Breath of Fresh Air

Last night was the first night that Susanne got to try out her new dual bottle warmer and bottle cooler. It was specifically designed to make nighttime feedings easier. She knew it would be more convenient, but she didn't know that it would change her life. Gigi was introduced to this phenomenal invention at the last baby shower she attended. She decided to get it for Susanne for this trip to Boston to hopefully make her life easier. She knew that everytime that Paxton needed a feeding, Susanne had to go from the third floor to the first floor to get the enteral bag and formula from the refrigerator. In order to heat the formula up, she would have to either run it under warm water or place it in a cup of warm water and wait until it reached the appropriate temperature. If Paxton was due for any medications, then Susanne would have to go down to the basement to retrieve the medication bag, pull up the medications, and bring the bag back down to the appropriate refrigerator. During the day, this wasn't such a big deal, but late at night was a different story. Now she could keep Paxton's enteral bag and evening feedings cold until it was time for them. When she needed to warm them, she just had to add water to the warmer and it would steam the bottle within seconds. It was brillant!

Susanne had to get up at 6:00am because she knew it would take her close to two hours to get everything ready and packed for the trip over to the hospital for Paxton's day of pre-op workup. She had to keep in mind that it was also a fifteen minute walk from the Yawkey House to Children's Hospital Boston. Susanne pumped first and then was going to hit the shower next. Unfortunately, both showers on their floor were occupied. She had to wait for over ten minutes before one became available. When she returned, she went to put on her makeup and remembered that she had run out of foundation the day before. Susanne didn't fear because she knew that Moppy had stopped by the mall yesterday to pick her up a new supply. When she asked Moppy for it, Moppy couldn't find it. She looked high and low for the foundation, but it was nowhere to be found. Now Susanne had to move into emergency mode. There was no way she could go an entire day without makeup...that was just a sin. They would ABSOLUTELY have to stop by CVS on their way to the hospital to find a substitute.

They were about five minutes late, which was mainly due to the difficulties they had with navigating the stroller through the ice and snow on their way to the hospital. Susanne had to first register Paxton for outpatient services in the admitting office. Luckily, this was the only appointment she had to go to without makeup on. Even though it was difficult, she survived. While they waited to be called back for their first appointment, Susanne had a chance to get dolled up. She felt much better after that.

At their next appointment, they were required to review Paxton's history in its entirety. This was no small feat. Susanne had to recall all of the details by memory because she didn't bring any of Paxton's medical histroy with her this time. It took her brain a few minutes to warm up, but then she was back on track.

Next, the nurse assessed Paxton. He weighed in at 18lb 1oz with his height being 29 inches. His oxygen saturation levels averaged around 92, but it went up as high as 96. He usually averaged in the high eighties, so this was impressive. His ECG looked comparable to what it had been in the past. Everything else checked out well, so he got clearance for the next phase of the pre-op workup.

While Moppy and Susanne waited to meet with the anesthesiologist, Susanne colored a picture for Paxton for Valentine's Day. It was a page of small hearts. She decided to go with a color scheme of reds except for the center heart, which she colored bright yellow. This was symbolized Paxton. It not only stood for his unique heart, but him as a whole. He stood out like a bright, shining star in a sea of others. His warmth emanating from deep within in him. Susanne was so proud of her sweet, baby boy. She was so blessed to have him as her special Valentine.

They met with the anesthesiologist and discussed in detail the plan for Paxton's surgery day. Susanne was able to ask questions and remind them of Paxton's medical issues. She made sure to request that they watch him extra closely after he was extubated because he couldn't swallow. Paxton didn't have a normal oral phase to his swallowing. He could only swallow as a reflexive response. There were definite times where he would panic and almost seem like he was drowning in his own saliva. This was by far Susanne's biggest concern this go-round. She wasn't sure how Paxton would respond to having his cleft palate closed, and still have to deal with the secretions in the back of his mouth with no escape route. She was sure that he would have even more saliva and some blood to handle after surgery because the surgery site was in his mouth. She was praying that his recovery from anesthesia would be uneventful. The doctor appreciated the reminders about Paxton's unique situation because not all children that had Pierre Robin Sequence had difficulty swallowing and definitely very few had additional heart disease.

After they were finished with the anesthesiologist, Moppy and Susanne were sent back out to the waiting room. This time it felt like they waited a lifetime for the next appointment. They were verbally informed of the plan for the actual procedure. They were given specific instructions about when to discontinue his normal feedings, when to discontinue his medications, when to feed him Pedialyte, and where to show up. Susanne was familiar with this whole process so it wasn't anything new.

Around 3:00pm, they were finished with all of the appointments. Moppy and Susanne finally got to eat some lunch. Susanne set Paxton up with his next feeding and he ended up falling asleep in his stoller. He had such a long day and was tuckered out. Even though he was all covered up, everyone seemed so interested in him. Some people even requested to see what was underneath the shade so they could sneak a peek. Everyone's response was always the same. They were all caught off guard by his cuteness. He was becoming a lady's man and he didn't even have to try.

Paxton didn't stay asleep long in his stroller because he could never get comfortable in that thing. Once he was back to the room, however, he fell asleep right away and napped the rest of the afternoon.

Moppy and Susanne decided to order in so they wouldn't have to take Paxton back out in the cold weather. The one place that they chose, wasn't delivering that night. This hardly ever happened, per the person that answered the phone, but it was just their luck. When they thought there was no hope for dinner that night, someone made a delivery of turkey wraps as a donation to the house. It couldn't have come at a more perfect time.

During dinner, Susanne and Moppy met a family that had been there for a couple of months. The daughter was suffering with something known as a neurogenic bladder and bowel. Usually, it was something seen in patients with spina bifida, but she didn't suffer from that condition. The doctors really couldn't find a reason for her to have the problems she had. The problem wasn't discovered until she was six years old. She was now eleven and had undergone numerous procedures to help her try to manage her bladder and bowel dysfunction. Unfortunately, the doctors had to resort to placing a colostomy bag and urine bag. She also had a G-tube, much like Paxton's, in order to be able to receive enough nutrition on a daily basis to maintain her weight. She had an amazing presence about her. She was very outgoing and precocious. She had an extremely positive outlook on life even though she had every reason not to. It was like a breath of fresh air that came at a perfect time in Susanne's life. God had such a funny way of working at times and Susanne was thankful for that.

My Funny Valentine!

Boston Bound...Again

It was warm and cozy when Susanne woke up. It was a nice change from the night before. She was so comfortable that she didn't want to get out of bed, especially since the cats were so snuggly. The morning came too quickly, but there was nothing she could do about it. There was no time for her to mess around. She had a lot of packing to do before she flew out this afternoon.

Luckily, the continuous feeding overnight helped her out some because she didn't have to get up at 6:00am. It gave her a little extra time to sleep even though his feeding finished around 7:30am. Paxton was sleeping heavily when she went in to disconnect his feed. He was out cold and didn't budge one bit. At least one of them was getting some rest.

Susanne tried to finish packing, but it was challenging. She found that it was hard to consolidate all of the items that were necessary for the trip. For some reason, she kept getting interrupted. In particular, the telephone would not stop ringing. Susanne had thought about not answering any of the calls, but she knew they were all important in their own right. One of the phone calls was from the pharmacy where Moppy was trying to pick up Paxton's prescriptions. Susanne had been going to the same place over the last year for all of his medications. For some reason, on the day they were flying out to Boston there was a problem. They were having issues with the insurance that they had on file. Susanne made sure that they had the correct information before getting worked up. The pharmacy technician tried to resubmit the request, but it was denied a second time. By this point, the girl was not interested in helping Susanne out any longer. She just wanted her to pay the full cost of the drugs so that she could move on with her day. Unfortunately, she didn't know who she was messing with. Susanne stuck to her guns. She knew something was amiss. Susanne requested to speak with someone else. Within a minute of the new person investigating the problem, it was resolved. Susanne was beyond frustrated with the entire situation. To make it worse, Moppy told Susanne that the original person helping her didn't want to dispense the aspirin because she said that Paxton was too young for that medication. Was she a doctor? Did she not she the prescription request for that medication from Paxton's cardiologist? Paxton was required to be on that medication. It didn't matter what she thought, it wasn't her choice.

Moppy finally arrived at Susanne's house. It was much later than both of them had expected. She stepped up right away with helping Susanne sort through everything. She was able to finish taking care of the little odds and ends while Susanne moved things from suitcase to suitcase until it all fit. Julie showed up right on time to take them to the airport. Everything was ready to be loaded in the car with the exception of Paxton. Susanne just had to change his outfit and strap him into the car seat before they headed out. They were so thankful that Julie was available to transport them. It helped them out tremendously. Caleb came along for the ride, but was sound asleep the whole way there. Paxton enjoyed his company nonetheless.

They got to the airport and checked in right away. It was pretty vacant so they knew they would have plenty of time to get to the gate. They were flying JetBlue again because it was one of the few airlines that flew direct to Boston. It was also the cheapest option in most situations.

Paxton was fighting falling asleep the entire flight. It was the first time that he didn't sleep a wink in the air. She was hoping that once he was back in his stroller he would settle. He didn't cry or scream at all. It was so nice that she hadn't been "that girl" with the baby that made the flight unbearable.

Right on cue, Paxton graced them with a dirty diaper as they were landing in Boston. Susanne remembered the mess he had made every time before so she was cognizant of her every move. When she finally got to a restroom, she realized her efforts were futile. Paxton had managed to explode out of his diaper and up his back just like last time. It was so bad that it even soaked through his outfit onto his car seat lining and even the straps. It was a given that they would have to do a load of laundry tonight.

Moppy and Susanne took time to grab a bite to eat at the airport before jumping in a cab to get to their final destination. It was nice to finally take a moment to regroup and relax. They met some very nice people while eating dinner. Everyone was in awe of what Paxton had been through. They took note of Paxton's incredible strength and, of course, good looks.

