Susanne decided that the lawn was well overdue for a drink. Scott had recently purchased new sprinkler heads because the older ones weren't cutting it anymore. Susanne spent a lot of time trying to position the sprinklers in the perfect spot so that the water would reach most of the yard. By the time she had finished...she was soaked. It was quite a sight to see. The neighbors probably had a few good laughs at her expense.
Paxton was a little lazy during his therapy appointment today. He didn't want to fully participate no matter what skill they were working on. He refused to lift his head all by himself without assistance. He decided he liked being babied. Susanne wasn't given any new skills to work on with Paxton since he hadn't progressed much since the last therapy session. Better luck next time.
Tuesday, August 31, 2010
Monday, August 30, 2010
I Hope You Dance
I hope you never lose your sense of wonder
You get your fill to eat
But always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small
When you stand beside the ocean
Whenever one door closes, I hope one more opens
Promise me you'll give faith a fighting chance
And when you get the choice to sit it out or dance
I hope you dance
I hope you dance
I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Living might mean taking chances
But they're worth taking
Lovin' might be a mistake
But it's worth making
Don't let some hell bent heart
Leave you bitter
When you come close to selling out
Reconsider
Give the heavens above
More than just a passing glance
And when you get the choice to sit it out or dance
I hope you dance
I hope you dance
I hope you still feel small
When you stand beside the ocean
Whenever one door closes, I hope one more opens
Promise me you'll give faith a fighting chance
And when you get the choice to sit it out or dance
DANCE!!!
You get your fill to eat
But always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small
When you stand beside the ocean
Whenever one door closes, I hope one more opens
Promise me you'll give faith a fighting chance
And when you get the choice to sit it out or dance
I hope you dance
I hope you dance
I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Living might mean taking chances
But they're worth taking
Lovin' might be a mistake
But it's worth making
Don't let some hell bent heart
Leave you bitter
When you come close to selling out
Reconsider
Give the heavens above
More than just a passing glance
And when you get the choice to sit it out or dance
I hope you dance
I hope you dance
I hope you still feel small
When you stand beside the ocean
Whenever one door closes, I hope one more opens
Promise me you'll give faith a fighting chance
And when you get the choice to sit it out or dance
DANCE!!!
Sunday, August 29, 2010
Choose To Be Happy
The message at church today was "choose to be happy." It wasn't enough to just want to be happy and hope it would happen. Being happy was deliberate. Being happy was a choice. A conscious effort was necessary in order for happiness to occur.
The pastor broke his sermon up into four parts.
The first part focused on clearing up conflicts. The point of this section was that it is really difficult to be fully happy if there is conflict that exists between people. Being proactive and addressing issues, even it if means apologizing when the other person is at fault, is the shortest distance to resolving conflict. "It is to a man's honor to avoid strife, but every fool is quick to quarrel." (Proverbs 20:3)
The second section focused on making everything a matter of prayer. The key word here was "EVERYTHING". So many people pray only when things are going badly for them, as though God is only listening when people need something. Prayer is much less frequent an occurence when life is going well. The pastor reminded the people in the church that in order to be fully happy, God should be thought of and prayed to all of the time. He wants to hear from His children. It's much easier to ask Him for a little help when one has been in constant contact with Him than it is to say, "Hey God, I know we don't talk much but...I could really use a favor." "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God." (Philippians 4:2)
The third section was focused on the power of positive thought. Happiness is a tall order when one's mindset is consistently negative. The pastor said that there are people who have far less, but are happier than a lot of people who have more. That's because those happy have-nots focus on what they do have and are grateful for it. The unhappy haves tend to focus on what they do not have and are resentful. A simple change in mindset that could have a great impact on the level of one's happiness is just thinking positively when possible. "Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable --if anything is praiseworthy--think about such things." (Philippians 4:8)
Finally, it is important to practice saying, "This is good enough." It's a lot more difficult to find things to complain about if one decides that his life is good enough. Practicing such a statement and actually believing it is the key. It makes anything acquired beyond the current circumstances a true blessing and icing on the cake. "I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength." (Philippians 4:11-13)
Scott and Susanne needed to hear such a message. Paxton's journey up to this point had been so difficult, so exhausting, so frustrating...it was easy to feel every emotion other than happy. Faith in God's word and trust that the plan for Paxton would be revealed one day was what kept them in the game. This message reminded them what a true blessing Paxton was. It made them remember to continue to pray for his comfort and healing every single day. It was important to know that God was not just with them while Paxton was in the hospital. He was there always, waiting with baited breath to hear His name.
Scott and Susanne thanked God for the gift He had given them in Paxton.
The pastor broke his sermon up into four parts.
The first part focused on clearing up conflicts. The point of this section was that it is really difficult to be fully happy if there is conflict that exists between people. Being proactive and addressing issues, even it if means apologizing when the other person is at fault, is the shortest distance to resolving conflict. "It is to a man's honor to avoid strife, but every fool is quick to quarrel." (Proverbs 20:3)
The second section focused on making everything a matter of prayer. The key word here was "EVERYTHING". So many people pray only when things are going badly for them, as though God is only listening when people need something. Prayer is much less frequent an occurence when life is going well. The pastor reminded the people in the church that in order to be fully happy, God should be thought of and prayed to all of the time. He wants to hear from His children. It's much easier to ask Him for a little help when one has been in constant contact with Him than it is to say, "Hey God, I know we don't talk much but...I could really use a favor." "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God." (Philippians 4:2)
The third section was focused on the power of positive thought. Happiness is a tall order when one's mindset is consistently negative. The pastor said that there are people who have far less, but are happier than a lot of people who have more. That's because those happy have-nots focus on what they do have and are grateful for it. The unhappy haves tend to focus on what they do not have and are resentful. A simple change in mindset that could have a great impact on the level of one's happiness is just thinking positively when possible. "Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable --if anything is praiseworthy--think about such things." (Philippians 4:8)
Finally, it is important to practice saying, "This is good enough." It's a lot more difficult to find things to complain about if one decides that his life is good enough. Practicing such a statement and actually believing it is the key. It makes anything acquired beyond the current circumstances a true blessing and icing on the cake. "I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength." (Philippians 4:11-13)
Scott and Susanne needed to hear such a message. Paxton's journey up to this point had been so difficult, so exhausting, so frustrating...it was easy to feel every emotion other than happy. Faith in God's word and trust that the plan for Paxton would be revealed one day was what kept them in the game. This message reminded them what a true blessing Paxton was. It made them remember to continue to pray for his comfort and healing every single day. It was important to know that God was not just with them while Paxton was in the hospital. He was there always, waiting with baited breath to hear His name.
Scott and Susanne thanked God for the gift He had given them in Paxton.
Saturday, August 28, 2010
Catchin' Rays
Susanne went to work this morning and took Fluffy Diaz with her. Over the last few days, she was noticing that he had become pretty flexible. He was somehow able to inch his face past the edge of his Elizabethian collar, a.k.a. cone of shame, and lick at his incision. This was not going to fly with Susanne. She didn't do all of that hardwork for him to mess it up. Her solution was...a bigger cone of shame.
While Susanne was at work today, Paxton got to work on his suntan at the pool. He couldn't pass up the opportunity to take advantage of the beautiful weather. He knew that the summer was coming to an end and he wanted to utilize the pool as much as he could before it closed. He decided to invite some of his favorite people to join him. He felt privileged to be in the company of Aunt Leeny and Uncle Looney and he was so happy they said yes.
After checking out all of the hot babes at the pool, he requested that he be taken back to his living quarters for an afternoon nap. He did well throughout the rest of the day and seemed to be getting back on track with his schedule. It always took him a few days to completely adjust, after having the previous days full of appointments and what not.
Susanne got home from work at a reasonable hour. She was so excited that it was actually before the sun went down. Susanne thought it would be a good idea to go out to dinner with everyone, if they were all up for it.
It was a go! Everyone had a wonderful time catching up and talking about Paxton over a delicious meal. It was a good end to a good day. What more could you ask for.
While Susanne was at work today, Paxton got to work on his suntan at the pool. He couldn't pass up the opportunity to take advantage of the beautiful weather. He knew that the summer was coming to an end and he wanted to utilize the pool as much as he could before it closed. He decided to invite some of his favorite people to join him. He felt privileged to be in the company of Aunt Leeny and Uncle Looney and he was so happy they said yes.
After checking out all of the hot babes at the pool, he requested that he be taken back to his living quarters for an afternoon nap. He did well throughout the rest of the day and seemed to be getting back on track with his schedule. It always took him a few days to completely adjust, after having the previous days full of appointments and what not.
Susanne got home from work at a reasonable hour. She was so excited that it was actually before the sun went down. Susanne thought it would be a good idea to go out to dinner with everyone, if they were all up for it.
It was a go! Everyone had a wonderful time catching up and talking about Paxton over a delicious meal. It was a good end to a good day. What more could you ask for.
Friday, August 27, 2010
So Insensitive
Susanne was excited that Paxton only had one more appointment before she could schedule the surgery for his G-tube placement. She could not believe how many doctors he had to see to get clearance for this procedure. In any case, it was always better to be safe than sorry.
