating to us "You're right. This is NOT normal".


And when all of my "Mommy instincts" were screaming that SOMETHING IS WRONG with this beautiful baby, and all of our lives have been turned upside down for 17 months by not knowing how to help Max feel better, I find that while I am SO relieved to have an answer I am also SO angry that it has taken this long.


I'm angry that we let Max down. I'm angry that there is no way for parents to know what direction to go in unless they have skilled medical professionals helping them, and that no one we've encountered until now has been skilled. I'm sad that he will have to re-learn how to fall asleep, stay asleep, and how to eat, because it's been such a struggle up to now.


We will all have to re-learn how to eat. Dairy and eggs are in EVERYTHING. Dr. C had choreographed the sharing of these results like it was a death sentence. He spent long minutes explaining that the biopsy results were normal. Max was a little bit anemic, but no big deal. And then he said "Drum Roll, please" (no kidding), and as he was showing me the list that said Dairy, Eggs, Tomato, the nutritionist made a grand entrance and he started soothing me by telling me that she (along with a pediatric allergist) would be walking us through what life would be like.


Thank god that Scott was there to watch Max while I tried to soak everything in. I opened up the food diary that I had been keeping for Max, and didn't know whether to laugh or cry as I shared it with the nutritionist. Cheese, cream cheese, yogurt, scrambled eggs with cheese, egg noodles with tomato sauce, quiche with cheese...and of course, 24 ounces of dairy based formula EVERY SINGLE DAY.


Dairy, eggs, tomato. Now we know. Thank god we know.


Max, I am SO SO sorry that we didn't know sooner. I am SO sorry that you had to be hurting for this long. We will do everything in our power to help heal your belly. We will learn a new way to eat. We will take care of you, and make sure that you can still enjoy the deliciousness of life. We will search for every bit of information that we can so that all of this makes sense, and we will be your chefs, your soldiers, and your protectors....helping you to grow and blossom, eggs, dairy, and tomatoes be damned.

Belly Business

In the next few days I'm going to update everyone on what's been happening with Max's belly, and our adventures in trying to figure out what has been causing him so much pain. As you'll see, we're going back in time a little bit, starting with something I wrote the day after his procedure at Stanford:

Dear Max,

As I write this, I am waiting to hear your little cry as you wake up from your mini-nap. Since your surgery yesterday your voice has been scratchy and hoarse when you cry. Like your normal sounds, but with the volume turned down low and the needle doing a little dance across your record.

I still don't have enough words to describe the day we had yesterday. But this morning when you snuggled into my lap at music class, and the teacher said "Max, I'm SO glad you're here and that you're feeling better!", I knew that I needed to write what the tears couldn't say.

I remember you in your little gown, so warm and soft in my arms as we carried you through the hospital for your surgery. Your yellow hospital pants were way too big, and they kept unrolling around your ankles, and finally Daddy just took them off of you so that you wouldn't trip. Because you kept walking/running/climbing all around the pre-op area. Because that's who you are, my active curious boy. You had two ID bracelets on your ankles, and Mommy and Daddy each wore one on our wrists. I told you that it meant we all belonged to each other. We do. And I told you that it was just like when you were born, and you and Mommy and Daddy each had a bracelet that said we were a family. "Same, Same" I said. Just like we used to say to Aunt Katie when she was small. It reminded me again and again that we were in this together. Our little family curled around our boy, holding him up and bringing him in.

Yesterday before they started your IV they gave you some medicine to help you feel calm. Of course, with your energy it only made you go in slow motion, and we had to smile as we watched you continue to try to climb off the bed and walk around. You still waved to all of the nurses and said "Hi!". And they were so sweet and let you sit on their laps and play with their phones and computers! Then we walked you to where they were going to do your surgery, and we laid you down on the great big bed with George. Daddy had his hands on your head and face stroking you softly (and letting you play with his hat!) while Mommy was by your side holding your hand and touching your face. They finally got your IV in your little foot (sorry, you clearly have Mommy's bad veins!), and then they gave you the oxygen mask to play with. I am SO glad that they let us stay with you while you fell asleep. I didn't want to leave your side, and Daddy said later that it was the hardest part of the whole day.

I cried in Daddy's arms when we got to the waiting room. I just kept looking at the door every time it opened and closed, praying that anyone who walked through would have good news. Waiting and wondering, hoping that you were ok. You are a part of my heart. It hurts deep down in the core of me when I am away from you. When I have to imagine your big full lips and their "fishy pout", or the way that you wiggle into my side when you're sleeping.

And finally, the door opened and the doctor came in. He sat down with us and showed us some pictures of your belly, and explained that you had some bumps in there that were making you feel bad.