After dinner, they headed straight over to the Yawkey House. Once they checked in, they had to get right to work. They had to get Paxton set up with his next feeding and administer his next set of medications. He was due for another diaper change, but thankfully didn't need an outfit change again. Doing a load of laundry was a must. They had to include the car seat cover as well. They could only hope that it would be dry by the morning before they had to head out for his 8:00am appointment. By the end of it all, it took them almost three full hours to get to a point where they could sit down. It had been a long day. They couldn't wait for their heads to hit their pillows.

Brrrrrrrrrrrrrrrrrrrrrrrrrr!

Susanne worked half of a day at work today. She had to head back to VA tonight because she was flying out tomorrow to head up to Boston for Paxton's next surgery. She didn't end up getting home until around 1:30pm. Poppy helped Susanne try to expedite the process of getting on the road so that she could get home as quickly as possible.

Even with help, Susanne didn't get on the road until 4:00pm. It was always such a production to go anywhere. She was getting tired of living out of a suitcase, but she didn't have much choice. Since she had been doing it for so long, she thought that the process would be shortened....obviously not.

She decided to pack a bag of tasty treats for the trip. She didn't take the time to eat lunch when she got home because she just wanted to get on the road. She made sure to take enough to tide her over for the whole way. After filling her tank up with gas, she decided to get a large sweet tea from Bojangles as the last addition to her collection of treats. She hadn't had sweet tea in so long and was looking forward to it.

Just like always, she had a six hour drive to get through. She did surprisingly well for not getting a lot of sleep and working half of a day. The frustrating part of the drive was that she was on the phone the entire time. She usually enjoyed this, but not when the phone calls were mainly focused on the recent water heater issues. She went back and forth between the home warranty company, the insurance company, the claims adjuster, the water mitigation company, and the heating and plumbing company. She was trying to figure out who was going to cover the water heater pan that was damaged. The home warranty company said that they would cover the water heater after the deductible was met, but not the pan. The insurance company said they would not cover the water heater after the deductible was met, but only the water damage that occurred from the water heater. If the pan was cracked due to wear and tear, then it would not be covered. Everyone was throwing their hands up and no one wanted to take responsibility for it. It made it difficult to get in touch with people because it was after hours for most people. The main problem was that the gentleman that was replacing the water heater was at the rental property and needed to know what to do. In addition to all of the chaos, Paxton was crying in the back seat. Susanne could feel her blood pressure rising out of frustration and had to pull over. Her temper was getting short with people that were not being helpful. She took a moment to breathe deeply and take care of Paxton. He always made everything better. She changed his diaper and held him for a few minutes. Once he was settled, she strapped him in and got back on the road.

When Susanne finally arrived home, she immediately noticed that it was colder in the house than usual. She had purposely turned the heat down while she was away, but this was way too cold for what she had set it at. She checked the thermostat right away. It read 42 degrees. She checked the setting, which was still reading 60. For some reason, the heat wasn't working. Could it be broken? She noticed that the sign for low batteries was blinking. She was hoping this was a quick fix. She switched the batteries out for new batteries that she had found in a drawer. Unfortunately, nothing changed. She called Scott to get some advice. It was way too cold for her, let alone Paxton. She decided to leave him in the warm car until she figured things out. She tried probably five sets of batteries from other functioning electronic devices and other batteries that were from a previously opened pack. She tried messing with the day and time on the thermostat. She tried adjusting the programmed heating schedule. She even tried to look in the basement at the furnace to see if the pilot light was on. No matter what she tried, nothing worked. After an hour and a half of trying to figure things out, Susanne was frozen to the core. She could no longer feel her feet and she was shivering. She could tell the cats were not happy either because they were balled up as tight as they possibly could be and didn't budge from their chosen spot. Susanne called the emergency number to the gas company to see what she should do. They informed her that they could not help her and she would need to call a HVAC company for assistance. Susanne tried calling Moppy and Chief to see if they could come over so a second pair of eyes could glance at things. Eventually, she couldn't stand it anymore. She had to get out of the house. She was going to have to ride around in the heated car until she figured out what to do. If the heat was truly broken, she would have to find somewhere else to stay tonight. This was not in the plans. It put a major damper on things especially since she still needed to pack for her trip to Boston. Packing for a week and a half for anywhere was a big undertaking. To do this for not only herself, but a child whom had medical issues on the actual day of travel would be a nightmare.

As she was driving, she thought that she might as well go to the grocery store and purchase a fresh set of batteries that were UNOPENED just for the heck of it so she could truly say she tried everything. Out of the two grocery stores that were close-by, she happened to choose the one that was closed. Luckily, the other one was open 24 hours, but now she had to drive out of her way to get there. By the time she got home it was now close to midnight. She prayed that this would solve the problem. Once she inserted the batteries into the thermostat, the flashing low battery sign stopped. Hallelujah! Praise the Lord! The heat kicked on immediately. She didn't understand why the multiple sets of other batteries didn't work, but at this point, she didn't care. The thermostat now read 40 degrees. She couldn't wait to get warm.

She started her unpacking process by bringing Paxton in first. She got him squared away in his bed before moving on. He actually appreciated his cold bed. She prepped his next feeding and caught him up on his missed medications. Next, she turned on the heating pad to warm up a spot on her bed for the cats. They caught on quickly and planted themselves right in the middle of it. It was easy to tell that they were ready to cuddle. She was shocked to discover how hard her Tempurpedic was due to the temperature. It was as solid as a rock. She was hoping it would soften up some before she had to climb in. She knew that wouldn't be for a while so she wasn't worried.

A load of laundry was started and the cat litter was scooped. She listened to the eleven messages that were on the answering machine. After one hour of the heat starting up again, it had only warmed up by five degrees. It was going to be a while before the place truly warmed up. Somewhere in the middle of all of this, Susanne scarfed down some dinner. She pumped to try to stay on somewhat of a schedule and then the packing began. She had to unpack just to repack for the next trip. She had to call it quits by 3:00am or she wouldn't survive tomorrow. Hopefully, she would get it all done.

On The Night You Were Born

One of Susanne's dearest friends gave Paxton a special book for his birthday that was worth sharing with everyone. The moment Susanne read it, she knew that it had been written just for him. It really grabbed her in a way that no other book had since he was born.

"On The Night You Were Born"
By: Nancy Tillman

On the night you were born, the moon smiled with such wonder that the stars peeked in to see you and the night wind whispered, "Life will never be the same." Because there had never been anyone like you...ever in the world. So enchanted with you were the wind and the rain that they whispered the sound of your wonderful name. The sound of your name is a magical one. Let's say it out loud before we go on. It sailed through the farmland high on the breeze...over the ocean and through the trees...Until everyone heard it and everyone knew of the one and only ever you. Not once had there been such eyes, such a nose, such silly, wiggly, wonderful toes. In fact, I think I'll count to three so you can wiggle your toes for me. When the polar bears heard, they danced until dawn. From faraway places, the geese flew home. The moon stayed up until morning next day and none of the ladybugs flew away. So whenever you doubt just how special you are and you wonder who loves you, how much and how far, listen for geese honking high in the sky. (They're singing a song to remember you by.) Or notice the bears asleep at the zoo. (It's because they've been dancing all night for you!) Or drift off to sleep to the sound of the wind. (Listen closely...it's whispering your name again!) If the moon stays up until morning one day, or a ladybug lands and decides to stay, or a little bird sits at your window awhile, it's because they're all hoping to see you smile...For never before in story or rhyme (not even once upon a time) has the world ever known a you, my friend, and it never will, not ever again...Heaven blew every trumpet and played every horn on the wonderful, marvelous night you were born.

Bacon Cheeseburger with Fries Oh Me Oh My!

Everyone started stirring a little after 8:00am. Susanne had been the only one that had been up prior to that to feed Paxton. Aunt Leah, Parker, and Gigi helped Susanne and Scott clean up the house a little bit before getting on the road. Scott and Susanne knew that they would be far behind them. They had so much to do before they could even consider heading out.

Paxton had a low key day. He played on his play gym while Susanne and Scott packed. Susanne had to go through stacks and stacks of papers to make sure that she did not overlook any bills or items that needed addressing this week. Also, she spent some of her time trying to get in touch with the heating company that was supposed to call her yesterday to address the leaking water heater at their rental property. This was the second time that this had occurred in less than one month. Everything always seemed to pile up at one time. It was a lot for her to worry about especially with the week she had in front of her. She was driving back to NC today. She would be working Tuesday and Wednesday. Then, she would have to drive back to VA on Wednesday night just to turn around and fly out to Boston on Thursday for about two weeks. The stress of dealing with anything outside of her norm was difficult for her. She wanted to be able to focus on Paxton and his upcoming surgery. She wanted the rest of the world to just stop for a moment.

Susanne and Scott finally got on the road almost five hours after Leah, Parker, and Gigi left. The only hold up at this point was that they still had to get gas, eat some dinner, and stop by the townhouse to take pictures of the water damage before they could start their journey back to NC. Susanne had decided to finish out the week celebrating Paxton turning one by continuing her dairy and soy filled binge marathon. Her request for her first meal out that had no dietary restrictions was her favorite bacon cheeseburger and fries from TGIFriday's. Susanne and Scott had done years of research on who made the best bacon cheeseburger. Time after time, they always seemed to pick this one. Susanne was so excited for the first bite. When it finally came, she was in heaven. Oh, how she had missed cheese.

Susanne was driving in hopes that Scott could get some work done during the drive. This didn't last long. Recently, anytime Susanne drove she would start to fall asleep. It was like a Pavlov's response. Within the first two hours of the drive, they had to switch. Scott encouraged her to take a nap for the rest of the trip. After a delicious treat of ice cream, she closed her eyes. Susanne had not had ice cream for far too long. This was probably her favorite thing in the whole world. She was enjoying her reintroduction to dairy and soy all too much. She just hoped that Paxton would enjoy it as well. She would know soon enough.

