*Running on Empty

Paxton had a visit this morning from one of his nurses to assess his progress from last week. She was particularly interested to see if he had gained any weight from last week. Also, he had been having issues with some dependent edema. Basically, the side of his face that was down when he was sleeping would accumulate fluid and appear swollen especially around that eye. Once he was up and moving around, it would resolve. Susanne still felt like it was present despite the minor increase in the diuretic. She would let the nurse decide if she thought that it was concerning.

Paxton's vital signs all looked good. Susanne was pleased that his heart rate continued to be within the normal range. The best news was that he had gained weight from last Friday. Today, he was 15lbs 12oz which was four ounces more than what he weighed four days ago. This was relieving because of the scare of his recent weight loss. The increase in his feedings must have helped.

Once the nurse had left, Paxton was completely exhausted. He didn't really get to take his normal morning nap like he was used to. After Susanne put him down, she made some much needed phone calls to try to figure out the answers to her ongoing questions about transition of care for Paxton once they officially moved from Virginia to North Carolina. She had a lot of unanswered questions that both she and Scott had been looking into for weeks now. They kept discovering that nothing was straightforward. This moving process would be much tougher than they had originally suspected.

Paxton's occupational therapist showed up in the afternoon for a therapy session. Today, they worked on motor skills. Paxton had been up for about an hour prior to when she arrived, but Susanne had purposely kept his activity level to a minimum so he wouldn't be exhausted. Unfortunately, he could hardly function the entire time the therapist was there. During tummy time, his face was smothered in the wedge because he didn't have enough energy to lift his head up. He wouldn't attempt to try to sit up even with assistance. He wouldn't even bat at the toys while laying on his play gym. He would lean back on the therapist for support. He kept rubbing his face and moving his head back and forth. These were classic signs for Paxton that he was overtired. He grumbled and grunted. He sat and stared. They were getting nowhere. The therapist said that all patients have better days than others. They decided to cut him some slack today. Susanne put him in his crib and within minutes he was knocked out.

While Paxton rested up, Susanne steamed and pureed different fresh fruits and vegetables to have on hand to use for her daily feeding sessions with the little guy. So far, he had tried bananas, apples, sweet potatoes, and butternut squash. The next item she would offer him would be pears. After tasting the fresh pear puree that she had made, she was confident it would be a big hit. It was actually her favorite so far. Paxton was still not technically eating anything. He would allow her to put a small amount of food in his mouth and when he had no other choice...he would swallow it. Usually it would take a few minutes for him to clear his mouth of the food. As long as he was still receptive to taking it, she was happy. Hopefully, over time he would get the hang of it and retrain his brain to learn how to chew and swallow.