What Matters Most

We stand at a crossroads, between doctors appointments and procedures. Food and formula. Hypotheses and failed experiments. But tonight, I'm sick of talking about it all.

What matters most?

This....

I love that my little man is an explorer. And that we live in a place that is begging to be explored. Each stick and rock, calling out to be picked up....

This face? It's the best thing about my day.

And who gives a damn about a doctor's hypothesis when there are doggies to pet....

and to chase....

There are lazy Sundays that scream "Family Day", and we are soaking in every minute....

That's what matters most.

Tidbits

Testing out the blog app on my phone...if this post looks wonky, thats why!

Tidbits....Random But Relevant:
*Max has very dramatic conversations with himself. "Cah? (Coffee) No! Noooo! Hot!" And "Suuu! (Super Why tv show) Yeah!!". He asks himself questions, and then answers himself...with great enthusiasm!

*Our nightly car rides to get him to go to sleep are starting to deteriorate. Max has taken to screaming "Out! Home!" And more recently "Heeelllllpppp!" It would be funny if it wasnt so sad that he cant go to sleep any other way.

*He's learning to count. And he has favorite numbers...like two, eight and nine. So those numbers come after everything. And every letter is K. And every color is "bluuuuuue".

*Max knows what he's not supposed to do, so he'll take your hand and try to make YOU do it so he doesnt get in trouble. He'll say "Mama! Dooooooo!" And try to push my hand towards stealing another kids toy, pushing the temperature buttons on the wine fridge, petting a strange dog, touching the stove, and so on. He's pretty clever.

*He likes to hide under pillows and then call out "Maaaahh" (Max) so that you'll call his name and look for him. He's also a big fan of taking things and running away with them so that he can squirrel them away in a place where no one else can get them. Like hiding a contraband pen under the dining table, or taking my pillow and hiding it in the small crawl space behind his crib.

We're always on our toes over here, but what a beautiful dance it is!

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DGE, Easy as 1-2-3

Somewhere around the third hour of our second doctor's appointment on Monday, Max decided he was DONE with all of these grown-ups talking about him. So he sat on the bottom step of the exam table, and started spitting on the floor. "Pffffffffffffffffffffttttt", as loud as he could, motor-boat style. Over and over and over. My mom went to stop him, but then at the exact moment she realized that he was spitting all over the floor in front of not one, but two doctors, she started to snicker. The kind of snicker where I knew that in about ten seconds she was going to start the laugh/cry that we're famous for. That was probably my favorite moment.

Or maybe it was when the old-school "Attending" doctor came in to help the young new doctor. And Doctor Attending with the thick accent grabbed Max, threw him up in the air, tickled him....and then set him down so hard that Max fell on his face. Twice.

Have I mentioned how grateful I was to have my mom there with me? Of course it's helpful to have an extra set of hands, especially when I had resorted to walking Max around the allergist's office (after waiting for TWO hours) and telling him loudly "Wow honey, you are being SO patient. We've been here for a VERY long time, and it's so hard to WAIT THIS LONG when you're so little, isn't it?" But it's also nice to have some emotional support. Because of course we never know what curveballs they're going to throw at us, somewhere between hour 2 and hour 3.

So here's the latest scoop:

They think that Max has what's called Delayed Gastric Emptying, combined with severe reflux. Could he still have allergies? Of course. But since he's only on formula and still not feeling well, the allergies probably aren't what's causing his symptoms. The good news? Once we get all of this straightened out, he may very well be able to eat lots of different things. Maybe even milkshakes....in which case we would drive immediately to Kerry's house and have a milkshake party. Delayed Gastric Emptying (DGE) means that his tummy doesn't pass food through as quickly as it should. So when he barfed up whole pieces of scrambled egg and we thought "Ah-hah! It's because he's allergic to scrambled egg!" it really was because ALL food just sits there and makes him sick. And causes acid to come up. And makes him vomit. Could this be the new holy grail of diagnoses? Maybe. I'll do my dance of joy once he actually starts feeling better.

So now Max is on a low dose of an antibiotic that's supposed to help food move through his body faster. Want to guess what that means? Yeah.....pretty much. We may also up his reflux med, and the allergist recommended adding a low dose antihistamine to help at night. He said it was to soothe Max's itchy eczema, but added "It may have a small sedating effect. I figured that might be helpful in Max's case?". And then I kissed him. OK, I really didn't....but he would've deserved it.

So far no change with the medicine, but it's only been a few days. He did take a two hour nap the other day, and then a THREE hour nap yesterday, so we'll see if his nights improve too. Our fingers are crossed.

Last night he woke up at 9:30, and then again at 3:30. The moon was lighting up the clouds when I finally put him in the car at 5 am (he wouldn't go back to sleep at home). Oddly enough, I felt peaceful. We don't know where this road is going, but at least we're trying something new. So for now, we wait. And we drive.

