No Drive Zone

Susanne was thankful that today she didn't have to travel back to Virginia. It was nice to finally catch a break from all of the back and forth. She didn't regret living out of a suitcase one single moment, as long as it was still the best thing for Paxton. She knew he still benefited from seeing the same pediatrician, cardiologist, and therapist that had been with him from the beginning. There was a lot to be said about knowing Paxton and his medical history through and through. Susanne knew that with any new doctor, it would take a very long time for them to even scratch the surface of what Paxton had been through and what he needed. At this time, Susanne was not willing to risk any kink in the chain. She had worked too hard to get to where they were at these days regarding Paxton's care. She wasn't sure about a lot of things, but she was certain that she wasn't ready to start her search all over quite yet.

Milestone of the day: Paxton's other incisor is becoming visible.

Live In the Moment

Susanne had a moment of clarity today. She took time to remember that right now was all that anyone had. There was a lot of time wasted worrying about the "what ifs" and the "what might have beens" of life, but that was useless. She knew that it was critical to live in the moment. Not the past, not the future, but the now. The reason was that no one could change what had already happened and no one could be certain of what was yet to come, but one could control their thoughts and actions of the present. It was so important to focus on what was right in front of you and to never take for granted what you had. It was so easy to get caught up in what was wrong with the world instead of the blessings before your eyes. She wanted to strive to be an eternal optimist. She wanted to continually celebrate the fact that Paxton was having more good days than bad. There was so much to look forward to and she was excited. Life was truly worth fighting for...she just need a reminder from time to time.

Mystery Pain

Even though Paxton and Susanne got in late last night, Paxton didn't sleep well. He was even up before Susanne's alarm clock to get ready for work, which was unusual. Susanne was startled by Paxton's cry from the other room. It was the loudest, most distressful sound she had ever heard him make. She popped right up out of bed to see what was going on. She thought he had to be hurt or maybe even fell out of his crib somehow. When she checked on him, he still had his eyes closed. It was like he was having a night terror or something. She couldn't figure out if he had refluxed causing a burning sensation in his esophagus or was it an upset stomach from gas that had built up. She first woke him up so that he could come to and realize that his mommy was right there for him. She tried singing, talking sweetly, rubbing his back, burping him, rocking him, but nothing worked. She had to call for help because she had no access to anything that she needed and Paxton was still connected to his feeding. Scott eventually heard her and came to the rescue. He brought the supplies in for venting his G-tube to relieve any gas that had built up from him swallowing air. After that didn't provide any relief, she tried a combo of Little Noses drops followed by suctioning out his nasal passages. Still no response. They couldn't rule out the possibility of it being pain from teething, but that would be odd since he hadn't been like this before. Susanne and Scott just had to wait it out. Paxton eventually ran out of steam and fell back asleep. They would probably never figure out the mystery, but they were just glad that he was peaceful again. They couldn't think of anything they hated more in the world than their sweet angel in pain.

What A Difference A Year Makes!

Susanne woke up this morning remembering what a blessing Paxton was in her life. It had been one year ago exactly, that he got to come home from the hospital for the first time. Susanne reflected back on those memories and smiled. They had all come such a long way and she was so proud. Paxton had reminded her daily to push herself beyond what she thought she was capable of. He reminded her to fight even if there was no fight left. He reminded her to celebrate the small things and keep focused on what is truly most important. Paxton was a true inspiration of faith, hope, love, and perseverance.

Susanne had to change Paxton only once overnight. Thankfully, she caught it before he made a mess. He ended up sleeping until 9:00am, which gave Susanne hope that he would be wide awake for therapy this morning. She reemphasized to Paxton the importance of him not making a mess this morning since she had run out of laundry detergent yesterday. She was certain he understood the three simple rules, which included, 1. No peeing anywhere, but in his diaper, 2. No pooping anywhere, but in his diaper, and 3. No vomiting or spitting up of any kind. Things weren't looking too good when Susanne changed six diapers within one hour. He had managed to keep all of his pee within his diaper, as previously requested, until he thought it would be cute to pee on his mommy. He managed to keep all of his poop within his diaper, as previously requested, until it smushed out of the sides onto his outfit, crib sheet, and mattress pad. Susanne decided that she would just have to bring the huge pile of dirty laundry with her to Gigi and Poppy's house for operation clean-up.

Before they could head back to NC, Paxton had a therapy session scheduled that morning. The therapist brought something new for Paxton to play with today. She had a tupperware full of different types of pasta, popcorn kernels, and colorful toys. She first had him in a sitting position and encouraged him to grab at the different textured objects with his hands. He really seemed interested and would rake and grab at the items. After he was allowed to do this for a while, she moved on to placing his feet in the bin. He seemed less thrilled with this task. It was almost like he was trying to avoid that unpleasant touch experience. This activity was supposed to help with the sensory input to his brain and make him less sensitive to the things around him. The goal was to work on sensory integration, which refers to how information provided by all of his senses are used by his brain to comprehend his surroundings. Hopefully with more time, he would become more and more comfortable with it.

Susanne and Paxton's therapist worked on tummy time, propped sitting, and rolling with Paxton. He always did best with tummy time on his exercise ball because it wasn't as strenuous for him. He was pretty exhausted after working so hard. He really did a great job today.

Susanne tried to put him down for a nap while she finished up things she needed to get done around the house before they headed out. Even though she knew he was tired, Paxton was not feeling it. She ended up setting him up on his playgym to hang out while she finished getting everything ready to go. It took her over four hours to get to a point where she felt like she could leave. The process seemed to continue to get more and more involved. She had to empty trashcans, clean bottles, clean dirty dishes, scoop cat litter, fill cat feeder, sweep the floor, fold dry laundry, pack the car, prepare formula, set up continuous feeding for the drive, pack medications, pump, and so on. Paxton was doing great entertaining himself until Susanne heard him from the other room. He decided it was a good idea to continue the trend of rule breaking and end with one unpredicted bout of spit up that landed everywhere, including in the center of his third outfit of the day. Just as Susanne got him squared away, he passed out in the middle of the floor. He got about an hour of sleep before Susanne loaded him in his car seat. It wasn't until around 4:30pm before they were on their way. Susanne prayed to the traffic Gods that they wouldn't run into the rush hour mayhem.

A Day Full of Surprises

Today Paxton's nurse was supposed to arrive around 8:30am to watch him all day. Susanne had a surprise baby shower to be at across town by noon. Luckily, Scott was able to help a little bit with Paxton's care so that Susanne could still try to be on time.

Susanne called a couple of times with no response. She finally reached the nurse at 9:30am to learn that he was out of town. He had thought that Susanne had mentioned at the last visit that she didn't need him on this day so he made other plans. Susanne was confused about where the miscommunication had occurred, but there was no reason to dwell on what she couldn't change.

She tried calling Moppy to see if she could watch the little guy, but she couldn't be reached. Susanne knew she was probably in church and would be hard pressed to make it over to the house in time anyway. She had thought about asking Scott to hang around before heading back to NC, but she knew that she would be out for hours and that wasn't really fair. He had a six hour drive ahead of him and he worked the next day.

She finally came to the conclusion that she needed to take Paxton with her. She hoped that he would crash the party. Her gut was telling her that all of her friends would actually be delighted that he was there. The majority of them required a Paxton fill regularly and this would cure them all.

Susanne had her work cut out for her. She had to take time to prepare and pack two feedings, medications, enteral pump, enteral bag, charger, fully loaded diaper bag, cooler with ice packs, toys, blanket, change of clothes, carseat, stroller, and the kitchen sink. She was hoping in the midst of packing up all of his stuff that she didn't forget the baby gift or camera.

Luckily, she made it out of the house alive. She wasn't sure she would make it on time though. She hated the thought of being the person to ruin a surprise. She kept in close contact with the hostess of the party to prevent this from happening. Even with getting lost and turned around a couple of times, she made it before the woman of the hour. She was thankful that Julie was running behind as well because they all got to walk in together.

The baby shower went well. Everyone got there on time and Cory was surprised. There was lots of good food, fun games, great gifts, and fabulous company. The one thing that occurred as a result of the party was that there was major baby fever spreading throughout the room by the end of it. Crazy as it sounds, every single woman that had previously had a child, wished that they could be pregnant all over again. They hadn't really thought it through very much, they were just running on straight nostalgia.

One weird occurrence that happened at the shower was that one of Susanne's friends got almost the same identical gift that she had purchased for Cory. Originally, Susanne thought that it was just a mere coincidence that she saw the exact same gift bag in the pile of presents when she arrived. When Cory started opening that gift and pulling out the exact same receiving blankets, cute outfits, etc., Susanne surely thought she was being punked. This was just too strange for words. Thank God for gift receipts.

Susanne and Paxton got on the road at a decent hour. She thought for sure things would be smooth sailing from here. She definitely spoke too soon because she ended up getting lost on the way home as well. She vowed never to take 495 again. They just weren't destined to get along.

Paxton had done extremely well all afternoon, but things changed quickly once they got home. Just as Susanne was trying to get Paxton out of his car seat, he spit up all over himself and managed to get her in the process as well. It wouldn't have been such a big deal if it hadn't also showered the entire car seat lining, car seat straps, and buckle. It was always such a big production to disassemble that monster. Susanne was nervous when she used the last bit of laundry detergent to wash all of the dirtied items. It was asking a lot of Paxton not to make a mess before getting to Gigi and Poppy's house tomorrow night. She would just have to keep her fingers crossed.

