Seamus has been so mobile lately that I have moments of almost wanting him to stay a baby. I think, "This is so hard chasing after him and it's only going to get harder. What happens when he RUNS down the hallway?" But then I remember what it would mean to not have him grow and move as he should. And I certainly don't want that. I'd give anything for Eve to be able to run away from me. Anything. So, I just think of that when I am exhausted from chasing after Seamus and redirecting his attention away from the dog bowl/bone/lint/radiator/etc.
Speaking of Eve, we've had a rough time lately. She's physically healthy, but really struggling with anxiety and (we suspect) discomfort.
First, bathtime is a nightmare. She is so very scared, she screams during the entire bath. It appears that she doesn't feel secure and thinks she is falling. No amount of talking or comfort does any good. So, we talked to her doctor and started her on a short acting anxiety medicine. The good news is that it worked. She still doesn't like her baths, but she doesn't scream or flail her arms out as if she's falling. The bad news is that she has trouble eating when she's on the medicine. Jim think that about 25% of the food we put in her mouth actually makes it to her stomach. The rest falls out. So, that obviously is not working. I took Eve to her pediatrician on Monday and we talked about this. We've decided to start a daily anxiety medicine which we think will help with baths as well as other areas of her life (she really struggles with gym class - perhaps it's the noise). She's a pretty fearful kid. However, it takes about 2-3 weeks for the medicine to take effect. We're hoping to have the dosage right prior to our trip the Boston for her annual mito specialist appointment.
Second, Eve has been struggling at night lately. Lots of tears and screaming at bedtime and throughout the night. Sunday was particularly bad. It was warm, so she may not have been comfortable to start. When we would go into her room to calm her, she was completely tense with her rear end jacked up in the air, her toes clenched, and her arms pulled in with hands in fists. I don't know if it was her muscles or her hips. I'm really looking forward to the Physiatrist's appointment in Boston to see what he has to add. In the meantime, the pediatrician checked with the neuro and we've increased her baclofen at night to help with her muscle spasticity. The past few nights have been better. I'm hopeful that we get a lot of this straightened out soon.
