We had another appointment at Children’s Mercy on Monday. I’m having mixed feelings about how it went. It seemed for a while like we were on track to get her off of medication soon. She was taken off the steroid a few months ago, they weren’t increasing her Propranolol doses, we started going eight weeks in between appointments rather than four or six… Now, it seems like her progression has stagnated.
Her lip looks great. It really does. Compared to the size that it was even a few months ago, the difference is wonderful. And without treatment at all, who knows what size we might be dealing with. Honestly, I don’t like to think about it. So, I am extremely grateful that things are going as well as they are.
But I am impatient.
The plan has always been to have her off of medication around fifteen to eighteen months. I am getting kind of sick of drawing up little syringes of medicine, spilling it everywhere, and waking my baby up at night to feed her a bottle that we should have put away already. We are now coming up on her fourteenth month and we aren’t even close to weaning her off of the Propranolol, which will be a process unto itself.
Instead, they have upped the dose again. AGAIN! I was not expecting that at all. I went into the appointment on Monday completely thinking that we were going to begin lowering the dosage.
It seems like the tissue has really improved below her nose, but the mucous membrane of her lip and inside her mouth has really showed little sign of change in the past few months. It is still pretty thick, although softening, which you can tell when you lift up her lip and peek inside. And even though it is improved, there is a chance that if she is taken off of medication too early or if we do not continue to increase with weight gain – essentially nullifying the dosage – regrowth is possible. And we do not want that. Still, the Doctor is very optimistic that she won’t need any sort of corrective surgery and that she will have a great outcome.
Lips can just be stubborn. Apparently that type of area can be slow to react to medication and Baby Girl’s has been a pretty solid case of that.
A lesson in patience…having a toddler is nothing if not that, right?