Paxton needed a bath pronto! It would not only make him smell better, but hopefully help him to get settled for the night. Aunt Leenie came over for a visit and was thrilled that this wasn't the case. Paxton was trying hard not to close his eyes. He was restless and talkative. This was the perfect scenario for Aunt Leenie to be able to spend some time with the monkey. She got to hold him for a while and play with him a little bit. Once he finally fell asleep, they spent the rest of the night having a heart to heart. They got so carried away in conversation that they didn't even eat dinner until 10:00pm.

Do Over

Paxton was truly sleep deprived from yesterday. He went to sleep around 6:30pm last night and didn't wake up until after 8:00am. He managed to sleep straight through the set up and breakdown of his feedings, medications being given, and diaper changes. Nothing phased the tired fellow.

Susanne spent the morning playing with Paxton and incorporating little bits of therapy here and there. She would be flying solo for most of today because Scott had traveled to Pennsylvania yesterday to visit with some of his old co-workers from his internship.

Susanne invited Julie over so that Paxton and his best friend Caleb could have a do over. The first time they had ever met, Caleb was not too thrilled and it scared Paxton. They both ended up crying. They were both hoping for a much smoother introduction this time.

They decided to enjoy the nice weather outside and go for a long walk with the boys. Caleb was bundled up in a cute hat, mittens, and toasty blanket while Paxton had just a receiving blanket covering him. Susanne was still shocked at how easily overheated Paxton got. She, for sure, was the complete opposite. They both tried to put baby sunglasses on them to protect their eyes, but they stayed on less than two minutes. Both of them seemed more aggravated with them on, then the sun shining in their eyes. They were hoping they would outgrow this at some point because it would really help protect them from the harmful rays and they made them look super cute.

After their walk, Caleb and Paxton got to have some face to face time. They definitely enjoyed each other's company a lot more this time. There were even a few smiles here and there. Susanne and Julie knew that this was the beginning of a wonderful friendship.

Scott returned home just in time to get ready for their evening plans. Scott and Susanne were going to meet some friends out for dinner and drinks while Moppy watched the bug. Moppy loved getting alone time with her sweet grandson. She chomped at the bit to see him anytime she could especially since they spent most of their time in NC these days.

She was delighted to see that he had grown so much and that he was making little bits of progress everyday.

Trust and Hope With a Side of Wait and See

One could probably guess how Paxton's morning went. He woke up gagging, so Susanne went to comfort him and try to get him settled down. It was always a race to see how quickly she could make it into his bedroom to try to prevent a volcano of vomit. Even though he was older and able to swallow a little bit better, she still worried about hm aspirating.

Once he was settled, she set Paxton up in his bouncer to allow gravity to help settle his stomach while she prepared his first bolus feeding of the day. The second she got downstairs, she heard him gagging again. By the time she reached him, Scott had come to the rescue. This was just another reason why it was nice to be together as a family again.

Susanne and Scott both had things on their schedule for this morning. While they were getting ready for the day, Paxton played quietly by himself. Susanne was hoping he would save up all of his energy for therapy.

Today they worked on oral motor development. Susanne and the therapist were thrilled that he was still taking a liking to the oral swabs. It not only encouraged a great suckle response, but also it provided him with little drips of water that forced him to practice swallowing.

After they warmed up, they moved on to offering a variety of food. The apples were the thinest in consistency, followed by the peaches, and ending with the thickest option which was peas. Paxton used to do the best with organizing and swallowing the thinner pureed foods, but now he seemed to do better with the thicker options. When Susanne offered him the apples, it prompted an immediate gag followed by vomiting. Once he recovered and regrouped, she moved on to the peaches. This also prompted a gag response followed by vomiting. Finally, she tried the peas. He handled a few tiny spoonfuls well, but still took a long time to organize in his head what to do with it. They didn't want to push him over the edge, so they stopped the session early. He was definitely tired by the end of it. It didn't help him out either that he didn't take his usual morning nap. He was yawning, head thrashing, and crying by the end of it all. Susanne knew she needed to put him right to bed because he had a full afternoon.

He ended up napping for about an hour before Susanne had to wake him up to head to his cardiology appointment. Paxton's usual cardiologist was unavailable, so he had to be seen by someone else in that practice. Susanne chose someone that had previously met Paxton a few times and knew his case well. She picked the doctor that she remembered really liking from Paxton's stint in the NICU. He stood out to her because he really took interest in her profession, but even more so in Boxers. He owned a few Boxers of his own. They had previously had multiple conversations revolving around this wonderful breed. She didn't know if this was the right approach to choosing the next best person to evaluate Paxton, but she at least felt like she knew him personally and trusted him with Paxton's care. This, to her, was most important when making such a decision. She believed in a strong doctor-patient-parent relationship. John Maxwell said it best when stating, "People don't care how much you know until they know how much you care". Moral of the story, trust goes a long way.

Paxton weighed 20lbs 2oz today. Even though he still remained in the less than fifth percentile category for his age, he was at least still gaining weight. After doing a complete physical exam, the cardiologist thought that Paxton looked great. He was impressed with his oxygen saturation levels, his skin color, and capillary refill time. He requested an echocardiogram of his heart to just ensure that everything was looking as good internally. He had just had an ultrasound done a little over a month ago at Children's Hospital Boston, but supposedly that is a long time in their world. The doctor's hope was that he would find evidence that the right ventricle had begun to grow with Paxton and was doing more work.

Susanne entertained Paxton while he laid on the table for his heart ultrasound. He was always such a good baby for all the poking and proding he received. He didn't even cry once this time and even almost fell asleep.

After giving the doctor time to review the results, he came in to give a status update. The cardiologist felt like the right ventricle didn't appear to have grown much in size, but there was a small amount of blood being pushed by the right ventricle up into the pulmonary artery to go to the lungs. Currently, the majority of the blood reaching his lungs to become oxygenated was still coming from the Glenn shunt that was placed in October. The hope was that over time, the right ventricular muscle would wake up and start doing more of the work. If this didn't occur over a short period of time, Paxton would be required to have another heart procedure called the Fontan procedure. This would mean that both of the major blood vessels that bring all of the blood back from the body to the right side of the heart to be pushed to the lungs for oxygenation would be directly connected to the pulmonary artery. This would cause the blood to pushed directly to his lungs and bypass the right side of his heart all together. For the moment, it would be more of a wait and see process. There was still time for hope.

Susanne got a lot of other great information from this visit. She learned that Paxton would be on Aspirin indefinitely to help prevent clotting, which was a bigger concern since he had the Glenn shunt in place. More than likely, he would also be on the diuretic, Lasix, long term to prevent fluid overload and congestion to the liver and lower extremities. Susanne was reassured that if he was showing evidence that his heart was failing and fluid was backing up, it would present itself in his abdomen and liver. Due to the Glenn shunt, there would be no evidence of any swelling in his head and upper extremities. The Captopril medication was not being used as an antihypertensive, but more so for decompression of the heart. It was a blood vessel dilator to help the blood flow more smoothly and allow the heart to pump blood more efficiently. Paxton may not need to be on this medication forever, but he required it currently. As far as the damage to the brain that was pointed out from the MRI, no one could say for sure if it was due to a congenital issue or from all of the anesthesia he had been under for his multiple surgeries. A major factor in all of this was that Paxton had been on a heart and lung machine twice before during his two open heart surgeries. Most people who undergo a heart operation go on this machine because of the difficulties of operating on a beating heart. The purpose of this machine is to allow the patient's blood to bypass the heart and lungs all together and get oxygenated and reinfused into their body by external means. This alone can contribute to immediate cognitive decline and risks for mini strokes. The long term mental damage in a child is never known until he or she is older. Susanne decided that this was yet again another thing that she would not worry herself over. She would rather just throw it on top of her long pile of "wait and see".

Paxton's nurse was supposed to watch him starting at 2:30pm. Due to having to reschedule his cardiology appointment from about two weeks ago, Susanne moved the time to 4:00pm. Susanne truly thought that they would be finished with the cardiology appointment within two hours and have enough time to make it home. Unfortunately, this was not the case. The heart ultrasound took an hour alone. When she finally got on the road and was heading home, it was poor timing. It was rush hour traffic and she was in the heart of chaos. She called the nurse back to change the time to 4:30pm and then again to 5:15pm. Time just kept slipping away from her. She finally made it home and got Paxton settled. Once he was sound asleep, she headed out again to run errands while the nurse watched over him. It was nice to get some things done that she had been putting off for a long time. By the end of the night, she was ready to crash herself. Paxton had the right idea.

Postponed Trip

Paxton's appointment for today ended up being cancelled due to the issues with the insurance. They could not get an approval for his vaccine so there was no need for him to come in. This actually worked in Susanne's favor. This meant that she would not need to get up extra early to get on the road. Now she could sleep a little longer and there was no rush to head out.

Scott was able to help Susanne pack before his class. An extra pair of hands was always in demand. Even with the added help, it was still a production to get out the door. For some reason, living out of a suitcase had not become any easier.

Susanne finally got on the road around 12:30pm. It was a lovely drive for once. The weather was nice and she was not sleepy at all. Paxton did well also. He enjoyed looking out the window at the scenery. It was an added bonus that the sun was out longer especially with her leaving later than she was used to. She really struggled to drive at night so this was helpful.

Susanne got home and got settled in. She was excited to be in her own home, in her own bed, and watching her own television. The kitties were excited too. They had no issues with lounging around with her.

Right as Susanne was about to fall asleep, she heard someone come through the door. She was scared at first until she saw that it was Scott. This was the perfect surprise. There was always room for one more in the bed.

Are We In Rio?

