ATTENTION! Delays Up Ahead.

Paxton had difficulty settling down last night. He had a sore throat from the endotracheal tube he had in place while he was under anesthesia. He also had a mild fever when they finally got home from the hospital, which luckily resolved after a dose of Tylenol. Poor guy didn't end up shutting his eyes until close to midnight. Susanne and Scott knew that he would be tired for his big day tomorrow and there was nothing they could do about it.

They waited as long as they could before having to wake Paxton up this morning. At the last minute, they got him dressed and ready to go. Today, he would be evaluated by the cardiac neurodevelopmental team. A psychologist would assess how developmentally delayed Paxton truly was. Susanne and Scott were hoping that he would be able to function long enough for them to get an appropriate idea of what he was capable of doing.

They arrived at the appointment and then they were immediately escorted to a room. The psychologist had spent the last few days familiarizing herself with Paxton's case and interpreting the test scores from the forms that Susanne and Scott were asked to fill out prior to this day. It seemed to help them feel like she already knew him a little bit.

After getting acquainted with Paxton, she started to test his gross motor, fine motor, and social skills. He started in Susanne's lap using a table as a surface to grab at items. As he got bored with that, she moved on to showing him pictures of two objects to see which drew his attention first. Unfortunately, he was going down hill quickly. They had to take mini breaks all throughout the session. They finally moved to the floor where Paxton was asked to do some work on a padded mat. The doctor observed him in propped sitting, supported sitting, rolling, and reaching for objects while on his back. He did well for most activities, but it was easy to tell he was out of steam. He would push through whatever he was asked to do, but then start yawning and rubbing his eyes shortly thereafter. He eventually started to shut his eyes through portions of his assessment. During those moments of rest, the psychologist would watch some of the videos that Susanne had previously made of her doing therapy with Paxton. Susanne was glad that she had thought ahead about there being a possibility of them not getting to evaluate him at his best. This was the next closest way to show them what was more typical for him on a good day. The psychologist was very thankful for the extra information. Later, Paxton sat in Scott's lap for some of the final tasks. He reached out really well for a green beaded necklace. He also tried to grab at a couple of cheerios that were place out in front of him. After that, he was finished. He had no more to give. He had done really well for being as tired as he was, having gone under anesthesia the day before, and the fact that the appointment lasted close to two and a half hours.

The final interpretation of Paxton's developmental status was disheartening, but not surprising. He scored extremely low on the different assessment tests indicating that his cognitive, language, and motor skills were severely delayed for his age. He was scoring close to a four month old level, which Scott and Susanne had previously been told. The psychologist felt like he had the capacity to learn, but she couldn't predict his future outcome. She reemphasized that Paxton was in the critical stage for learning and being pushed mentally. If they would be able to make any difference, the time was now. She was insistent on Paxton receiving more therapeutic services from not only an occupational therapist, but also physical therapist, speech therapist, and developmental pediatrician. She wanted these therapeutic supports to be intensified from what he was currently receiving. Her request was for Paxton to increase from having six hours of therapy per month to receiving ten hours of therapy per WEEK! Ideally, Paxton would have two therapy sessions per day, Monday through Friday. This would be in addition to any other appointments he would have with his other doctors. She understood the significant demands this would place on the entire family, especially Paxton, but she felt like it was his best chance for success down the road. Susanne and Scott were committed. They had been waiting for someone to advocate for Paxton this way for some time now. Susanne had mentioned her concerns multiple times in the past, but she never felt heard in the same way. The psychologist was serious with her recommendations and very heartfelt when she told them to call her if they encountered any problems with receiving the appropriate services that Paxton needed.

After a long morning and a long week thus far, they were ready for some fun. They decided to walk a few blocks to find a place to eat lunch. The sign that read, "5 Napkin Burger" immediately jumped out. They ate a delicious bacon cheddar burger with onion rings as their first reward for getting through the rigorous appointment schedule that they had had up until that point.

Once they were done, they decided to go on the DUCK tour through Boston. Scott and Susanne had previously done this adventure when they had visited their good friend, Aixa, years ago when she was in graduate school at Boston University. They had enjoyed it so much that they wanted to incorporate Paxton in all of the fun. Paxton had so much fun that he fell asleep through most of it. Even though he missed many of the landmarks of Boston, he did appreciate the cool breeze and being able to snuggle up in his mama's arms.

Afterwards, they walked to the Public Gardens. They were all exhausted, but the weather had turned out to be so beautiful that they couldn't pass it up. They sat in the grass and watched the ducks frolic in the water. They were amazed at how just a little sun brought everyone out to play. They had an excellent time together enjoying each other's company. It was such a nice change to be out of the hospital for once. The fresh air did their body good. It made them feel alive again.

The evening was spent catching up with one of Scott's friends from graduate school. He had just recently found out that she lived in the area so he wanted to visit with her if the opportunity presented itself. Luckily, it worked out perfectly. She picked all three of them up from the Yawkey house and took them across town to her apartment. They had a relaxing evening of pizza, beer, and watched the Bruins hockey game. It was a perfect way to end the day.

Next stop was bed to catch up on some zzz's before tomorrow's full schedule.