When you begin to slog through special needs parenting you often feel as if you need to do and go to as many theraputic opportunities presented to you. After all, a "good parent" wants to do what is in the best interest of their child. Just as much as you put little Janie in ballet and little Jeremey in karate to keep them well rounded.
When we brought Cary Lynn home she did't come with a manul, but she came with a lot of therapists:). She had Physical, Occupational, and Vision therapy. But there was one area that was lacking and that was feeding.
Cary Lynn drank from special bottles and had a tube in her nose (an ng tube) to help her eat. She had weak oral skills and was super tiny from being undernourished. It was strongly suggested that I start feeding therapy with her to help her eat. Being a new momma to this somewhat overwheliming bundle, I said sure, I'll sign her up!
But it wasn't that easy. There was a wait list. A long one. So I brought her in faithfully to afternoon weigh ins and nutrition counseling. What finally got me a slot was the NP seeing me put food in her bottle and Cary Lynn eating it. I honestly think it horrified her, but I told her she wasn't able to spoon feed. I got an immediate slot and started feeding therapy that week.
In the beginning it seemed to work. Cary Lynn was weaned off the baby bottle. Unfortunately, they put her on this:
But the problem is that Cary Lynn has sensory disorders that make her very sensitive to lots of things, including food. Her gag reflex is weak and add in the fact that she has CVI and can't always make out what she is being fed visually you have a recipe for disaster. Plus a wonky GI track.
It seemed like we'd get one problem solved and another would pop up. Over and over. She would get sick and loose weight, get constipated and loose weigh, decide that the planets were misaligned and loose weight. I just started to hate meal times, gatherings that involved food, and I was frustrated with feeding therapy. I mean weren't they supposed to fix this?? Things just kept getting in the way. I just felt like I was failing my baby girl. Over and over.
Cary Lynn got really sick last winter and as a result we introduced a new way of eating. The feeding tube or g-tube. It was and is a blessing and a curse all at once. Observe exhibit A:
So some days she eats this way:
What it all boiled down to is we came in once a week, Cary Lynn bit therapists, refused to eat, and threw up on them. Nice. Over and over. She also didn't respond to any motivation. Like music, bubbles, toys. So her therapist and I had a long overdue conversation. It was hard and we both cried. So for this season we are stepping back. Cary Lynn has been trying to tell us in every way possible that she just isn't ready for this. Don't get me wrong, we will continue to eat at home and I also will be learning more about a blederized diet for times when she just isn't able to eat orally.
I don't feel bad about it or guilty. What I DO feel bad about is that I kept doing this weekly just for the sake of doing it. That in itself is wrong. Cary Lynn can eat. When she wants to:). I mentioned stubborn right? But for now we are going to slow things down and take it at her pace. We're going to make eating fun and not a horrible task that must be completed daily. She has enough of those. This does not have to be one of them. My child will eat, but she will do it when she is ready, and that's the way it should be.