Paxton was having some issues with regulating his temperature now that it was warming up outside. Even though it was comfortable in the house for everyone else, Paxton didn't agree. He was hot and sticky just like the humid weather. Susanne could just foresee another summer of Paxton living in just his diaper. He was becoming a nudist slowly, but surely.

Paxton had his usual day of playtime mixed in with therapy. When Susanne was home from work over lunch, she really worked on trying to get him to have better head control and work on him being able to sit on his own. It was a slow process, but there were small glimmers of positive improvement that she could see daily. It was always helpful for someone that didn't see him daily to observe his progress. They could usually pick up on more of the changes he had made since they could take a step back and look at the big picture.

Paxton continued to make a variety of cute sounds throughout the day. It was so interesting to witness him discover the new noises he was making. He must have been using it as a distraction technique for Susanne because there were multiple times when she would look down at catch him grabbing at his G-tube. This was not a good habit for him to get into. It was one thing for him to pull out his nasogastric tube, but his G-tube would be a whole other story.

When Susanne got home in the evening, she decided to put Paxton on the exercise ball to work on tummy time before bed. She turned on the TV to try to encourage him to look up. She was shocked and amazed to see how quickly his head popped up when a commercial for the new movie, "Rio" came on. She had never seen his head held up so high. Any personal trainer would be impressed with his back extension. Susanne knew she would have to try this again. This not only helped to strengthen his muscles, but also take his mind off of the task at hand.

By the end of the night, Susanne realized how overwhelmed she had become with the challenge of finding Paxton a new primary insurance. It had not been an easy task thus far. Scott and Susanne knew they would have to make a decision within the next couple of days to make the cut off window for coverage. There wasn't any option that was great. No matter what avenue they chose to go down, they needed to make sure that it was the best choice for Paxton no matter the cost.

With all of the stress that Susanne had been under lately, she had no energy to pack for the trip back up to Virginia tomorrow. Instead of forcing the issue, she decided to take a load off. The more appealing option was to sit down and hang out with Poppy and Scott over a nice cold beer.

Pollen-palooza

Paxton woke up gagging this morning. His daddy came to his rescue...after Susanne had to wake him up, of course. Scott still slept like a rock even after getting adjusted to having Paxton and Susanne around a lot more. As Scott was tending to Paxton's needs, Susanne got ready for work.

While Scott got ready for his class this morning, he sat Paxton in front of the TV to watch Seasame Street. It was becoming part of his routine on certain days. Scott decided not to sit him directly facing the television. Instead, he faced his bouncer parallel to it. The purpose of this was to try to strengthen the muscles in his eyes. He was aiming for Paxton to be forced to look out to the side. It seemed to work really well.

After Scott left, Poppy and Paxton hung out for a while. Poppy entertained Paxton with a variety of toys that would force him to not only be visually stimulated, but also give him something tactile to touch. Poppy was always inventing creative ways to get some sort of therapy into Paxton's day.

Paxton was sleeping by the time that Susanne got home for lunch. She loved watching him sleep so peacefully. He had the sweetest face.

Scott got home shortly after Susanne. He was taking over for Poppy for the rest of the afternoon. Susanne didn't get to hang around much either because she had to head back to work. He worked on some tummy time and sitting. He encouraged Paxton to reach out for his toys. Scott was fascinated by the different sounds that Paxton was making. He would start off by making noises that sounded more nasal. This was usually when his tongue was pulled back and hitting the roof of his mouth. Scott did a series of mouth exercises and tried to get Paxton's tongue to lay down better. Once Paxton figured out what Scott wanted him to do, the noises that were coming out sounded completely different. Scott was certain that Paxton would be saying "ma-ma" by the end of the week. After about an hour of serious playtime, he was slowing down.

Scott ended the day with giving Paxton a nice warm bath. Paxton always loved this activity. Scott thought that afterwards, he would settle right down and fall asleep. Unfortunately, this was not the case. He twisted and turned. He squiggled and squirmed. It took over an hour for him to finally close his eyes.

He slept soundly for hours right up until Scott was setting up his overnight feeding. It was then that Paxton woke up sounding congested. He sounded like he was having difficulty breathing through his nose. Scott had to apply Little Noses to each nostril and then suction him out. He immediately felt better once this was done. Susanne and Scott thought that it had to be related to the season change. They both were sure he was feeling the effects of all of the pollen. The sneezing, congestion, and itchy eyes were causing them all to feel miserable. Hopefully, Paxton would adjust to the outside conditions quickly.

Wild Man

Scott was in and out all day. He had two classes to teach, one of which was an hour and a half long. It was nice for Paxton and Susanne to see him when he was around, but it was few and far between.

Susanne took today to really push Paxton. She worked with him a lot on tummy time. He was slowly, but surely gaining more strength. The best way to get him to look up was still using the television as the focal point. Paxton couldn't resist the mesmerizing appeal of Elmo.

After working Paxton hard, Susanne placed him in his bouncer for play that would take less effort on his part. Susanne thought that he would just try to bat at the toys in front of him to engage the lights and music. Instead, Paxton was a wild man. He was moving around so much. He was pulling his legs up to his chest and kicking like crazy. Susanne knew he was getting a good ab workout.

As he was slowing down, he was putting his hands to his mouth and suckling. This was Susanne's cue that he was sleepy. He was making the cutest little sounds as he was falling into a trance. Shortly afterwards, he was gone. Susanne used this time wisely to get some things checked off of her "to-do list".

Excited Return

Unfortunately, Susanne didn't sleep well. She was up every three hours worrying about Paxton. It was difficult for her brain to shut off because she was so used to
taking care of him. She was super excited to get home and see him.

For breakfast, Scott wanted to take Susanne, Aixa, and Anthony to an Italian pastry shop for some sweet treats. Scott had been there before with Poppy and really fell in love. He was most excited about having Aixa try the cannolis because he knew they were her favorite. It wasn't until they rolled up to the front door that they realized that they were closed on Sundays. They were beyond bummed.

The next place they stopped at was a quaint little restaurant that was serving brunch. The kicker was that they only took cash which they were out of at that point. They ventured down to see what restaurants were along the beachfront. They came up with nothing. After wasting a bunch of time, they decided to settle for a chain restaurant and call it a day. It ended up being a sports bar that was featuring the Carolina game. Three of the four of them had attended NC State so this was a recipe for disaster. They were definitely rooting for the other team, it didn't matter who it was. It got really rowdy in the restaurant, but they survived. The entertainment was great, but the food was even better. Most of them built a burger, which ended in success. They were sad when their time had come to an end. They wished they could make the weekend last a little longer. They were hoping to see each other again soon.

Susanne and Scott were sad to see Aixa and Anthony go, but they were excited to head back to see Paxton. When they finally arrived, Paxton was playing on his playgym. It was short lived before he was showing signs of being tired. It was almost like he waited to fall asleep until they had returned home.

Later that evening, Paxton was ready to play again. He was making a variety of noises with his mouth. They were thinking anyday now, he should be forming words. He was also exploring his mouth a lot more with his hand. In the past, he would suckle on his arm. It slowly progressed to him suckling on his hand and most recently, suckling on his fingers.

Paxton got active at the end of his play session. He was kicking around and laughing quite a bit. He thought it was really funny when his feet were placed into his hands. He was intrigued by his wiggly toes. Hopefully, he would be able to do this on his own soon without any prompting.

Scott and Susanne spent the rest of the night getting back into the swing of things. It wasn't long before they were enmeshed back into Paxton's routine. It felt good to be home.

Extreme Super Moon

Susanne and Scott were headed to Wilmington for the afternoon and evening. They were excited about Aixa's birthday celebration, but they were having a difficult time leaving Paxton. It never seemed to get any easier.

Paxton would first be under the care of his Aunt Leah, then his Gigi, and then both Gigi and Poppy. They were all aware that they needed to have their phone on them at all times. Susanne would call in for updates and she wanted them to call if they had ANY question, no matter how small.

They arrived in Wilmington around 1:00pm and met Aixa and Anthony for lunch. To help break them in, Susanne and Scott ventured out and had Bloody Mary's to start their day per Aixa's request. It was the first time that Scott had ever had one and the first good one that Susanne had ever had. For their meal, they went out full Southern style. Susanne had shrimp and grits and Scott had a barbecue sandwich, macaroni and cheese with sweet tea. It was yummy.

After lunch, they all walked along the boardwalk. They stopped at different riverside restaurants and enjoyed drinks along the way. The weather was beautiful and they were trying to find any excuse to be outside. Right around 3:00pm, Susanne freaked out because she thought she forgot to give Paxton his medications. It took a few minutes for her brain to regroup and realize that Paxton wasn't with her. He was at Gigi and Poppy's house and someone else was taking care of all of that. This was the perfect opportunity for Susanne to call home to get an update on the little guy. She ended up doing this at every feeding and even before bedtime. It gave her peace of mind to know that Paxton was doing a-okay. Leah even sent Susanne a picture of Paxton playing with his Lock N Rock Linking Musical Shakers. He was straight jammin'!

Before dinner, they headed to the beach to watch the sunset. This was definitely something that Susanne missed doing. She remembered doing this a lot as a child since she grew up near the water. It was such a fond memory for her. After the sunset, they waited for the moon to rise. It was supposed to be an extreme super moon with it being 30% brighter and 14% bigger. What a sight to see! It was spectacular.

For dinner, they went to a local Mexican restaurant. They all ate their weight in chips. Even though they were stuffed just from that, they managed to finish their entire meal. It was probably the best food they had had in a long time. Basically, it was perfection on a plate.

