I’ve written, erased, re-written and back-spaced this post so many times. I’m so torn on what I want to say. Some times I sit down to write WE ARE LOSING OUR FUCKING MINDS. THIS IS SO HARD. I AM HEARTBROKEN FOR OUR LITTLE BOY, BECAUSE HE WON’T EAT, WON’T SLEEP. WE HAVE NO IDEA WHAT ELSE TO DO. OUR LIVES ARE CONSUMED BY DOCTOR’S APPOINTMENTS AND BRAINSTORMING HOW TO HELP HIM FEEL BETTER. NOTHING IS WORKING. HE HAS THROWN UP IN THE GUEST ROOM, THE LIVING ROOM, EVERY TOILET, AND TONIGHT IN MY HAND. WE HAVE BLANKETS AND SHEETS ROTTING IN THE LAUNDRY ROOM BECAUSE WE CAN’T KEEP UP WITH ALL OF THE LAUNDRY. EVERY TIME WE REJOICE THAT HE FINALLY ATE A MEAL, HE THROWS IT ALL UP. THIS IS WHY I DON’T EMAIL YOU BACK. THIS IS WHY YOU NEVER HEAR FROM US. THIS IS WHY WE MISSED YOUR CHRISTMAS PARTY AND I CRIED THE WHOLE NIGHT BECAUSE YOU ARE SUCH DEAR FRIENDS AND I REALLY WANTED TO BE THERE. TO BE IN THE LAND OF THE LIVING. TO DO NORMAL THINGS BECAUSE THAT’S WHAT MAX DESERVES. HE DOESN’T DESERVE SLEEP-DEPRIVED PARENTS WHO YELL AT EACH OTHER BECAUSE THEY’RE EXHAUSTED. I SPEND EVERY FREE MINUTE READING ABOUT REFLUX, ALLERGIES, FOOD REFUSAL. I TALK TO HIS TEAM OF DOCTORS NUMEROUS TIMES A WEEK. WE LIVE, SLEEP, EAT AND BREATHE TRYING TO FIGURE OUT HOW TO MAKE HIM FEEL BETTER.
WOW. And then I delete all of that and write that even with all of those things, we are blessed with the most phenomenal little human being on this planet. He makes these great little faces that say more than any words could. He is so dramatic, and animated, and we literally laugh out loud at how funny he is. I love every minute with him. For a kid who doesn’t eat and doesn’t sleep, he’s so good natured. Even mid-tantrum in Target, he stopped, gathered himself, smiled widely and said “Hi!” to the nice lady that was walking by. He’s a charmer this guy. And he’s everything to me. He is my whole world. He is the best part of every day. I love singing him the “broccoli-woccoli” song when I’m trying to get him to eat. I love how messy his curls are when he wakes up from a nap. I love how he tucks his little head into my neck when he’s sleeping next to me. I love how he calls out everything that he sees when we’re driving in the car. I love that he is mine. Health issues and all, I wouldn’t want any other baby boy in my life.
This is our dichotomy. Frustrated and helpless from not being able to figure out what is wrong. But filled with so much joy and love because we have this amazing little person blossoming more and more every day.
Now back to our regularly scheduled programming:
Omeprazole twice a day for reflux. Gastrocrom 4 times a day to “inhibit mast cell production and decrease the allergic inflammatory response”. Never mind that I thought the doctor said MASS cell production, and that Gastrocrom sounds like the coolest new restaurant in San Francisco. Dr B says that she’s hoping the Gastrocrom will be our “miracle drug”.
Yeah, me too.
Dr. C, our GI doc, is now teaming with Dr. B to try to figure our little Max out. As he put it, “two heads are better than, well, nothing I guess”.
We see an allergist, a nutritionist, two gastroenterologists, an occupational therapist/feeding specialist, and as of this morning, we are begging for a referral to the Sleep Disorders Clinic.
We are desperate.
How is it possible to have such an amazingly bright, happy little boy during the day, and yet he feels so miserable at night? How is it possible for Max to have so much energy, and yet eat so little solid food that his weight is now dropping? How is it possible that we have cut out a billion food groups and he is still throwing up? As Dr. C said, “Wow, if we keep getting positive allergy tests, than at some point he’ll only be eating air”.
There must be an answer somewhere. Every time we drive around in the pouring rain at three in the morning, with that adorable little face peeking out from underneath all of the blankets in his carseat, we ask ourselves a million questions about what we can do to help him.
But for now, we remain in crisis mode. We are cancelling plans for holiday parties, dropping out of play dates, doing anything we can to protect and preserve every spare minute for successful meals and substantial naps. Now don’t get me wrong, we’re still having fun. Just sticking close to home while we get everything sorted out.
It’s easier to get Max to eat when he has the space to do this….. Thank god for coconut milk yogurt….and it’s blueberry! The best part about this? He looked me straight in the eye, took a big spoonful of yogurt, and placed it VERY CAREFULLY in the center of his forehead. I was laughing so hard that it only encouraged him, and of course it only got worse from there!
As you can see, many meals are punctuated with what I call “the fishy face”….