Paxton's appointment was scheduled for 10:00am at DC Children's Hospital for a consult with a pediatric anesthesiologist. Susanne knew that she had to leave no later than 8:15am to arrive on time, even if there was traffic. Unfortunately, she was mistaken. By the time she got there, she ended up not having any time to spare. She tried to go as fast as she possibly could without endangering anyone. It definitely didn't help the situation that she had to park on the third floor of the parking garage as well as get a picture ID name badge made before being allowed to access the hospital. Also, it didn't help that she was carrying four bags and a baby.
Once they were called back, the nurse practitioner asked if she could assist Susanne with all of her things. Susanne gladly accepted the offer. It was a great opportunity to give her arms a minor rest. The nurse practitioner immediately commented on how heavy the bag was that she chose to carry. Susanne informed her that it was the bag that only contained Paxton's medical history. She was in disbelief.
Susanne spent the first part of the appointment going over the important highlights of Paxton's history thus far. She made sure to include the most critical information. The nurse practitioner kept getting paged and pulled out of the room, which made it difficult to know how much of the information she truly got. Finally, the anesthesiologist came in to discuss Paxton's history and what was to be expected from their end for the procedure. He did a physical exam to get an overall assessment of Paxton's current status and double checked the medications that he was on. By the end of the appointment, it was confirmed that Paxton would not need a general pediatric anesthesiologist, but one that specialized in pediatric cardiac anesthesiology. This was a key component in ensuring that he got premium care. Susanne was pleased with this decision and it made her more comfortable with having to put him under general anesthesia. She knew that if anything were to happen during the procedure, this person would be the most likely to be able to save his life.
The next step was for the surgery department to contact Susanne to tell her when the surgery for the G-tube was scheduled. They informed her that Paxton would have to stay in the hospital for a minimum of three days. She was hoping she would be able to stay with him the entire time. Although it would be tough for him to be back in the hospital, it was necessary.
About two and a half hours later, Susanne was headed back out to the parking garage. The pre-operative care team felt horrible that Susanne and Paxton were there so long. Susanne made sure that they knew that it was more important to her that they took the necessary time to educate themselves on Paxton and his special needs, than for her to be done by a certain time. She appreciated the thorough job that they did and understood completely what it was like to try to juggle numerous patients at a time. It was difficult to be in multiple places at once, especially when they were needed in allof them. Patience was key. Luckily, Susanne had a lot of that.
Susanne thought she was well on her way home until she realized she had made a wrong turn. She couldn't believe it. Despite having a GPS, it was difficult to always determine which turn out of the five options it really wanted you to take. It also didn't matter how many times she had driven into DC, she always seemed to get lost. She was hoping one day she would be able to master navigating through the city. That would be a proud moment for her.
Susanne decided to get her oil changed before she made it all the way home since it was well past due. Paxton was crying by the time she got there because he was overheated even though the air conditioning was on high. It was actually a nice break for him to be able to get out of his car seat for a little while. As Susanne was checking out, the gentleman behind the cash register asked her, "What's wrong with your kids face?" She couldn't believe her ears. How insensitive could someone be? She responded politely back that nothing was wrong with his face. She informed him that he just couldn't eat anything by mouth because of other underlying medical issues and this was how he got his nutrition. What she really wanted to say was, "Nothing is wrong with his face, but there is about to be something wrong with yours!" Susanne shouldn't be surprised anymore with the lack of common sense and lack of respect that people have these days. In the recent past, she had a similar situation where a cashier asked her how old Paxton was. When she told him, he responded, "Well, isn't he a little small?" It wouldn't have been so offensive if his tone didn't sound like he was questioning whether or not I fed the poor baby. He obviously saw the NG tube so he should have put two and two together and thought maybe there was a reason he wasn't at his ideal weight for his age. It was also still so fresh in her mind, the dirty looks she received when she first took Paxton out in public as a four month old. People acted as if she was commiting a crime. Most people thought that he had to be less than a week old and Susanne was exposing him to the world's germs. Susanne wished people would get a clue. It would be nice if people could celebrate what makes other people different and unique. Wouldn't life be boring if we were all the same?
Susanne was able to move Paxton's occupational therapy appointment for later in the afternoon. She did this in hopes that he could try to recuperate from the morning before being asked to do more work. Paxton did well during the session, but he was still not interested in suckling on pretty much anything. Susanne was really hoping that the G-tube would make all the difference.
Paxton's appointment was scheduled for 10:00am at DC Children's Hospital for a consult with a pediatric anesthesiologist. Susanne knew that she had to leave no later than 8:15am to arrive on time, even if there was traffic. Unfortunately, she was mistaken. By the time she got there, she ended up not having any time to spare. She tried to go as fast as she possibly could without endangering anyone. It definitely didn't help the situation that she had to park on the third floor of the parking garage as well as get a picture ID name badge made before being allowed to access the hospital. Also, it didn't help that she was carrying four bags and a baby.
Once they were called back, the nurse practitioner asked if she could assist Susanne with all of her things. Susanne gladly accepted the offer. It was a great opportunity to give her arms a minor rest. The nurse practitioner immediately commented on how heavy the bag was that she chose to carry. Susanne informed her that it was the bag that only contained Paxton's medical history. She was in disbelief.
Susanne spent the first part of the appointment going over the important highlights of Paxton's history thus far. She made sure to include the most critical information. The nurse practitioner kept getting paged and pulled out of the room, which made it difficult to know how much of the information she truly got. Finally, the anesthesiologist came in to discuss Paxton's history and what was to be expected from their end for the procedure. He did a physical exam to get an overall assessment of Paxton's current status and double checked the medications that he was on. By the end of the appointment, it was confirmed that Paxton would not need a general pediatric anesthesiologist, but one that specialized in pediatric cardiac anesthesiology. This was a key component in ensuring that he got premium care. Susanne was pleased with this decision and it made her more comfortable with having to put him under general anesthesia. She knew that if anything were to happen during the procedure, this person would be the most likely to be able to save his life.
The next step was for the surgery department to contact Susanne to tell her when the surgery for the G-tube was scheduled. They informed her that Paxton would have to stay in the hospital for a minimum of three days. She was hoping she would be able to stay with him the entire time. Although it would be tough for him to be back in the hospital, it was necessary.
About two and a half hours later, Susanne was headed back out to the parking garage. The pre-operative care team felt horrible that Susanne and Paxton were there so long. Susanne made sure that they knew that it was more important to her that they took the necessary time to educate themselves on Paxton and his special needs, than for her to be done by a certain time. She appreciated the thorough job that they did and understood completely what it was like to try to juggle numerous patients at a time. It was difficult to be in multiple places at once, especially when they were needed in allof them. Patience was key. Luckily, Susanne had a lot of that.
Susanne thought she was well on her way home until she realized she had made a wrong turn. She couldn't believe it. Despite having a GPS, it was difficult to always determine which turn out of the five options it really wanted you to take. It also didn't matter how many times she had driven into DC, she always seemed to get lost. She was hoping one day she would be able to master navigating through the city. That would be a proud moment for her.
Susanne decided to get her oil changed before she made it all the way home since it was well past due. Paxton was crying by the time she got there because he was overheated even though the air conditioning was on high. It was actually a nice break for him to be able to get out of his car seat for a little while. As Susanne was checking out, the gentleman behind the cash register asked her, "What's wrong with your kids face?" She couldn't believe her ears. How insensitive could someone be? She responded politely back that nothing was wrong with his face. She informed him that he just couldn't eat anything by mouth because of other underlying medical issues and this was how he got his nutrition. What she really wanted to say was, "Nothing is wrong with his face, but there is about to be something wrong with yours!" Susanne shouldn't be surprised anymore with the lack of common sense and lack of respect that people have these days. In the recent past, she had a similar situation where a cashier asked her how old Paxton was. When she told him, he responded, "Well, isn't he a little small?" It wouldn't have been so offensive if his tone didn't sound like he was questioning whether or not I fed the poor baby. He obviously saw the NG tube so he should have put two and two together and thought maybe there was a reason he wasn't at his ideal weight for his age. It was also still so fresh in her mind, the dirty looks she received when she first took Paxton out in public as a four month old. People acted as if she was commiting a crime. Most people thought that he had to be less than a week old and Susanne was exposing him to the world's germs. Susanne wished people would get a clue. It would be nice if people could celebrate what makes other people different and unique. Wouldn't life be boring if we were all the same?
Susanne was able to move Paxton's occupational therapy appointment for later in the afternoon. She did this in hopes that he could try to recuperate from the morning before being asked to do more work. Paxton did well during the session, but he was still not interested in suckling on pretty much anything. Susanne was really hoping that the G-tube would make all the difference.