Once they knew Paxton was safe and sound in his bed, they finished the night out at the restaurant in their hotel. Everyone got something different to drink, which was humorous. Scott was thrilled with his choice. It was the best White Russian he had ever had. It was definitely going down in the books.

Susanne and Scott ended up having a memorable day with good friends. They were missing Paxton terribly, but they were glad that they made it out to help celebrate.

And Then There Was Light....

This morning, Scott was requested to substitute for two classes at the community college. As he was finishing up with his classes, Susanne met him over there because she had another $10 massage scheduled. What a perk for going through the school. Susanne was running a little bit behind because she forgot that Paxton's car seat was not put together. He had had an explosion in his car seat earlier in the week. Susanne had disassembled the entire thing so she could wash the car seat cover, straps, and buckle. It wasn't the easiest thing to assemble, but she was much faster at it now having done it so many times.

Scott and Paxton laid out in the grass and soaked up some rays while Susanne was enjoying her relaxing hour. She was pretty impressed with herself that she had officially made the transition over from preferring a swedish massage to preferring a deep tissue massage. With the kind of "mom" shoulders she had, she needed all the help she could get. She was recently having a dull, chronic pain especially on her left side. She knew that it was absolutely from lugging around her little noodle everywhere. He was her total body workout everyday. Thanks Paxton for making your mommy buff!

When Susanne was all finished, she wanted to enjoy the beautiful weather with her boys. First, they had lunch together before heading home. They needed to get Paxton off to bed for his nap and set up with his next feeding. He was tuckered out from all of the people watching.

As Paxton slept the afternoon away, Scott and Susanne sat outside on the porch together. It was amazing how just a change in scenary could change one's mood. Being outdoors was very relaxing for them. It reminded them to not only appreciate the small things in life, but most importantly to appreciate the wonder of God's creation. Everything had it's place in the world. There was a reason for each individual piece of the puzzle. Without one, there would be no whole. Everything was thought out with such precision. There was such beauty in the delicate details. It helped to bring it all into perspective. God doesn't make mistakes.

They ended their night with a nice stroll around the block. It was lovely to see the sunsetting at a later hour so they could enjoy their days a little longer. The dogs also enjoyed seeing the world with new eyes again. It was a beautiful thing.

Happy St. Patrick's Day!

Today, Parker came over to play with Paxton while Aunt Leah and Uncle Wally were at work. Parker was dropped off after his morning at pre-school. Susanne had an afternoon full of exciting things to do. She couldn't wait to get started.

Right away, Parker realized that Paxton wasn't wearing green. She had purposely done this so that Parker could pinch him. Paxton enjoyed the gentle squeeze from his cousin.

One of their first activities together was to color. They had a variety of shamrock pictures to choose from. After they were done coloring, they jazzed it up with a little green glitter to give it some pizazz. This was followed by cutting out their pictures and gluing them onto construction paper. They added their names to their masterpieces and...VOILA, they were finished. They immediately placed the completed artwork on the refrigerator for all to see.

For Parker's mid-morning snack, Susanne prepared a plate of sliced cheddar cheese, crackers, grapes, and strawberries. For his drink, she requested his assistance in making Leprachaun juice. Parker was fascinated that his green drink tasted so much like lemonade. Scott saw the yummy feast before him and couldn't pass it up. Susanne ended up making him a duplicate of what Parker was having.

After a short time, Parker hadn't finished all of his snack. He was all done and ready for the next adventure. Susanne and Scott didn't want it to go to waste so they grazed on it throughout the rest of the afternoon. Parker checked his plate at one point and saw that some of his food was missing. He was quickly informed that there must be a Leprachaun hanging around stealing some of the items when he wasn't looking. He was insistent on finding said Leprachaun. He had Susanne and Scott looking in the kitchen drawers, cabinets, trashcan, oven, under chairs, outside, and even in the garage. Unfortunately, they never found the sneaky little thing.

Once Parker tired from looking for the Leprachaun, they went outside to look for four leaf clovers. Susanne took their guinea pig, Beans, outside with them. The rule was whenever they found a clover that didn't have four leaves, they must give it to Beans to munch on. Scott, Susanne, and Parker left with empty hands, but Beans left with a full belly.

Scott ran around with Parker some, while Susanne enjoyed the warmth from the sun. She wished that Paxton had been awake to enjoy it as well. She knew deep down that his beauty rest was more important than his suntan.

As the afternoon was turning into the evening, they decided to watch a movie. Scott had prepared a special treat for them and they couldn't wait to see what it was. He had made them Leprachaun popcorn balls, which were a green, ooey, gooey, delicious, sweet sensation. They couldn't get enough of it. Susanne, Scott, and Parker were only about a third of the way into the movie when Uncle Wally came by to pick up Parker. He didn't want to leave, which was always a good sign that Susanne and Scott had done a great job of taking care of him. Two points for the Padilla team!

As Wally and Parker left, Leah arrived. She came over for a refresher on Paxton's care because she was going to be watching him this Saturday while Susanne and Scott were in Wilmington. They were heading there for the evening to help celebrate one of Susanne's best friends birthdays. It had been a few months since they last saw each other, so they were excited to be reunited.

Susanne was always nervous with leaving Paxton, even if only for a few hours, so thinking about an entire night away was extra scary. On the flip side, if there was anyone she knew she could trust with Paxton's life, it would definitely be Leah. She was very intelligent and intuitive. She was quick on her feet and made good judgement calls. She was meticulous and careful just like Susanne, which gave that added bonus. There was a lot to be remembered and a lot to do, but hopefully she would catch on quickly.

Leah stuck around for the 6:00pm and 9:00pm bolus feedings. It helped for her to be present for one that was more straightforward and one that was more involved. The 9:00pm feeding was the one that required a bunch of medications. It was nice that Leah was really familiar with syringes and reading prescription labels. She had gained this experience not only through her job, but also through having two young children of her own that were either on something now or had previously been on different things in the past.

Luckily, while Leah was visiting, Paxton was still awake. Leah was excited that she got to spend some quality time with him. She was able to give him the remainder of his birthday gifts that had just arrived in the mail. The Hansen's had purchased Paxton some Lock n' Rock Linking Shakers and "My Very Own Name" book. The book was extra special because it was personalized and went through how a variety of animals came together to form his perfect name. In the long run, it would help Paxton to recognize letters and to learn to spell his name.

The occupational therapist side of Leah decided to be extra useful and show Susanne some different therapy techniques to aid in training Paxton to get to a sitting position from laying down. Susanne welcomed any new ideas for trying to help push Paxton along.

Once Paxton went down for the night, the rest of the household gathered for dinner while watching a TiVoed version of American Idol.

Juggling Act

Susanne was off to work early in the morning. She was pleased that she got a little more rest than she had over the last few nights. Scott watched Paxton until he had to go teach his class, then it was Poppy's turn to step in.

Poppy sure had his plate full for the day. He wasn't only in charge of taking care of Paxton, but also Parker. Susanne knew that this would be a challenge, but if anyone could do it...it was Poppy. The difficulty was that Parker was very active while Paxton was stationary. Parker liked to get involved in an activity and then within 15 minutes of starting it, he was ready to move on to the next thing. On the other hand, Paxton needed to be held or lying down. He couldn't sit on his own quite yet and he often needed prompting for play. Also, due to his rigorous feeding schedule, he often needed to be near his enteral pump. He was still being fed five times a day, every three hours, over an hour. He was then set up with a continuous feeding for eight hours overnight. There were only two hour windows throughout the day that he wasn't connected to a machine. Within those moments, one was lucky if he was awake at those times. Susanne was sure that one child or the other would have to self entertain for chunks of time. This would have to suffice especially since she knew neither would be neglected.

It ended up working out perfectly. Paxton loved to sit in his bouncer to watch Sesame Street a couple of mornings throughout the week. It had become somewhat of a routine for him. Scott used this to help provide stimulation while he would get ready for work. Poppy decided to continue with this schedule to free himself up for Parker. He alternated turns which worked out until Susanne came home for lunch. She was able to relieve him of his duties for at least a short bit until Scott got home for the rest of the afternoon.

When Susanne got home for lunch, Parker and Poppy were playing pretend. Parker was an employee at a fast food restaurant and he wanted to take everyone's orders. He was very good about getting the food out quickly and making sure you got the correct amount of change. He was so creative.

Susanne got back from work in time to relieve Poppy again so he could go to work. She was excited that she would get to spend the rest of the evening with her sweet baby boy.

Paxton Makes Everything Better

Susanne and Paxton didn't arrive at the house until 11:30pm last night. It took her over an hour and a half to get settled back in. Luckily, Scott helped out with it all, which made it go a lot quicker. She was pretty much non-functional by this point. Packing, unpacking, packing, unpacking, coming, going, going, coming....it was starting to wear on her.

Paxton woke up in the middle of the night and Susanne decided to wake up Scott to take care of him. She didn't have any energy reserved especially since she only had three hours of sleep the night before. She needed all of the sleep she could get because she had to be at work at 7:45am for a meeting instead of 9:00am. Susanne knew it would be tough, but she was used to sleep deprivation by now. She was technically a pro on functioning on a little sleep.

Scott got up with Paxton first thing and hung out with the little guy. Once it was time for him to get ready for the class he was teaching, he set Paxton up in his carseat to watch Sesame Street. Within minutes of being upright, he pooped everywhere. It looked like a volcano had erupted. Paxton was known to do this in the past. His carseat had always been a place that helped to clean out his bowels. What a messy boy!

After operation clean-up occurred, Paxton was set out to dry. He was free as a bird for a short time. There were definitely no complaints on his end.

