01/01/2025
Happy New Year!
This year has been a whirlwind for so many reasons, but obviously one large reason is that we finally have answers for Irelynās medical complexities.
This year, we continued care for:
-Anaphylactic allergies to eggs, peanuts, and Miralax (thankfully, no major exposures that Benadryl couldnāt help with). She also oddly has issues with carrots.
-Eczema (thankfully, it is minor).
-Reactive airway disease (although we did have to take her in for breathing once; we caught it early before bronchitis set in, and we have learned her breathing a lot better to treat quicker).
-Dysphagia (we have worked hard on this one to teach her to chew and drink properly, and we are making good headway; although she showed aspiration in April during a swallow study, we are confident sheās improved, and weāve had fewer respiratory issues this year than in previous years).
-Inconsistent bathroom issues (this, we donāt have an exact answer for, but we know how to handle it better).
This year, she was additionally diagnosed with:
-Dermatographism (which explains her insanely sensitive skin to touch/weather).
-EOE (this is obviously our biggest thing this year, after almost a year and a half of fighting to get the right answer and dealing with a misdiagnosis). So far, wheat is the only confirmed trigger (and dairy is assumed and suspected to be the first trigger from almost two years ago when this all started), but this year, we hope to figure out the other trigger(s).
Essentially, this girl is a beautiful allergic condition mess. Of course, itās always disheartening to know your kidās life is and will be different when it comes to care and always being careful with things that are part of all of our daily lives, like food, the environment, medications, etc. Butttt knowing how to help and her learning from the get go how to care for herself and keep herself safe is a blessing weāve been fighting for for that reason!
Currently, she is allowed to eat more foods than she ever has been, and although we donāt know if we will get to keep all of them or if it will work, we are enjoying the access. Sheās in the middle of a diet elimination trial to manage her EOE and in a few months we will rescope and see if sheās able to reach remission on it and go from there.
Amiya (pictured behind Irelyn) we are so thankful we were also able to pinpoint her cyclic seeming vomiting to likely a significant ragweed allergy and she will start allergy shots very soon and hopefully we can get that under control or at least in better control before the next ragweed season and hopefully not need to continue doing scopes on her.