Thursday, August 26, 2010
Poor Fluffy Diaz
Susanne was sorry to announce to all the female prospects that Fluffy Diaz lost his manhood yesterday. Susanne brought him into work with her to neuter him. Everyone fell in love with him at first sight, especially after hearing his name. He did well during the procedure and really worked the sad puppy dog eyes after he recovered from anesthesia. He had everyone waiting on him hand and foot. Oh, Fluffy Diaz, do you need a pillow? How about some water? Are you hungry boy? You don't like regular dog food? Could I possibly interest you in some chicken? Oh, you need us to hand feed you? Okay, whatever you need. Poor Fluffy Diaz.
Susanne called this morning to check up on him and he was doing well. He had already received lots of snuggles and attention before the sun had even been up for more than a couple of hours. Susanne planned to stop by work to pick him up after Paxton's cardiology appointment.
Susanne had been noticing that Paxton was using more effort to breath when doing even the most basic of tasks. He also had periods of time where he would look very pale, but his normal color would return shortly thereafter. She was suspecting that it was all from his oxygen saturation levels dropping as he slowly outgrew his shunt. She would just have to wait and see what the numbers showed today.
Paxton weighed all of 15 lbs today. He finally made it on the growth chart. His oxygen saturation level was around 80. It definitely appeared that it was slowly trending downwards. The cardiologist thought that Paxton was looking good. She was pleased with his progress. After the doctor assessed Paxton, she sat down with Susanne to discuss the next step. She read her a letter she received from the Chief of Cardiac Surgery from Children's Hospital of Boston, which had been ranked the number one leader in pediatric heart care for the last few years. It was also the largest pediatric cardiac surgery department in the United States. He recommended that Paxton have a 3D heart ultrasound and a MRI before his next surgery. This would help determine with more detail the extent of the structural abnormalites and what needed to be done to surgically stabilize the heart. Susanne was happy that she at least knew where the actual heart surgery would be done at and who it would be done by. Now she would just have to wait to find out when it would be scheduled and what the actual procedure would be. So many questions, so little time.
On their way home, Susanne stopped by work to pick up Fluffy Diaz. Paxton had fallen asleep on the car ride over. Susanne checked in on him once they got inside. She immediately noticed that he had pulled his NG tube out at some point from the cardiologist's office to Susanne's office. What a stinker!
Susanne bathed Paxton when she got home before she had to replace his NG tube. He really loved bath time especially when he didn't have a tube attached to his face. Afterwards, Susanne replaced his NG tube and put him down for a nap. She spent the rest of the afternoon making phone calls to her health insurance company and multiple different providers to continue to try to figure out the mess that was left over from when Paxton was hospitalized for the first two months of his life. She couldn't believe that she was still dealing with the same issues five months later. Also, she was trying to figure out why she was running into a problem with recent appointments not being covered. It was a never ending saga.
Susanne called this morning to check up on him and he was doing well. He had already received lots of snuggles and attention before the sun had even been up for more than a couple of hours. Susanne planned to stop by work to pick him up after Paxton's cardiology appointment.
Susanne had been noticing that Paxton was using more effort to breath when doing even the most basic of tasks. He also had periods of time where he would look very pale, but his normal color would return shortly thereafter. She was suspecting that it was all from his oxygen saturation levels dropping as he slowly outgrew his shunt. She would just have to wait and see what the numbers showed today.
Paxton weighed all of 15 lbs today. He finally made it on the growth chart. His oxygen saturation level was around 80. It definitely appeared that it was slowly trending downwards. The cardiologist thought that Paxton was looking good. She was pleased with his progress. After the doctor assessed Paxton, she sat down with Susanne to discuss the next step. She read her a letter she received from the Chief of Cardiac Surgery from Children's Hospital of Boston, which had been ranked the number one leader in pediatric heart care for the last few years. It was also the largest pediatric cardiac surgery department in the United States. He recommended that Paxton have a 3D heart ultrasound and a MRI before his next surgery. This would help determine with more detail the extent of the structural abnormalites and what needed to be done to surgically stabilize the heart. Susanne was happy that she at least knew where the actual heart surgery would be done at and who it would be done by. Now she would just have to wait to find out when it would be scheduled and what the actual procedure would be. So many questions, so little time.
On their way home, Susanne stopped by work to pick up Fluffy Diaz. Paxton had fallen asleep on the car ride over. Susanne checked in on him once they got inside. She immediately noticed that he had pulled his NG tube out at some point from the cardiologist's office to Susanne's office. What a stinker!
Susanne bathed Paxton when she got home before she had to replace his NG tube. He really loved bath time especially when he didn't have a tube attached to his face. Afterwards, Susanne replaced his NG tube and put him down for a nap. She spent the rest of the afternoon making phone calls to her health insurance company and multiple different providers to continue to try to figure out the mess that was left over from when Paxton was hospitalized for the first two months of his life. She couldn't believe that she was still dealing with the same issues five months later. Also, she was trying to figure out why she was running into a problem with recent appointments not being covered. It was a never ending saga.
Wednesday, August 25, 2010
When Life Deals You Lemons....
Susanne had a moment of weakness today. She had done so well with compartmentalizing her emotions to get through the day to day that she was caught off guard when she broke down. She was reminded today that life was not fair. It was so easy to get caught up in comparing herself to others and wishing for something that she didn't have. It was even easier to feel sorry for herself and just want to throw in the towel. It was in that moment that she remembered that this way of thinking would get her nowhere. The grass wasn't always greener on the other side. More than likely, most people hide behind their smile. The lesson learned was not to wish for what she didn't have. Not to cry over spilled milk. Everything wasn't equal. It was all about the give and the take. Comprimise was key. These words had never meant so much as they did now. Why worry about the things that she couldn't change? Why wonder what it would be like to live someone else's life? Susanne decided for herself a short time ago to take life by the horns and take charge. She was trying not to forget that decision she had made for herself. Life was all about choices. She could choose to be negative or look back with regret, but where would that get her. She couln't change the past, but she could change the future. She could choose to live in the moment and make something of it. She could choose to show up and be present in her life. She shouldn't wish the days away just to get to the next chapter in her life. People should make something of the present. Be proactive in their own lives. Choose to find the positive in everything. Go with the flow. Go along for the ride. She might be amazed where life might take her if she slowed down enough to take the turns. More than likely she would look back on the darkest moments of her life and find that there was purpose for it. Everything had happened for a reason. God hadn't given her and Scott more than they could handle. They could either sit out a round or fight to the death. They shoudn't be benchwarmers wanting to play, but never getting in the game. Be kind to all. Smile at those that didn't expect it. Support one another. Celebrate each others differences. Quit trying to conform. No two people were made the same for a reason. Everyone had something different to bring to the table. Be who they were destined to be. Push themselves daily. When they didn't think they had it in them to continue on, push a little more. Choose to be better versions of themselves. Wake up each day with a purpose. Commit to finding something positive daily. Each decision made could change the path they were walking down at any point. Choose the path less taken. Take a wrong turn occasionally. Who knows, they might find something there that they may have missed Change is scary, but they couldn't grow without it. They shouldn't let fear run their lives. Love those around them. Embrace each other's weaknesses. If life gives lemons, make lemonade. Even better...if life gives limes, make margaritas. Give the best, be the best. Always be honest. Love deeply and completely. Don't give up and never give in. Don't question why us...take it as a compliment that God thought we were strong enough to handle it. Every moment is a teachable one. Set an example for others. Be true to yourselves. Be steadfast and strong. Set the tone for your own life. Go on and live it.
Tuesday, August 24, 2010
Sleep My Child
So the meeting last night lasted a lot longer than Susanne had anticipated. Paxton did exceptionally well the entire time. He didn't cry at all despite being overtired. He did laugh out loud at one point, which made it extremely difficult for Susanne to hold it together. Susanne was hoping that Paxton would have slept during some of the meeting or at least on the car ride home, but everytime he would almost close his eyes, he fought through it. He wanted to prove how tough he was. Susanne thought that he would be exhausted by the time she finally got him in the bed. This was not the case. He was so overtired that he couldn't get settled. She was up and down for a couple of hours trying to comfort him. Once she thought he was sound asleep in her arms, she would attempt to put him in his crib. Everytime she did this, he would immediately start crying. The vicious cycle lasted well into the night. Susanne finally laid her head down around 3:00am. She thought all was good until the 6:00am feeding, but she was wrong. Paxton woke up again crying as if in pain around 4:30am. Susanne held him closely, sang him a sweet song, and rocked him until he gave up. Susanne hated that he had to pretty much tire himself out to finally fall asleep. If she could only figure out what was causing these episodes.
Paxton eventually woke up around 10:00 am. Susanne was pleased to see a smile on his face. He always knew how to brighten his mommy's day. He got really tickled with looking at himself in the mirror today. He was finally starting to admire how good looking he was. It was very entertaining to watch him raise his eyebrows at himself.
Susanne was so proud of Paxton's progress every single day. He was such a fighter.
Paxton eventually woke up around 10:00 am. Susanne was pleased to see a smile on his face. He always knew how to brighten his mommy's day. He got really tickled with looking at himself in the mirror today. He was finally starting to admire how good looking he was. It was very entertaining to watch him raise his eyebrows at himself.
