Oh, what a difference a week makes

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Last weekend was a terribly low, emotionally draining, frustrating, and saddening few days. I was feeling at my wits’ end.

Today was the easiest day we’ve ever had with Maddy. No hyperbole.

What has happened in between?

It has been exactly one week since we cut out gluten from Maddy’s diet. As I mentioned before, this meant that most of what Maddy would eat, and what we’d spent three months working on getting her to eat, was suddenly gone from her diet. For three days all she ate was fruit, granola bars, and goat milk. She was miserably hungry, but refused to eat. She was going to bed signing ‘eat’, and signing ‘more’ while crying, but there was nothing we could give her that she would accept that would fill her little tummy up.

Despite being miserably hungry, her poopy diapers became solid again (she previously had been passing completely undigested food two hours after consuming it, up to eight times a day). This was our first positive sign that cutting out gluten might be helping.

Jump forward several days, and we have a little girl who is trying foods we have never seen her try before. She not only put pork, beef, tuna, and chicken in her mouth, she swallowed them, and went back for more! She also tried tabouleh, peas, carrots, red pepper, and potatoes. This is our second positive sign that she might have had an upset stomach for a long while now.

Every day this week seemed to get a little bit better. She was still crying a lot, but her moments of happiness seemed to be increasing. She started showing independence again, not needing to be attached to us. She started wanting to walk instead of always wanting to be carried. In fact, she walks now more than she crawls, and she’s gotten to that stage other parents have told us about (the I-want-to-walk-everywhere-and-will-throw-a-fit-if-you-pick-me-up stage). A woman approached us today in a coffee shop, asking how old Maddy was, and then commented on how she was such a, “good walker for her age”. Rewind to last weekend when she would barely even bear weight on her legs. Whose kid is this?

Her sleeping hasn’t improved substantially, she’s still a wake-up-at-4:30am kinda gal. But, she is sometimes able to cry herself back to sleep for another hour or so. Let me tell you, that extra hour makes a world of a difference (and I don’t mean for Madeleine, I mean for us!). What has changed substantially is the way Maddy has been waking up. Three times in a row now (knock on wood), she has woken up saying, “Uh oh” while looking through her crib rungs at her soothers on the floor.  Never, in her little life, has she woken up so pleasantly three times in a row. Most of our days start with blood curdling screaming. Most naps end the same way, not to mention that her transition from sleep to awake often takes 45 minutes. Today? Madeleine woke from each nap happy, chatty, and she transitioned seamlessly. How have we interpreted this? It’s a lot more pleasant waking up when you’re not waking up to an upset stomach.

All this being said, Maddy will be having an abdominal ultrasound, as well as an appointment with a pediatric GI specialist to rule out (or possibly diagnose) any issues other than a simple food intolerance. Given the family history, and Maddy’s uncanny Celiac-like symptoms, we’re placing bets on Celiac disease… but we’ll just have to wait to see if we’re right.

The upset stomach/food intolerance/gluten removal is just one part of this story. The other part of the story is that Maddy has SPD. It’s really hard to meet her sensory needs when she’s already miserable from an upset stomach. She won’t let us use our OT techniques to navigate through the day. Combine the two together and it’s a big tangled mess of baby gone wild.

Today Maddy was happy. She did not seem at all like her stomach was bothering her. Her normal protruding, and bloated tummy was flattened. She was happy, and so we were able to do things. She played while I swept the floor (and let me tell you, I think this is only the second, maybe third time she has let me do this). She danced outside to music while she watched Daddy get our bikes prepped for our first ride of the season. She even let us put her helmet on her:

We met up with her Uncle Scotty, tucked her into her new bike trailer, and went for a ride around Hamilton Bay. We weren’t sure with Maddy’s vestibular issues how this would go down. She was either going to love it or hate it. What went down was fascinating. In retrospect, we wish we had video taped a bit of it. While we were biking, Maddy entered a catatonic state for 10 kms. She lowered her head a bit, lifted her arms (the way you raise your arms, parallel to the ground in front of you, when you lose your balance and think you might fall), and didn’t move a muscle. She was completely non-responsive to our voices, her name, and even our touch.

When we stopped moving, we took her out of the trailer and sat her on the ground.

She was still completely unresponsive, but now her body was entirely limp. If you picked up her arm and let go, it would flop back down without any resistance. She sat like this for another ten minutes or so. Eventually she started noticing her environment, she stood up, pointed, and called a goose a puppy.

This reaction to movement was not a shock to us. We have seen it many times in her therapy sessions, but I think the longest we’ve seen is a few minutes. As one of my facebook friends succinctly put it, “Her little brain is rewiring itself.” Now, just to give you an idea, it is normal for all children to have these frozen moments when their body registers a new motion (check out the kids at the park the next time you’re there). What distinguishes a child with SPD from a typically developing child is the length it takes for them to register the motion. Today’s bike ride was one for the books: 10km long bike ride, and post-10 minute rest in order to register the motion.

While we were waiting for what we were referring to as our “strung out” babe to come to, we discussed how it would either be meltdown central, or baby bliss depending on whether it was over stimulating, or just right stimulation for Maddy. Wouldn’t you know, baby was blissed out the entire evening.

Today is the first day Maddy has seemed happy from start to finish. I mean, she’s still a 13 month old and she fussed and cried a bit, but she fussed and cried about completely typical 13 month old things, like being put in her car seat, or picked up when she wanted to walk, or when we took away that pebble she was trying to eat.

I have never had such an enjoyable, pleasant day, end-to-end with our little boo-boo. We really think we’ve hit on something. We think that the combination of gluten and SPD is perhaps the mixture that was so confusing and difficult for us to figure out. Only time will tell, but if this week means anything, we’re definitely on the right track!

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4 responses »

  1. I’m so excited and thrilled for you – and amazed at the strength and endurance that has been required of you, on TOP of being first-time parents. God chose amazing parents for Maddy. Thank you for sharing your courage and your pain. It will be helpful to others beyond what you will ever realize. I’m honored to know you both.

  2. Pingback: Tipping the scales « sewrite

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