Tuesday, December 28, 2010
Friday, December 24, 2010
Last Christmas I made friends with Rudolph....
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!
Monday, December 20, 2010
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"....
Saturday, December 18, 2010
Don't worry buddy, I won't let anyone see this picture at your wedding. I promise.
Friday, December 17, 2010
This year, I celebrated Chanukah in style. Of course, I'm big enough now to really GET what Chanukah means. It means that Jason and Rick come over and we make latkes! OK, not really. It means that Rick makes jelly donuts! And I get presents!
Thursday, December 2, 2010
This family. This amazing little boy, who is so full of light and love. Don't think for a minute that we're not enjoying every single second of him. Every tiny moment when he looks at me with a silly grin, every breath that he puffs on to my shoulder when I carry him upstairs to bed. Max is so dynamic, so full of energy and drama. With facial expressions that are huge and hysterical. And an insight that stuns me and makes me laugh out loud, all at the same time.
A few of my favorite things from the last few days?
Max likes to wake me up in the morning (because he's sleeping next to me) by tapping my chest and putting his face THISCLOSE to mine, and then his little voice says "Hi!". And when I open my eyes, he's right there breathing his little baby breath on me, grinning from ear to ear.
I've been counting down to any transition during the day by telling him "Two minutes" and holding up two fingers, and then "One minute". Of course he has no concept of two being more than one at this point, but I figured it would be a good habit to start. Except now when I say "Max, in one minute we're going to put our jammies on" he says "TWO!!"
I wiggled my nose at him today, and he cracked up laughing. And then put his fingers on his nose and wiggled it. And then when that didn't work, he just shook his head back and forth to make it wiggle.
Amazing, my boy.
So don't ever think for even a second that I am not absolutely in heaven about being this gorgeous, brilliant child's mother. And a wife to this guy...who's pretty wonderful too....
Who cares if you can eat dairy when you are surrounded by such love??
Thankful for the blessings of family. For this woman in particular, whose mothering built the house of love that keeps my own little family warm and safe. I am so thankful for her, my Momma, and for her laughter, good sense, and friendship. She anchors us, and I am so grateful for every visit we share.
And for this guy, Max's Uncle Scottie. For the days that I get to watch him love Max so completely, so fearlessly. His laughter mixes with Max's laughter, and I know that my little boy will grow up completely idolizing him.
It occurred to me a few weeks ago that when Max had his allergy testing done, they tested for 10 things....and 3 were positive. So who's to say that had they tested for 10 more, maybe they would find something else that he was allergic to? So they did. And he was.
It just felt like the tip of the iceberg.
Of course Max's sleep had gotten so much better. Tremendously better. Then suddenly, he was up from midnight to 4 am. And we had to drive him around not once, but three times a night.
Of course Max's throwing up was better. Except for the last two weeks, when he threw up 3 times.
So when we met with the allergist and they recommended doing another skin test to re-check his allergy levels, I was torn between not wanting him to have to go through the pain of the procedure, and wanting to get to the bottom of what was bothering him.
20 little skin pricks later, and Max is running up and down the hallways of the doctor's office, with no shirt on, with 20 little dots on his back marking a constellation of concern. Sure enough, there were 3 fiery red welts that showed up.....noting an allergic reaction to beef, cashews and pistachios (tree nuts in general).
Then, at our follow-up appointment with the GI doctor (after a frantic call to the on-call doc over the Thanksgiving holiday), the powers that be decided that the most plausible new piece to our Max puzzle must be that he is also allergic to Soy.
Are you fucking kidding me?
Our latest working hypothesis is this: We took Max off of dairy, eggs, tomato. His little body said "Yay!!! Thank god someone finally figured this out! I feel soooo much better!". And then we started giving him soy. Lots of soy, to make up for the fact that he couldn't have dairy. Soy milk, soy yogurt, soy cheese, soy cream cheese. So Max's little body said "Shiiiiit guys! Now I feel like crap again! No sleeping for me!" And then he said "OK geniuses, while you're at it, not only am I allergic to soy, but to beef, cashew and pistachio". And he finished it off with a "TA!!!"....that's Max's version of "Ta-Da!" that he likes to say. OK, he didn't really say all of those things (except for "TA!"), but if he could've, he would've.
And that's where we're at. Apparently 50% of kids with a serious dairy allergy also have a serious soy allergy. You think dairy is in everything? SOY is in everything. Take a look at the wrapper of the cookie/cracker/lunchmeat you're eating right now. Does it say Soy Lecithin? This makes eating Vegan look like a cakewalk. We're so hardcore here now, those Vegans can KISS IT. Day 2 of the dawning of the soy free world. No change yet, but we'll see how it goes.
Wednesday, December 1, 2010
After a solid five or six days of positive changes for Max, we are now back to the drawing board.
The last two weeks have been a nightmare of sleep issues. How is it possible that Max could have been doing so well once we removed all of the allergens from his diet, and then regressed to being even worse than he was months ago??
In a nutshell? There's more that he's allergic to.
Beef. Cashews. Pistachios. And probably soy.
Stay tuned for another post about how we figured that out, what we've been doing in the meantime, and where we're going to go from here.....
Thursday, November 18, 2010
Wednesday, November 17, 2010
Monday, November 15, 2010
Sunday, November 14, 2010
So of course we had to do our part to encourage his musical talent. What mother in her right mind would buy her kid a drum? Ummmm.....me.
He started out tapping very gently.
And took his time figuring out how it worked....
Saturday, November 13, 2010
Daddy, is this where you would put my carseat if we brought this baby home?
Now could someone bring me a cup of hot chocolate and a s'more please? (Oh yes, they have a hot chocolate bar and s'mores here!)