Constantly Questioning Decisions ?????

November 23, 2014 by Lesa 1 Comment

So, there has been a lot of change in the past 4 or so months… Thein had a horrid scope at our CCED initial visit (the 4 day one). His count was the same or slightly higher than his previous one, at which point we started the elimination diet. I knew it was going to be high, but not that high. They ran his blood and come to find out he is allergic to beef, rice, corn and potato (a food trial that went south quickly). His diet, at that point, mostly consisted of Hormel Pepperonis, veggie straws, grass fed organic meatballs, rice and NeocateJr.

Who would have guessed that after eliminating the top 8 allergens, your child would be just allergic to the foods left. Well if you know this disease, then you know that it can cause their poor little bodies to be “allergic” to just about everything. I used my infamous “” because most are really food sensitivities. Figuring out the allergens and the sensitivities… Now that’s the hard part.

We started the elemental diet (medical grade formula only diet, yum!) mid-July and three months later his scope came back at 3 eosinophils! 😃  Starting the formula only diet was really rough the first week, but then he started to feel better. Each week the begging for food decreased. He will still ask from time to time, but his new thing is asking to smell your food.  It brings everyone to tears and rips my heart out every time. I have recently started forewarning people because I would prefer Thein to not witnessing the all the sobbing. Sam & I just let him sniff away and then cry about it later. It is extremely hard not to get choked up as this sweet little face is staring up at you (that’s when you make the “I got to pee” dash to the restroom).

So, it was around September when I finally came out of the closet (really it was the restroom where I was sneak eating). Wow, was that hard. He’s little sniffer must be in overdrive because he came barreling out to the kitchen, “Mommy! What’s that smell?!”  Slowly, I added a snack back during the day and made sure I was just close enough that he knew I was eating. Some of you make think that was mean of me to do, but he will have to face this sooner than later. I wanted to ease his exposure to someone eating in front of him slowly, rather than him be bombarded with all the smells and feelings all at once. He did really well with this approach, so we stuck to it.

Then came dinner time… This was another challenge. Having dinner as a family has always been very important to me. It was a time we were forced to stop what we were doing and come together to talk about whatever and that’s what I loved (we have some pretty memories made… for example, the no dating until you have hairy pits convo 😜). I was stuck. Do I make Thein sit w/ us, watch one of his programs in the same room, or go play? Me being me, the going off and playing idea was out the window. He is still a part of our family and should be included in our family time. So, we opted to allow him to sit in the brown chair in our kitchen, which has really high arms so his younger brother (19 months apart) couldn’t see Thein’s sucker. Sometimes he will come to the dinner table with his sniffer in full force and other times he could care less.

Then came the spaghetti and meatballs night… Knowing Thein’s love for meatballs made me put off making it, but it’s also my 2 other boys favorites as well. Just another decisions you question later if it was the right one. I have come to find out with Eosinophilic Esophagitis (as well as a lot of other things) questioning if you made the right decision is constant! He so young and doesn’t understand enough of EoE yet.  So, back to the meatball night.  As soon as he saw the meatballs, his eyes lit up. He was so excited.  Sam and I were crushed.  It was too soon.  Sam nor I could bring ourselves to eat.  Sam just sat at the table while the other 2 boys devoured their food and Thein was belly up in front of my plate sniffing and drooling.
While all this was going down, my tears are flowing into the sink with my attempt to clean pots. Then walks in my savior, Misty. Our neighbor came to see if Thein wanted to come out and play. I think she took one look at me and knew something was up. I haven’t been able to make speg. & meatballs since.

Needless to say, I’m not looking forward to the holidays.  Especially since he will be getting his g-tube Dec 16th.

Look at that sweet face, sitting in the brown chair I referred to.  That monster costume is size 6-12 months and he is 3 1/2yrs old.  The costume is on the small side, but there is no way he should be able to fit into 6-12M at that age.  I cannot wait until he gets his feeding tube and starts to grow!  We will be having a 30lbs party when he gets there, for sure!  Hopefully that happens soon 😀.