Well, sort of…
Just like anything else there is never a magic bullet, but this certainly comes close enough. Aleck started his regimen of Reglan at the beginning of April, unfortunately right in between two of his three stomach viruses for 2014. After about two weeks on the medication he ate his first entire scrambled egg. I almost fell out of my chair. Then he ate his first chocolate chip cookie while we were in Trader Joe’s, followed by another one in the parking lot after we checked out, then another one after lunch. That same day he turned to me at lunch and said, “Mommy, I love lunch.” I almost cried. Now it wasn’t the first time we’ve offered him a cookie, we’ve offered him cookies hundreds of times, usually he takes a nibble or two then he’s done, but this was the first time he was really interested in eating. It was amazing. For three weeks life was just bliss. Meal time became a lot less stressful, I could literally feel my jaw unclench day by day, and in the meantime we were transitioning him to drink a bottle full of whole milk instead of the infant formula he’d been stuck on, things were going well, that was until Thursday May 8th. While enjoying his morning bottle and getting us ready for our rush hour commute to the RIC, he suddenly gave back that entire bottle of milk all over me, my clothes, his clothes, and the couch. Needless to say we were late for OT that morning, and even after scrubbing the seams of the couch with a toothbrush I can still smell the faintest hint of that bottle, ugh.
It’s been downhill again from there. We are back in the cycle of throwing up again, sometimes because he chokes, sometimes because he was crying anyway, and sometimes I just don’t know. Sometimes we can avoid the vomit fest by reading books, changing locations, and sometimes we just can’t. But what was really disheartening is that during those three weeks he was eating really well and meal time was super fun, he only gained a few ounces. At his last weigh in a week and a half ago he was 22lbs 3 oz. Even when things are good they don’t seem to be going that great. I’ve had to move him back into 24 month clothes, especially in bottoms, and even those pants don’t want to stay up around his scrawny midsection. His GI recommended cutting down his dose from 4 times a day to only three times a day, we started that on Sunday and we’ll see. From our brief conversation with the dietician and his lack of weight gain we decided to add back in a mid day bottle to his routine. He’s been asking for it for months but I was afraid of taking a step backwards. Now it’s thoroughly back in his routine giving me even less time to play with him during the day and adding many more episodes of Peppa Pig to our repertoire since it’s been the only show he wants to watch for the last three months. He threw up today an hour and a half after he had stopped eating breakfast, while having a temper tantrum since he was in a time out for kicking mommy, a regular battle in the house but usually a fairly calm one. After all, he does still express himself a lot with that left leg. I gave him some water to sip but all he wanted was his bottle, so we had a bottle and then he had his physical therapy session. Lunch today wasn’t great but at least I can take comfort that he already had another 8 oz of milk in his tummy.
The good news is that the downhill part of this section began after we got back from Detroit from my grandfather’s funeral. There he was eating great, not throwing up at all, and because of the increased eating didn’t seem phased by his 15 minute nap in the car every day and not getting to bed until 10pm, 2 hours later than normal. He didn’t have a single meltdown all four days we were there and provided a much needed happy distraction for the rest of the family.
Another change we’ve made in the house is the removal of splints and AFO’s from his nap. That’s been a huge relief for me. When he was sick it just didn’t make sense to strap him in for a barely 45 minute nap to then be completely freaked out when he woke up crying that he was going to throw up all over his splints, literally a mad dash to get them off before whisking him away to the bathroom for damage control. Now he’s napping much better than ever, averaging about 2 hours, and there’s no longer this extreme urgency to jump at the littlest whimper. The downside is that every night there is now a conversation about “no splints” as we reiterate, “no splints for nap, but splints at night.” He doesn’t put up much of a fight, thank goodness, but there’s a part of me that is afraid of the day when he really starts to rebel against his nighttime bondage. After all, he now gets a taste of the good life, sleeping unencumbered, every single day. This is why I didn’t make this change earlier, I’ve been afraid of even showing him that splints aren’t needed to get to sleep, worried that it would set an ugly pattern for bedtime. But clearly it was a really good move, for him and for me. Putting him down for a nap is much less of a chore and my heart doesn’t beat nearly as fast when I hear him wake up. He also used to wake up 45 minutes into every nap, requiring me to go in and rub his back and settle him so he could finish his nap and have the energy for the afternoon to eat, drink, and play. And that was only on the good days, on the bad days I’d come in to settle and again rush him to the toilet, or I come in to settle and he starts yelling, “Good nap, I have a good nap”, and in those moments all I can do is smile and pick him up since it’s clear nap time is over. Aleck is truly one of those kids who will choose sleep over food every time and lunch and dinner can be a real challenge if he’s tired which means he needs at least an hour and a half of a “good nap”.
Tomorrow we head back to University of Chicago to see our GI, an 8:30 appointment about 14 miles away, which means I need to leave by 7:15am the latest to get there, which means breakfast by 6:45am for Aleck, which means bottle by 6:00am which means I have to get up at 5:15am to make this all work. When we get home it’ll be time for physical therapy so I’m praying my little man falls asleep in the car on the way back or else we are never going to get to lunch.