Poppy took over Paxton's care once Scott left. He felt like Paxton was laughing a lot more today than in the past. It was neat that he was getting to see Paxton grow.

During lunchtime, Scott and Susanne came home. They had to get right to work with calling insurance companies to figure out what was the best plan for Paxton. Since Scott lost his job, Paxton no longer had primary insurance. This was devastating and not something he could go without. They had been on the hunt to find a replacement from the second they got the bad news. Unfortunately, no option was looking too great. The simple fact that Paxton had chronic medical conditions, including a cardiac defect, put him in the top tier for cost. His monthly premiums alone were averaging around $700 per month. This was way more than what they could afford at this time. They would just have to keep searching and hope for the best. No matter what, a decision would have to be made soon. They just didn't know which way to go.

To take their minds off of the health insurance dilemma, they spent some quality time with Paxton. Scott was fascinated with offering him a small portion of whatever he was eating, especially any kind of candy coated treat. Paxton always seemed hesitant at first, but then he would come around. He would usually smile once he got a full taste of whatever was sitting on his lips. He would even lick his lips at times that supported the idea that he liked the flavor of sweets.

Since they were working so much in and around his mouth, they just happened to notice that his right front tooth was coming in. Even though this was his fifth tooth they had seen, he hadn't really shown many signs of teething which was a relief for all. They guessed when someone had gone through what he had gone through, cutting a tooth didn't seem so bad.

The diaper rash was still an on again, off again battle. No treatment seemed to be working. Susanne was convinced there was more to the story. She decided that she wasn't going to switch Paxton's formula quite yet. She wanted to wait until after she had stopped giving him breastmilk all together to throw that out as a possible cause even though it was unlikely. Susanne still stood firm that the diaper rash started once she DECREASED the amount of breastmilk that he was given. Needless to say, the goal she wanted to reach was to continue pumping until Paxton received his last Synagis vaccine. After that was out of the way, the nutritionist, pediatrician, and lactatation consultant felt like Paxton could be on just formula. It would be interesting to see what the diaper rash would do at that point.

Scott and Susanne were loving the fact that the sun was out longer during the day. Even though Susanne got home after 6:00pm, she still got to enjoy the fresh air. Scott, Susanne, and Paxton decided to walk the dogs to savor every morsel of the beautiful weather. This always helped to clear their minds. Paxton looked so good in his big boy stroller. He didn't depend on the carseat anymore to be wheeled around. He was exhausted by the time they got back. Gigi played with Paxton while Susanne prepared his bed. The second she laid him down, he was out.

They ended the night with yummy burgers and fries while watching "The Bachelor". It was perfect!

Full Plate and Your Late

Susanne was just about to get in bed for the night when Paxton woke up around 4:00am. Luckily, he settled right down after a diaper change and some soft back rubs. Susanne had to be up soon because she had to get herself and Paxton ready for a full day of appointments. Also, she had to get the car packed for the road trip back to NC today. It was going to be a long one.

Susanne was shocked when she rolled over and saw that the clock read 7:07am. She knew that couldn't be correct. She had set her phone alarm to go off way earlier than that. Unfortunately, it was the real time. Her cell phone never went off. Her phone was doing this weird thing where it would shut off when it was fully charged and then turn on again. It would continue this cycle until she took it off of the charger. The phone must have been in the off mode when the alarm was supposed to wake her up. Now she would have to pray for a small miracle to get out of the house on time.

Somehow she was able to get herself and Paxton ready within twenty minutes. She was out the door in the blink of an eye. As she got into her car, she knew she was about to face another set of challenges. It was the heart of rush hour traffic in Northern Virginia. This was the worst time to be on the road because going somewhere 10 miles away could take up to two hours. She decided to be smarter than the traffic and take a different path than she was used to. She remembered all too well when she used to try to go to work at this time, the back roads were far worse than the main roads. She was cruising along until she approached the stoplight that would get her onto the highway. The line was ridiculously long. She sat there for at least fifteen minutes. It wasn't until she was finally able to turn that she realized there had been an accident on the main road. She knew right then that she had made the wrong choice. If she would have just gone the way she usually went, she would have avoided the extra bump in the road. Either way, she knew she was going to be late.

In knowing this, she called the doctor's office to inform them of her situation. They were very understanding and told her to still come in. She finally arrived and checked Paxton in for his appointment. This took forever because there were a lot of children that were scheduled to be seen. The checking in process sometimes took the longest.

After hanging out in the waiting room for a short bit, they got called back. Paxton got his weight, height, SpO2, and vitals checked. Paxton weighed in at 19lbs 6oz. Susanne was quite pleased. His height was 28.5", which was less than the last time. She was puzzled by this one. She had to blame user error vs. Paxton shrinking in length. His oxygen levels were hanging steady at around 88. This was so much better than prior to his heart surgery. She knew this improvement alone helped him to feel better.

Next they were off to the exam room. It was there that they ended up waiting and waiting and waiting some more. She knew that she was going to have to wait a little longer than usual since she was about thirty minutes late. She did start getting concerned though when she had been in there close to an hour before the doctor came in. She thought for sure that she would be able to make it to a 9:45am appointment for Paxton's cardiology check-up. She would have never thought that his gastroenterology appointment would have lasted longer than 90 minutes. Boy was she wrong! The doctor basically came into the room at the time that Paxton's other appointment was scheduled to start. She had to unwillingly call them to cancel.

The gastroenterologist was lacking in the personality department. Susanne strongly felt like this was an important quality to have as a pediatric doctor. He was also a little snooty for her liking. He spent the entire first ten minutes trying to figure out why Susanne was there in the first place. When she kindly explained the fact that she was referred to him for further instructions on long term G-tube care and for his neverending diaper rash...he seemed baffled. Susanne really got perturbed when she realized that he had not read ANY of the eight page history that was required for parents to fill out before the apointments. He didn't have an understanding of Paxton's medical conditions at all. Susanne had to spend a significant amount of time going through everything that she had already written down. Somewhere in the middle of it all, he got caught up with why Paxton had been seen at multiple different hospitals along the east coast. Susanne explained Paxton's unique circumstances, but that wasn't good enough for him. He continued to inquire. Susanne tried again to explain that Paxton's combination of medical issues was rare. Most medical teams had been comfortable treating their own specialty, but not managing him as a whole. It took months to find someone willing to work with him on feeding. Once that issue was resolved, he required a specific heart surgery that only two surgeons in the entire United States had ever performed. Once that was said, he went into questioning whether or not Susanne had checked into the cardiac surgeons at their hospital. Susanne had to really focus on not giving him a wise answer. Did he not know who he was dealing with? Did he not have the proof in his hands that Susanne had investigated every possible avenue for Paxton?

Finally, he moved on to the exam portion of the appointment. He thought Paxton looked great considering all that he had been through. By the end of the appointment, Susanne had no more information than what she had come there knowing. She received no instructions for G-tube care. She was informed to call a nurse for that. She was told to schedule an appointment with the feeding team for further instructions on managing his feeding issues. She needed to schedule an appointment with a nutritionist to seek information on changes regarding Paxton's nutritional requirements. He requested more testing that had already previously been done, which included bloodwork and a modified barium swallow. Finally, as far as the diaper rash went...he had nothing!!! WHAT? Isn't he the doctor that was supposed to treat everything from the mouth to anus? Wouldn't you think he would have some sort of suggestion? It wasn't until Susanne requested trying a different formula that she got any information on it. Her thought process was that maybe Paxton was sensitive to the current formula because it was a hydrolyzed protein instead of a novel protein. She knew that this could be the case in veterinary medicine for animals that had food allergies so why couldn't it also be true for Paxton. This basically meant that Paxton was eating a formula that had milk and soy protein in it, but they had been broken down into such tiny particles that his immune system wasn't supposed to recognize them as allergens. This was different from a novel protein diet which was a protein that Paxton had never been exposed to before and therefore couldn't have developed an immune response to it. She was glad he finally had something for her to walk out of the door with. This was an easy switch and worth a shot.

She got out of there three hours later. That was way too long of an appoinment to walk out of frustrated and informationless. She knew she would eventually get all of the answers to her questions, but she would just have to talk to five and six different people to get them.

While she was driving out of the parking lot, Paxton's therapist texted Susanne to let her know that she was going to have to cancel Paxton's appointment for today. One of her children had strep throat and she didn't want to put Paxton at risk. She was always glad that she kept Paxton's health in mind.

Since that appoinment was cancelled, she decided to head over to the pharmacy to pick up Paxton's prescriptions that she had called in a couple of days before. She also had a new dose for one of Paxton medications so it was perfect timing. When she arrived, his medications were not ready. They had been having trouble with the insurance situation since it changed again. Susanne knew it was a pain to deal with, but it wasn't her fault that Paxton lost his primary coverage. While she was waiting for the receptionist to get ahold of the insurance company, it was brought to her attention that Paxton's prescription was for a different medication than what he had been on. Susanne was confused because the gastroenterologist didn't mention this to her. He had only said that he was going to increase the current dose of his reflux medicine. Susanne had to spend the next thirty minutes trying to get in touch with the doctor to see if he made a mistake or if he truly wanted to switch the medication. Finally, Susanne got a call back. The doctor claimed he didn't know Paxton was on Protonix even though Susanne had written it down for him and discussed this with him during the appointment. He said that he thought Paxton was on Prevacid. Needless to say, he switched the medication. The carelessness was eminent and Susanne didn't like it one bit.