Susanne was so proud of Paxton's progress every single day. He was such a fighter.
Monday, August 23, 2010
Ready, Aim, Fire!
Paxton woke up in the middle of the night again, but responded well to some calming words and cuddling arms. He slept well the rest of the evening, but he woke himself up with an unpleasant neverending episode of gagging and retching. Susanne noticed that his stomach always seemed to be full of air early in the morning. She suspected that this was from him breathing with his mouth open throughout the night and swallowing air in the process. This caused his little belly to be bloated as the sun would come up. Once he was awake enough to realize the situation, he needed to move things out one end or the other to get relief.
Therapy went well this morning. Paxton was smiling and laughing a lot more at the little things. He seemed to get really excited when he would get to play with his toys, especially his moose. He managed to produce two wet diapers within ten minutes of each other. Susanne thought he was all finished for the time being, but she was so wrong. Susanne was on the phone when he let loose in his diaper. During the call, she had been holding him in her lap so she could interact with him at the same time. She didn't get to fully assess the situation until she wrapped up the conversation. She quickly realized, that he had managed to squirt out the back of his diaper and cover her pajama pants with his business. She had to be very careful when she picked him up to move off of her bed. She successfully transported him to a bathroom sink without leaving a trail behind. She was thankful that she had wipes close by while on the bed. This was her only saving grace. She bathed Paxton first and put him back down for a nap. She then had to shower herself to clean up the aftermath from the explosion. She couldn't believe how accurate his aim was when he put his mind to it. All she could do was laugh. Mommy loved her smelly little boy.
Susanne was able to schedule the next appointment needed to complete the process for Paxton's G tube placement. She was still shocked at how many specialists he needed to see in order to schedule the one procedure. Hopefully, the surgery would be within the next two weeks. She wasn't excited about him having to stay in the hospital again, but she was hoping the G tube would be another step in the right direction.
Susanne had a continuing education course at her work this evening. She planned on taking Paxton with her. She hoped that he would be able to hang in there throughout the meeting. He was usually a very well behaved baby and was not known to cause a scene. Maybe the extra entertainment would tire him out and set him up to sleep well throughout the whole night
Therapy went well this morning. Paxton was smiling and laughing a lot more at the little things. He seemed to get really excited when he would get to play with his toys, especially his moose. He managed to produce two wet diapers within ten minutes of each other. Susanne thought he was all finished for the time being, but she was so wrong. Susanne was on the phone when he let loose in his diaper. During the call, she had been holding him in her lap so she could interact with him at the same time. She didn't get to fully assess the situation until she wrapped up the conversation. She quickly realized, that he had managed to squirt out the back of his diaper and cover her pajama pants with his business. She had to be very careful when she picked him up to move off of her bed. She successfully transported him to a bathroom sink without leaving a trail behind. She was thankful that she had wipes close by while on the bed. This was her only saving grace. She bathed Paxton first and put him back down for a nap. She then had to shower herself to clean up the aftermath from the explosion. She couldn't believe how accurate his aim was when he put his mind to it. All she could do was laugh. Mommy loved her smelly little boy.
Susanne was able to schedule the next appointment needed to complete the process for Paxton's G tube placement. She was still shocked at how many specialists he needed to see in order to schedule the one procedure. Hopefully, the surgery would be within the next two weeks. She wasn't excited about him having to stay in the hospital again, but she was hoping the G tube would be another step in the right direction.
Susanne had a continuing education course at her work this evening. She planned on taking Paxton with her. She hoped that he would be able to hang in there throughout the meeting. He was usually a very well behaved baby and was not known to cause a scene. Maybe the extra entertainment would tire him out and set him up to sleep well throughout the whole night
Sunday, August 22, 2010
Night Owl
Susanne was ready for a day of rest and relaxation. She decided to take it easy during the downtimes today. She got sucked in to myriad movies throughout the course of the day. She found herself sobbing like a baby a couple of different times. She was surprised that on both occasions she was brought to tears by an animated film, one of which was the movie, "Up". This was one of Susanne's favorites. She was recently told by one of her friends that the kid in this movie reminded them of Paxton. She could definitely see a slight resemblance, especially the chubby cheeks.
Susanne was not thrilled with Paxton's new change in schedule. For the last week or so, he would sleep well into the morning. Susanne would have to wake him up periodically throughout the day for therapy. He would participate for a short time and then show signs that indicated he was ready for another nap. This would be great and all if he would stay asleep overnight. Unfortunately, this was not the case. He would go down at the same time that he had been over the last few months, but for some reason he would remain restless for hours and sometimes even wake up in the middle of the night crying. It always seemed to come out of nowhere. Susanne continued to think that it was gastrointestinal related. Most of the time if she could get him to burp or poop, then he would settle right down. Hopefully, she would be able to break the cycle sometime soon. Thank God she was a night owl.
Susanne was not thrilled with Paxton's new change in schedule. For the last week or so, he would sleep well into the morning. Susanne would have to wake him up periodically throughout the day for therapy. He would participate for a short time and then show signs that indicated he was ready for another nap. This would be great and all if he would stay asleep overnight. Unfortunately, this was not the case. He would go down at the same time that he had been over the last few months, but for some reason he would remain restless for hours and sometimes even wake up in the middle of the night crying. It always seemed to come out of nowhere. Susanne continued to think that it was gastrointestinal related. Most of the time if she could get him to burp or poop, then he would settle right down. Hopefully, she would be able to break the cycle sometime soon. Thank God she was a night owl.
Sunday, August 15, 2010
Thank You From the Bottom of My Heart
Today was a day that was dedicated to those that had provided continued love and support to Susanne, Scott, and Paxton throughout their journey thus far. They held a party in honor of the family and friends who had been there for them. They wanted to show their appreciation for everyone who had a hand in getting them through each day. The last six months had been so challenging. It had been a roller coaster ride of emotion. They wished that there had been more time and opportunity to individually recognize each person. Now they had a chance. Thank you Team Paxton from the bottom of our hearts.
Saturday, August 14, 2010
Meet and Greet
Today, Susanne, Scott, Moppy, Gigi, and Poppy spent time trying to prepare for the big party tomorrow. There was a lot of cooking, cleaning, decorating, and eating going on. Everyone kept busy the entire time and there was never a lack of things to do.
Before Scott and Susanne knew it, it was time to leave for the intern potluck party that was being held at the home of one of Scott's supervisors' in Pennsylvania. The purpose for this party was for the old interns to be able to pass the baton to the new interns. It was a way to embrace them as they are just starting out and give them any last words of wisdom.
Susanne was excited that she would finally get to meet everyone that Scott had worked with over the last year. It was almost embarassing that this was the first opportunity that she had had to do this since he started last August. Looking back, the timing was just never right for one reason or another. In the beginning of Scott's internship, Susanne was working full time and pregnant. After Paxton was born,... well, let's just say it was understood why she couldn't make it up there since that time.
This would also be the first time that everyone was going to get the chance to meet Paxton. It was so awesome that he would finally have the opportunity to meet all of the wonderful, supportive people that had been praying for him during his journey.
The one thing that Scott and Susanne were not looking forward to was the three hour drive to and from Pennsylvania. It would have been a piece of cake if it were just the two of them, but when they added Paxton to the mix, it was a little more involved. Whenever Paxton went along for the ride, it was a given that he would need to have his feedings set up every three hours, medications that needed to be given, and diapers that neeeed to be changed. They had to find a means to keep his milk and medications cold the entire time, but also be able to warm his milk when he needed to eat. It was not an easy feat to travel with a small child, especially for long periods of time.
The good news was that Paxton was so easygoing. He did well on the ride up to Pennsylvania other than getting overheated in his car seat, which was normal for him. The rest of the way was smooth sailing.
Once they finally arrived to the party, everyone fell in love with Paxton instantly. They all thought that he looked so good for what he had been through. Susanne thought that all of Scott's friends were so welcoming and she could tell how much they truly cared for her husband. The evening was full of a lot of food and fellowship. The best part of the night was when everyone got to hear a sweet treat from Scott and one of his supervisors. They played their guitars and sang for everyone. Susanne fell in love with Scott all over again.
As it turned dark, they had to force themselves to leave even though they would have loved to stay longer. If it weren't for them having a party of their own tomorrow, they would have stayed all night.
They arrived back home safely and everyone was still hard at work. They rounded out the night by arranging an assembly line to make the party favors. Everyone had their own assigned job and it worked really well. The party favors included a variety of cookies, some of which were handmade. The end product was perfect. Susanne and Scott were very pleased.
Before they laid their heads down on their pillows, Susanne and Scott were hoping for a good turn out. They truly wanted to be able to thank everyone in person for all of their continued support and love throughout the whole process. They would not have survived without them.
Before Scott and Susanne knew it, it was time to leave for the intern potluck party that was being held at the home of one of Scott's supervisors' in Pennsylvania. The purpose for this party was for the old interns to be able to pass the baton to the new interns. It was a way to embrace them as they are just starting out and give them any last words of wisdom.
