How do you know when you are making the right choices for your children? I don’t question this with just Benjamin, but my decisions for Benjamin have little research and I don’t have many people to learn from their experiences. Benjamin sees five therapists, six physicians, he is on multiple supplements to increase strength and energy, and follows up with activities at home. But is it enough? Is it too much? Is there something I am missing? Are the supplements too much or too little? I completely accept Benjamin’s diagnosis, but considering Benjamin is one of the most severe children with his diagnosis that are still living, I can’t help but think I am doing something wrong. Maybe he is still alive because of what we do. I have to continue to think this way.
Since the week after Benjamin was discharged from the hospital in August, he has plateaued some with his physical activity including swallowing and smiling. Before admit, Benjamin’s therapists were making comments about how every week he looks better and stronger, but now I feel like there are a lot of comments about Benjamin being tired or disinterested. Maybe so, but there must be something I can do. If I continue to try to find toys to grasp his attention, we will start to look like Toys-R-Us. Over the past month, Benjamin has had a slightly fuller fontanelle (soft spot), an increase in head size, and overall less movement. When taken initially to pediatrician, tests were run, changes were made in blood pressure medication, but there were no significant changes in activity. Another doctor was brought in to see Benjamin and she asked me, “So you are concerned because he his fussy?” No ma’am, do you think fussiness would worry me at this point? So tomorrow, we will return back to the pediatrician for further assessment. They may think I am crazy, but I am not leaving without a few tests run.
Something that is progressing well is the length of Benjamin’s hair. Yesterday, Benjamin had his second hair cut… on his 8 month birthday. Is it silly that I am already mentally planning for his one-year old birthday party? Of course not, it’s going to be a big one. 🙂