Monday, January 31, 2011

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?

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.

Saturday, January 22, 2011


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 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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Friday, January 14, 2011

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 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 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!

Sunday, January 9, 2011

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.

Saturday, January 8, 2011

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 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?