Susanne was excited that she would finally get to meet everyone that Scott had worked with over the last year. It was almost embarassing that this was the first opportunity that she had had to do this since he started last August. Looking back, the timing was just never right for one reason or another. In the beginning of Scott's internship, Susanne was working full time and pregnant. After Paxton was born,... well, let's just say it was understood why she couldn't make it up there since that time.
This would also be the first time that everyone was going to get the chance to meet Paxton. It was so awesome that he would finally have the opportunity to meet all of the wonderful, supportive people that had been praying for him during his journey.
The one thing that Scott and Susanne were not looking forward to was the three hour drive to and from Pennsylvania. It would have been a piece of cake if it were just the two of them, but when they added Paxton to the mix, it was a little more involved. Whenever Paxton went along for the ride, it was a given that he would need to have his feedings set up every three hours, medications that needed to be given, and diapers that neeeed to be changed. They had to find a means to keep his milk and medications cold the entire time, but also be able to warm his milk when he needed to eat. It was not an easy feat to travel with a small child, especially for long periods of time.
The good news was that Paxton was so easygoing. He did well on the ride up to Pennsylvania other than getting overheated in his car seat, which was normal for him. The rest of the way was smooth sailing.
Once they finally arrived to the party, everyone fell in love with Paxton instantly. They all thought that he looked so good for what he had been through. Susanne thought that all of Scott's friends were so welcoming and she could tell how much they truly cared for her husband. The evening was full of a lot of food and fellowship. The best part of the night was when everyone got to hear a sweet treat from Scott and one of his supervisors. They played their guitars and sang for everyone. Susanne fell in love with Scott all over again.
As it turned dark, they had to force themselves to leave even though they would have loved to stay longer. If it weren't for them having a party of their own tomorrow, they would have stayed all night.
They arrived back home safely and everyone was still hard at work. They rounded out the night by arranging an assembly line to make the party favors. Everyone had their own assigned job and it worked really well. The party favors included a variety of cookies, some of which were handmade. The end product was perfect. Susanne and Scott were very pleased.
Before they laid their heads down on their pillows, Susanne and Scott were hoping for a good turn out. They truly wanted to be able to thank everyone in person for all of their continued support and love throughout the whole process. They would not have survived without them.
Friday, August 13, 2010
Let's Put the Plan Into Action
Scott and Poppy got up early to head out to the townhouse to fix a few things. Scott and Susanne wanted the place to be close to perfection since it was up for rent again. This was important because they wanted their place to stand out compared to the other townhomes that were available, especially with how the economy was looking the way it was. Susanne couldn't think of two better handymen for the job.
Gigi and Susanne stayed behind with Paxton. He had an occupational therapy appointment this morning. This session was going to focus on his oral motor skills. The therapist was trying to introduce specific interventions which provided assisted movement to activate muscle contraction and to provide movement against resistance to build strength. After those muscles were stretched and warmed up, they would focus on his ability to suckle. Susanne had been unable to get Paxton interested in anything other than his WubbaNub pacifier over the last week. He had been getting more and more resistant to anything else that would come anywhere near his mouth. He would still let Susanne rub his gums and even place the toy that vibrated against his gums. He definitely showed signs that he thought it felt good. Susanne often wondered if he was teething, but she saw no other evidence that this was the case.
Susanne and Scott had decided a few weeks back that they wanted to throw a thank you party for everyone that had played such an integral role in supporting them through the roller coaster ride that they had been on since Paxton was born. They had planned on having the get-together this Sunday. They were very lucky to have the help of Susanne's parents and Moppy. They were sure they would be unable to pull it off without them. There was a lot of work to be done, but Susanne didn't mind. She actually looked forward to cooking. She had recently become addicted to a new show called "Cupcake Wars". This had motivated her to try her hand at making cupcakes and getting creative with their decorations. She had also found a cool cookie cutter that allowed her to personalize each with a special message. How fun!
Gigi and Susanne stayed behind with Paxton. He had an occupational therapy appointment this morning. This session was going to focus on his oral motor skills. The therapist was trying to introduce specific interventions which provided assisted movement to activate muscle contraction and to provide movement against resistance to build strength. After those muscles were stretched and warmed up, they would focus on his ability to suckle. Susanne had been unable to get Paxton interested in anything other than his WubbaNub pacifier over the last week. He had been getting more and more resistant to anything else that would come anywhere near his mouth. He would still let Susanne rub his gums and even place the toy that vibrated against his gums. He definitely showed signs that he thought it felt good. Susanne often wondered if he was teething, but she saw no other evidence that this was the case.
Susanne and Scott had decided a few weeks back that they wanted to throw a thank you party for everyone that had played such an integral role in supporting them through the roller coaster ride that they had been on since Paxton was born. They had planned on having the get-together this Sunday. They were very lucky to have the help of Susanne's parents and Moppy. They were sure they would be unable to pull it off without them. There was a lot of work to be done, but Susanne didn't mind. She actually looked forward to cooking. She had recently become addicted to a new show called "Cupcake Wars". This had motivated her to try her hand at making cupcakes and getting creative with their decorations. She had also found a cool cookie cutter that allowed her to personalize each with a special message. How fun!
Wednesday, August 11, 2010
We Miss Mommy
Susanne had to work today so it was another opportunity for the men to rule the roost while she was away. Scott was excited to get to spend some time being a daddy. He was excited that he would finally get to try his hand at feeding, changing, holding, and playing with his little boy. Scott always enjoyed getting to experience all of the fun things that Susanne got to do while he was gone in Pennsylvania. Scott definitely thought that the best of these things was how Paxton would open his eyes in the morning, take a few minutes to focus, and then finally look up to see his daddy standing over him. Watching his face light up was the most amazing feeling. It fascinated Scott that Paxton's little brain was able to actually recognize who it was that he was looking at and that it made him happy!
The entire day was spent adhering to the baby's routine. Changing, playing, medicating, feeding, putting him to bed, and starting again every three hours. Scott was lucky that Paxton had an uneventful day. Thankfully, he did not have to deal with any vomiting or gagging episodes. He also did not have any trouble settling down for a nap today. Scott sure felt like he was getting the hang of things.
Scott and Paxton sure missed mommy. They couldn't wait for her to get home so they could tell her about the fun day they had together!
The entire day was spent adhering to the baby's routine. Changing, playing, medicating, feeding, putting him to bed, and starting again every three hours. Scott was lucky that Paxton had an uneventful day. Thankfully, he did not have to deal with any vomiting or gagging episodes. He also did not have any trouble settling down for a nap today. Scott sure felt like he was getting the hang of things.
Scott and Paxton sure missed mommy. They couldn't wait for her to get home so they could tell her about the fun day they had together!
Tuesday, August 10, 2010
Go Team Paxton!
Scott was starting to feel the negative effects of going to bed late and then having to get up at six o'clock in the morning to feed Paxton. This wasn't even the half of it since Susanne was there to help share the load. Susanne was thankful for the extra couple hours of sleep because she was up from around 3:30 am until about an hour later calming a very unhappy Paxton. For the last few days, he had been getting up shortly after his midnight feeding. He would wake up out of nowhere wailing as if he were in pain. After being comforted, he would calm right down. They initially thought it could be gas build-up so Susanne gave him a dose of Mylicon. She eventually got him to settle.
Their day started a little later than expected. Once they were finally up, Susanne made banana nut muffins for breakfast. It was so nice to have Scott to wake up next to.
Shortly after breakfast, they decided to clean the house some before the weekend rolled around. They got off to a slow start, especially because Susanne had some important phone calls to make before the end of the day.
They spent some quality time wth Paxton. Then they both took their turn doing therapy with the little guy. His head control continued to improve. He was visibly getting stronger and, of course, fatter by the minute. It was obvious at this point that he needed to upgrade to the next size in diapers.
After a long day of working hard, they decided to reward themselves by ordering dinner to be delivered to the house. Scott treated himself to another soda since he had gone three months without it. It was such a sweet treat after a long day. They snuggled on the couch and enjoyed each other's company the rest of the night. This was a little slice of heaven.
Their day started a little later than expected. Once they were finally up, Susanne made banana nut muffins for breakfast. It was so nice to have Scott to wake up next to.
Shortly after breakfast, they decided to clean the house some before the weekend rolled around. They got off to a slow start, especially because Susanne had some important phone calls to make before the end of the day.
They spent some quality time wth Paxton. Then they both took their turn doing therapy with the little guy. His head control continued to improve. He was visibly getting stronger and, of course, fatter by the minute. It was obvious at this point that he needed to upgrade to the next size in diapers.
After a long day of working hard, they decided to reward themselves by ordering dinner to be delivered to the house. Scott treated himself to another soda since he had gone three months without it. It was such a sweet treat after a long day. They snuggled on the couch and enjoyed each other's company the rest of the night. This was a little slice of heaven.
