We’ve been having a pretty rough time of it for the past couple of weeks.
Two weeks ago today is when Emmett started up again with the very frequent vomiting. We don’t know why he’s doing it – he’s on several different medications for reflux as well as a gastric motility drug not available in the US. We’ve tried a hypoallergenic formula, we’ve tried lowering the volume and increasing the frequency – nothing seems to make it any better. And almost worse than the vomiting is the constant heaving, which makes him miserable.
This week is the first week we’ve seen blood in his vomit. It is probably just swallowed blood, as the NG tube is causing him to have a bloody nose, but still – pretty unnerving.
But the worst thing for us is that for the past 3 days, he’s refused to take anything by mouth. We don’t know if his behavioral aversion is getting worse because of all the vomiting, or if its something else, but it freaks us out badly. If he stops drinking formula altogether for a while, his body could forget how to swallow. Even before he stopped drinking, his drinking and swallowing seem less coordinated, as he’s only been taking anything by mouth at night for the last few weeks.
So we don’t know. Our Early Intervention feeding specialist is out of town for the next couple of weeks. We can’t get in to see the geneticist until mid-December. We are beyond frustrated.
And I, especially, am really struggling with why God would send this child to our family. He just seems to need so much more than we can give him. He needs someone who can work on all this feeding stuff and physical therapy stuff all the time. And honestly? – that person isn’t me. I have two other young children who need lots of attention too. I have a husband who will need to start leaving town again in less than a week.
I know that God has a plan for us. I just wish I knew that things were going to get better at some point. Because right now is really hard, and I have no idea how I am going to be able to manage when Mike leaves.
I’m sorry for being so negative – but I want to be honest with y’all. I think most people have the perception that we’re handling this all pretty well, but it sure doesn’t feel that way from here. Mike and I (okay, especially me) are short-tempered with each other and the older kids. I know that I am probably clinically depressed at this point – I could literally spend all day every day in bed.
We haven’t lost our faith – we know that God won’t give us more than we can handle. And we know that He loves Emmett and us. But God also doesn’t promise that things will be easy or painless, either. And I am all about easy and painless.
Ugh, sorry – I really need to get Mike to post – he is SO much better about staying positive. Maybe I can get him to post some Halloween pictures tonight.