Black Cloud

It felt like a black cloud was following Susanne around today. The only positive to her day was that her wonderful husband took over Paxton's midnight and 6:00am feeding so that she could catch up on some much needed sleep. She got a total of eight hours of sleep, which was the most she had had for well over a year. It felt sooooo goooooooood. Also, waking up to Paxton's sweet face didn't hurt either.

Paxton managed to poop through two of his outfits within the first hour he was up. He wasn't up long before he was ready to lay back down. Susanne's morning was busy with phone calls. She had to contact the home warranty company to follow up on a new claim about the water heater at their rental property leaking again. It was supposed to have been fixed back in January when it happened the first time. According to the heating company that went out to the house yesterday to assess the problem, the water heater needed to be replaced completely. She was trying to expedite the process so that her tenant would not be without hot water for long. Also, she had to call to place a claim with her homeowner's insurance about the ceiling and floor damage that had occurred. They set her up with a water mitigation company to help dry out the home to prevent molding. She was on the phone with someone from their company throughout the day. Hopefully, they would get out to the house by tomorrow morning.

Scott informed Susanne last night that Paxton was going to run out of Furosemide after his morning dose this morning. Luckily, Susanne had a prescription on hand so that she could have it filled here in NC. Her first opportunity to venture out of the house was right before Paxton's 3:00pm feeding. She thought for sure that she would be back before it was time to set him up. Unfortunately, when she went to pick up his medications she found out that Paxton's health insurance had been cancelled. She only found this out after calling them directly to see why she was being required to pay for the medication completely out of pocket. The news was shocking. She decided that instead of trying to figure it all out at the pharmacy, she would just pay it and investigate later.

Her next adventure was to try to find some new outfits for Paxton. He had outgrown the majority of his clothes at this point. It sounded like an easy task, but it was anything, but that. He required outfits that would allow Paxton's G-tube to be easily accessible. Any onesie that snapped between his legs or outfits that only buttoned around the legs were not user friendly. Separates were okay, but they increased the chance of his G-tube being caught on something since there was nothing protecting it. The ideal option was the infant footed pajamas that buttoned all the way down. Susanne had made the mistake before of buying the footed pajamas that zipped. This was definitely problematic. Susanne ended up conceding and purchasing a variety of styles for Paxton, despite them not being what she was looking for. She guessed desperate times lead to desperate measures.

It had started sprinkling when Susanne left the house. Now, it was pouring. She was struggling already to get around with a broken toe, but the rain made it that much worse. She was very glad to get home and so was Paxton. Paxton was ready to go straight to bed when they walked through the door. He could hardly keep his eyes open while Susanne changed his diaper and dressed his G-tube to prep him to go down. Susanne was ready to put her feet up as well. So much for a nice relaxing day to allow her toe to heal. Her doctor would not be pleased with her.

Susanne was looking forward to "The Bachelor". She knew that could cheer her up.

Come Join the Swarm

Paxton had his big birthday bash today. It was such a great way to celebrate him turning one as well as acknowledge all the trials and tribulations that he had overcome. What a remarkable little guy. For his first birthday, he had a bug themed party. This, of course, was in honor of him being known as "the bug". The decorations were made to make the guests feel like they were outside. There were areas that looked like grass with flowers strewn about and bugs crawling everywhere. There were also ladybugs and bumblebees flying around. All of the food was insect related. He had bug infested cupcakes, dirt cake with worms, bug shaped brownies, chips to dip in bug guts con queso, bug juice punch, cocoon shaped cookies, ants on a log, caterpillar shaped sub sandwiches, a variety of different munchable larvae, and much more. The cake for all of his guests was decorated to resemble a ladybug and his very own special birthday cake resembled a bumblebee. The fact that the icing was yellow and black would make it extra interesting when it was time for him to dig in. Even his birthday outfit was made just for this occasion. Susanne's good friend, Brandy, handmade a shirt with the number one, a snail, and his name on it. She made him a reversible bib with a cupcake on one side and the letter 'P' on the other side. She surprised Susanne by including a party hat that matched everything and a handcrafted plate for his birthday cake to sit upon. She really knew how to make Paxton's day even more memorable. It was the perfect touch. As guests arrived, his gift table filled up quickly with parcels of love from all of his favorite people. Each one with its own special meaning. Everyone was so thoughtful with their choice. Paxton was one lucky boy. Each child got a head bopper to wear during the party. The little girls had ladybug antennae and the little boys had bumblebee antennae. Everyone looked adorable with the new addition. Susanne and Scott started off the party with a few games for the children. They had all of them line up to play the bug toss. The goal of the game was to try to toss a ball through the holes on the front of the board. Each cut out had a different point value associated with it. Each child got to attempt to score points about fifteen times a piece. At the end, whomever had the highest number of points won. Everyone got prizes, but the biggest one went to the winner. They also had a spider leg ring toss. The goal for this game was to try to toss five rings on any of the spider's eight legs. The person with the highest number of successful throws won. Later, the children went on a bug hunt. They had to search around high and low to look for the insects that were hiding out. Whomever found the most creepy crawlys was declared the winner. After all of the fun games, Scott had everyone gather into the main room. He had prepared a video to highlight the first year of Paxton's big adventure. It was the first time that anyone had seen any of the videos that Scott and Susanne had taken of Paxton. It was a nice way for them to see some of what their journey had been like and how a lot of Paxton's firsts were celebrated a little differently than most babies. It was very emotional, but reason to rejoice. They had all come such a long way. Even though they had an even longer road ahead, they were so thankful to still have their baby boy alive and fighting. Once the video was finished, it was time to really celebrate and for Paxton to get down and dirty. He was fresh from a nap so they knew he would be ready. Susanne lit the candles and everyone sang at the top of their lungs. After Paxton made a wish and the candles were blown out, he was free to dig in. He initially just patted the cake with his hands. Eventually he brought his hands to his mouth. One taste of that icing and he was sold. He kept his hand in his mouth for a long time. He used his tongue to lick the sugary sweetness. He did much better than expected, especially since he didn't eat anything by mouth with the exception of the pureed foods during therapy. He was one happy birthday boy. It was so entertaining to watch him destroy his cake. It took him a while to get started, but once he got the hang of it, the cake had no chance. Once Paxton was all cleaned up, it was time to open presents. Paxton's cousin, Parker, helped him. He would pick out which one Paxton should open next and help him tear into it. Susanne and Scott were overwhelmed with the generosity of their family and friends. They were so lucky to have such awesome people in their lives. As the party came to an end, Paxton was ready for another nap. He said farewell to all of his guests and handed all of his friends their party favors. He had picked out a small flower pot and filled it with a pouch of flower seeds to plant in the spring, Create-A-Bug fruit snacks, Bug Bite crackers, ladybug bubbles, a magnifying glass to hunt for bugs, and an insect finger puppet that could also function as a pencil topper. The party was a huge success. Years from now, Paxton would be able to look back on all of the pictures from that day and know just how very much he was loved.

Party Foul

Paxton woke up gagging and coughing right before his 6:00am feeding, however, he didn't vomit at all which was a nice change. Susanne had Paxton in tow with her as she prepped his feeding and medications. Walking around with him always helped him to wake up more. Once he came out of his lazy hazy daze, he always recovered faster and, in turn, settled down. He immediately fell back asleep once she finished hooking him up to his pump. It wasn't until his next feeding that he woke up again. Susanne took advantage of this opportunity to play with the little guy and work on some much needed therapy. She was finding it hard to be consistent with scheduling time to work on his oral motor and motor therapy skills like she used to. All of this traveling and now working again part time, left her with less time than she already had. She would have to figure something out so that this didn't negatively affect Paxton.

He wasn't interested in playing for long at all. The days they spent traveling always took a lot out of him. Usually it would take at least 48 hours before he would fully recover. He was so exhausted from yesterday that he was napping a lot. He slept right up until it was time for his actual therapy session with his occupational therapist. Susanne thought that he would be ready to rock n' roll because he was well rested. Once again, Paxton liked to prove her wrong. He was very lazy during the session. He was not really engaged at all. They tried to get creative with what they were doing with him, but nothing seemed to work. Susanne decided to take this opportunity to discuss her concerns about Paxton. She felt like he had reached a plateau. She did not feel like he had really improved for a long time. She inquired about the need for adding in additional therapy sessions as well as receiving other services from private practices. The therapist thought that this would be a great idea. She was going to try to schedule a consult with a physical therapist to stop by sometime soon to reevaluate Paxton. The information gathered from this visit would determine where the need was for Paxton. Susanne was looking forward to moving ahead. She was currently frustrated that she was doing everything that she could for right now, but it may not be enough. She was willing to do anything at this point to help Paxton advance to the next stage.

Susanne was expecting a package today from UPS that would have all of the party favors, cupcake decorations, and pieces to a game for Paxton's birthday party. After UPS showed up with Paxton's medical supplies, but no party goods, she was concerned. She called the company she had ordered the items from to get an update. They told her that they could still make another delivery today so to hang tight. If she had not received anything by 6:00pm, she should call them back.

Once 6:00pm rolled around, Susanne was back on the phone. She was told that the package had never left Illinois and there would be no way for it to reach her before Monday. She immediately got upset. She had paid extra to ensure that she would receive the items no later than Friday. Unfortunately, there was nothing anyone could do. She had to think on her feet even though she just wanted to continue to sulk. She decided there was no other option other than to start over. She would have to go to the local stores to see what was available. She called her emergency babysitters, Aunt Leenie and Uncle Loonie, to see if they could watch Paxton while she ran out. They were available and were able to come through like they had so many times in the past. They even brought Susanne dinner knowing that if it weren't for them, she would not have had time to eat.