Monday, August 9, 2010
Big Boy
It sure was nice to have an extra set of hands around the house. It especially came in handy when Susanne had to take Paxton to his appointments. Today, Paxton had an appointment with his cardiologist. Susanne was running on no sleep from the night before. She had decided to get up for the six o'clock feeding since the day before Paxton gave Aunt Kerry a real scare. He did well this morning up until right before they left the house. His timing was always impeccable. After rushing around to get out the door, they finally were on the road. Susanne got to sit in the back seat next to Paxton on the car ride over. She got a lot accomplished. She was able to set up Paxton's next NG feeding and pump.
Paxton weighed in at 14 lbs 3 oz today. He had actually graduated to the seventh percentile for his weight, whereas he used to be in the less-than-fifth percentile.
Paxton weighed in at 14 lbs 3 oz today. He had actually graduated to the seventh percentile for his weight, whereas he used to be in the less-than-fifth percentile.
Sunday, August 8, 2010
Lights, Music, Vibration!
Moppy's boss was sad that he was not going to be able to make it to Paxton's thank you party that was coming up, so he sent Moppy home with a gift for the bug. It was a cute little toy that lit up, played music, and vibrated. The vibrations corresponded with the music and lights so that when Susanne put the flexible rubber "wings" of the toy in Paxton's mouth, he would have a little concert and light show going on against his gums. Scott and Susanne couldn't tell yet whether Paxton might be beginning to teeth, but with as much fuss that he would put up whenever anyone tried to put anything in his mouth, the fact that he seemed soothed by the vibrations of the toy was an indication that some teeth might be trying to pop through. He would sit quietly, looking at his mommy, with his mouth full of shaking, blinking, musical plastic. What a great gift!
Scott and Susanne sat and chatted with Moppy for a while, catching up and enjoying the slow Sunday morning. Once Moppy left, Susanne, Scott, and Paxton decided to spend the rest of the day together watching TV and enjoying the fact that daddy was finally home for good.
Scott and Susanne sat and chatted with Moppy for a while, catching up and enjoying the slow Sunday morning. Once Moppy left, Susanne, Scott, and Paxton decided to spend the rest of the day together watching TV and enjoying the fact that daddy was finally home for good.
Saturday, August 7, 2010
Shotgun Fluffy, Neumanns In Tow
Scott had a few more things left in York, PA that he was unable to bring home with him in the previous trip. Moppy offered to watch Paxton so he could finish up while Susanne was at work and in turn he wouldn't miss anymore time with her. Chief was nice enough to lend Scott his truck so that he could fit everything that was left into one load. This would prevent future trips in the coming week. On top of that, the Neumanns had offered their muscles and car space to assist Scott in the endeavor so he wouldn't have to try to tackle it all on his own. If that wasn't enough, Fluffy Diaz also agreed to accompany Scott for the ride back to the town that abandoned him. What a brave little pooch. Scott was swimming in support and knew that this trip would be productive.
It quickly became apparent that the Neumanns meant business. The temperature was in the 90s, but that didn't slow down Uncle Looney and Aunt Leeny. They were a packing and hauling machine. Scott was in awe of how efficiently they moved and so grateful to have them with him. When it was all over, the apartment was empty and the cars were full to the max. It was back to Virginia they went, that was after a quick stop in Gettysburg for milkshakes from the Cannonball Malt Shoppe, of course!
Scott was so happy he was returning home to Paxton and Susanne, knowing that he would never have to spend another night in York without them again. He had been waiting for this day to come for a very long time. The start of a new chapter in their lives was in sight.
Fluffy Diaz was such a great travel buddy. He rode the whole way to and from PA in Scott's lap. It was so heartbreaking to think that anyone could get rid of such a sweet dog without a second thought. Scott felt so good about rescuing him. He knew that Fluffy would have no problem finding a new family who would love him the way he deserved to be loved. With such a pleasant disposition and the cutest face ever, Fluffy was destined for greatness!
After everything was unloaded from the vehicles, Scott got cleaned up for an evening of celebration. He rode with the Neumann's back to their house to wait for Susanne to arrive once she finished work. Moppy had agreed to continue watching Paxton throughout the night so that Scott and Susanne could stay out as long as they wanted.
When Susanne finally showed up, they all went to dinner together. They had a purpose for their evening. There were finally going to be able to celebrate the fact that Aunt Leeny's passed her psychology licensing exam weeks before. This was the first time since then that they all had a chance to get together to focus on this wonderful accomplishment. It was also the perfect opportunity for everyone to commend Scott for finishing up his internship. After dinner, they went to a local bar. This was a nice pit stop before heading back to the Neumanns' place to spend some time relaxing with some oat sodas and sipping on some premium tequila. It was a perfect end to a perfect night.
Scott and Susanne were continually reminded how fortunate they were to have the Neumann's in their lives. They had been nothing but supportive and selfless since the day they met them. Paxton was so lucky to come into this world with people like them anticipating his arrival ready to smother him with love. They had been there since the day he was born sitting in the waiting room awaiting the good news. Scott and Susanne were incredibly blessed to have such extraordinary friends.
It quickly became apparent that the Neumanns meant business. The temperature was in the 90s, but that didn't slow down Uncle Looney and Aunt Leeny. They were a packing and hauling machine. Scott was in awe of how efficiently they moved and so grateful to have them with him. When it was all over, the apartment was empty and the cars were full to the max. It was back to Virginia they went, that was after a quick stop in Gettysburg for milkshakes from the Cannonball Malt Shoppe, of course!
Scott was so happy he was returning home to Paxton and Susanne, knowing that he would never have to spend another night in York without them again. He had been waiting for this day to come for a very long time. The start of a new chapter in their lives was in sight.
Fluffy Diaz was such a great travel buddy. He rode the whole way to and from PA in Scott's lap. It was so heartbreaking to think that anyone could get rid of such a sweet dog without a second thought. Scott felt so good about rescuing him. He knew that Fluffy would have no problem finding a new family who would love him the way he deserved to be loved. With such a pleasant disposition and the cutest face ever, Fluffy was destined for greatness!
After everything was unloaded from the vehicles, Scott got cleaned up for an evening of celebration. He rode with the Neumann's back to their house to wait for Susanne to arrive once she finished work. Moppy had agreed to continue watching Paxton throughout the night so that Scott and Susanne could stay out as long as they wanted.
When Susanne finally showed up, they all went to dinner together. They had a purpose for their evening. There were finally going to be able to celebrate the fact that Aunt Leeny's passed her psychology licensing exam weeks before. This was the first time since then that they all had a chance to get together to focus on this wonderful accomplishment. It was also the perfect opportunity for everyone to commend Scott for finishing up his internship. After dinner, they went to a local bar. This was a nice pit stop before heading back to the Neumanns' place to spend some time relaxing with some oat sodas and sipping on some premium tequila. It was a perfect end to a perfect night.
Scott and Susanne were continually reminded how fortunate they were to have the Neumann's in their lives. They had been nothing but supportive and selfless since the day they met them. Paxton was so lucky to come into this world with people like them anticipating his arrival ready to smother him with love. They had been there since the day he was born sitting in the waiting room awaiting the good news. Scott and Susanne were incredibly blessed to have such extraordinary friends.
Friday, August 6, 2010
Congratulations Dr. Padilla!
Congratulations Dr. Scott Matthew Padilla. Your hardwork and determination definitely paid off. I am so proud of you. You are an inspiration to all. You were born to do what you do. You are making such a difference in so many people's lives including mine. I love you very much and look forward to starting this new chapter in our lives together. Way to go my love!
AMALAM,
Sus
AMALAM,
Sus
I'm Coming Home
Aunt Leah was so kind to make breakfast for everyone this morning. Susanne had been curious about Sweet Potato Pancakes and Leah just so happened to have a recipe for them. She decided to try a recipe from Jessica Seinfeld's cookbook, "Deceptively Delicious". They were suprisingly delicious, especially with a few slices of bacon on the side.
Paxton had an appointment this morning. Aunt Leah and Aunt Kerry were able to sit in on the therapy session. Paxton experienced a little stage fright. He did not do as well as he had the last few times. It did not seem to help that he had a gagging episode right before the therapist arrived. Paxton was becoming a pro at swatting his mother's hands away when she would attempt to work inside his mouth for anything. He had learned to predict her every move. It just did not seem natural to restrain him until he conceded, but that was what was recommended to get him to understand that once he relaxed, it wasn't threatening. After a neverending battle, Susanne suggested that they try a different approach. She was successful with getting him to suckle on his pacifier, but that was about it. He got really worked up and it wasn't worth him burning all of those calories.
Later in the day, Aunt Leah and Aunt Kerry decided to try to encourage Susanne to get some things checked off of her to do list. They went to the grocery store for her after Paxton went down for an afternoon nap. She was able to get a few things done, but the time flew by quickly. The phone calls she had to make always took much longer than she would like. Since most of the phone calls required an exhorbitant amount of patience, she could only handle a few at a time.