My heart felt tight, and relieved, all at the same time. Of course I don't want you to be sick. But you have been hurting for so many months without any answers from the doctors. I know you feel terrible when you throw up. The helpless, scared look that you get when you can't stop heaving. I don't want you to feel that way anymore. I don't want you to wake up from a tiny nap, exhausted and upset, struggling to go back to sleep. I want you to enjoy food, and to be able to eat with us and not feel bad or frustrated. I want you to be able to get sad sometimes, and to not start choking every time you feel like you need to cry. So for these reasons, I was relieved that we were finally starting to get some answers for you.

As we were talking to the doctor, the nurses wheeled you out of the OR and headed out the door to recovery. Daddy bolted towards you and got a quick peek, and I saw you from a bit further away, curled up on your side under lots of blankets, sound asleep. I guess we weren't supposed to go with you yet. So they sent us to another waiting area where we were to wait until they said we could come in. That didn't go so well :) Daddy used his words when Mommy couldn't find any. He marched right over to the person in charge and let them know that we HAD to be there when you woke up. I love your Daddy. Especially because he shows us how much he loves us with actions, every day. At one point I decided that we were going to stand in front of the nurse's desk until she let us go see you. He heh. I think we were making her uncomfortable, because she did call your recovery nurse again to ask if it was time yet. I realized that I was standing there rocking. Side to side. Just like I do when I'm holding you.

When we finally were walked back to the recovery area, I heard your hoarse little cough/cry before we even came around the corner. "That's Max" I said to Daddy. We know all of your sounds, every breath, every little noise. The nurses were helping you to sit up, and we swooped in immediately and grabbed you. They let us hold you, with all of your little wires and things sticking out. You immediately grabbed on to me and knew who I was, but you were PISSED. We could tell you felt like crap, our poor baby. They let me give you a little bottle of sugar water, and you got quiet in my arms as I cradled you and fed you from the tiny bottle. Just like in the hospital when you were born. Except this time your legs dangled over my arm. Your eyes closed and you nestled in, but as soon as the bottle was empty you were screaming again. Daddy and I alternated holding you, singing to you, trying to make you laugh. I whispered your favorite songs in your ear, and repeated the words over and over that I like to sing to you in our quiet times ("I love you I love you, I love you I do"). Finally, you took a bottle of milk and about half way through, something changed behind your eyes. You were back. The fog had lifted and you were starting to feel better. You looked at me like it was for the first time, like you had just realized that you were Max and I was Mommy. And then Daddy gave you a big hug, and a few minutes later you looked over his shoulder and started greeting the nurses with your charming smile. "Hi!" you said, and they laughed because you were clearly feeling better!

Max, I am so blessed to be your Mommy. Of course, there is something special about all babies, but there is something extraordinary about you. You were so brave yesterday, and so loving and sweet to everyone who was there to help you. Your bright smile and curious eyes charmed all of the doctors and nurses, and it made me so proud that you are so aware and so full of light. I am so sorry that your belly has hurt you for so long. I am so sorry that we went to doctors who didn't understand. I am so sorry that they had to poke you and mess with you yesterday, and that when you woke up you were scared. I am so sorry baby.

But I promise you that we will help you get better. We will not stop figuring out the answers until you feel great again. Until you can sleep peacefully and eat normally. We will be your warriors, your bodyguards, your army, forever. Thanks for being such a trooper, and for letting your smile shine through all of the stuff you've had to endure.

We love you more than the moon and the stars, and we are so thankful for the amazing team that took care of you yesterday. You are surrounded by love and strength from so many family and friends too, and we appreciate them every step of the way. Their kind words, emails, texts, dinners, and phone calls have held us up and kept us moving forward.

We love you, and we will fight for you,

Mommy (and Daddy too!)

Pumpkins, Patches, and Plenty of Fun!

OK, so we're going back in time a little bit....

Our tiny town does Halloween BIG, so technically we've been preparing all month for the festivities! Apparently, we're the Pumpkin Capital of the World. Or something like that....

So of course we had to visit one of the hundreds of pumpkin patches in a 3 mile radius of our house....

Max took a good look at all of the pumpkins from the safety of this window spot...

And then he scouted out where he wanted us to go....

We didn't realize that it was going to be such a beautiful day, so we dressed him in his winter farmer gear....he looked adorable, but he was pretty toasty....

We started with some pumpkins that were Max-size....

But those weren't as much fun as the big ones...

Of course, what's a trip to the pumpkin patch without a few family portraits for posterity?

There were sooo many pumpkins to choose from!

Of course, we couldn't just stop at ONE patch! The next week Max and Mommy went with our friends Brady and Will, and THEIR mommies, to another pumpkin patch! This one had huge corn mazes and giant bins of baby pumpkins, or as Max calls them "Pow"!

