We have seen a lot of great changes in Kailey in the past 6 months.
- been potty trained
- improved her communication and speech
- developed relationships
and we have:
- found the right medication combination
- worked closely with her doctors
- gained more patience
But with all of the changes, now we are finding that in some areas she is regressing. This last month she has been using the words yucky and dirty. We find that she uses these words in the area that she is regressing. A good example would be using the potty. She was doing so well with this the last few months. But about a month ago, she started telling us she didn’t want to use the potty because it was yucky or dirty. She has started peeing in her panties. Peeing in her panties means that she pees on our floors. This has become very frustrating. We use “night time panties” (night time pull ups) at night, but keep her in her regular panties during the day. When we get busy and are on the go a lot, we put the night time panties on her because she struggles with using the bathrooms in public. For a while we were very busy and she was wearing the night time panties 24 hours a day. When all this stopped, we went back to using her regular panties. Sometimes she will go to the potty but most of the time she won’t.
Another issue we are struggling with is baths. Kailey used to love baths. It was always her favorite thing. Here recently she has been crying and fighting it. She keeps telling us that the bath is yucky and dirty. We have three cats and if there is one cat hair in the bath tub, she literally freaks out. We have started cleaning the bath tub before her bath but this hasn’t helped. When she won’t get in the bath, we are forced to give her a shower. She screams through the whole thing and fights us. But this is the only way we can get her clean and wash her hair safely.
When we got all the medication under control, we noticed that Kailey started eating better. She was eating more variety and eating things we could never get her to eat before. But with these new food choices comes new textures. She has never had issues with textures before. She has struggled with jagging (eating the same thing for every meal, all day long for days and months). When she attended feeding therapy she never had issues with textures. Now she seems to be more aware of them. While my niece was here, she introduced her to peanut butter and Kailey wanted a peanut butter and jelly sandwich every day for lunch. One day this past week the peanut butter got stuck on the roof of her mouth and she started to throw up. She has starting choking on various foods and throwing up more lately. Because of this, she doesn’t want to eat at home. She will eat snacks but not meals. She has no problem eating a hamburger from McDonalds in the car but not at home. Each day is different. Some day’s she will eat, some days she won’t. On top of that she has started telling us that Milk is yucky and she doesn’t want it. She will scream if I try to give it to her. But a few minutes later she will ask for it.
All this is new to us and very confusing. We have been told that as she grows we will see various new issues but to actually have a so many changes at one time can be overwhelming. I wish we could make sense of it all, but for now, we will take it one step at a time. Just like we have everything else that has come up. Of course prayer is always helpful too.
I would welcome any recommendations, advice or help you can offer.