I have a Mommy Confession. I’m putting it out there for the whole world to see. Well okay, I know I don’t have much of a following, but since this post will be on the internet the whole world will be able to read what I write. I am guilty of doing too much for my child. I don’t let her be independent enough.
I guess most moms do this. Especially moms of children with special needs children. Sometimes we do this because it is easier. Sometimes because we want to shelter our children. In this case I was taking the easy route.
I have still been feeding Rebecca. I know she CAN bring a loaded spoon to her mouth. In fact, I know they work on this at school. So why at home do I do it for her? Uhh – it’s easier. In fact Rebecca and I usually share the same plate at a meal. It is how I got to eat a hot meal. The fact is, she still needs assistance to eat.
Around the time she went back to school after her Christmas break I had noticed a sharp decline in how much she wanted to eat at meals. Anyone who knows Rebecca knows she loves food. Eating is one challenge we have never had with her. I think she would eat until she made herself sick if we let her. There is no full for this child. And yet if you look at her, she is a small little thing. Seizures are one mega calorie burner. I don’t recommend it though. Anyhow one night after becoming quite frustrated with her not wanting to eat it dawned on me, and I handed her the spoon. She grabbed it and shoveled the food into her mouth, again and again. Mommy ah-ha moment. She didn’t want to be fed anymore. She wanted to feed herself. She was BORED at mealtime. I felt so bad. So since then I’ve been letting her feed. I load the spoon, or some meals we work on her loading the spoon. Oatmeal works well for that. Other foods not so much.
So that folks – in a nutshell is my mommy fail moment. I was doing to much for my little girl. The seizure monster has taken so much from her, but she is still a very strong-willed child. She always has been in fact. I’ve said for years she was born a teenager. She just has that attitude inside her. Which any parent knows can be very tiresome at times. However it serves her well when it comes to developing despite the seizures she has.
On that note – seizures aren’t doing bad. We did hit a harder patch for a couple of weeks, where numbers were a bit higher. Nothing too bad. Nothing to get shocked about. But overall it has been much better. We’ve seen a pattern of somewhat decent, then trending down, which requires diastat, then it levels back out. Its her little roller coaster. Last Thursday (that would be the 5th), we met with Dr. Mikati again. He decided to switch her Clonazepam (aka Klonopin) to the new Clobazam (aka Onfi). This is the new drug that has been available in Canada for a long time and is recently FDA approved for kids with Rebecca’s exact seizure disorder. How awesome is that. A drug JUST for her! It took a week for the pharmacy to be able to get it in. The drug is THAT newly available for use. I think something like available to pharmacies as of the very end of December or the start of January. So Becca will start the switch tomorrow morning. It will be a slow switch. Please pray with me that this works for her. We are mainly looking at better control of those nasty head drops.