For dinner, the girls decided to cook another awesome meal together. They always felt so connected in the kitchen. It brought them back to some of the most memorable times from their childhood. Their motto had always been eat, drink, and be merry. Susanne decided to take on the challenge of grilling for the second night in a row. When she went outside to start the grill, she noticed that the ignitor button came loose. Susanne decided to "phone a friend" to see what to do next. Scott informed her that she would have to turn on the grill, light a match, and stick it into a hole on the side of the grill to get it started. He warned her about the loud burst of sound that would result from this process. Susanne had Kerry stand outside with her for moral support and to be on standby if she needed an ambulance. Luckily, everything turned out fine. The end result was an amazing authentic mexican chicken dish.
They watched a movie as they ate their well deserved dinner. Susanne was notorious for picking out bad movies. She certainly lived up to her name tonight. It was so horrible that by the end of the movie, everyone was up doing their own thing.
Susanne was so excited that Scott was finally moving back home. He had completed his internship. It was weird to think that an entire year had passed them by. Susanne had long awaited his arrival. She couldn't wait for him to actually be home for good. This was a day they had been looking forward to since the day he had left.
When Scott walked through the door, Susanne was shocked to find that Scott was not alone. He had managed to rescue a dog the very night he was leaving Pennsylvania. This would be his fourth rescue of the year. His name was Fluffy Diaz and he was a Schnoodle, which is a mixture of a miniature Schnauzer and miniature Poodle. The cutest thing about Fluffy Diaz was that one ear stood straight up while the other flopped over. The not so cute thing about Fluffy Diaz was that he was still intact and he had fleas. Susanne was going to have to take care of both problems ASAP.
Earlier in the evening, Susanne and her sisters had made Scott some celebratory sugar cookies that had personalized messages engraved in them. She thought that this would be a creative way to welcome him home. She wanted to make sure he knew how proud she was of him and all of his accomplishments. At last, he was a doctor and he deserved recognition. Susanne was so proud of him and how far he had come. Even though it was five years ago when Scott's journey began, it felt like it was just yesterday. Susanne remembered how difficult it was to live without him the first go round, which was during their first year of marriage. Susanne was finishing up veterinary school as he started his graduate program. This past year apart was much more challenging for them both due to the circumstances. They hoped to never have to live apart again. She was glad that it had all finally come to an end and they would be able to start their lives together as a family. This would be the first time since they started dating in 2001 that one of them would not be in school. What would they every do with two incomes...oh yeah, pay off student loans and don't forget Paxton's medical bills.
Paxton had an appointment this morning. Aunt Leah and Aunt Kerry were able to sit in on the therapy session. Paxton experienced a little stage fright. He did not do as well as he had the last few times. It did not seem to help that he had a gagging episode right before the therapist arrived. Paxton was becoming a pro at swatting his mother's hands away when she would attempt to work inside his mouth for anything. He had learned to predict her every move. It just did not seem natural to restrain him until he conceded, but that was what was recommended to get him to understand that once he relaxed, it wasn't threatening. After a neverending battle, Susanne suggested that they try a different approach. She was successful with getting him to suckle on his pacifier, but that was about it. He got really worked up and it wasn't worth him burning all of those calories.
Later in the day, Aunt Leah and Aunt Kerry decided to try to encourage Susanne to get some things checked off of her to do list. They went to the grocery store for her after Paxton went down for an afternoon nap. She was able to get a few things done, but the time flew by quickly. The phone calls she had to make always took much longer than she would like. Since most of the phone calls required an exhorbitant amount of patience, she could only handle a few at a time.
For dinner, the girls decided to cook another awesome meal together. They always felt so connected in the kitchen. It brought them back to some of the most memorable times from their childhood. Their motto had always been eat, drink, and be merry. Susanne decided to take on the challenge of grilling for the second night in a row. When she went outside to start the grill, she noticed that the ignitor button came loose. Susanne decided to "phone a friend" to see what to do next. Scott informed her that she would have to turn on the grill, light a match, and stick it into a hole on the side of the grill to get it started. He warned her about the loud burst of sound that would result from this process. Susanne had Kerry stand outside with her for moral support and to be on standby if she needed an ambulance. Luckily, everything turned out fine. The end result was an amazing authentic mexican chicken dish.
They watched a movie as they ate their well deserved dinner. Susanne was notorious for picking out bad movies. She certainly lived up to her name tonight. It was so horrible that by the end of the movie, everyone was up doing their own thing.
Susanne was so excited that Scott was finally moving back home. He had completed his internship. It was weird to think that an entire year had passed them by. Susanne had long awaited his arrival. She couldn't wait for him to actually be home for good. This was a day they had been looking forward to since the day he had left.
When Scott walked through the door, Susanne was shocked to find that Scott was not alone. He had managed to rescue a dog the very night he was leaving Pennsylvania. This would be his fourth rescue of the year. His name was Fluffy Diaz and he was a Schnoodle, which is a mixture of a miniature Schnauzer and miniature Poodle. The cutest thing about Fluffy Diaz was that one ear stood straight up while the other flopped over. The not so cute thing about Fluffy Diaz was that he was still intact and he had fleas. Susanne was going to have to take care of both problems ASAP.
Earlier in the evening, Susanne and her sisters had made Scott some celebratory sugar cookies that had personalized messages engraved in them. She thought that this would be a creative way to welcome him home. She wanted to make sure he knew how proud she was of him and all of his accomplishments. At last, he was a doctor and he deserved recognition. Susanne was so proud of him and how far he had come. Even though it was five years ago when Scott's journey began, it felt like it was just yesterday. Susanne remembered how difficult it was to live without him the first go round, which was during their first year of marriage. Susanne was finishing up veterinary school as he started his graduate program. This past year apart was much more challenging for them both due to the circumstances. They hoped to never have to live apart again. She was glad that it had all finally come to an end and they would be able to start their lives together as a family. This would be the first time since they started dating in 2001 that one of them would not be in school. What would they every do with two incomes...oh yeah, pay off student loans and don't forget Paxton's medical bills.
Thursday, August 5, 2010
Who, What, When, Where...Nobody Knows
It was difficult to function on limited hours of sleep. One would think at this point that Susanne would be a pro at this, but it never seemed to get easier. Susanne was thankful that Paxton did not wake up gagging at the 6:00am feeding, which he had done the couple days prior. She was hopeful that he would make it all day without having one of those episodes. Unfortunately, he decided to save it up for right before they had to leave for his cardiology appointment. His timing was impeccable.
Susanne was relieved to have Kerry with her again for Paxton's appointments. It was not only helpful to have a chauffeur, but also a second set of ears. The companionship wasn't half bad either. She was the perfect person to have along for the ride.
Paxton saw a different cardiologist today. His regular cardiologist was away on vacation. He ended up seeing the original cardiologist that diagnosed his problem on the day he was born.
Paxton weighed 14 lbs 3 oz today and was around 25" long. His growth rate was impressive, so much so that the cardiologist had to increase the dosages of some of his medications. His oxygen levels were starting to trend downwards a little, which was to be expected. This just meant that he was one step closer to needing his next heart surgery. Today, they were averaging around 79.
The cardiologist spent a lot of time discussing the endless possibilities for Paxton. No one was quite sure at this point which one of those possibilities would become Paxton's destiny. Paxton's medical records had been mailed to Children's Hospital of Boston, Children's Hospital of Philadelphia, Mayo Clinic in Minnesota, and discussed at the recent conferences held here in Northern Virginia. Also, he had been evaluated by the cardiology team at Cincinnati Children's Hospital that had their own opinions as to what surgery needed to be done. Paxton would need to come back in one month for follow up. From now until then, everyone would be trying to decide what surgery would benefit Paxton the most, when it should be done, and who should perform it. Ebstein's Anomaly was such a rare condition that they did not have any valid research studies available to reference to determine what would prove to give the best outcome. Susanne was informed that people with Ebstein's Anomaly vary so much with the severity of the disease and their clinical symptoms. Each individual usually required their own unique treatment plan. The only thing that they knew for sure at this point was that Paxton had severe Ebstein's and his heart would require addressing before the year came to an end. Susanne was anxious to see what the future would hold.
After the appointment, Susanne had to stop by her work to call back a client with some test results. She knew better than anyone that it was almost tortorous to have to wait to get answers in regards to a loved one that was sick. If she could help alleviate that extra source of stress for others, she wanted to.
Susanne was able to run a few errands because Kerry so kindly drove for her. Kerry was able to stay in the air conditioned car with Paxton while Susanne ran in and out of places. This made things a lot easier. Susanne still had to feed Paxton three times in the car as well as pump. It felt like the good ol' days.
Once Susanne got home, it was about time to feed Paxton again. Leah was able to squeeze in some therapy with him before he had to go down for the night. During this time, Susanne and Kerry were able to hang out with Cole.
After the boys went to bed, it was finally time to cook some dinner. Susanne had found a delicious recipe for Mexican style hamburgers. She followed the recipe some, but added in her own little twist. This was what she did best. She also decided to make homemade french fries in the fry daddy. By the time the food was finished, she was spent. She did not have any time to sit down all day. She couldn't wait to curl up on the couch and relax.
Susanne was relieved to have Kerry with her again for Paxton's appointments. It was not only helpful to have a chauffeur, but also a second set of ears. The companionship wasn't half bad either. She was the perfect person to have along for the ride.
