Posted (Tina) in All Posts on May-28-2009

It was a mellow day with the Bun. We went on a walk again this morning to soak up the sun and take a glance around the neighborhood. Ella enjoyed the stroll as she kicked her legs with excitement.

I had a rough morning. Like I’ve mentioned before, sometimes the weight and gravity of Ella’s condition and everything surrounding it can get the best of me. I continue to strive forward but certain days are tougher than others.

The OT session was productive today. We discussed a completely different strategy for Ella’s feeding goals. Right now, we have been using a method of therapy that works on the tactile stimulation along with exposure to foods. Moving forward, we discussed only focusing on the tactile skills and leaving the foods for the future.

Apparently, tactile stimulation is connected closely with feeding skills (she needs those skills before she will really eat). The focus is to desensitize her hands, feet, mouth and lips using various exercises. Currently, we are using dry objects: pinto beans, rice, feathers, beads, etc. We need her to enjoy having things in her hands and around her mouth. Once those go well, we will move to having her play with foods: cooked pasta, whipped cream, jello, baby food, etc. Ideally she would then take the foods she is playing with and explore putting them in her mouth. This way, putting the food in her mouth is on her terms.

This new plan is good for Ella because the feeding sessions are mostly meltdown sessions. She gets so upset with us trying to “force” her to eat foods. With tactile stimulation, it is more like play time with her toys so the stress level is not nearly as high plus it still moves us towards our goal of feeding. It is a good plan for me because the feeding therapy sessions are stressful for me. It is hard enough having to give her a bath and brush teeth much less trying to put food on her lips and in her mouth. I don’t enjoy doing things that make Ella melt down, cry hard and require more oxygen as she is turning blue. Emotionally, these types of instances wear me out during the day. Finally, it is a good move for the occupational therapist too. She wants to be more hands on with Ella but has had limited opportunities. Initially, Ella didn’t know her well enough or trust her. Focusing on the tactile stimulation exercises will give the OT a chance to progress with her relationship with Ella. For once, they will do something together that is fun! This trust will help us to progress to the next steps.

I’m excited to try this new strategy. We came to this plan in the middle of the session today and promptly walked upstairs and started in with the new routine. So far, it was working. Ella was having a good time with her therapist while doing the exercises. Bummer that I did not have the camera present!

I did have the camera present for the PT session, as usual. It did not go as well as yesterday’s session, but was still productive. Ella worked hard!

This afternoon, I had cabin fever so I took Ella on an errand this afternoon. She loved it – got very happy and smiley. It is a lot of work to take her places with all her various pieces of equipment, especially solo, but her excitement makes it all worth it!

I love how Ella grabs her hands and puts them together. Often times, she just sits and stares at them. When we were visiting a close friend last week, she pondered, “I wonder what little Ella is going to do with those hands”. It certainly does make you wonder as she sits and looks at them grasped together. One thing is for sure, it will be fun to see how that part of her story unfolds.