Susanne's trip was surprisingly a success. She managed to get to five out of the six stores she had planned on going to within just shy of two hours. Now that was impressive. It helped that she had called a lot of stores ahead of time to find out if they had any items that would go along with the theme of Paxton's birthday party. Once she had narrowed down her list to places that actually had a selection of things to choose from, it made her mission seem a little more achievable.

When she arrived home, she noticed that Colleen and Chris had helped to clean up the house. They knew that Susanne's time was limited, especially now that her plans had been changed entirely. Having to rework the entire party was originally not on her to do list tonight. Due to the reworkings of the entire party. She was thankful they were able to take care of Paxton while she tied up loose ends. Paxton's party would definitely not be possible if it wasn't for them.

Susanne's night seemed to keep on going and going. She was thankful when Aunt Bubba arrived at 11:00pm. She showed up ready to work. Aunt Leah, Parker, Gigi, and Scott all arrived around 1:00am. They were visibly exhausted from the drive, but were willing to help where needed. She knew she had a lot left to do before the party tomorrow. She was also realistic that it all could not be completed tonight. They all headed off to bed so they could at least get a little shut eye before Paxton's big day.

Broken Toe....Oh NO!

Paxton's birthday had been special. Scott and Susanne helped celebrate that monumental day with the big guy after they both got home from work last night. Unfortunately, Paxton couldn't wait up for Gigi and Poppy who were still at work until late that evening. Gigi and Poppy had gotten him a birthday cake with a number 1 candle on it to show their enthusiasm for Paxton turning a year old. Parker and Cole had helped Aunt Leah and Uncle Wally make Paxton some wonderful cupcakes. Susanne and Scott allowed Paxton to play around in both. They were excited to see what kind of mess he would make. They placed a little bit off icing on his lips to see if he would like it. He tasted a tiny amount with his tongue. He didn't seem as appalled by the idea as they had originally predicted. He was rather pleased with the offer.

After the celebration, Paxton watched some television with his mommy and daddy. He was always so mesmerized with the colors and movement on the screen. He almost seemed like he was in a trance whenever he was in front of the tube. He even laughed a lot while hanging out with them. Susanne could say or do anything and get that response. It was the sweetest sound in the world. It brought joy to their hearts and reminded them how lucky they were that he was still going strong.

After Paxton was in bed, Susanne got settled into her nighttime routine. She was finding that this was her time to use for herself. She loved to use this opportunity to sort through things that needed to be completed the following day. Also, she would take this time to work on blog entries, watch television, check facebook, check e-mail, or pump. She always found that it was difficult for her to actually go to bed. She was already such a night owl, but on top of that she had trained herself not to go to bed before Paxton's last feeding was completed, which was usually after 1:00am. Even though she enjoyed it in the moment, it made the next morning much more challenging.

Right before she crawled into bed, she went to the bathroom one last time. She didn't think to turn on the hall light to help light her way. She had grown up in this house, so this was a well-beaten path. Unfortunately, Poppy had placed Paxton's bouncer right outside of the door of the room that Susanne was staying in. She did not see the obstruction in her way until it was too late. Her fourth toe got caught on the metal bar and it bent in a way it was not supposed to. She immediately screamed out for help and Scott came to her rescue. It was very painful, but they thought maybe it was just jammed. It wasn't until this morning when Susanne realized it was actually broken. Rats.

Paxton slept well until around 7:30am. She thought she would get lucky enough that he would sleep until 9:00am when she was ready to pack him up in the car for the ride back to Virginia. Instead, she had to hobble around on one foot back and forth to his room to try to comfort him as he went through his morning ritual of gagging, coughing, and vomiting. He sounded like he had a lot that had built up over the course of the evening. She had to use the bulb syringe to clear his nasal passages and throat multiple times. He was quite upset for a while afterwards until he finally exhausted himself out. Once he finally calmed down, he closed his eyes for a mid-morning nap. Susanne was behind schedule at this point. She decided to go ahead and set him up on his next feeding while she finished packing the car. For some reason, his enteral pump was not cooperating. It kept beeping, saying that there was no food, but Susanne clearly knew there was food. She had just filled his enteral bag with 4oz of formula...thank you very much. She checked for kinks in the tube, air in the tube, or something clogging the tube, but none of that seemed to be the problem. She made sure that the tube was loaded in the pump correctly, that the door to the pump was closed, and that his extension set attached to his G-tube was unkinked. Everything checked out okay. She decided to prime the line to see if she could get the formula to flow through easily and it did. She connected Paxton back up to his feeding and it appeared to be running smoothly. She wasn't even completely back in her room when it beeped again. She went through this same routine at least four more times. Finally, it started working properly even though she had no idea what she had done to change the outcome this time.

A few hours later, Susanne was finally ready to leave. She was able to finish up the final load of laundry and pack the last items in the car. The very last thing that she always did was fill Paxton's cooler with ice, line the back of his carseat with ice packs, and prep his continuous enteral feeding for the length of the trip. She headed him up and moved him out and just like that, they were on the road.

Not even an hour into the drive, Susanne became sleepy. This was becoming problematic because she couldn't find a time of day that worked well for her. The trip was like a lullaby of sorts that immediately put her into a trance. She tried everything. She was singing loudly to the radio. She switched genres of music for variety. She even tried dancing. When that didn't work, she turned on Harry Potter. This made the situation worse. The droning sound of the narrator's voice made her eyelids even heavier. She rolled down the window for some fresh air, but that too lost it's power. The last resort was to phone a friend. This not only kept her mind off of the monotonous drive, but she got to catch up with her peeps.

When Susanne arrived into town, she decided she should run a few errands before heading to the house. She knew it would be near impossible to try to find the time to finish up the last minute items before Paxton's big birthday bash on Saturday. The three other times she had planned on getting some of these things done were interrupted by one thing or another. It was not easy to find someone to watch Paxton and it was even harder to try to take him with her. Trying to time things appropriately was a challenge. She would inevitably have to take everything required for any feedings he would be due for along with the appropriate medications. This required a means to keep everything cold until she needed it and a means to warm up the formula when he was ready for it. All in all, it was too much to handle when needing to go to numerous stores.

Susanne managed to make it to only two stores. She definitely attracted a lot of attention with her funny gait and her infant being connected to a tube that lead to a bookbag on her back. Susanne tired easily because she had to redistribute her weight so much with her injured toe on one side and a heavy baby on the other.

She couldn't wait to finally get home. Paxton couldn't either. He was well overdue for a diaper change and nap. Susanne took care of him first like she always had when she arrived. She found it challenging to unpack the car and tote everything upstairs on one functioning leg. She finished up the rest of her returning-home-ritual which always ended with a meal. Figaro and Chloe were so excited to have their mommy home. They had followed her around until she got settled into bed. They planted themselves in their usual positions and snuggled with her the rest of the night.

Happy 1st Birthday Baby Paxton!

Happy Birthday Baby Paxton! Where did the time go. Scott and Susanne had been through so much over the last year. Paxton had been through even more. It was so amazing to see where they had been to where they were now. It was a very bittersweet day. They were beyond excited that Paxton was such a fighter and had survived his first year of life. They were told early on that this might not be a possibility. The bitter part of the day came when they thought about how they had been apart as a family for far too long. A year of Paxton's life had come and gone. They wanted everything to slow way down so they could make time stand still. They didn't want a day to go by without Paxton knowing how very special he was to them. He was such a marvelous boy with an inner strength comparable to no one. His perseverance and fervor for life was what got him to where he was today. It was a day of celebration. It was a day of reflection. It was a day of thanksgiving. It was such an exciting time and they were ready to party. Bring on the cake!!!

Time Turner

Susanne and Scott both got up to be with Paxton this morning as he worked through a gagging fit. They had to suction him out so he could breathe better. Susanne found that she was most successful if she could get the bulb syringe right up near his cleft palate opening. She would sometimes pull out stuff that looked like it was from a 500lb man.
Susanne had been working at a local veterinary office in NC over the last few weeks to help make ends meet. On average, she was working a couple of days per week. Her schedule was truly dependent on Paxton's needs. It felt good to get back to doing what she loved, but she still battled with leaving Paxton everytime. Poppy was able to watch the Bug on the days that Susanne had to work so that she would not have to worry about having to find someone for child care. At some point, she would need to find a nurse for back-up just in case Poppy was unavailable. It was nice that the practice she was at was so close to her parents' house. It literally took her five minutes to get there. She had a two hour lunch break in which she was able to go home. It was nice to see Paxton mid-day. She was comforted by the fact that he got to see her throughout the day like he was so used to. She enjoyed jumping back in to take over his care when she was able, which helped with consistency. Seeing his precious face gave her enough fuel to make it through her second shift. It was just getting the strength to leave him again, which was the tough part.

Susanne was overwhelmed at times with being a one man show. The traveling, the working, being the primary caretaker for Paxton, dealing with other issues that surfaced regarding things like insurance, bills, the rental property, or something else....she was just spent. She didn't want people to misunderstand. She found a lot of joy in taking care of Paxton and she loved being a veterinarian, she just wished she could have more time to just relax and enjoy life. If she could just clone herself or maybe even borrow Hermione's Time-Turner, then she would have the ability to get more done. It was just hitting her harder than ever because Paxton's first birthday was right around the corner. She couldn't believe how quickly time had passed. She wanted to slow it all down so she could savor every moment with her sweet precious angel. She could do without the rest.

Fresh Food Feeder is Fabulous!

Susanne was hoping to get back in bed after the first feeding of the day to try and get some more sleep. She knew that she needed to be rested up for the drive today. She was 45 minutes into falling back asleep when Paxton woke up crying. He needed suctioning and then he was good.

