I know, I know. It has been a long time. I have every intention of one day catching the blog up. I want to do that not for me but for the kids. Anywho... I wanted to do a quick blog on our weekend before I forgot everything.
Thursday morning Bailey went to the feeding clinic. This would be the clinic that everyone asks if we are seeing when I mention Bailey doesn't eat and the lack of help we have received. The clinic that sees Bailey every 6 months. Yeah right! They can really help us when we only see them 2x a year. Last time they recommended we feed her oatmeal and transition her to a "sippy" type cup. Well it didn't take but a few days and I knew the oatmeal was a no go. In order to drink out of a cup you have to have the strength and the desire to do this. They knew I was frustrated from the last visit so this time they listened to what we needed. I didn't need false hope and bull crap. I haven't met one person that knows what to really do for Bailey. She doesn't understand how to chew and swallow, and I believe she is not cognitively at the level where you can teach her. I wanted them to give me ideas on something different to feed her. She also hasn't gained any weight. I lay that one at their feet. They are the ones that said to stop adding duocal to her food and milk. Now they want her to gain weight. Sigh....
So after discussing our options we will start blending table food. This will help with calories also. Currently she only gets about 850-900 calories a day. They want her to get 1300. You probably wonder why we didn't do this before. Well, we did try a few things before (spinach, sweet potato, and chicken), and she hated it. Now I haven't done it because.... well frankly it makes me feel like we are giving up on her.... giving up on her ever eating solid food. I really don't know why I feel like this. I am trying to get over this feeling. Baby food isn't enough calories so we must go to the next step. So Bailey has had a weekend packed full of firsts. She has been a real trooper. She is hesitant with new things, but she hasn't totally refused anything. Here is a list of things she ate this weekend:
Friday: shrimp al a creme from the Cajun restaurant
Saturday: pancakes with syrup, brownie bites, and macaroni and cheese with chicken fingers
Sunday: glazed donut, bean chowder, and beef stew with potatoes and carrots
I pray that one day this will all just feel like a horrible dream. I pray she will learn to eat and that we are making the right choices.
1 comment:
Our local feeding team wasn't helpful either. They see kids 4 times a year, which also is not helpful in my opinion (not often enough). I can't speak to Bailey's cognitive skills, but I will say that almost ALL of Dr. Williams' patients have some sort of cognitive/developmental issue. Ian was one of the few who didn't. Many of his patients are a lot older than Bailey and still aren't toilet trained, etc. As for the blender, we used the Magic Bullet for months. Dr. Williams said to start out with really pureed food and then over time gradually blend it a little less and less (to increase the texture) until eventually we moved to fork mashed food in April and then thankfully in May I packed up the Magic Bullet. I hope the same happens with Miss Bailey. At least she doesn't have lots of food allergies. We are so restricted in what we can feed Ian - mostly fruits and veggies.
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