My youngest son is a major sweetheart cutie pie, full of smiles and laughter and always looking to learn new things. He definitely has his 2 year old moments of melt downs and temper tantrums, but for the most part he is usually very easy going other than being pretty shy. You would never know that he suffers from constant diarrhea and painful stomach cramps or that he has a fairly restricted diet that currently excludes any dairy, egg, or soy products (that eliminates a TON of foods). He’s suffered from it his whole life and hasn’t ever known any other way, but it’s still so sad and hard to deal with. We started out removing things from my diet while I breastfed until we figured out what bothered his tummy and for a year I gave up all of them (yes I gave up chocolate and baked goods). Next step was doing allergy scratch tests, first at a year old and again when he turned two this summer, discovering only that he has some grass and seasonal allergies. Despite keeping known food intolerances out of his diet the best we can, it hasn’t gone away. So we began our adventure to try to figure out his diagnosis in August. I collected 4 containers of poo and took them back to the doctor to find out only that he has no parasites, no blood, no known infection, and digests fat. Then we moved on to the Gastroenterolgist but not before dealing with my husband’s head trauma incident. After seeing my son, who by the way is quite a big boy , he said we can assume that the worst case scenarios can be excluded because he is obviously thriving despite his issues. But we would have to put him through quite a few tests before we hopefully came back with a diagnosis.

Last week began the round of testing with a endoscopy and sigmoidoscopy (similar to a colonoscopy). We had to prepare by giving him two enemas, that in itself was a completely awful experience that I wish on no one.  He and I took our first trip downtown to the hospital and arrived at 6:40 am to check-in and fill out paperwork (that’s super early for a night owl like me ). After picking out a stuffed animal to accompany him, a koala bear that he says is a dog so that’s what it is, we settled in to a room to watch cartoons and play with toys while I tried to wrestle him into special hospital pajamas (he wanted nothing to do with them since he was happy with his own clothes). After meeting with the anesthesiologist and our GI doctor, we headed to the procedure room where I watched him fight going under and fought back my own tears. Thankfully my stepdad was waiting in the waiting area for me and we chatted while sipping hot chocolate. When he came to I headed back to see him, I could hear him crying as soon they opened the double doors to the recovery area. He screamed until the IV, the ID bands, and every piece of tape was taken off and then promptly fell asleep in the car for a much needed nap.

purse camera snapshots of the boy, his “dog”, and me

After that experience, he got a little break for some Halloween fun (I’ll post pictures soon!). Yesterday he had his blood drawn for a slew of tests that looked to be about 10 vials worth, luckily the lab tech was fabulous and drew it all into a large syringe and then distributed. I got sent home with poo collection duty one more time as expected. And now back to today. Today was the easiest of all but little man still didn’t want to do it. Today we arrived at the hospital at 8:15 after fighting rush hour for over an hour to sit in one more waiting room with more possibly sick people. We played while we waited and I explained to him that this time was just a picture of his tummy. So my funny boy lifts up his shirt and has me take a picture of it and asked to go home . We did leave very shortly after that, but not before getting the xray that required some persuading to stay still in exchange for a grape smelling sticker.

purse camera snapshot for his belly picture

We are testing for Crohn’s (my dad and sister both suffer from this), Celiac’s, enzyme deficiencies and a host of other things. I’m really hoping that all the results will be in next week and we’ll be able to get a diagnosis after all of this. But even with all of the difficulties of this last year, I’m just so thankful to have my beautiful boys and that they are as healthy as they are. I was reminded today that God has his reasons for his timing even if they are difficult for us to understand, if not for my miscarriages this year I would not have been able to be there in the radiology department with him today or have had the ease of taking care of my family in all our latest events. And I’m putting my faith in the fact that it will all work out in the end.

(after he got off the backboard, PS this was with the little point and shoot I carry in my purse)

We were then informed that he was going to be transferred to a different hospital as a precaution in case it got worse and required surgery (the second hospital has a neurosurgery unit and was only 8 miles away by ambulance). I was scared, especially after he started throwing up. I ran home to grab dinner for my momma and my boys and found him in the ICU when I arrived. I’ve never had to advocate on someone’s behalf to busy nurses, or spend hours next to a mostly sleeping person’s bedside-it was an awful way to spend two days. It took forever to get clearance from a neurosurgeon, a cardiologist (another precaution), and an internal medicine specialist to go home that we were afraid he’d be there a second night.

We finally got home and got him settled in and I waited up for my mother-in-law to bring the boys home from a day spent with out of town guests. Saturday was spent with those out of town guests celebrating his grandfather’s 80th birthday (I’ll hopefully get some pictures from that up soon), it was a wonderful get together but we ended up spending Sunday recovering from the previous few days by laying around and sleeping. Which leads me to Monday that I tried to spend catching up on everything that fell to the wayside last week and not succeeding at any of it. I drove my husband, I am now his chauffeur, to his doctor’s appointment to find out he still is not released for driving and will need yet another CT scan. And today will not be any easier as we go to to our youngest’s first GI appointment to see if we can get to the bottom of his tummy issues.

All that to say – Do NOT skip breakfast and I will get back to all of you as soon as possible! Pleases be patient and if you don’t hear from me in a couple days, please try me again.

And thank you everyone for all your prayers and kind words! He’ll be ok in the long run, at this point he’s dealing with bad headaches and some short term memory loss that could last awhile and amnosmia – loss of sense of smell – that may or may not get better.