Celebrate the Little Victories

Paxton slept like a rock. This was good since he had such a rough time the night before. Susanne managed to get about five hours of sleep before she had to start the day. Paxton had an appointment at the hospital to get a blood sample taken to evaluate his electrolytes and organ function. This was important because he was on a diuretic medication that had potential side effects.

Susanne and Paxton left the house around 7:30 am. They were hoping that the appointment would be quick and painless. Unfortunately, this was not the case. Susanne signed in around 8:00 am and they didn't get called back until 10:00 am. Susanne took the opportunity to do some therapy with Paxton while they waited. For the first time, Paxton actually recognized his own hands and appeared to be really intrigued by them. He would extend them out in front of him and stare at his fingers. At one point, it looked like he was counting his fingers. He loved the book about trucks that Susanne read to him. He was fixated on the variety of colors that he could see. Susanne could tell that he was going to be a genius one day.

After watching another child run around the waiting room for two hours, it was finally Paxton's turn. He was so brave while his blood was being taken. He was talking to the nurse the whole time. The actual blood draw took less than five minutes. This was very frustrating that they had to wait as long as they did for something that took no time at all. It just didn't make sense.

They got back on the road to try to make it back in time for Paxton's therapy session. Susanne had to set up Paxton's NG feeding during the car ride home. Susanne was concerned that Paxton may not do well for his therapy session because he would not be hungry and he would be tired. Both of those things do not work in his favor when the purpose of today's session would be on oral feedings.
Paxton actually surprised everyone and exceeded their expectations. He was receptive to the facial touching and gum massage. He even allowed Susanne to squirt small amounts of milk in his mouth without gagging. The most impressive part of the session was the amount of swallowing Paxton was doing on his own. He seemed to have finally figured out how to manipulate his tongue and secretions on his own. He still had a long way to go, but this was a step in the right direction.

Today was Paxton's original occupational therapist's last day. She got a little emotional because she was sad to be leaving, but also from Paxton showing so much improvement. It was a very bittersweet moment. Susanne and Paxton would be forever grateful for the assistance she provided to the both of them. She played a critical role in getting this whole process started and encouraging Susanne and Paxton to keep on fighting. Marianne will be missed.

Susanne was so exhausted by the afternoon that she could not keep her eyes open. She decided to try to take a nap when Paxton went down for his. The second she closed her eyes, the phone rang. When she attempted to fall asleep for a second time, Paxton started to cry because he had a wet diaper. Susanne's third and final try was a success for about twenty minutes until the phone rang again. Didn't they all know it was siesta time.

Susanne cooked a dairy free, soy free chicken pot pie for dinner. It definitely hit the spot. Moppy arrived for the evening duty. Shortly thereafter, Susanne headed off to bed to prepare for a full day of work tomorrow.