If you don’t know how we got here, this post might be helpful.
I’m not sure how to put into words what life has been like with Jonah for these past few months, but especially in these last few weeks. I think there is no greater pain than watching your child suffer through something they can’t tell you and be able to do nothing but wait.
In the last weeks, Jonah has gone from eating normal, allergy-friendly table foods that were age appropriate to eating to purees, to nothing, and back to purees. He’s had okay meals sporadically, but by and large he has been living off of minimal food and drink despite our best efforts. He has been gagging himself or simply throwing up food he eats numerous times a day or simply refusing. His demeanor is not the same. Sometimes we have good days, or good parts of days, but overall he is clingy, grumpy, crying and irritable.
Our grocery budget has ballooned just in an effort to find something he will eat and we have probably thrown away 90% of it. The two types of purees he will eat at some point throughout the day are expensive.
Jonah has gone from a hefty 24 pounds to 21 pounds in a two month period. This is a substantial weight loss for his age and we have to be proactive in getting a diagnosis to avoid any more weight loss that can turn into developmental issues for him not reaching milestones when he should as a result.
I have no idea how he isn’t in the hospital by now feeding from a G-tube and suffering from dehydration. All I can say is that God feeds him manna from heaven every night because he somehow always has a sopping wet diaper and a good poo waiting for us in the morning regardless. It’s truly a miracle to us.
Next week he goes to a highly recommended allergist in the area to run in depth tests on his allergies, talk about challenges for the current ones he has, and figure out a way for him to be accurately tested for Celiac Disease.
He will also go in for an in-depth 3 hour long X-ray study to look at his entire GI track to see if there are possible growths, blockages, etc. by his GI Specialist at CHOC.
He will also be starting Occupational Therapy at the hospital with a food therapist to work with him and with us to try and find a way to get eating food back where it should be regardless of the diagnosis.
We’re also adding into the mix working with a Natropath who will brainstorm any other things I can be doing naturally to relieve him at all and make him feel better.
His primary Pediatrician is in on it too, as you can imagine.
So, we have a full team of 5 professionals on our boy ready to get to the bottom of the issue.
This is not an easy thing for us whatsoever. It’s painful to watch. It’s frustrating to live through when so much of our lives revolve around food. It’s a hard balance juggling everything with my precious Sadie who just wants some attention when I have a screaming baby boy who hasn’t had a thing to eat or drink all day and I’m honestly afraid to put him down because I don’t know what’s wrong with him.
We covet your prayers as we head into this next week. Pray that we find clear answers quickly and that there is a solution we can work with to bring Jonah back to where he should be…a thriving baby boy.
We will keep you posted.