Our superbabies are still not doing so super.
Landon is as weak as I’ve seen him since his early early days. It’s all we can do to get his meds in him, and keep him hydrated. He is comfortable, relaxed, and happy. But soooo lethargic. It’s a rarity to see his eyes open. He has no appetite, and little to no response when we try to feed him. Every other day or so he’ll perk up to take a decent amount in one feeding, and I’ll get excited. Then he’ll eat near nothing for the rest of the day. I have no explanation for why he is still hydrated and not yet losing weight. All I know is I, as well as his day time “moms” have done all we can.
As a catch up, we’ve x-rayed his lungs, and ran lab tests to look for RSV, anemia, blood infections, acidosis, Topamax levels, and electrolyte levels. Everything keeps coming back fine.
Except he’s not fine.
Nolan is doing better by comparison, but is also not himself. They both have a cold of some sort. Nolan has the vomits again, and not much of an appetite. But nonetheless, leaps and bounds better than Landon.
I would feel better if we could blame this on something. Something temporary and fixable. If it is the Topamax, we can take them off and try something else. If it is the virus, eventually the virus will go away. If it is a reaction to ending the steroid, eventually their body will re-acclimate. If there is no “reason”…then the reason becomes Lissencephaly. And I don’t want to believe that we’re ready to start taking steps backward, or dealing with loss of function yet. It’s impossible to believe that when only days ago they were increasing their alert time, eating wonderfully, smiling responsively, and making progress on their neck strength.
We’ve tried to wait it out in case the medicine needed time to settle. When one tests comes back fine I push for the next. I call Children’s with what we’re seeing. As long as the boys were making 3 wet diapers per day they were content to wait longer. But Landon is no longer even meeting that poor requirement. And I didn’t get a call back from our specialist until this evening, so we had put our own action plan in motion. I’m at the ER at a nearer mid size town now, working with an unamiliar team. We need to rehydrate and investigate further. Our story is scary and intimidating, so pray that we can work through the noise, focus on what is important, and get this sweet sweet boy feeling better soon.