I'm a list maker. It helps me keep organized. It helps me feel like I've accomplished something in a day, when I'm at home and the whole day is constant interruptions. Multi-tasking, who does this better than a mom? Only thing is, lately I'm more than just mom. Of course I am also a Dietetic Technician part time too but that is something I enjoy too...I enjoy helping people. But I'm not accustomed to having people help me. Patience my 1st son taught me most. Strength is what my 2nd son taught me most. Time for fun and giggles is what my 3rd son taught me most. And Humility is something Little Man has taught me.
These days, my lists are longer than the day. My plate and cup runneth over. I want to just be mom. Don't get me wrong, I am not asking for anyone to take away his FPIES. I just want help putting the pieces of this puzzle together and managing them, so I can be the mom I was born to be -- to little man and to my other boys. The help I want is in his coordinated care of medical professionals that are there when his illness goes out of my scope of knowledge. I am his mom, I will always know what is best for him but I don't always know what to do when he has low hemoglobin, or he is reacting, or his diet is too limited, or his digestion is off balance, or when he has pain that I can't identify or take away....
Researching his allergy and his digestion is top on my mind these days. I have so many things to read and go through, some things I've read before but seeing differently with "FPIES eyes", some things are new and unexplored, some things are "out of the box".
It is clear to me that his digestion is off balance. He doesn't have the proper enzymes to breakdown foods in the small intestine (this confirmed by his dissacharidase deficiency on last biopsy), I suspect he has a low mucosa lining to his gut (this shown by his low IgA levels), his inflammation is chronic, and at last scope- patchy. Improperly digested foods go through his small intestines- where they are attempting to be absorbed but too big and thus causing allergic reactions from his body rejecting it. The food propels through his small intestine to his large intestine (colon) where his lack of good gut flora leave it unable to breakdown and only feed the dysbiosis, this showed by diaper rashes that look "yeasty" with any ingestion's of sugars. I need to correct his imbalances or food trials will continue to go as they have -- uncomfortable and uneasy....
Where do I start? I make a list....
My "sister" and fellow list maker . . . I admire you so much for your perserverance in finding a way to make your littlest healthy and comfortable!! And thanks so much for your support!
ReplyDeletesounds so similiar to Nolan...his diaper rashes have subsided and he doesn't have undigested foods in him bms on a regular basis anymore. He did for months upon months. I hope you get to the bottom of it. He also has had the inflammed gut for months. I wish I could give you some great earth shattering advice. I do wish we could just be our son's moms.
ReplyDeleteOne thing that has helped Nolan when his gut is inflammed and undigested foods are in his bm's are green smoothies. I feel this isn't great advice since I know Little Man's diet isn't to the place where he can have such. And I periodically give Nolan them. In fact the majority of last nights dinner was a green smoothie (spinach, strawberries, banana and water). A friend of mine whose husband has ulcerative colitis says when her husband is in flammed (outbreak/reaction) he eats a mono diet to get his body in alignment. That helped immensible a few months ago. Meaning, Nolan (or her husband) ate one food until full, next time hungry ate a different food. No complex foods no meat until tummy wasn't inflammed.
Haha R.- you always make me smile...cause of course you are a list maker too!! ;) What support? You've given it all too me! Thanks for being there when I need a shoulder!
ReplyDeleteAnd yes, Greenmoustaches- I will be calling on you for that recipe when I can get to that point....and since it's already green- hemp protein powder would fit in quite nicely with it!! :) How is Hemp going this week for N??
ReplyDelete