After waiting for over an hour for Paxton's prescriptions, Susanne and Paxton were finally out of there. It was a good thing that his therapy appointment was cancelled because they wouldn't have made it home in time. Susanne was working against the clock at this point. She needed to get home as quickly as possible because Paxton was off of his feeding schedule. She had only brought enough milk for the first feeding of the day because before she left the house this morning she thought Paxton needed to be back for therapy at 12:00pm. In no way did she think it would have been cancelled or that she would still be gallivanting around. In her race home, she realized that the gas tank was on empty. She was trying to hold out on filling the tank until she could find a Shell gas station in particular. A while back, Scott and Susanne had received a Shell gift card from a friend to try to help with the cost of gas. They knew how much Susanne was traveling back and forth and thought that this would help out. It was a very thoughtful gift that was definitely put to good use. Susanne quickly realized that there wasn't that specific gas station in her vicinity. She got on one of the main highways and hoped for the best. She was no longer seeking out that specific gas station, any one would do. She didn't understand why when you weren't looking for a gas station, they were everywhere, but when you were looking for one, they were nowhere to be found. She was frustrated with herself that she got into the same situation that she had been in months ago. Why had she not learned her lesson? Her tank was on E and the GPS was estimating that she didn't have enough gas to go any further. It read that she had zero miles left before the tank was completely dry. She knew that she still had at least 3 - 4 miles to go before she would come across an exit with any promise. It was by the grace of God that she made it to a gas station. It was $3.74 per gallon, but she didn't care. She only filled the tank with fifteen dollars worth of gas and she would figure the rest out later. She was relieved that this crisis was averted.

They finally arrived home and Paxton was way overtired. He had a busy morning that started out too early. He didn't like to sleep in the car so it always exacerbated the problem. Once he was situated in his crib and set up with his late feeding, Susanne HAD to pump. She didn't have time to do it this morning because her alarm didn't go off and she was running so behind. Afterwards, she felt like she had somewhat caught up with her schedule again. Now she would have to dig deep and keep pushing. She still had a car to pack and a six hour drive ahead of her. She was praying that she would get ahead of rush hour traffic, but it wasn't looking too good. It was going to be a long night.

Neumann's In Da' House

Paxton slept a good portion of the night. He only woke up once around 4:00am, which technically used to be 3:00am before today. Susanne hated the thought of losing an hour. She was always in need of MORE time, not less. There was a positive side to it though...it would be light out a lot longer. Yay! This always helped to encourage Susanne to get more done with her days. There was something about the sun setting that registered with her brain that it was quitting time for the day.

After Paxton's thirty minute episode of being unsettled, he slept the rest of the night. He woke up uneventfully. This was day 2 of no gagging or vomiting. This was a great kick he was on. Susanne could definitely get used to this.

Aunt Leenie and Uncle Loonie came over for a visit this afternoon. It had been a while since they had last seen him. They were impressed with how well he looked after just having another surgery. They thought it was pretty cool that the hole in his mouth was all sewn up.

Paxton was well overdue for his next bath and Susanne was still testing out the Domeboro packs for his diaper rash. It was nice to have an extra TWO pairs of hands and Paxton sure didn't mind the attention. After Paxton's regular bath, Susanne set up the Domeboro solution in just the very bottom of his bathtub. It was just enough to cover his booty. Susanne had to soak the affected area for about 15 to 20 minutes. Paxton didn't seem to mind the wait. Once he was all done, Aunt Leenie lotioned him up. She gave him an extra little massage to his muscles as an added bonus. Once she was done, Uncle Loonie took over with cuddling duty. Of course, they only talked about the manliest of manly things.

The timing was perfect. Paxton was due for his next feeding. They set him up to play on his play gym while he ate. It wasn't long into his playtime that he was showing signs of being tired. He had only been up for a couple of hours. Susanne thought for sure he had more in him. Even though Aunt Leenie and Uncle Loonie wanted to spend more time with him, they knew he needed his beauty rest. That was how he got to be so good looking.

The rest of their visit, Paxton was out cold. Susanne spent this time catching up with the latest and greatest happenings in the Neumanns' lives. Susanne sure missed hanging out with them like they used to. Of course, right as they were heading out, Paxton woke up. Better luck next time.

After they left, Susanne set up Paxton in his high chair to watch her prepare dinner. He was always so engaged when she was giving him cooking lessons. Hopefully, one day he would have the same passion for food as his mama.

Once he was off to bed again, Susanne took the rest of the night to pack up their belongings for the trip back to NC tomorrow. There were always so many odds and ends she had to remember. She also tried to finish up any business that had to be dealt with while she was up here. It was easiest to take care of most things when she was in VA because that was where all of the needed information and paperwork was filed and stored away. By the time Paxton was due to be set up for his overnight feeding, Susanne couldn't believe where the time had gone. There were never enough hours in the day. It helped that Paxton provided some comic relief earlier in the night as he was falling asleep. She witnessed him laughing at himself through the monitor. She didn't know what was so funny, but it made her smile. Hopefully, she could get this on video one day.

Losing Time

Today, there was cause for celebration. Paxton didn't wake up gagging or vomiting. He woke up peacefully and quietly. This was such a rare occasion that it deserved acknowledgement. Susanne could definitely get used to this.

Paxton was awake for just a little over an hour before he started showing signs that he was tired again. He played on his play gym and batted at some toys, but he tuckered himself out pretty quickly. He even fell asleep midway through his 9:00am feeding while playing. Susanne put him back in his crib for his first nap of the day. Susanne was caught off guard when he ended up sleeping for four hours. She wondered if he was going through a growth spurt.

Once he woke up in the afternoon, Susanne set him up so she could air him out again. This was becoming part of their daily routine. It was the only thing that consistently helped to improve his diaper rash. Paxton never complained about this because he enjoyed the freedom.

Paxton was visibly well rested. He was very engaged in playtime with his mommy. He was more interactive and playful than he was this morning. Susanne found it so interesting that he had a preference for certain toys. He absolutely loved his Mortimer the Moose. He had been his favorite for a long time. His newest obsession was the sensory balls that he got for his birthday. They were just different sized plastic balls with different textures on the outside. They didn't light up or make noise. They weren't soft and cuddly. They didn't have a lot of flash and sparkle or glitz and glam. They were just balls, but he LOVED them. This, in some weird way, reminded Susanne so much of Maverick. Maverick was known to pick out the most uninteresting, humdrum of toys as his favorites. For example, Susanne remembered buying James and Maverick a plain, plastic square toy from Petsmart because they were on sale for $0.97 a piece. They didn't do anything special, she just thought it would be something different for them because every other toy was a round ball or an elaborate stuffed toy of sorts. Susanne and Scott were amazed at how quickly he got attached to this thing. Up until Maverick's last days, he would carry the blue square toy around with him everywhere he went. He would even sleep on top of it no matter how uncomfortable it may have been. He loved the simplicity of it and he loved that it was different from all of the other toys. It was easy to see that Paxton was definitely his little apprentice in so many ways.

Moppy came over later that afternoon to watch the bug while Susanne ran a few errands and went to dinner with a couple of her good friends. Paxton was fighting his need for another nap when she arrived, but he finally went down. When Moppy went to check on him a few times, he would be half asleep. However, the second he knew she was in the room he would open his big, brown eyes, look up at her, and smile the biggest smile. It was like he knew that he was being stubborn. Moppy had no question as to where he got that trait from. There would be no way for him to escape it since both of his parents were that way at times.

The rest of the evening was uneventful for the most part. Moppy got to play with Paxton and even read him a few bedtime stories. She couldn't believe how much better he looked since the last time she saw him, which wasn't even that long ago. She could see the change that Susanne had noticed over the last week. He was more alert and talkative. He was really getting adjusted to his new mouth. The other thing that she noticed was that he was getting heavier and heavier. It was almost difficult now to pick him up because it was like lifting 19 pounds of dead weight. The one thing that was for sure was that Susanne and Moppy would not be lacking in upper body strength. People would soon start lining up for tickets to the gun show.

Susanne got home later than expected. She got so caught up in conversation with her friends that the time escaped her. Moppy called her around midnight to ask if she should set up Paxton's continuous overnight feeding. When Susanne realized how late it was, she was thrown off guard. It was after she got off the phone that Susanne and her friends realized that they were the only people left in the restaurant other than staff members. The waiters and waitresses had pretty much already cleaned up the place and reset all of the tables for the next day. Their waiter came by dropping a subtle hint that they should wrap things up. The restaurant had technically been closed since 11:30pm, but they were so kind to let the girls stay longer without saying anything. Everyone could probably see that they were having the time of their lives and didn't want to interrupt.

Susanne got home safely. She was excited to peek in on her little man and hopefully find him sleeping. When she got upstairs to see him, he was restless. Moppy had mentioned that he had some difficulties going down. Once Susanne held him to let him know she was home, he went right down. He just wanted to know his mommy was there with him before he ventured off into la-la land.

Susanne knew that the morning would come too quickly...especially since she would be losing an hour of sleep.

DON'T FORGET TO SPRING FORWARD!

Replacing Nurse Betty

Whoops! Susanne knew that Paxton was overtired from the travels yesterday, but she didn't realize that she was so overtired as well. She accidentally fell asleep and missed Paxton's 9:00pm feeding. It wasn't until around 1:00am that she came to. She knew something was wrong when she looked at the clock. It took her a minute to realize what had happened. She immediately got up, gave him his medications, and started his continuous feeding. Before heading back to bed, she also had to pump. It was going to be a long day.