Sean gets home tonight from a week-long business trip, and we're ready to have him here to complete our circle. And I'm sooo grateful to my mom for supporting me this week, in all of the ways that she's so good at....like singing songs with Max....
And teaching him how to do complicated puzzles that are meant for kids older than he is....but he figures them out anyway!
And just to balance out his brilliance at things like complicated puzzles, they also play the "P. U!Smell Max's feet" game, as you can see here....

And they also have quiet moments...

And we keep moving forward, one cuddle at a time....

My 19 month old does all of the hand motions for "Itsy Bitsy Spider", and chimes in with some of the words. So who cares if he doesn't eat or sleep?? Take that, toddlers everywhere!

Down The Rabbit Hole

I cry a lot. Those of you who know me well know that I tend to feel emotions in extremes. Fortunately, even with all of the tears that I've shed about Max's health, he still gives me lots of opportunities to cry tears of laughter.

Like the other day, when my mom and I were watching him in the play room and he was quietly gazing out the window, drinking water from his sippee cup. For a little too long. After a few minutes he turned around to look at me, with a very silly smirk on his face. And he opened his mouth and let all of the water dribble down his chin and onto his shirt. He had been standing there for who knows how long, taking a drink, spitting it out. Taking another drink, spitting it out. Just to see what would happen. My mom and I were laughing so hard that I couldn't tell him not to do it, which meant that we just let him continue until he was soaked, the floor was soaked, and the water was gone. Mom-Mom and Pop-Pop came in to see what was so funny, and pretty soon Max had a great audience going....just how he likes it.

One morning I was calling for Sean and Max chimed in "Sean!". So I switched to "Hey Babe!" and when Sean walked in the room Max looked at him and said "Hey Babe!"

The happy, laughing tears get mixed with the sad, worried tears sometimes.

Max has been "Neocate Only" for almost a full week now. We are feeding him around the clock. Our Nutritionist, the lovely B, said that she would be happy if he was taking 35 ounces a day. Max is at 45. Overachiever. Yet improvement has been painfully slow, and not significant enough that I can put my full yee-haw support behind this idea of cutting out solids completely. But we're doing it. When we first started this journey I thought "Food allergies? No problem....we'll cut out those foods and then be on our way." But he never got better. And we kept cutting out foods. I know that the drastic decision to take him off of solids wasn't reached easily by our doctors. It's sinking in that they wouldn't be doing this if they didn't think he was really in a bad spot. That's hard to come to terms with. It feels like we're falling down the rabbit hole. Because all of a sudden we really don't know how to heal him. And the further we fall, the more serious it all becomes.

We head back to the doctor on Monday for another round of appointments with the allergist/GI team. Our latest hypothesis is that maybe his reflux isn't completely controlled. Maybe the allergies aren't as bad as we think, but his sleep just sucks because the acid is still coming up. Which would be worse on formula-only. Which would explain why he chokes/coughs/gags/gulps every time he wakes up and cries. Really though.....we have no idea at this point. Who knows how deep this rabbit hole goes, but the ride doesn't seem to be ending.

Mom-Mom and Pop-Pop!

Guess who came to visit me all the way from New Jersey??? I got to show my Mom-Mom and Pop-Pop all around my new neighborhood. One day we went up to the harbor and hung out with this guy, who had just caught a huge fish. Hey Pop-Pop....you look really "California" in those cool shades!

Can you believe that they drove all the way here in this little car?? Pop-Pop was tired of pedaling by the time they got here, so I had to push him....

We had a little conversation about which way to go....

Pop-Pop, I told you already, there's no way all of your luggage is going to fit in this trunk!!

Pop-Pop and I came up with our own little game....we called it "Boom!".....



My grandparents took really good care of me. My mom and dad have been a little worn out lately, so it was really nice for them to have some help. Pop-Pop and Mom-Mom spent lots of time playing with me, helping to get our house back in order, and cooking some really great meals for my folks. It was so nice to have a whole week to spend with them!

Do you think I wore them out?

What It's Like....

It's hard to reconcile having a child who is so sick, when on his great days he looks like this.... But things continue to go downhill in the land of the belly blues, and we are grasping at straws for answers. What we know at this point is that Max has something called Food Protein Induced Enteropathy, and maybe a little of what is called FPIES (Food Protein Induced Enterocolitis). What that means is that his belly is fighting off food proteins like they are the enemy. His belly can't absorb them. And when the level of "toxins" gets too high, he vomits. And wakes up ten times a night screaming.

At this point, we've eliminated his known food allergens (dairy, egg, tomato, beef, tree nuts). We have also eliminated soy milk and soy products, because we saw that his symptoms got worse from soy. We have now eliminated all protein, as well as rice and rice products, because kids with these disorders seem to react the most to turkey, chicken, rice, all grains, green beans (legumes in general) and well, everything really.

So what's left for Max to eat. Ummm, nothing.

