Lets talk poop
Little mobility + little fluid intake + medications and feed thickener = troubled motility.
It’s no secret that we’ve struggled with Amalie’s bowel movements and still have the constant struggle.
Things have been pretty bad these last couple of months, and if we hadn’t mistakenly been sent a ridiculous amount of enemas in error by incontinence suppliers, we no doubt would have shares in Microlax by now.
Things have gotten pretty bad, so much that it has been very hard for Amalie to ‘go’ on her own. The compaction, the strain and the pressure is all too much. School and Amalie’s carers have been working hard on making sure her fluid intake is adequate, and we’ve been working hard on making sure her food has better variety, massages, and opportunity to be off her bottom and supported (standing or laying). Amalie can go well over a week or so without a decent bowel movement. But today was a different story - poop at school, poop in the car (followed by a seizure), poop at Tia Lucy’s house, followed by another seizure, another poop and another seizure. At this point we had no spare nappies remaining . I get home and get her out of the car - another small seizure and a completely wet bottom. She must have held onto it and let it all out on the drive home.
So we need a change of clothes, a clean butt, mum needs to strip the car seat and take all the covers off, wash them and get them dry before the morning - or else Amalie won’t be going to school. I also need to re-stock the car backup supply (thank god that was there because I forgot to take our usual bag of toileting supplies). I also had to do this before getting myself ready for a game of netball, which by this stage I was ready to pull the pin on. I get home from netball and Frank tells me he also had a ‘shitty’ nappy to change.
My god, when it rains, it pours.
But you know what, Amalie must feel sooo much better for it. And that’s what matters most. Let’s hope that this also means less seizures tomorrow.
#amaliesjourney #lissencephaly #smoothbrain #rare #constipation #poop #poo #poopstories #andthesearethedaysofourlives #dontforgetyourtoiletpaper - 5 hours ago