I have hesitated writing this down because, to be quite honest, I have wanted things to just turn around and be a non-issue. I tire of talking about it because these issues seem to be so all-consuming that I find myself just longing to think about something other than this. I also find it hard for people to really understand where we find ourselves because the majority of people just throw something on the table, sit down and eat. We are not that family.
Don’t get me wrong, I enjoy food and cooking.
But life as it is right now is about stressing amounts, reading labels, counting the calories, planning the menus, throwing pounds of food away a week at a time, spending huge amounts of money on safe foods/recipes to try, crying at meals, standing by with the EPI Pen, sneaking in the protein, starting and ending each day literally begging God for him to simply open his mouth and chew, and feeling downright defeated throughout the entire process.
Nothing about food allergies is easy. Add in Eosinoliphic Esophagitis and GERD and you have one heck of a battle on your hands and every hour of the day lately we seem to be losing.
But this is our reality and I know there are people out there who read this blog who are on the same journey we are. There are also so many who have taken our little boy under their wings and feel connected to us through the hardships we have had through prayer, practical help, etc. So I write to update and to help someone else navigating the days that seem so scary and uncertain. We are there.
So, what’s happening?
Once again we are finding ourselves exactly where we were this time last year. Although this time, we already have a fantastic team of Doctors we trust, and thankfully a diagnosis to assume as the culprit. So what is happening with Jonah is still scary, but we are confident we can get him the help he needs without the fight of someone taking us seriously.
Jonah’s eating has gone from acceptable to not-so-good to almost nothing over the course of six weeks. He’s back to losing weight quickly and we are once again finding ourselves in a panic, desperate for him to eat. And although he has gained back the weight he lost last year, he hasn’t ever gone past his original weight from his first year of life.
Our hunch is that he is having an allergic reaction that is going unseen (happening inside his body) that is causing his Eosinoliphic Esophagitits (EoE) to worsen. When there is allergic reaction, esonophils in your Esophagus can become inflamed, causing pain, damage and swelling. Up until now it has been controlled by medicine and the elimination of known allergens in Jonah’s diet and he has been out of pain, not vomiting, and a much happier little boy.
Between his GI Doctor and his Allergist this week, they will be able to determine if we should either change habits in medication and do a wait and see sort of thing or if we should go ahead and do another Endoscopy to biopsy white blood cells to diagnose the severity of his EoE currently compared to almost a year ago.
My fear is that he will need to go to an elemental diet where Jonah is off all solid foods and on an elemental formula diet to give him the nutrition he needs until he shows signs of improvement on his own with eating.
The other aspect to all of this is that between his many severe food allergies limiting his diet, past trauma caused by pain from EoE and past bouts of Anaphylaxis, it is more than evident to us at this point that he needs feeding therapy to help him eat. There are issues with different textures, with broadening his acceptability to other foods, presentation of foods without refusal, and simply learning to enjoy the process of eating.
Up until this point we have done well on our own with what I know from my past time in Speech Pathology, but I am also part of his problem since Jonah associates me with so many of his food issues.
He begins a new round of evaluations and assessments tomorrow.
So, there you have it. It’s complicated. It’s stressful. It’s disheartening. And it’s a long road. Please pray for improvement for Jonah, for comfort and patience as his parents, and for Sadie to continue on as a cheer leader for her little brother.