Susanne got ready slowly, but surely. She always seemed to run out of time. It was the third time in a row that Susanne had a wet head during Paxton's therapy session. The doorbell always rang right as she would start blow drying her hair.

Paxton did well during therapy. Susanne started off by warming Paxton up with some facial and oral exercises. Then, she offered him a taste of an oral swab. He really seemed to enjoy exploring the swab with his tongue and suckling around it. It would release a small amount of water each time he did this. It was encouraging him to swallow without feeling threatened. This would hopefully help him to be more receptive to other items in the future. Paxton played with the selection of pacifiers that Susanne offered him. He would mainly push each one out with his tongue or lick the end of it. He would start to gag if Susanne pushed it completely in his mouth. He wasn't used to anything forcing his tongue to lay flat. It scared him immensely. Next, Susanne tried offering him a small portion of banana in his fresh food feeder. He was able to push it out through the mesh and mush it around in his mouth. He actually seemed to like it. He worked on it for well over fifteen minutes with no resistance. Since he had done so well today, they decided not to push it. They didn't offer him any other food during the session other than the banana. They allowed him to end on a positive note. Susanne was so thrilled to finally see some progress even though it wasn't substantial.

Susanne thought that it would be a good idea to leave as much stuff in Virginia as possible since she would be returning in a couple of days. She didn't feel that it was necessary to carry it all back and forth. This helped to lighten her load tremendously. It still took her quite some time to get everything packed and ready to go. She had to make multiple trips to get it all in the car. Her goal was to beat rush hour traffic. The last thing she wanted was to be stuck in a sea of non-moving vehicles for hours on end. She also wanted to beat the ice storm that was supposed to be headed in anytime now. She didn't care that it was coming to the area, she just hoped it was gone by the time she would be coming back up that way on Thursday.

The drive was not bad at all. Susanne felt awake the entire time with no episodes of dozing off. This was an improvement compared to the most recent drives. Paxton did well also. He made a few sounds along the way, but would respond to a head rub or the entertaining toy attached to his car seat.

Scott greeted them at the door. He had picked up dinner on his way home, which made Susanne extra happy that she had food waiting for her when she got there. They spent the night hanging out. They both procrastinated with going to bed because they didn't want real life to start up again. They wanted to savor every precious moment they had together.

G-Tube Out

Sadly for Susanne, Paxton didn't quite make it through the night again. As Susanne was heading off to bed around 2:30am, Paxton woke up crying. He was kind of in a daze. He wasn't exactly awake, but he definitely wasn't in a deep sleep. He was comfortable when Susanne would hold him, but the second that she would put him down, he would start crying again. It was about an hour and a half later that he finally settled down and fell back asleep.

Susanne wanted to throw her phone when its alarm went off at 6:00am. The cats helped to motivate her to get up, but their reason was self-serving. They knew that when she got up they would get fed. SNEAKY!

Paxton was bright eyed and bushy tailed for his next feeding. Susanne decided to set him up on his play gym while he ate so that she could interact with him. She let him air out while he kicked around. He really seemed to enjoy that.

He sounded congested again, so Susanne tried to suction him out. She was successful. She ended up getting up a lot of thick mucus out of the back of his throat. It was probably partially in his nasal passage, but it was accessible from the back of his mouth because of his cleft palate. He felt much better after she cleared him out.

Once Paxton's feeding was completed, Susanne bathed him. He loved bathtime. She scrubbed his fingers. She scrubbed his toes. She scrubbed his face and even his nose. Her favorite part was putting lotion on him. She liked to give him mini-massages as she moisturized his skin.

After he was squeaky clean, she did the appropriate G-tube care. It didn't seem to bother him today, which was a relief. She put him in a new outfit and he was ready to go. He looked so cute.

Susanne was excited that she would get to see her friend, Cory, today. The original plan was that she would come over to visit with Susanne and Paxton, but that changed when she informed Susanne that her husband was coming down with a cold. Susanne decided to see if Moppy could watch the bug so she could meet Cory out for some lunch instead.

This plan worked out beautifully. Susanne was even hoping to finish up some of her errands that she didn't get to finish yesterday. She got dressed and ready to go and was out the door in no time.

She met Cory at Chipotle. It was so good to see her. She was just starting out her third trimester of pregnancy. She was feeling great and looking even better. It was so nice to sit and talk for hours. It was like no time had passed at all. Spending time with Cory reminded Susanne that she missed all of her favorite friends.

At the end of lunch, Susanne got a call from Moppy. She was calling because Paxton's entire G-tube had come out with the balloon inflated and all. It had become stuck between her and the crib as she was putting him down for a nap. This was an emergency situation. If she didn't act fast, the opening in Paxton's abdomen would close up. Susanne advised Moppy to get the emergency tubing to place into the stoma and to not move until Susanne could get to them. Her errands would have to be postponed again. She guessed she wasn't destined to get them done.

When Susanne got home, she went into high gear. She gathered everything that she would need to replace his MIC-KEY button. The first two attempts were unsuccessful. She didn't want to push too hard because of the concern of more trauma to the site. It was difficult to know whether to keep trying or not especially because Paxton was so upset. Finally, she got it in. The third time was a charm. Once it was in, she inflated the balloon to keep it in place. Then, she checked placement. She aspirated back the contents from his stomach so she knew it was in the correct location. The only concern now was whether or not there had been damage done to the granulation tissue that had developed over the last four months. Susanne knew that this was a serious situation. She contacted Paxton's pediatrician to discuss whether or not they still needed to go the emergency room. The one other time this happened, they absolutely had to go to the hospital. If the problem was not addressed within a sufficient amount of time, then the hole that gave access to his stomach would close up. The pediatrician told Susanne that if it were any other parent, she would recommend that they go straight to the hospital. Since she felt confident in Susanne's knowledge and assessment of the situation, she told her to just monitor him closely. If there was any sign of a problem, then she should go straight to the ER without a doubt. Susanne was comfortable with this advice and appreciated that the doctor trusted her so much. Susanne was informed to hold off on any continuous feedings until she knew he could handle bolus feedings without any complications.

Paxton was exhausted after that whole ordeal. He went right down for a nap. Susanne went outside to finish shoveling the sidewalk and driveway. She wanted to clear it all out before the next potential snowstorm that was predicted to happen this week. She was hoping round three of shoveling would take care of it all. Her shoulders were sore and she was running low on energy.

Susanne finshed up some other household chores while Paxton slept away. She was hoping that he slept through the night tonight since they had a six hour drive ahead of them tomorrow.

It's So Hard to Leave

Susanne was up with Paxton at 3:00am, 6:00am, and 8:00am. This was difficult, especially since she didn't get to bed until after 1:00am because of his last feeding. He woke up crying each time and would settle shortly after Susanne comforted him. She hated seeing him upset. It appeared that he must have been refluxing because he didn't gag or sound congested. At one point, Susanne snuggled next to Paxton in her bed. This allowed for him to feel safe and know that she was close by. At the same time, she could rest her eyes some more.

Susanne couldn't go back to bed once he was up at 8:00am because the nurse was coming by today around 9:00am to watch Paxton. Susanne was hoping to run some much needed errands. Once the nurse arrived, Susanne watched her set up the next feeding and give Paxton his medications. She was still forgetting small steps. These small steps were important because any mistake in Paxton's world was a big deal. Susanne was having trouble leaving the house because she wanted to make sure that he was squared away and that the nurse didn't have any questions. It was surprising to her how difficult it was to walk out the front door. She tried to not let her worry and concern take over.

Susanne's car was still stuck in the ice and snow in the driveway. She spent some time trying to shovel the debris from under all four tires. She didn't get very far because it was pure ice that was strongly adhered to the asphalt. She attempted multiple times to back out, but her tires would just spin in place. Out of nowhere, a car pulled up. A gentleman got out to see if Susanne wanted him to shovel her driveway. She turned down the offer, but asked him to assess which tire was causing the problem. He helped her remove as much out from under each wheel as he possibly could. When that still didn't work, he recommended that he push the car backwards as Susanne reversed. This was successful. Thank you to the good samaritan, Susanne was on her way.

Susanne's first stop was to get gas. Her gas light had turned on as she rolled up to the house on Thursday. After filling up her tank, she then decided to go ahead and get her oil changed as well as her car inspected. Both places were hopping. She had to wait at least thirty minutes each time before she moved to the front of the line. It had to be done, it was just unpleasant waiting that long.

Once finished, Susanne moved on to the next place. She needed to stop by Babies-R-Us because she needed to purchase a few things like a new bottle brush and something that would keep Paxton's bottles cold as well as have the ability to warm them up when he was ready to eat. One of the main reasons she stopped here was to get Paxton some new clothes. He had managed to outgrow almost all of his current outfits. It was his accelerated increase in height that was causing the issue. Unfortunately, Susanne's hunt was unsuccessful. She had to be picky with her selections because of Paxton's G-tube. Most outfits were not G-tube friendly. She was hoping to have better luck somewhere else.

She was only able to make it to Petsmart and the grocery store before she had to head home. The nurse was available until 3:00pm. Susanne was running behind because everywhere she went was packed. She called the nurse to give her an update on her whereabouts. The nurse was very understanding and told her to take her time. She ended up making it back to the house within fifteen minutes of when she was supposed to be there.

Paxton did well while Susanne was gone. He had difficulty falling asleep for his nap, but he didn't cry once. He was very active and playful. He smiled and laughed a lot. The nurse read him a couple of books and played him a CD of silly songs. She switched up where and what he played with over the few hours that Susanne was gone. He enjoyed showing off and flirting.

Julie decided to stop by a little later to visit with Susanne. She was so kind to help Susanne finish shoveling out the driveway. She always took the initiative to make sure Susanne was well taken care of. She knew that Susanne was sore from shoveling a couple days before and she refused to let her do anymore.

