Like most moms, I worked hard to nurse both my boys until they were a year. I was returning to work at the year mark and wanted them weaned when I went back to work. Things went almost as planned and I managed to have them on milk with a bed time nursing only until they dropped it on their own.
I took pride in knowing I did my best for my boys. Moms are told breast milk is best and is the healthiest for your baby. It lowers your chances for many diseases and I couldn't be happier I did this for my boys. Aydan adjusted well and I assumed Zayn would too but he didn't. He had a hard time for a long time and we thought he was fine.
I remember rushing home to his daycare when he was 13 months because his daycare provider found blood in his stool. By the time I got there, she told me she googled it and it was normal in breast fed babies. I took him to the Dr. and was told if it happened again take him to the ER. It didn't happen again but a lot of other things did.
His stool was rarely solid. His diaper was always leaking and he had numerous bowel movements a day. After numerous doctor appointments, we were told he had a dairy allergy. While we waiting six months for his allergy test, we went on a dairy free diet. While his symptoms got better, I didn't feel good about him. I knew there was something else, I knew he had more potential to be healthier but trying to find out what was wrong with him was terrifying. The more I read online, the more I prayed he only had a diary allergy. He finally loved soy milk and we found these great dairy free brownies he enjoyed so much. I could live that life with him.
After speaking to the pediatric allergist she was convinced he did not have a dairy allergy. The results showed exactly what she thought - he had no allergies!
Our next stop was speaking to a pediatric GI. In our initial consultation with her, she was convinced Zayn had Colitis or Crohn's disease. She took some blood work and ordered a colonoscopy and was on her way. We sat in the examination room lost and confused. Zayn might have Crohn's disease? Or Colitis? Sulman and I read everything we could find on the two diseases and prayed his colonoscopy would not show any signs of either one.
The day of his colonoscopy was nerve wrecking. Visions of everything bad took over my mind. His recovery from the procedure took longer than expected and all I wanted to do was see him. His doctor confirmed there was inflammation and he had Ulcerative Colitis. Tears rolled down my cheeks while she said the words. I remember her glancing at them and not showing any sympathy at all. That was her everyday and with her words my everyday changed.
From that day on, so many things about Zayn made sense. UC had taken over the second and third year of his life. He struggled to do things kids his age did because of UC. He lost all of his baby chunkiness and looked sick! The doctors kept telling us because he was gaining weight he was fine, why did we worry? At the time of his diagnosis (3 years old) he weighted 30 pounds. Aydan weighed 30 pounds when he was 18 months.
UC meant four doses of Sulfasalazine every day. Everyday, I had to give him medication.
We switched his care to Sick Kids and felt so much better. The doctors and nurses knew how to make him and us feel safe. They assured us that although UC is very rare in children as young as Zayn, he did have a mild form of the disease.
Zayn has been responding well to his medication, within six months he had gained almost 7 pounds and grown eight cm. He opens his mouth willingly for his meds and doesn't think twice about why he has to take them. It's a part of his life now.
It's been one year since Zayn has been diagnosed. Tomorrow we go to Sick Kids to see his progress. His last ultrasound showed he still had some inflammation, and I pray it's gone now. Looking at him, you wouldn't think there is anything wrong with him. He's your average almost four year old. His favorite shows are SpongeBob, Bubble Guppies and Peppa Pig. He loves motorcycles, bowling and anything his older brother does. However, when I look at him I see UC.
I hate that his health is dependent on medication. I hate that no one knows why he has UC. I hate that no one knows how to get rid of it. I hate the fact that he can get sick at any moment. I hate reading that having UC means he is more likely to get colon cancer. I hate that I have to ask him if he went to the bathroom and if it hurt. Was there blood? How many times did you go? I hate everything about it!
When you have a child, you don't think anything will be wrong with that child. You envision nothing but good things for your child. While I do the same for Zayn, I can only pray this disease doesn't end up defining him. I pray he stays in remission and enjoys his childhood like all his other friends.
And I pray I can find peace with him having UC and maybe one day I will accept it and not think about it everyday!
Zayn is one of a kind- and I pray for nothing but the best for him.
Here's a picture of him from one year ago and a few weeks ago. He's grown so much!
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