Wednesday, March 20, 2013

Trying to tread water

Things haven't been going well. Andy keeps having long periods of crying and discomfort that last for days. He has seen an Ear, Nose and Throat doctor, a general pediatrician, and a dentist. All to give me peace of mind that nothing is physically wrong. His ears look well, but we may have ear tubes put in, due to persistent infections. His dental x-rays came back normal. His current neurological medication, Risperdal, could be the culprit for his constipation/intestinal discomfort, but we aren't sure. It is supposed to help his inconsolable crying, but it may be creating other problems.

For his constipation, I am no longer giving him Miralax every day. It is too rough on his belly. I think it gives him bad stomach cramps, so I am going to cut it back. I was giving half a capful, once a day, during times of chronic constipation. I can lay him flat, and feel hard stool by touching his belly. Or sometimes it feels like there is a sack of hard marbles in his belly. If his belly feels soft, I am only giving the Miralax 3-4 times a week. And I am now only going to give 1/4 capful. If I can feel his belly filling up, I will increase the number of times a week, not the dosage.

When he is constipated, he cries and cries from the stomach pain. When it gets bad I give him a daily enema during (pediatric glycerin suppository), and a teaspoon of Karo syrup (high-fructose corn syrup), plus the Miralax. I cut out bananas and applesauce, which are the reverse of the BRAT diet. Bananas, rice and applesauce help to stop diarrhea. I have learned and read that they can make constipation worse, and I've witnessed it firsthand.

Andy has hit several downward spirals in the last couple of weeks. We are trying hard to get through every one of his waking hours. I have also grown weary of Andy's physical disabilities. He doesn't seem to be learning anything, no matter what the amount of therapy or schooling. Just keeping him happy and not crying is such a chore. I fear the next four years will be just like the last four. And that if he still isn't walking by age 8, that he may never walk. I continue to be depressed about Andy's condition, and find it hard to get through each day.

My daughter and I continue to fight, she has expressed how much she hates me, and tells me all the time how she wishes she could live with another family. It is only when she is angry, which is quite often lately. She hurt my feelings so badly, I cried all evening the other night. My husband talked with her to tried to straighten her out, and I can tell she tries to hold her tongue now.

It is so hard to try to live a normal life, when things are SO far from normal for us. It is very easy for people to tell us what we should be doing, but so hard for us to carry it all out. I continue to pray the rosary for strength and compassion. It seems to help.

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