Paxton had a new nurse coming by the house for Susanne to train and evaluate. She had to print out Paxton's daily schedule and the specific instructions that come along with taking care of him. He was supposed to arrive a little before 9:00am. Susanne started getting worried when he didn't show up by 9:30am. She didn't have his personal phone number to contact him so she decided to go ahead and give Paxton his morning medications and start his first bolus feeding of the day.

The nurse didn't show up until an hour after his scheduled time. He said he got lost in the neighborhood. The first thing they did when he arrived was to swap phone numbers.

Susanne liked the new nurse right away. He had a very soft spoken manner about him and seemed laid back. He took notes and asked a lot of questions when she was going through Paxton's daily routine. He was very comfortable with the Infinity pump, enteral bags, medications, and G-tube care. It helped that one of his other patients that he worked with had a G-tube as well. This would make training that much easier. Susanne would be able to trust him more than someone that had no previous experience with the MIC-KEY button.

Paxton adjusted to the new face quickly. He was so laid back and social that he loved seeing new people. The nurse did a great job of asking questions when unsure about something and he never attempted to do something for Paxton if he was not comfortable with it. Paxton slept most of the time that the nurse was at the house. He probably wouldn't get a good sense of how great Paxton was until he got to spend more quality time with him.

After the nurse left, the occupational therapist came by for an oral therapy session. As always, they started with some facial massage. Once his cheeks and mouth were all warmed up, Susanne started by offering him the oral swab. He was very receptive to it and loved to suckle on it to get little drips of water. He had grown to love the feel of it againgst his gums. It probably provided some relief from teething. After doing that for a while, Susanne offered Paxton spoonfuls of peaches and peas. He did surprisingly well with that today. He still took a long time to gain the confidence to swallow the food that was offered, but he seemed to go through the motions a lot faster. He did not spit up or gag once during the entire session. He also recovered nicely when he was struggling to clear his mouth. He was pretty much all laughs and giggles. It worked well when Susanne would offer him the oral swab between the spoonfuls of the other food. It probably helped to wash it all down.

Susanne had some new goals after todays session. She was supposed to start trying to feed Paxton in his high chair. This would encourage him to be in a more upright position instead of a more reclined position that the bouncer forced him to be in. Also, she could start teaching him sign language that he could use to be able to communicate to her if he would like "more" or if he was "all done".

Paxton went right down after therapy. He had worked hard and deserved a nap. Once he woke up, Susanne ran a few errands. She wanted to go pick up his 1-year-old photos that she had done. She was bummed to find out that the place had closed at 7:00pm especially since she got there just a few minutes after. Paxton was still connected to his feeding when Susanne was wandering around in and out of other stores. She noticed how people couldn't help, but stare. Their natural curiousity kept them from being able to look away. Susanne didn't mind because she knew it looked odd to have a tube connecting form a bookbag on her back to Paxton's stomach. Since his G-tube was covered with clothes she was sure someone probably thought it was a urine bag or colostomy bag. The entire time they were out and about, Paxton was very talkative. It was neat to hear all the new sounds he was making with his mouth.

Paxton was beat when they finally got home. He was more than ready to go down for the night. Susanne also felt exhausted and she could tell she looked it too.

DANGER! Do Not Operate When Tired

Scott got up with Susanne around 6:30am to help her pack the car so that she and Paxton could get on the road. They had to try to make it back to Virginia in time for a 3:30pm therapy appointment. It helped tremendously that the occupational therapist came to the house for the sessions.

There had been a flood warning posted for today. It was raining heavily the entire six hour drive. Weird as it may sound, Susanne welcomed bad weather. It really helped to keep her focused on the road and to stay awake. Surprisingly, she didn't feel tired on this drive. Six hours was starting not to feel so bad.

Susanne and Paxton arrived home around 2:45pm. Susanne took him straight up to bed so that he could try to get a quick nap in before his therapy session. Paxton got less than thirty minutes of shut eye before Susanne had to wake him up. She knew that it would be hit or miss whether he would be able to function through the appointment. Unfortunately, he was a little cranky and very tired. It wasn't shocking to them. It was actually completely understandable and expected. Paxton pushed through during the beginning of the session. He was sitting up better and he held up his head well. His ability to work through the exhaustion was short lived. It wasn't long before he fell asleep in the middle of an exercise. Poor little Paxton! Night! Night!

Paxton's About to Pop!

Paxton greeted the early morning with a gagging episode. He only had a mild spitting up incident and then recovered. Once he had settled down a little bit, Susanne could hear the howls and growls of Paxton's stomach. He was notorious for swallowing a lot of air throughout the day and night because he breathed through his mouth. Susanne decided to vent his stomach to see if she could relieve some air that had built up and boy did she ever. She didn't have to do much for the gas to come escaping out of his tube. It was instant relief and easy to tell that Paxton felt much better afterwards.

Susanne noticed that Paxton was cold to the touch. This was a rare occasion in his world. He usually had the opposite problem. She tucked him snuggly back in his bed. She made sure he was nice and bundled up. He fell back asleep in no time.

Today was a purely man day. Susanne and Gigi were off at work while Scott and Poppy hung out with the bug. They spent their morning eating a yummy breakfast, watching some TV, and hanging out on the couch. The three amigos had a day full of fun.

When Susanne came home for lunch Paxton was wide awake. It was so nice to be able to spend time with him and snuggle. It was wonderful to see his smiling face. He was always the highlight of her day.

Today, Paxton officially received the title of "Sir Poops A Lot". He had to be breaking world records. It almost felt like he was playing a sick game with them. The second they would change him and get him all nice and clean, he would produce another dirty diaper. He was like a machine just cranking it out like it was his job. He always seemed to feel his best on the days he had plenty of bowel movements. Today was no exception. He was smiling non-stop. He was really interactive and playful. His favorite part of the day was when he got to air dry. He loved not being confined by that stupid, old diaper. "Free at last! Free At Last! Thank God Almighty, I'm free at last!"

Scott set up Paxton's last bolus feeding for the night before he got too comfortable for the evening. As he was transferring the milk into the enteral bag, he accidentally spilled some on Paxton's face. Paxton just laid there in his crib staring up at his daddy. He didn't seem worse for the wear. Scott was initially worried and wanted to make sure that none of it got into his eyes. Once he realized Paxton was okay, it was all they could do not to laugh loudly. They needed to keep quiet to encourage Paxton to close his eyes. They knew if they got started, Paxton would have to join in the fun.

Once Paxton was good to go. Susanne and Scott planned on watching a movie together. They decided to set up shop on the floor in Paxton's room and watch it on Scott's laptop. They got just about settled when Paxton started stirring. They weren't sure why he couldn't get comfortable. He had taken a couple of good naps earlier in the day. He should have been ready to go down for the night. After assessing the situation, they quickly realized that he was full of air. The second he was picked up, he burped loudly. Scott was able to get a few more good belches out of him and even got some air from the back end when he sneezed. Paxton was smiling once his system was cleared. He had to have felt like a balloon that was about to pop. Luckily, his daddy came to the rescue and saved the day. He went down very easily after he was deflated.

Baby Talk

Paxton woke up rather smoothly compared to how he usually had. He had a very mild gagging episode, but it was not bad at all. It was a relief to not only Susanne, but to him as well.

While Susanne was at work, Paxton and his daddy watched Seasame Street and Sid The Science Kid while working on therapeutic exercises. Paxton did his best with head control and sitting up while his favorite shows were on.

After Scott and Paxton did some work, he set him up to play with his toys on his play gym. Paxton thought he was just playing, but he was really still working. He was getting so good at reaching and grabbing at the objects that were hanging above and in front of him. At times, it seemed like he was going to pull them right off the loops they were secured to.

Scott allowed Paxton to air dry as much as possible. Both Scott and Susanne were on a serious mission to resolve the diaper rash no matter what it took. It was looking much better than it had in a long time. His cough had also pretty much resolved. The humidifier had worked wonders.

Susanne was bummed that she got home late for lunch. Instead of having a couple of hours with her baby, it was now limited to less than thirty minutes. She basically had to pump and go. While Susanne was multi-tasking, Scott brought Paxton over to her for a quick visit.

Scott had recently purchased a bag of Easter candy Robin Eggs. He decided to offer one to Paxton to see what he would do. It was hilarious. Scott held it right up to Paxton's lips. He was unsure at first, but quickly realized that it was sweet. Almost immediately, they could see his tongue creeping forward for a taste. He was addicted. He didn't even care that the candy coating on the egg was coloring his lips a manly shade of blue! At this point, Scott and Susanne didn't care what Paxton was interested in tasting. They just wanted him to start associating positive experiences with eating. Hopefully, over time Paxton would learn how to eat by mouth. This continued to be a struggle for him on a daily basis.

For some reason, on the days that Susanne had to work it seemed like Paxton didn't like to go down for his naps. He was used to having at least three naps per day. Unfortunately, he was zero for three today. On the flip side, Scott felt like Paxton was more active and more vocal than ever before. He was attempting to make different sounds, moving his tongue around a lot and figuring out different noises that he could make when it was in different positions. Sometimes it even seemed like it startled him when certain sounds came out. He was exploring his mouth and enjoying what he found.

When Susanne got home, Scott had to focus on writing up a syllabus for his first class tomorrow. It would be his first time ever teaching and he was excited. This would be another thing he could add to his repertoire of experience. Losing his previous job wasn't going to get him down.

While Susanne worked on making dinner, Paxton sat in his big boy stroller. He looked so good sitting in a more natural position instead of being more reclined in his car seat. Paxton loved watching his mommy cook. Even though Susanne LOVED to cook, she was definitely ready to sit down after a long day.

Get 'Er Done!

