And an update is long overdue. I've been meaning to add all this, but I kept waiting for more info. I'm gonna be waiting for a while though, so here goes.
We have no actual diagnosis.
Just kidding. Sort of. There IS no diagnosis. But it's not the end. Pretty much, any test result that HAS come back abnormal, no one knows how to make sense of it. And everything else is "normal". The one thing of note is that on the celiac gene test, he rates very high on the likelihood of developing celiac. Now, people can have this gene and never get it, and he's tested negative on every other celiac test out there. But because it is LITERALLY all we got, that's what we are going with. Strict gluten free diet and environment. This is tough with any kid, or anybody at all, but it's really hard with a kid who has feeding problems and textural issues. Which is why we've never done a trial of it in the past. But things are clearly bad enough that we have to embrace it. It's hard though cause he's not diagnosed with celiac disease. No one else knows this, so I could make things much easier on myself and just say: my son has celiac disease. But I don't like to make things that simple. Too weird. I like to, instead, go into a full explanation of the past four years to unsuspecting strangers who don't really care and will think twice about being nice to people in the future. I'm doing my part.
So for the past 10 days or so James has been properly gluten free. It takes time to see results, but yesterday his abdomen was noticeably less bloated and has stayed that way.
We stopped using TPN last week and that was a little rough in the weaning department. He had low blood sugars that he couldn't express and felt pretty crummy. Fortunately (I think?) he has a diabetic mother well versed in low blood sugars, so it was very easy for me to recognize and treat. His diarrhea was continuing though, so I made the executive decision to take him off the pancreatic enzymes and then text the dr later. He may still need them at some point, but I was fairly certain they were a problem. We also started giving pectin, like the stuff you use to make jam? It really helps. So weird and simple. Anyway, he is worlds better.
We did suffer setbacks in the feeding and sensory department that will need to be dealt with. He mouth seems a little dead and lazy now, and he displays a little less interest in food. But I've gone back to smaller meals and spoonable foods in between for calories. He lost weight coming off the tpn, which is completely normal but you hate to see. The thing is, we have to continue to balance physical health, mental health, and sensory therapy. We've worked really really hard on his physical health this summer, but to do any more is to risk his mental health. It is time to go home and regroup, relax, recharge. And remember some normalcy.
So it's with a slightly heavy heart I return home. My sister calls it happysad. :) We've learned a lot and ruled out a lot of scary stuff. We are stronger and more grateful but also frustrated.
When we first met with Dr Semrin in July, he listed off a few possibilities and said he didn't want to scare us. I said not to worry. Nothing was scarier than what was in our heads. He then asked what was in my head which was funny because it's a scary scary place, but also because no one else has asked me that. Which was why I froze up a little and stuttered out not the answer I meant to give, because I couldn't put it into words. I later told him:
What I'm so scared of is never finding anything out, and going through this over and over and over again until we can't help him anymore. At the time, I really never dreamed we'd be no further along 1.5 months later, aside from extra pounds due to iv nutrition. It's so hard thinking that's where we are and I feel defeated and exasperated. But also, I'm homesick and miss my husband and I KNOW that James will get better at home, eating our amazing and nourishing food and playing all over the farm!
Please keep the prayers coming. We just aren't done yet, but we will keep on keepin on!!
This one eats clams. So weird.
Helping let the chickens out with FaceTime