Once she had made a major dent in the snow, they went inside to get warm. Julie got to peek in on Paxton as he slept contently. He never woke up throughout the whole visit. Susanne and Julie took this opportunity to catch up. It was so nice to just relax with a good friend. It was amazing how their stress level improved with just being able to lean on each other and use each other for support. It was helpful that there were so many parallels between their current situations because it made it that much easier to understand each other.

Susanne was shocked that Paxton continued to sleep well into the evening. He never woke up after being put down mid afternoon. She was hoping that he would catch up on some much needed sleep. She knew he had to be exhausted. She would just have to wait and see if he could make it all the way through the night without stirring. She would keep her fingers crossed.

Nurse In Training

Susanne was so exhausted from the day that she had accidentally fallen asleep right before Paxton was due for his midnight feeding. Luckily, her body naturally woke up around 3:00am so she was able to make up for the missed feeding at that time. She had no problem shutting her eyes again while waiting for it to finish an hour later.

Paxton slept right through the night until 6:00am. Susanne wasn't sure if it was due to her skills as a mom or if he was just so completely exhausted from the craziness of the day yesterday that he did so well despite the congestion. He still did not have a crusty nose or any nasal discharge. He didn't have any evidence of conjunctivitis and his lungs still sounded clear. He didn't appear to have a cold yet, which was Susanne's goal. His main problem was that he would build up thick secretions in the back of his mouth that he couldn't clear. It was worse in the morning and at night. During the day, he handled it better.

Susanne took the same measures that she did yesterday evening except repeating the bath. Instead, she had Paxton sit in his bouncer in the bathroom while she took a hot, steamy shower. She was hoping that the steam would help clear him up. She still had to hold him upright for a while. He eventually went down for his early mid-morning nap.

Paxton slept right up until his therapy appointment. He woke up relatively easily when Susanne picked him up out of his crib. He was surprisingly quite happy for being woken up out of a deep sleep. The therapist took time doing some oral motor stretches, gum massage, and cheek stretches. Susanne made sure to show the therapist Paxton's two new lower incisors that were coming in. He was most likely going to have four lower incisors before any of his upper incisors came in. Susanne worked with three different pacifiers to show the therapist how he was handling them. Paxton would explore them with his tongue, but not ever close his mouth around them. He was reluctant to extend his tongue forward underneath the pacifier because of the fear of gagging. They were working on training his tongue to flatten and lay down. Susanne was worried about offering solid food today because of his recent congestion. She was certain he would gag and vomit with the addition of more substances in his mouth. He proved her wrong. He tolerated at least ten spoonfuls of pureed apples. He gagged twice, but recovered quickly on his own without needing to be picked up. He never got to the point that he spit up or vomited. He was actually making what appeared to be a chewing motion. He was bringing his lower jaw up to his upper jaw. He was able to close his lips together. He was moving his tongue well and swallowing more frequently than he ever had. All were great signs of improvement. It was a great feeding session. Hopefully, this wouldn't be a one time event.

As the session was finishing up, the doorbell rang. The nurse that was going to be occasionally watching Paxton came by to learn the ins and outs of watching him. She was a LPN who had worked in a nursing home for years. She had just recently started doing home healthcare. She had cared for a variety of age groups. Susanne went through every detail of his care. Susanne had a spreadsheet with his daily schedule on it. They discussed the important signs for the nurse to look out for to know if he was in distress. She made sure to tell her what to do if he turned blue, had a gagging episode, became overheated, if his respiration rate was extremely elevated, if his G-tube came out, if he needed suctioning, and the proper way to hold him.

Paxton loved looking at new faces. He was staring and smiling at the nurse the entire time. During playtime, Susanne was able to pump while the nurse watched the little guy. She did a good job with him, but she had a lot to learn. Paxton required a lot of special care and close monitoring. Paying attention to the little details was key. She was coming back tomorrow, which made Susanne feel more comfortable about getting more of a chance to watch her go through his routine.

After a few hours of teaching, the nurse headed home. Susanne could finally sit down to eat something. She was getting tired of having days that were filled to the brim with things to do. She just wanted more peace and quiet in her life. She knew this was unrealistic, but she made sure to at least make it a possibility this afternoon.

Susanne made a few phone calls related to Paxton's bills and insurance plan. She was frustrated that she kept getting different information depending on who she talked to. The solution on most days was to make more phone calls and talk to more people to try to figure things out.

Paxton woke up from his afternoon nap struggling to clear his mouth of all of the accumulated secretions. It took another hour before he fully recovered. Susanne was starting to get a routine down with how to treat his congestion. She just prayed that it would resolve within a few days. It definitely needed to be cleared up before the trip to Boston.

It's Cold, but It's Not a Cold

Paxton had a rough night last night. He woke up a couple of times sounding congested. Scott and Susanne could tell that he needed to clear his nose and throat, but he just didn't know how. Since he couldn't swallow, it complicated things. Thankfully, Scott was available to tend to Paxton when he woke up crying when Susanne was in the shower. It was such a relief to her to have a second pair of hands for once.

Scott ended up having to comfort Paxton into the wee hours of the morning. He was having difficulty breathing since he had an excessive accumulation of saliva and mucus present. Scott and Susanne didn't think he had a cold, but they did think his body was trying to fight off all of the germs he had been exposed to within the last week. Scott had just recovered from the flu and Gigi was currently recovering from a head cold. Hopefully, Paxton would be strong enough to avoid getting sick.

Susanne managed to get in bed a little past 1:00am. She needed all of the sleep she could get because she had to get on the road before 8:00am in order to make it ro Virginia in time to Paxton's appointmens. Her alarm went off sooner than she would have liked. It almost felt like the moment she closed her eyes, it was time to open them again. She needed at least two hours to get everything ready to go. She waited to wake up Paxton until the very last minute possible. She knew that he didn't get a lot of sleep last night so she hesitated to wake him up sooner than she needed to. When she had no choice, she was prepared for a rough awakening and boy was she right. He woke up gagging and vomiting. He still sounded like he had a lot in his throat that needed to be cleared. Susanne had mistakenly forgotten his nasal aspirator back in Virginia. She would never make that mistake again.

Susanne got in the car in the nick of time. She would be pushing it to make it to the house in Virginia by 2:00pm. During the first ten minutes of the drive, Paxton would gag on and off. He occasionally sneezed and even vomited up his stomach contents a couple of times. She was able to wipe his face and clear his mouth out at every stop sign on the way out of the neighborhood. He eventually seemed to settle down and Susanne didn't have to pull over. Susanne struggled to keep her eyes open especially during the first two hours of the drive. It wasn't until she talked to Moppy for about an hour that she felt more awake. Later in the drive, she talked to Scott. It helped to have something that stimulated her brain because the drive itself was so mundane. During the remainder of the drive, she listened to the Harry Potter book on CD that she had started on a previous drive. It helped to keep her focused on something other than how much longer she had to go.

Paxton got upset one more time during the trip. It was all related to his congestion and not the typical problem of him being overheated. Susanne had figured out the solution to that problem a while ago. She would still line the back of his car seat with freezer packs for the drive. So far, that worked well.

Susanne arrived home with fifteen minutes to spare. This was just enough time to get Paxton in the house and changed before his therapy session. Susanne decided to leave everything in the car until after his second appointment due to the lack of time. She would also have to postpone pumping for the same reason.

Therapy went well today. Paxton was very active in the beginning, but eventually lost steam as the session came to an end. He was very talkative and laughed a lot when the therapist first interacted with him. Paxton learned a new trick on his side today. He was allowed to play in the side lying position, but he was required to put weight through the arm that was touching the wedge. It was a total GQ pose. He had a short burst of energy on his back when she was working on range of motion of his legs. He sat with good head control for several minutes multiple times. He still required moderate support to his trunk, but that wasn't surprising. He did well during tummy time and he held his head up without prompting on several occasions. He kept trying to pull his hands to his mouth and rest his face on them. The therapist had to continue to correct his positioning. She didn't want him to become a Lazy Bones Jones. Susanne demonstrated the ball exercises that she had been working on with Paxton. This was when Paxton decided it was nap time. He could no longer keep his eyes open no matter how hard he tried. He was out for the count.

Unfortunately for Paxton, he wasn't going to be able to take an official nap. He had another appointment that was scheduled right after his therapy session. Susanne had just enough time to put him in his car seat and grab her purse before it was time to leave.

Paxton weighed 17lbs 12oz and measured 28.75 inches in height. Susanne was told that even though his car seat was supposed to go up to 22lbs, she would probably need to get a convertible car seat soon. Paxton's height was at the high end of the range for what the car seat would hold. This came as a surprise to them both. The pediatrician did inform her that Paxton had managed to slowly move up from the less than 5% group to the 25% group for his height. His weight was still hanging below the 5% line, but she thought he hid it well. The appointment started with the nurse giving him his Hepatitis B vaccine and his next Synagis vaccine. Once again, even though he was getting only two vaccinations, he had to get three separate injections. He didn't cry for the first two, but the third one brought tears to his eyes. This always made Susanne so sad. Susanne updated the pediatrician about the upcoming cleft palate repair scheduled for 02-15-11. She was pleased with the assessments from the cardiologist and the neuro-ophthalmologist. She was eagerly awaiting what the gastroenterologist was going to say about the requirements for the long term care of Paxton's G tube, but she would have to be patient because Susanne was having trouble getting an appointment with them. Susanne asked her about Paxton's recent congestion. The doctor did not think he had a cold. She thought his lungs sounded clear and the upper respiratory sounds went away after suctioned out with the nasal aspirator. Their last topic of discussion was his feedings. She helped Susanne figure out a way for her to feed him five bolus feedings during the day, but then set him up on a continuous feeding from 11:00pm - 7:00am. She was reluctant to switch anything regarding his feedings. She felt like everytime she adjusted something, he responded negatively and in turn got ill. Susanne was going to have to make this transition very, very slowly.