Not sure why this picture is crooked, but you get the "Children of the Corn" idea!

First Haircut!

I LOVE Max's curls. I love how they curl up around his ears. I love how the back is long enough to fall in soft, sweet little rings around his neck. I love doing "the swoop" with his bangs, and the way that his hair fuzzes up in wet waves when he takes a bath.

But my little baby and his sweet baby curls were in need of a little trim. And I swear, I wouldn't have done it if it weren't for the fact that Max's bangs grow STRAIGHT down, and right into his eyes. Of course, if he was a girl, I would've put in a sparkly clippy and that would have been that. But when his bangs finally touched the bridge of his nose, and he was furiously swiping at them every five minutes to keep them out of his face, I knew it was time.....

Here's a little bedhead jammies shot from "before"..... Now don't get me wrong, all I wanted was a TINY little bang trim. But the horrible witch that cut his hair, who clearly doesn't have children and doesn't know how PAINFUL this was for a Mommy to watch, rudely said "Well if we only trim the front, then he'll have a mullet". Bitch.

So what's a Mommy to do?? Let her adorable little boy sport a redneck hairdo and be the laughing stock of playgroup? Sean gently agreed with her, so of course I had to let her cut it.

Max wasn't quite sure this was a good idea. When she put the drape on him, he started screaming "I'll wear the sparkly clippy!! Just don't touch my 'do!" Hah hah....

He wasn't too fond of the spray either.....

And the slick, mid-cut look kinda made him feel like a Jersey Boy.....

When he realized that all of his beautiful curls were hitting the floor, he decided to give the lady a piece of his mind....and then some!

But I have to say, we all warmed up to the idea when we saw his handsome little grin and he looked out at us from bang-free eyes.

And with one little cut (well, a few big cuts) he was all dashing and gorgeous like a real BIG boy, just like his Daddy.

Mommy kept some of his golden baby locks, and we got a certificate for his baby book. I had to fight the urge to pick up every curly lock from the floor before we left.....trying to hold on to those baby moments for as long as I can. Knowing that each little curl was a small piece of the once 6 pound boy that I rocked in my arms, running my hand over the wisps of hair on his tiny bald head. He turned into a little more of a toddler today, and we said goodbye to one more thing that made him my "baby". He's my "boy" now, though he'll always be my baby....especially when I let all the curls grow back in!

Happy Halloween!

In case anyone was wondering, you haven't heard from me in a while because I just got back from some space exploration!

I've been contracting with NASA to build a playground on the moon.....

Now that I'm back, I have some very important business to attend to....like my very first official Trick Or Treating adventure!

And who knew....that I'd LOVE it??!!! We went to so many houses! I learned pretty quickly that you take the candy and put it in your basket, and then when Mommy and Daddy told me to say thank you I did my "whole body nod" and gave everyone a big smile. By the end of the night I was saying "Mo house!" and "Treat!" We had so much fun!

My Mommy dressed up like......well, like a Mommy.....

But my Daddy was Indiana Jones!!

I got to stay up really late that night, because we had more than 100 kids come to our door! The next morning I had to check out my loot.....

Of course, I can't eat any of it, but it was fun to play "Trick or Treat" and move it all from the bucket to my basket!

Happy Halloween everyone!!!!

Status Update

Just in case you're wondering why you haven't heard from my Mommy in a very long time, I wanted to fill you in.

I don't sleep. No really. I don't. Not at all. I can SAY "nigh-nigh". But it doesn't mean I'm gonna DO it. We drink a lot of Venti Triple Soy Vanilla Lattes around here.... OK....maybe just my Mommy and Daddy (this cup is empty).....

But they're drinking so much coffee, that they've had to send me to work....

Another Frappucino Mom??? Really??!
Some of us look a little sleepy during the day, so we like to wear shades. It's a little Tragic Chic. OK, maybe just my Mommy and Daddy for that one too :) But I still look pretty cool.

But seriously.....this is serious business. And yes, we laugh and play during the day, and I'm a really happy guy. But at night, when I lay down, I feel pretty crummy.

Today we went to see a really nice doctor who helps little kids like me. He talked to my Mommy and Daddy for a looong time about what's been going on with me. I throw up a lot. A LOT. And I've been waking up every 30 minutes at night, screaming. And a bunch of other things, that we really don't need to go into right now. The point is that this doctor was really nice, and really smart, and he works at a hospital that does great things with little kids. So in a few weeks I'm going to have some tests done that will help everyone figure out how to make my belly feel better.

Until then, I'm just chillin' in my beach pad, waiting for some answers. I'm pretty smiley for a kid who doesn't sleep, huh?

That's part of my charm!