Today, Scott and Susanne were supposed to watch Cole and Parker. They would also have Paxton to take care of. Talk about diving all in. They were for sure going to get a taste of what parenthood would be like with more than one child.

Susanne got the message bright and early that Parker had acquired a fever overnight. This was so strange especially because he seemed to have felt just fine last night. Susanne and Scott immediately started worrying about Paxton's exposure to whatever Parker currently had. Parker had been up in Paxton's face trying to make him laugh all night. There had to have been definite sharing of some sort of germs. They would just have to wait and see if Paxton was clinical in a few days.

Since they didn't have to babysit the boys any longer, Susanne and Scott would be forced to get things done. Paxton also encouraged them to get things done by sleeping extra long after his morning playtime.

Once he was awake, they all headed out to run some errands. As a treat, they went to Sonic, which was one of the few true drive-in restaurants, for a late lunch. Susanne had seen a commercial for their new selection of specialty hotdogs. She had been so disappointed with her last hotdog experience in Boston that she needed to recover from it by having a do-over. It was an excellent choice. The hotdogs that they selected were all very delicious and well worth it. Susanne and Scott couldn't wait until Paxton could enjoy some of the small joys in life like yummy food.

Susanne was thrilled at how much she was able to get done with Scott's help last week. There seemed to be more and more reasons that him being home most of the time was a positive thing.

Susanne decided to make a fancy dinner for everyone this evening. She made pork chops for the first time, which she stuffed with spinach, sundried tomatoes, and goat cheese for everyone but herself. She made homemade mashed potatoes and baked asparagus. It turned out beautifully. It was the perfect meal to eat during "The Bachelor".

Paxton's New Room

For some reason, Susanne went to bed close to 4:00am. Right as she was just putting her head down on her pillow, Paxton started to rustle around. He couldn't get comfortable and needed his mommy to make it all better. Susanne pretty much pulled an all-nighter by the time she fell asleep.

Susanne thought that Scott should get up to turn off Paxton's continuous feeding so she could get a little extra sleep. Unfortunately, Susanne ALWAYS had to wake Scott up for him to take care of Paxton if he was still sleeping. He was such a deep sleeper that he wouldn't wake up for anything. Not even for a screaming baby. After taking time to adjust, he would eventually get up to take care of Paxton. He was shocked how quickly the time flew by. Not even an hour later, he had to get up to start Paxton's next feeding for the day. It was hard to motivate him especially the second go round. He was still adjusting to this new way of life. Paxton's schedule was a little off, but hopefully they would be able to catch up by the end of the day.

Susanne and Scott noticed that Paxton's diaper rash was worse. He had little ulcers on his rear end. They had tried different types of Destin, Butt Paste, Baby Powder, A+D ointment, Calmoseptine, Medline Remedy, Domeboro packets, Arbonne's Herbal Diaper Rash Cream, Aquaphor...etc. They had even attempted to air him out a couple times a day. He would lay on layers of towels without his diaper on so that his skin could dry out. This was supposed to help the ulcers heal faster. Unfortunately, they weren't seeing any improvement.

Scott and Susanne spent the rest of the day trying to reorganize and rearrange the room that Paxton was staying in. They needed to try to make more room for all of his things. Even though he was only 13 months old, he had accumulated so much stuff. The sad part was that this wasn't even the half of it because most of it was still up in VA. They weren't sure how it would all fit, but somehow they would make it work.

After a full day of hard work, they all went over to Aunt Leah's house for Mexican Night. Leah had made a delicious spread that included chicken fajitas, spicy black beans, chips, and her homemade salsa. Yum!

Parker had a lot of time to play with Paxton. He made Paxton laugh on multiple occasions. It was so sweet to see them interact. Parker really had such a sweet, gentle demeanor about him.

Date Night

Paxton was up once at the end of his continuous feeding, but he immediately went back down. After that he slept until after 11:00am, which was weird. He must have needed it.

Today, Susanne and Scott worked on gathering information for their taxes. They had never been as motivated to do this as they were this year. They were in desperate need of money and this would hopefully provide them with some sort of financial help. They had a lot of different items to go through. They had to consider a long list of things that they hadn't had to worry about in the past. It was truly challenging. Paxton being born and the fact that he had multiple medical issues changed everything. Even after a few hours of hardwork and sweat, they decided they would just have to come back to it again on a different day. It would drive them crazy if they didn't walk away.

Later in the afternoon, Scott spent some time training Susanne's parent's dog, Jack. He was well behaved and obedient most of the time. The one thing that they all wished he would do was to come when he was called. Susanne's parents had a huge fenced-in backyard. If Jack were outside and they called him to come in, he would run the other way. He thought that it was all fun and games. He wanted someone to come outside to chase him no matter that time of day it was. After working with him a short time, he seemed to catch on. If Scott could just keep up with the training, Jack would be a new dog in no time.

During Paxton's oral feeding therapy session today, Susanne and Scott decided to introduce Paxton to some new food. The new choices were pureed peaches and pureed peas. They were excited to see his response. Susanne started the session with some facial massage. It was always a good idea to wake up those muscles. Susanne offered him an oral swab first. He was surprisingly interested in it. He was now starting to open his mouth more to receive it and actually suckle around it. He made the cutest sounds when doing this. Once he got comfortable with the oral swab, Susanne offered him fresh banana in his fresh food feeder. This was Scott's first time getting to see him in action. He was so proud of his little nugget. Paxton would mush the banana around between his lips. He didn't seem to mind it when it was offered this way. If he were to get pureed bananas, that would be a different story. After he proved that he was receptive to the things that Susanne had offered him thus far, she tried peas. He did better than expected. He seemed puzzled by the flavor, but didn't gag once. After about five spoonfuls, Susanne moved onto peaches. His face said it all. He scrunched his little nose in response to the tart flavor. It was definitely not as bland as the peas. After his brain wrapped around what was going on, he seemed more interested. Once he had taken about five spoonfuls, Susanne decided to stop. She wanted to end on a good note. She finished the session with offering the oral swab again. He immediately took to it and went to town. Eating and swallowing was still a major challenge for Paxton, but hopefully with time he would get the hang of it. For now, Susanne and Scott would just enjoy the small victories.

Tonight was going to be a special treat for Scott and Susanne. Gigi and Poppy offered to watch Paxton so they could go out on a date. They encouraged Scott and Susanne to try to have some good quality time alone together. Of course, they chose a Mexican restaurant to have dinner. That decision was a no-brainer. After a tasty meal and a few cocktails, they went to the movies. Out of all of the choices out there, "The King's Speech" had caught their attention. Any movie that received the "Best Picture" Oscae had to have some substance. It proved to be an excellent choice even though Susanne couldn't keep her eyes open for a small portion of it. Unfortunately, this was one of her trademarks. She sometimes had difficulty staying awake for movies, especially if it was late at night. Nonetheless, they had a great time together. It had been quite a while since they had gone out on a date. Hopefully, they would start making a habit of this.

Fun Day Friday

This morning, Paxton woke up right at the end of his continuous feeding. This was becoming a pattern for him. He usually would start by stirring in his crib. It would eventually turn into a whimper, then a cry. It would escalate to gagging followed by spitting up. On certain days, it would take him longer to recover than others. On average, it took a little over thirty minutes to completely settle down. Once he had a chance to regroup, he would be ready to go back down for another nap.

Today, Paxton would not be able to sleep in for long. He was heading out of the house with his mommy and daddy for some errands. Scott had applied for a teaching position at the local community college during the previous semester, but was not contacted for any open positions at that time. Today he had a meeting with the head of the department of Social and Behavioral Sciences who had contacted Scott for an interview to teach a couple of psychology courses during the second 8-week term. It would only a part time gig, but anything would be helpful at this point given Scott's recent unemployment. The best part would be that being a teacher had been one of Scott's lifelong goals. He was hired for the position and could now check another goal off of his list.

When Scott was finished it was time for Susanne to go in for her first massage through the community college. Scott had kindly signed her up for one after he had received one last month. They had a sweet setup where you could receive massages from the students finishing their coursework in massage therapy. It was a tenth of the cost of what a normal massage would be. It was a perfect chance for the students to get more experience and Susanne to get some much needed pampering. It was definitely a win-win situation.

While Scott and Paxton waited for Susanne, they laid in the grass enjoying the breeze. Scott immediately noticed that Paxton was fascinated by the trees. It was very relaxing and helped to keep things in perspective. Unbeknownst to Scott, Paxton was an instant chick magnet. The entire time he was hanging out with the Bug, the female students oohed and awed over how cute they looked together. Scott sure didn't complain about the extra attention.

After they got home, they put Paxton down for a quick nap. They were hoping he would get a little shut-eye before their next outing. The three of them were meeting Aunt Leah, Cousin Parker, and Cousin Cole out for "Free French Fry Friday" at Chick-fil-A. When they arrived, they played in the indoor playground. Parker had a blast sliding down the slide over and over with his Aunt Susie. When they weren't the ones going down the slide, they hid and scared Aunt Leah and Cole as they came out of the covered portion of the slide. Paxton enjoyed watching everyone be silly.

Once they worked up an appetite, they went inside to eat their free french fries. They were delicious.

Later that evening, Susanne and Scott thought that it might be a good idea to work off some of the extra calories that they had ingested at lunch. They took both dogs and Paxton on a long walk. It was so wonderful to get some fresh air.

When they returned Paxton was ready for bed. Scott got him situated for the night while Susanne prepared dinner. Black bean enchiladas with homemade roasted salsa verde. They were finally able to sit down and eat. They caught up on Survivor and snuggled on the couch. What a perfect end to a perfect day!