By the time Susanne got out of there, it was already 5:00pm. The appointment lasted an hour and a half. This was typical for his routine visits so it was not surprising. They always had so much to discuss including all of the updates that had occurred since the previous visit. Susanne was just so thankful that Dr. Lynn was so dedicated to her and Paxton.

Susanne immediately started shoveling snow out of the driveway when she got home. She was trying to beat the sun going down. Her goal was to be able to get into the garage so that she wouldn't risk slipping in the snow with Paxton in tow and to make unloading the car a lot easier. She quickly realized that it was going to take a lot longer than she thought. It had snowed eight inches yesterday. Susanne knew it wouldn't be an easy task. She managed to shovel the first quarter of the driveway before she needed to get Paxton inside for his next feeding. He had been sitting in the heated car while Susanne worked up a sweat. She decided to try to drive the car into the driveway up to the garage. She thought with the path that she had already cleared plus a little momentum, she could get to the garage. SHE WAS WRONG! She got stuck. She could not reverse or drive forward, even with shoveling the snow away that had accumulated around the tires. She eventually threw in the towel and called it quits until tomorrow. She carried Paxton in and got him situated first. Once he was eating and settled, she started to unload the car. It took her EIGHT trips back and forth through the deep snow before she was finished. The most frustrating part was that once it was all inside, she was nowhere close to being able to sit down and relax. She took care of the cats next. Moppy had been unable to get out to the house to scoop litter and refill their bowls because of the snow storm. They still had a little bit of food, but their litter boxes were out of control. She was surprised they were still using them and not going elsewhere. She started a load of laundry and pumped. She talked to her sister, Kerry, about two of her sick dogs.

Just as they were getting off the phone, Paxton woke up crying. He sounded congested again. He was trying to cough up the excess saliva and thick mucus that was trapped in the back of his throat. He had difficulty swallowing it. His cough sounded harsh. Susanne could tell that his throat was dry. She tried everything to help make him feel better. She suctioned out his nose and mouth. She applied Little Noses saline drops to help open up his nasal passages. She offered him a wet oral swab to help moisten his mouth. She even gave him a bath in hopes that it would be calming. The one thing that was missing was a humidifier. She had brought it with her to NC thinking that she would need it down there during the winter months. She had not been taking it back and forth with her. Now, when she really needed it, she didn't have it. Finally, she calmed him down. She snuggled with him for over an hour. She held him closely and rocked him sweetly. He eventually fell asleep.

Finally, she got to eat her dinner that was delivered two hours prior. She had an empty fridge, so this was her only choice if she didn't want an empty stomach. She had been so excited about her meal, but she just had not found a free moment to sit down to eat it. Now she was stuck with a cold dinner. It was all in the name of love.

Bamboo Mentality

In ancient China, people identified with Bamboo as the very symbol of Chinese character. Bamboo stands for elasticity, endurance and perseverance. Bamboo is beautiful, strong, yet pliable. The stem bends in the wind but does not break. The leaves are moved by the wind but do not fall. After the American atomic bomb was dropped on Hiroshima, Japan, bamboo was one of the first plants to emerge from the soil and turn green again. It is a survivor.

It is natural to picture an oak tree when thinking of strength and endurance. After a storm, however, the branches of an oak are cracked and broken and its leaves are strewn about. The bamboo tree survives monsoons by being flexible. It bends with the storms of life so that when the storm is over it can continue to stretch upward, stem intact and leaves accounted for.

Life sometimes feels like a series of windy days. Other times it feels as though an atomic bomb has been dropped on you. Responding to life’s storms and explosions requires patience and planning in order to survive with the least amount of cracks and breaks. Having a “bamboo mentality” means yielding when appropriate and advancing when possible. Bamboo mentality refers to your ability to reach compromise, sometimes giving in, but ultimately emerging from your troubles unbroken.

Rough Start to a Good Day!

Susanne was so thankful that Scott was feeling better. It made such a difference to her that he took over the 6:00am feedings again. A couple extra hours of sleep made a world of difference.

Paxton started off his day playing on his play gym while he finished his 9:00am feeding. He actively kicked around and batted at the hanging toys. He got so excited when his aim was accurate.

Paxton was very sensitive about his positioning at all times. He had such a weak core that when he was in a supported sitting position, he would tend to slump and regress relatively quickly. If he was laid on his back, his reflux would act up which usually lead to gagging followed by vomiting or spitting up. Even with an elevated pillow to support his head and neck, he was sensitive to being placed on his back. If he was positioned on his stomach for tummy time, his G-tube would be compressed and occasionally provide discomfort. Also, if he just finished eating, this position would trigger vomiting because of the pressure on his full belly. The biggest concern was that he didn't have a lot of head control. Without proper support and supervision, his face would be planted directly into his boppy pillow. This increased his chances for suffocation. Paxton did best on his sides or upright over the shoulder. They each had their own pros and cons, but they still appeared to be the most comfortable way for him to be positioned.

Later in the morning, Paxton sat with Poppy in his special spot in the breakfast area that attracted the sun. They enjoyed soaking up its warm rays. A little Vitamin D never hurt anybody.

As Paxton's midday feeding finished, he woke up gagging and vomiting. It was always scary to witness this because of the concern of aspiration. Susanne whisked him up right away to try to prevent this from happening. After getting him settled, Susanne placed him in his lamb seat while she went to the bathroom. She no sooner sat down before he started crying. Luckily, Poppy was close by and was able to console him. He had spit up again for some reason. His stomach must have been upset because for the next hour he was very easily disturbed by the slightest movement. Susanne couldn't get him comfortable for the longest time. She tried every position under the sun. Finally, she found the money spot. He calmed down and recovered from the traumatic last hour. Susanne could tell that he was overtired at this point. He was fighting falling asleep, but he eventually shut his precious eyes. Susanne hoped that he would sleep for a long time. He definitely needed it.

Gigi played with Paxton when she got home. She encouraged him to kick his piano to cause the lights and music to turn on. He always seemed so impressed with himself. It was neat to see him make the connection that he was causing the toy to activate. Gigi worked with Paxton on exploring different teething toys with his tongue. He seemed to love the feel of the toy rub against his gums. He allowed one of the toys to go beyond his gums. He still didn't quite understand how to get his tongue underneath them to form a seal and suckle. He couldn't even figure out how to munch and chew on the toys, but it was fun to watch him touch them with the tip of his tongue. Hopefully, the other skills would develop over time.

Paxton sure laughed a lot this evening. This made Susanne feel better since he had a little bit of a rough day. Once Scott got home, he took over with some of the playtime. Paxton ran out of steam quickly. Before they knew it, Paxton was ready for bed. Scott spent some time cuddling with the little man. Once he was dozing off, he placed him in his crib. He made sure he was snug as a bug in a rug and gave him kisses goodnight.

Scott and Susanne discussed the happenings of their day over dinner. It was nice to just sit with each other and talk. It felt like the old days again.

Amazing

Paxton couldn't get through his 6:00am feeding without gagging. Susanne sat up with him because she was still doing all of Paxton's care. After today, she was going to recruit Scott back to the team. Scott's sickness had definitely taken a toll on her over the last few days.

Paxton had trouble going back down for his morning nap. Susanne took this opportunity to play with him and work on some of his motor skills. He seemed very sensitive to a lot of movement so she had to take it easy.

Later in the day, Susanne decided to offer him different pacifiers. He was more receptive to them than he had been in a long time. He would allow Susanne to place one completely in his mouth, but he would immediately push it out with his tongue. He liked to explore the tip of the pacifier with his tongue, but he would not suckle around it. It was almost as if his tongue resisted laying flat. If it ever did, it was sure to cause a gag response.

Since he did so well with the pacifiers, Susanne tried to offer Paxton some food by mouth. She started with blueberries today, which was different than how they usually began. She was only two spoonfuls in before he started dry heaving. He got to a point of no return. All of his stomach contents came up and sprayed everywhere. He proceeded to empty his stomach until nothing came out. He really struggled with the oral feedings today.

Paxton was such a poop machine all day. He pooped at least once with every feeding, but sometimes twice. This was more common when he was on straight breast milk, but not so much recently. Susanne was starting to think he was doing it on purpose so that he could be naked. He loved being on the changing table free as a bird. It was a sure fire way to get him to smile and laugh. It didn't matter if he was wailing the moment before, once his diaper was off he was one happy dude.

Paxton laughed a lot this afternoon. He played with his moose for a while and entertained himself by batting at him. Susanne loved how easily she could make him smile these days. Just the sound of her voice or her laugh got him going. He was also making different sounds with his mouth. His favorite one at this time was the "m" sound. Susanne swore that it sounded like he was saying "mama" at times.

For dinner, Susanne decided to try to get creative and make chilaquiles. This was one of Scott and Susanne's favorite dishes from one of their vacations to Mexico, but Susanne had never been brave enough to try making it. It was fun to make, especially the roasted salsa verde. Thankfully, it turned out well. It was a big hit with the fam.

Once everyone was home and settled, they sat down to watch the weekly episode of "The Bachelor". Susanne and Gigi had fun making a drinking game out of the show. Anytime someone said the word "amazing" they had to take a drink. Tonight the word was said at an all time high. Susanne and Gigi were feeling pretty "AMAZING" by the end of the show.

You Gotta Bounce

Scott and Susanne were feeling the effects of the craziness that they called life. They were constantly presented with challenges that were a result of Paxton's medical issues. They had learned to manage their new "normal", but at times it was still overwhelming. It was difficult for them to always put on a smiling face and just deal with the hand they were dealt. Putting on a show for others was sometimes exhausting. Everyone always wanted to hear them say that they were ok because they didn't know how to react to any other answer. Just like in the movie "Bounce", people want you to just bounce back from traumatic events. They want you to live knowing that it will eventually get better. They are uncomfortable with just letting you feel your true feelings. They want you to bounce back from the sadness, bounce back from the trauma, bounce back from the life changing event that occurred, not realizing that it's not that easy. What you've been through has changed you forever. Things are no longer the same as they were before. It would be more accurate to say that it felt like you were bouncing. Gwyneth Paltrow's character couldn't have said it better, "So that's what I've been doing all this time...bouncing. It's like crashing except you get to do it over and over again."

