Tuesday, September 9, 2014

In early August, we flew down to Houston for Collin's annual follow-up with his radiation oncologist at MD Anderson Proton Center. She was very pleased with how he's doing. I told her about the reflux issues he's been having, but she did not feel it is a long-term side effect of radiation. I have been trying to help Collin's reflux any way I can. I make sure his clothes aren't too tight, I make sure he stays upright after meals, I prop him up in bed so he's not laying flat, I try to avoid giving him any food that could aggravate the reflux, etc. There were a few weeks where it seemed like there was an improvement in his symptoms, but then he came down with a respiratory infection, and his symptoms increased again. Last week we consulted a pediatric gastroenterologist. He spent a lot of time going over Collin's history and discussing possible causes. He ordered some tests to try to find the cause of the reflux. He ordered bloodwork, an abdominal ultrasound to look for any organ damage that could have been caused by chemo, and a gastric emptying test that will check the motility of Collin's stomach and intestines. If those tests don't show anything, he may do other tests that are more invasive, like an endoscopy an a pH probe test. It sounds funny, but I'm hoping this doctor can find a reason that Collin is having such reflux, because hopefully then we will know how to fix it. It has become a quality of life issue for us. Collin has thrown up in the grocery store, in church, in the car, on the couch, in bed... often there isn't much, if any, warning that it's going to happen. The couch and bed are once again covered in waterproof sheeting to make clean-up a bit easier, and I often follow him around with an emesis basin or bag asking him if he feels like he's going to throw up. Collin is way more aware of things now that he's older, and I worry about him feeling self conscious if/when he throws up in public, especially school. So on Thursday, September 18 we will be at the hospital all day for the tests. The bloodwork and the gastric emptying test are fasting. The labs are scheduled for 9:00 am, the ultrasound is at 9:30 am, and the gastric emptying test goes from 11:00 to 3:00. It's going to be a loooong day.

As I mentioned in my June update, we made the decision to send Collin to a pre-school program this year. It's called transitional kindergarten, and it's for children who are kindergarten age, but may benefit from an extra year before starting kindergarten. The class has two wonderful teachers, and is very small; there are only eight students in the class. Collin will also continue receiving physical and occupational therapy from his therapists from the IU, who will come work with him in the classroom setting. Last Friday we had the opportunity to stop by the school so Collin could see his classroom, and meet his teachers and a few classmates. At first, Collin was pretty reserved, but as we played together, he started to have more fun. By the time we left, he told me he was going to like it there, because his teachers were nice. So yesterday, Collin was eager to get to school for his first day (orientation). As we got ready to leave the house, he solemnly said, "I will try to make friends Mom, I promise." My heart just shattered. When I dropped him off at his classroom, he very bravely waved goodbye to me. When I picked him up, he ran to give me a big hug, and seemed like he had a good time. All of the students and teachers went out to the playground afterwards. Collin hasn't played on a playground too many times, and between uneven surfaces, and lots of kids who can move around a lot faster than he can, it's an unsettling environment for him. I held his hand hand, helped him climb up steps and slide down slides, but after a short time, he was ready to leave.

Today was the first regular day of school for him. He seemed a little more nervous when I dropped him off at his classroom this morning. When his class went out to the playground today, he wouldn't go on any of the playground equipment, even though there was an aid who was able to help him. When she talked to me later, I couldn't hold back my tears. I hate that Collin has already been through so much, and he still has so many challenges ahead of him. I'm sure he realizes that he's different from his peers, and I think he doesn't feel like he fits in. I hope that as time goes on, he'll make friends, and feel more confident in himself.