The past month has had its really good days & it’s days where I just want to hide under the covers. It’s hearing of the dreaded tummy pains that come and go. Lego has complained of them off and on over the last couple of years and I always attributed it to a tummy bug of some kind. For the most part, there were physical symptoms so it was easy to see that there was something going on, but it always seemed to pass.
Over this last year though something has changed. Lego mentions it almost daily now. And sometimes its really hard to tell if he is saying it because he doesn’t feel like doing something, or if it really is hurting him. We have tried using a pain scale but the concept of it is too abstract for him. Last week he was saying he was at a 10 which is really severe pain, but yet he was sitting on the couch smiling at the screen on his iPad because obviously his game was going well. Then there was another time when he said he was at a 4 and he was curled up in a ball, his face white as a ghost and not moving or saying much. I can’t take this guessing game anymore. I hate seeing my sweet Lego like this.
Last month I took him to our family doctor, who ordered all the regular tests they could run, as well as an ultrasound and a barium swallow. The regular tests came back with nothing, and so did the ultrasound. So I was sure that we would find something with the barium swallow.
Let me tell you, this is not easy for a kid that does not like certain textures of foods and liquids. If you don’t know what it is here is a quick run down. You have to fast before going in for the test – which is not easy for a kid that likes to eat the second he wakes up. Then when they bring you in, they make you drink a liquid that makes you very gassy and burp a lot. As soon as you get that down, they make you drink this very thick awful tasting paste and you have to get it down as quickly as you can. While you are drinking it they are taking x-rays and can see it as it slides down your throat. Then they lay you down and take a bunch of x-rays while you roll around like you can’t get comfortable. The test its self only lasts about 10 minutes but as Lego said that seemed like a long test. He said he could taste the paste the rest of the day. And now for the hardest part we wait.
I hate waiting. It means stressing out for answers that we may not get anyway. What happens if the doctors don’t find anything this time? Where do we go from here? I know a little bit about what comes next and to be honest I’m not sure I will put Lego through that for right now. Talking with one of the most amazing ladies in our network – and trust me there are so many I now know, she is going to get me in touch with someone in our Network, that also has a child with FASD who struggles with abdominal pains. I know this can be part of the trauma from what my drinking while pregnant caused. The guilt is still there. And I know I shouldn’t feel guilty but I do. As a mother, I am supposed to protect my child but some days I feel like I failed him. Maybe this is why I have always seemed to fight harder for answers for him. So for now, I am going to keep looking for ways to help him so that he can have more good days than bad. What is around the bend remains to be seen, but I will not give up. For him. He deserves everything I can do for him to help make each day just a little better.