I have a huge amount of respect for our team at Stanford Children's Hospital. We now have a small army of doctors working to put the pieces of Max's puzzle together. The two GI doctors/allergist/nutritionist/and feeding therapist are all making themselves available 24/7 to help us figure this out. So when they told me yesterday that they feel strongly that he needs to be on his special Neocate formula ONLY for at least a week, of course my first thought was...

ARE YOU FUCKING KIDDING ME?

How in hell do you explain to a very verbal toddler that he can no longer eat solids?? How do you un-do sessions of feeding therapy/OT? It's taken a YEAR to get this child to accept anything from a spoon! I seriously cried last week when he actually ate three bites of chicken, because I was so overjoyed. I bring snacks everywhere. I offer food constantly. I let him touch/taste/smell all sorts of foods because that's what you do to help a child who won't eat. And then we had to start removing foods that he was allergic to. And I panicked. But I figured it out. We could replace his beloved cheese with rice cheese. He could have turkey meatballs instead of beef ones. When a mom at playgroup started waving crackers around for her kid, I could bust out some dairy/egg/soy free ones. We were making it work.

And then Max got worse. I found some wonderful support on an online forum for parents who have kids with food allergies, and they started making some interesting points. "Your son is SICK. Who cares if he knows how to eat with a fork if his belly is so sick that he feels terrible all the time?" In other words, getting three bites of chicken in his mouth is not a "win" if he's barfing five times in one day because he can't handle it. His body is telling us he needs to try Neocate only.

So how do we do this? Well, we've done a modified version of it for the past few days. I'm telling myself that it's to get him used to it, but really, it's to get me used to it. He is getting all of his nutrition from the Neocate formula anyway. Of course, the goal is to bring him back to "baseline". This means that he needs to have about a week of feeling better before we can introduce solids again. And when we do, it's going to be one single-ingredient food at a time, for a 5-7 day trial each. Once we know that food is "safe" it's considered a "pass", and we move on to the next food. Anything that he starts reacting to is considered a "fail", and we take it off the list for now.

I would love to know what his baseline is. On Christmas Eve he threw up 5 times, and then slept through the night. We're assuming that it was because his belly was empty, but it's also possible that the poor little guy exhausted himself. Two days later he started having great naps because we were only doing formula in the morning, and skipping solids for breakfast. Then last night was terrible again.

The thing about FPIES is that reactions are often delayed. In other words, my food log says that he threw up after eating green beans, but it could actually be that the banana from breakfast was bothering him. And kids with FPIES can react to ANYthing. Like all grains. And fruit.

And since our old pediatrician clearly MISSED THIS when we would bring him in and say that he was vomiting/rashy/couldn't sleep/and so on, we are now having to trial foods at 19 months old instead of at 6 months old. Which would have been SO much easier.

The other scary thing about this, is that kids with FPIES sometimes vomit to the point where they become lethargic and dehydrated. Not many of you know this, but there have been two times that I have had to call 911 after Max vomited because he suddenly became lethargic/sleepy/very sick. The first time we were at the park with some friends. Max threw up out of nowhere, was hysterical, and then pretty much collapsed against me. I sat with him for a while in the car, cleaned us up, tried to put him in his car seat so that we could drive to the doctor....no go. He wasn't acting like himself, he was so out of it. I took him back to the blanket where our friends were sitting and he slid down my lap and lay on the blanket with a blank look on his face. This is a child who usually doesn't stop moving. He never falls asleep on his own, much less in the middle of the park when it's not even nap time. I felt like an insane mother, but I was terrified. When his eyes started to roll back in his head for a split second, I called 911.

Kids with severe GI issues often get to the point where they almost pass out from what is happening in their bodies. Thank god we have only seen this happen twice. Thank god Max usually bounces back from vomiting/feeling sick pretty quickly. But as things continue to get worse, we don't know how his reactions will evolve. All we know is that they're not stopping.

It feels like we have crossed the threshold between "Max has food allergies and it's ok because we're dealing with it and he'll be fine" to "Now we have no idea the extent of what is happening in his body, but we know it's more severe than just food allergies. It's a major health issue, and it's going to take some major strategy to treat this."

And yet, our little dynamo still smiles like this....

Best Buds....Then and Now

Tis the Season for sharing some Christmas cheer with my best buddy Jack! We've started a little holiday tradition....check out how small we were LAST Christmas!

It's funny, last Christmas I was so little that I didn't want to sit still for too many pictures....

But THIS Christmas, well.....
Last Christmas I made friends with Rudolph....

Hey reindeer! Remember me???

This Christmas, Jack and I are big enough to REALLY be best buds. This is what best buds do...

I love you too man!

Jack has this cool car that he likes to cruise around in, but he needed me to help him fill it up with gas.....Thanks for letting me go for a ride buddy!

You want me to turn the GPS on how?

Now hang a right up here at the Christmas tree....

As you can see, Jack and I have lots to do when we hang out. Having such great friends is the true meaning of the season! We love you Weiss family!