Scott and Susanne felt blessed to have Paxton in their lives, but they hated that he hadn't scratched the surface of what he would face in life. Scott was taken aback to see how little progress Paxton had made over the last few months. His overall strength and development was still around a four-month-old level. He had some head control, but no core strength. He wasn't anywhere near being able to sit up on his own. It appeared that they were currently in a rut. Luckily, Susanne had some new skills to work on with Paxton. She took some time showing Scott some of these techniques. They were hopeful that he would turn the corner sometime soon. It just made it difficult with Susanne traveling back and forth as well as Paxton having another surgery coming up. Unfortunately, 2011 had not yet been as boring as they had hoped it would be.

Destruct and Disinfect

Scott slept until noon today. He didn't even budge when Susanne went in and out of the room to get the milk and medications she needed for Paxton. Susanne thought that it was important for him to rest up as much as possible to aid in the healing process. Once he was stirring around, Susanne brought him breakfast in bed, even though it was technically lunchtime. He loved waking up to the smell of a warm meal.

While Scott was sleeping, Paxton and Susanne spent time playing. Susanne forced him to work as well, but she liked to cover it up by making it seem like fun. Also, she got to talk to Aunt Leenie over the phone. Since they no longer had weekly pajama parties, Susanne often felt out of the loop with the latest and greatest happenings in the Neumann's lives. It was nice to catch up and hear her voice.

Scott had not fully recovered, but he was feeling much better. They decided to take it easy today and not push it too much. Scott went out for a short bit to get his haircut and brought home some lunch for them. Once Paxton went down for his afternoon nap, they decided to watch a movie. Scott made some homemade cherry limeade to drink and popped some popcorn as their tasty treat. They had not had any time together for as long as they could remember. It was nice to finally take a break from life and hang out.

They finished out the day by doing some of their weekly chores. Of utmost importance was destructing and disinfecting the room Scott was staying in so that Susanne could safely rejoin him at night. It had been weird for them to sleep in separate rooms. It had even been just as weird for them to sit on separate couches over the last few days. They had to try extremely hard to not show affection to each other out of concern for spreading germs. This was all for the sake of Paxton.

Gigi and Poppy joined them at night for another movie. They all enjoyed some dinner as they vegged out on the couch.

Fountain of Youth

Susanne was struggling this morning. She had completely taken over Paxton's schedule the last two days because Scott was sick and she was feeling it. Scott had been running a fever, aching, coughing, and feeling congested for a little over 48 hours. Susanne took as many precautions as possible to try to avoid getting sick. She was trying even harder to avoid Paxton getting sick. She wanted to limit their exposure as much as possible. Susanne had managed to protect both of them from getting the common cold or flu for almost a year now. She didn't want to tarnish her record especially since Paxton was so close to turning one. Susanne had decided early on that Scott should not partake in any of Paxton's care until he was 100% better. She didn't even want him to hold him or be in the same room with him. Susanne chose to sleep in a separate room for the past couple of nights to minimize her exposure. She knew there was no way to protect herself completely, but she would do her best. She was hoping that her exposure would be just enough to mount an immune response against it. She would then be able to pass on her warrior antibodies to Paxton through her breast milk. This sounded good in theory, now to see if it worked.

Susanne wasn't used to much sleep as it was, but to go back to getting a max of three hours per night was torturous. The only thing keeping her going was the smile on Paxton's face. They spent the morning playing with a variety of his toys. Susanne worked on his head control and posture. She was hoping that all the time and efforts that she put in everyday working with Paxton would eventually pay off. Even though she couldn't see any major improvements, she had to hope that his muscles were getting stronger each time.

Susanne thought that it would be a good idea to let Paxton air dry for a little bit to aid in the healing process of his diaper rash. It was looking much better, but not completely resolved. Everytime she thought she could predict when Paxton would urinate next, she was caught off guard by getting sprayed. She always protected the area he was laying in and around by placing absorbent pads everywhere. It never failed that his aim was anything, but accurate. He managed to pee anywhere, but on the appropriate surface. Throughout the course of the day, he soaked Susanne's pants, the bedspread, the top of his diaper, his leg, and his receiving blanket. Susanne should have learned her lesson, but she made the same mistake after his bath. While putting on his lotion, she was startled by the warm feeling of liquid on her arm. What was she going to do with him?

Susanne thought that it would be nice to sit outside with Paxton. The weather had warmed up a little bit and was quite pleasant if sitting in the sun. Susanne had spent some time perfectly placing Paxton in her Moby Wrap. This was a wide piece of fabric that could be used to carry the weight of a child and secure them close to mom's body so that she could be hands free to do other things. She thought that this would be the perfect set up to soak up rays. No sooner than Susanne sat down, Paxton started gagging and vomiting all over the place. Of course, she did not come prepared. She did not have a burp cloth or receiving blanket. She didn't even have a tissue or paper towel. He covered the Moby Wrap, his outfit, and Susanne's outfit with his latest feeding. Their outside adventure was short and not so sweet. So much for trying to add some variety into his day.

Susanne spent the next hour bathing Paxton, doing laundry, and getting him set up for his next feeding. She was amazed at the mess that had accumulated in such a short time. She had her work cut out for herself. There was never a dull moment in her life.

Sniffling, Sneezing, Coughing, Aching, Stuffy Head, Fever So You Can Rest Medicine

Scott was definitely sick as a dog. Susanne had taken his temperature yesterday evening and it had reached 102 degrees by the time he got home from work. She went into mommy mode and encouraged him to take a shower and get in bed. She brought him multiple bottles of water along with hot chicken soup, crackers, and cheese toast. After he ate, she loaded him up with the sniffling, sneezing, coughing, aching, stuffy head, fever so you can rest medicine. He went right to sleep and actually got more than 10 hours of consecutive shut eye. That had to feel good.

Susanne had taken over Paxton's complete schedule to avoid Scott coming into contact with him. It would not be good if Paxton contracted the funk. Susanne also elected to sleep in a separate room for the first time since they had been married. This would be tough, but for the best.

Scott still managed to get up and go to work. This was the unfortunate part about today's society. There was this undue pressure to still push through and work even if someone was on their death bed. It was more highly looked upon to show up to work then to take a sick day...even if that meant infecting the rest of the co-workers. That's pretty twisted.

Susanne was supposed to appear in court today to dispute her speeding ticket she got a couple of months ago. Thankfully, she didn't have to go because it was already taken care of. She had called the court last week to ask if she would be able to bring Paxton into the court room. She wouldn't have anyone to watch him and he would be in the middle of a G-tube feeding. The judge was very understanding and helped to solve the problem. He decided to discuss her case over the phone so this would not be an issue. He offered to reduce her ticket to a non-moving violation, but she would still be responsible for paying it in full. The positive side to it all was that she would not get any points on her license and she would not have to drive three hours to be in court by 9:00am. The negative side was that she still got her first speeding ticket. She made sure to let the judge know that she had never had a speeding ticket in her life. Also, she informed him that over the last few weeks when she had been driving back and forth from NC to VA the speed limit in the area she got pulled over in was actually 70mph. Her ticket appeared to be incorrect because it stated that she had been clocked going 75mph in a 65mph zone. He said that the speed limit had changed to 70mph the week after she got the ticket. Prior to that, it had truly been 65mph. She requested a prayer for judgment, but this did not exist in the state of VA. She decided rules were rules. She payed the ticket over the phone and called it a day. She appreciated his generosity and flexibility. She would have to make sure this never happened again.

Susanne and Paxton enjoyed spending the day together that didn't include the courtroom. They followed their same old routine like they had on most days. It was nice to not have to think about traveling for once. Susanne hoped to relax a little bit that day, that is, if she could find the time.

That's Pretty Funny

The highlight of today was the joy of Paxton's laugh. He had appeared to be so happy over the last few days. He would laugh at the drop of a hat. It didn't matter if it was in response to Susanne laughing, Gigi making funny noises, or just the lightest touch. He would get so tickled that he had difficulty making any sound at times. It was the sweetest thing and such a hoot to listen to him chuckle. What a great day!

Round and Round We Go

Today, Susanne had a moment of weakness. She was feeling down on herself. Life had become a big pile of disappointment. Susanne and Scott were feeling like no matter how hard they worked, it wasn't hard enough. No matter how much money they made, they couldn't make ends meet. No matter how much they wanted to spend time together, there was always something standing in their way. Most importantly, no matter how much they wanted Paxton to be a healthy child, he was always going to battle with his ongoing medical issues. It made them deeply sad to think that he was going to have to fight to survive everyday for the rest of his life...however long that may be. Susanne was starting to question what was the greater purpose of it all. Why was life so difficult? She had always felt so blessed with such an awesome, supportive family. She had always surrounded herself with wonderful friends. She never really had many tragedies in her life, but now that felt like all that she experienced. Life used to be such a bright spot. She was always excited to see where the next road was going to take her. Now she lived in the moment, fearing the journey ahead. It just didn't feel like her situation was getting any better. Granted she had a lot to be thankful for, she still felt like there was no end in sight. It was almost as if she was stuck in a hamster wheel. She was constantly running round and round, but getting nowhere. She was working hard, expending a lot of energy, but not seeing that it was making a difference. Her faith in God was the only thing that made her push through everyday. It was the only glimmer of hope she had for the future. She believed that he had a greater plan in place for them that they just couldn't see at this moment in time. She was hoping she was right.