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.

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Comments:

  1. I am so sorry Kim. I have been looking so hard to find that magic wand to make my dad better, so you can bet when I find it, I will pop my two favorites in their carseats and will go 100mph to get the wand to you. Then we will take Max out for a milkshake. I hope they figure things out quickly. He is so lucky to have you as his mom. He truly is. Hugs to you and Max, Kerry

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