Finally, at yet another doctor appt, his weight was down to 14lb at 14 months old. He was admitted again to the hospital. He would cry when we tried to feed him food. The doctor suggested going back to baby food. It worked. As long as I stayed away from anything chunky, he would eat it and seemed fine, which was the plain veggies and meats. He would not eat the fruits.
Well of course, by 16 months I was terrified; his weight was still too low and he looked sick. Finally, I started making phone calls and fighting with doctors to find out what was wrong with my child because it was not normal.
Just weeks after his diagnosis - making our first gluten free play dough. His tummy is still swollen here.
Looking a little better here :)
A handsome, healthy boy
on his 6th birthday this summer.
Happy Birthday Spencer :)
After months of testing and hospital admissions, by 18months, we had a diagnosis, Celiac Disease, which I had no clue about. I had never heard of it, even after years of working in hospitals myself. So we were thrown into a world of the unknown and scary. I was devastated to feel like my child would never have a life he deserved. So he and I went gluten free. It was SO hard for me!
He began to gain weight and loved food again! The screaming at night, holding his tummy, stopped. The hives stopped and he felt better and he slowly put weight on. It was a long road but I am thankful they finally found out what was causing him to be so sick.
(before diagnosis) I feared he would die and no one would listen to me that he was inconsolable in pain. He was 10months old and crying, bent over in pain, and they didn't believe me. It was horrible to be so helpless and have doctors tell me over and over nothing was wrong with him, that he had viruses and "toddler diarrhea" from putting stuff in his mouth, he was teething, he was gassy, the hives were viral! I was over reacting. It was absurd.
Spencer has Aspergers as well, so life is complicated for him at times. He's extremely smart and high on the spectrum, so I am very thankful for that. He does often wish he were like other kids and could just eat whatever he wanted but he knows when he eats gluten he has what he calls brain fog. He can't think clearly and his stomach hurts for days, sometimes weeks, and his mood is awful. He has fits now when he feels something isn't fair or plans change but I am noticing as he gets older its a little better and at times he's flexible but he has very rigid thinking and concrete when you make plans or when it comes to his schedules. This helps with his Celiac though. He even questions me if its gluten free if its a new food, LOL. Its all he has ever known, basically. He will tell people "you have to wash your hands, you touched gluten, you'll contaminate me!" And "I can't eat that, it has gluten." Now that he can read he reads every thing he can get his hands on in the store just to check if its gluten free.
He has read his book every night! He loves it. He understands he's not the only one with celiac because he used to say he was the only one in the world. He would actually tell me at 4years old, "mommy you're just saying other people have celiac to make me feel better!" He knows now he's not the only one. We have met a few people with Celiac, so its been helpful. He has all the special treats he wants that match what others have, so he's accepted it and is okay with being different as long as he's what he calls "still the same." Having the same kinds of foods and goodies is important to children.
I love the book! Very well written and its so nice to relate to someone. So that's Spencer's story! He is now healthy and doing great. His lungs were damaged due to numerous pneumonias but he only had it 3x last year, so that's an awesome improvement. He is a trooper and a fighter! The love of my life!