Getting Nowhere Quickly!

Susanne made Scott a hearty breakfast before he got on the road this morning. She also packed him a lunch to make sure he would have something to eat later. On Scott's way back to Pennsylvania, he had to make a pit stop in Maryland first. He had to go to court today to discuss the speeding ticket he had received a few weeks earlier. Scott was the only one in line to stand before the judge. This was nice because he was in and out of there in no time. The best part about the whole process was when the judge asked the officer if there was anything unusual or noteworthy about pulling Scott over. The officer replied only that Scott was so polite. This made everyone laugh including the judge. Susanne hoped that Scott had learned his lesson. She was also hoping that in the future he would remember the Padilla rule to always drive slow and safe.

Paxton had an appointment with the feeding team from Children's National Medical Center of D.C., but it was luckily scheduled at the Fairfax office. This was such a relief for Susanne because she did not have to drive all the way to D.C. and deal with the traffic like the last time. Susanne was hoping that this appointment would be the breakthrough that they both needed. She had been so upset with the regression of Paxton's oral motor skills over the last week. He had become so adverse to anything coming in and around his mouth that Susanne was limited to what she could do. She was basically doing little to nothing as far as oral feedings go. She did not want to push him too hard because that would only make things worse. She needed help in a desperate way. Susanne made sure to give the speech therapist a complete and thorough history. Susanne kept reiterating the importance of using a gentle approach with Paxton when it came to anything near his mouth. She repeated over and over her frustrations with the lack of assistance she had received thus far regarding his oral feedings. She felt helpless. After the speech therapist evaluated Paxton, she looked at Susanne and said that she was sorry that she could not help them. The doctor actually touched Susanne on the shoulder and told her good luck with everything. She wasn't sad or upset at this point, she was just straight up angry. Susanne could not believe that Paxton could be the only patient in the Northern Virginia/Washington D.C. area that needed this type of assistance. She also did not understand how, out of all of the specialists that he had been seeing, not one of them could find an appropriate person to refer them to. The only recommendation that she left with today was that they felt like Paxton needed to be seen by a gastroenterologist again. There was also some discussion about switching him from a NG tube to a G tube. This would require anesthesia because the tube goes through a small incision in the abdomen and then directly into the stomach instead of down through the nose. Susanne was not opposed to this idea, but she did not think that it was fair to jump directly to this decision because no one had consistently worked with him on oral feedings yet. Susanne was tired of driving all over creation to make an appointment with someone that was supposed to make things better, but leave the appointment with no more information than what she showed up with. She had left the house around 2:45 pm and arrived back home around 6:30 pm. This was getting ridiculous. She was hoping that her evening would be better. She would have to wait and see.