Cut Me Some Slack

Paxton didn't officially settle down until after 1:00am. He was up a couple of times after that on and off. Early this morning, Susanne resorted to sticking him in his bouncer to see if he would sleep better sitting upright. It seemed to help because he immediately passed out. Susanne assumed that it helped him to breathe a little better. It was such a relief that he would actually be able to get some rest. Susanne was willing to do whatever was necessary to make him more comfortable.

A new nurse showed up today to watch Paxton. Susanne spent the morning having the nurse observe her going through Paxton's routine. She was impressed with how quickly the nurse picked up on the skills needed to take care of him. She realized the importance of having people with experience working with him. He had such specific needs that required attention to detail. Having someone that paid extra attention to those little intricacies made Susanne very happy and made her feel more comfortable with leaving Paxton in their care.

Paxton had therapy at 11:00am this morning, which was not normal for a Saturday. The therapist offered to squeeze them in on a weekend since she had to cancel an appointment later in the month. She didn't want Paxton to miss out on one of his six sessions he was allowed per month because she knew how much he needed them. She realized that it would be difficult to try to reschedule for another day during the week because Susanne and Paxton were infrequently in the area. Also, the fact that they would be gone the entire last week of April for a week full of follow-up appointments for Paxton in Boston complicated matters. Susanne was extremely appreciative of her sacrifice.

Paxton slept right up until the time of his appointment. Susanne hated to wake him up, but it was a must. They started the session teaching the new nurse different techniques she could work on with Paxton. Susanne wanted to ensure that when she wasn't available to force him to work and gain strength that he was getting it from someone else. Even though it wouldn't be as extensive as what Susanne could do, it would be something and something was better than nothing. After the nurse was shown a few things, they moved on. They decided to avoid any oral feeding because of the difficulties they had yesterday. They started to realize that maybe it wasn't because he was stubborn, but more so because he wasn't feeling well. Paxton was congested, stuffy, and feeling under the weather. Susanne predicted that this was a recipe for disaster. If he was already averse to anything in his mouth, then the fact that he was unable to breathe well would complicate things for sure. At the end of the therapy session, they knew they had made the appropriate decision. Paxton still stepped up to the plate and did relatively well for the condition he was in.

Susanne noticed a new habit of Paxton's today. He had started to grind his teeth at random times. This was like nails on a chalkboard for Susanne, but there was no way to stop him from doing it. It made her spine tingle and her ears cringe. She was hoping this new found behavior didn't last long.

Throughout the rest of the day, Susanne gave Paxton some extra TLC. She knew he wasn't feeling well and needed his mother's love. Snuggles, kisses, cuddles, and hugs were on the menu for the day.