Paxton saw a different cardiologist today. His regular cardiologist was away on vacation. He ended up seeing the original cardiologist that diagnosed his problem on the day he was born.
Paxton weighed 14 lbs 3 oz today and was around 25" long. His growth rate was impressive, so much so that the cardiologist had to increase the dosages of some of his medications. His oxygen levels were starting to trend downwards a little, which was to be expected. This just meant that he was one step closer to needing his next heart surgery. Today, they were averaging around 79.
The cardiologist spent a lot of time discussing the endless possibilities for Paxton. No one was quite sure at this point which one of those possibilities would become Paxton's destiny. Paxton's medical records had been mailed to Children's Hospital of Boston, Children's Hospital of Philadelphia, Mayo Clinic in Minnesota, and discussed at the recent conferences held here in Northern Virginia. Also, he had been evaluated by the cardiology team at Cincinnati Children's Hospital that had their own opinions as to what surgery needed to be done. Paxton would need to come back in one month for follow up. From now until then, everyone would be trying to decide what surgery would benefit Paxton the most, when it should be done, and who should perform it. Ebstein's Anomaly was such a rare condition that they did not have any valid research studies available to reference to determine what would prove to give the best outcome. Susanne was informed that people with Ebstein's Anomaly vary so much with the severity of the disease and their clinical symptoms. Each individual usually required their own unique treatment plan. The only thing that they knew for sure at this point was that Paxton had severe Ebstein's and his heart would require addressing before the year came to an end. Susanne was anxious to see what the future would hold.
After the appointment, Susanne had to stop by her work to call back a client with some test results. She knew better than anyone that it was almost tortorous to have to wait to get answers in regards to a loved one that was sick. If she could help alleviate that extra source of stress for others, she wanted to.
Susanne was able to run a few errands because Kerry so kindly drove for her. Kerry was able to stay in the air conditioned car with Paxton while Susanne ran in and out of places. This made things a lot easier. Susanne still had to feed Paxton three times in the car as well as pump. It felt like the good ol' days.
Once Susanne got home, it was about time to feed Paxton again. Leah was able to squeeze in some therapy with him before he had to go down for the night. During this time, Susanne and Kerry were able to hang out with Cole.
After the boys went to bed, it was finally time to cook some dinner. Susanne had found a delicious recipe for Mexican style hamburgers. She followed the recipe some, but added in her own little twist. This was what she did best. She also decided to make homemade french fries in the fry daddy. By the time the food was finished, she was spent. She did not have any time to sit down all day. She couldn't wait to curl up on the couch and relax.
Wednesday, August 4, 2010
Wild Goose Chase
Susanne had to get up to take care of Paxton this morning because he had been continuing to have gagging episodes and it was too much to expect Kerry to take care of. It was definitely not a pleasant experience to watch. There was nothing that could be done for him other than to comfort him and feel sorry for him. Susanne had resorted to setting him up in her bed between her and Kerry like they had done before. This always seemed to calm him the fastest. Susanne never minded extra snuggle time with the bug.
Susanne hated to leave for work and leave her baby behind. She was comforted by the fact that he would be left in good hands. Kerry was going to be the sole person in charge of giving him all of his medications and setting up his NG feedings. Susanne was so impressed with her new found skill.
Susanne only got called one time at work, which was because Kerry couldn't hear the appropriate sound with the stethoscope to confirm accurate tube placement. She ended up figuring it out on her own and all was well.
The rest of the day was uneventful. Leah worked with Paxton on multiple elements of his therapy. He also got plenty of quality time with the rest of the gang including Cole. Cole and Paxton definitely kept both ladies very busy all day.
Susanne found herself in a frustrating predicament at work. When she went to pump on her break, she realized that she had left her plug at home. She did have a cordless plug, but the batteries were dead...go figure.
Susanne ended up calling the pediatric surgeon's office to try to schedule a date for Paxton's G-tube placement. She was shocked at the lack of help she received. She was told that the pediatric surgeon was on vacation until September. When Susanne tried to proceed to schedule an appointment with him for sometime in September, she was told that they could not do that because the schedule did not go out that far. She asked if it would be possible to get an appointment with a different doctor from their practice and they declined her request. Susanne asked to speak with an office manager so she could explain the time constraints that she was dealing with. Paxton's G-tube needed to be placed well before he would need to go under for his heart surgery. She was then informed that the office manager was also on vacation and there was no one else in the office that could help her. Susanne decided that it was time to call Paxton's pediatrician to ask for some assistance. Later that day, Paxton's pediatrician called her back and said that she had no luck with them either. She was furious with the way they were handling the situation and could not believe how apathetic they were. She told Susanne that if it was her child, she would take him elsewhere. Once again, Susanne was left to go on a wild goose chase to find someone who was sensitive to the situation and could help her son.
Susanne got home late that evening. She was pleasantly surprised to see Scott there when she arrived. Chief had gone up this afternoon to help Scott load up some of his things to help expedite the moving process. They were able to move most of the large pieces of furniture, which was a major relief. The only downfall was that it rained on the way home.
Susanne felt so surrounded in love. Leah, Kerry, and Scott had prepared a wonderful meal for dinner. Even though it was very late, they were so thoughtful to wait for Susanne to get home before eating. It was just perfect.
Susanne hated to leave for work and leave her baby behind. She was comforted by the fact that he would be left in good hands. Kerry was going to be the sole person in charge of giving him all of his medications and setting up his NG feedings. Susanne was so impressed with her new found skill.
Susanne only got called one time at work, which was because Kerry couldn't hear the appropriate sound with the stethoscope to confirm accurate tube placement. She ended up figuring it out on her own and all was well.
The rest of the day was uneventful. Leah worked with Paxton on multiple elements of his therapy. He also got plenty of quality time with the rest of the gang including Cole. Cole and Paxton definitely kept both ladies very busy all day.
Susanne found herself in a frustrating predicament at work. When she went to pump on her break, she realized that she had left her plug at home. She did have a cordless plug, but the batteries were dead...go figure.
Susanne ended up calling the pediatric surgeon's office to try to schedule a date for Paxton's G-tube placement. She was shocked at the lack of help she received. She was told that the pediatric surgeon was on vacation until September. When Susanne tried to proceed to schedule an appointment with him for sometime in September, she was told that they could not do that because the schedule did not go out that far. She asked if it would be possible to get an appointment with a different doctor from their practice and they declined her request. Susanne asked to speak with an office manager so she could explain the time constraints that she was dealing with. Paxton's G-tube needed to be placed well before he would need to go under for his heart surgery. She was then informed that the office manager was also on vacation and there was no one else in the office that could help her. Susanne decided that it was time to call Paxton's pediatrician to ask for some assistance. Later that day, Paxton's pediatrician called her back and said that she had no luck with them either. She was furious with the way they were handling the situation and could not believe how apathetic they were. She told Susanne that if it was her child, she would take him elsewhere. Once again, Susanne was left to go on a wild goose chase to find someone who was sensitive to the situation and could help her son.
Susanne got home late that evening. She was pleasantly surprised to see Scott there when she arrived. Chief had gone up this afternoon to help Scott load up some of his things to help expedite the moving process. They were able to move most of the large pieces of furniture, which was a major relief. The only downfall was that it rained on the way home.
Susanne felt so surrounded in love. Leah, Kerry, and Scott had prepared a wonderful meal for dinner. Even though it was very late, they were so thoughtful to wait for Susanne to get home before eating. It was just perfect.
Tuesday, August 3, 2010
One G-tube Coming Right Up
Aunt Kerry helped Susanne get Paxton ready for his morning therapy appointment. She was able to sit and watch a session for the first time. She was fascinated with all of the different activities and techniques that were asked of Paxton. She could get a better sense of what it was that Susanne had to work on with him on a daily basis. She could even see that even things that appeared to be play activities were actually building his strength and helping him improve developmentally. He did well during his appointment and had shown progress from the week prior, which was always rewarding. It helped Susanne feel like her hard work was paying off.
Susanne and Kerry decided to give Paxton a bath after he was finished with his appointment. They set up his bathtub in the hallway so that there was enough room for the two of them to bathe him. They hadn't even done more than place a towel on the floor before James decided he wanted to assist them. He laid right in the middle of everything. What a good big brother he was!
Kerry did a nice job of picking out an adorable outfit for Paxton to wear for the day. Too bad that he was in it all of ten minutes before he decided to poop everywhere so that it creeped up the back of the diaper and soiled his shirt. Nice one Paxton!
Kerry and Susanne spent the rest of the morning getting everything prepared that they would need for Paxton's appointment at the gastroenterologist. Today he was going to have a consult for a G-tube placement. Hopefully, they would be able to schedule the procedure within a timely manner. They would just have to wait and see.
They arrived at the appointment on time, which was impressive especially since it was Susanne's first time at this office. They didn't have to wait too long before they were seen, which was nice. The nurse got a pretty extensive history from Susanne. She was used to going through Paxton's entire past because she had to do it all too often. She felt more comfortable doing it this way as well because she had noticed a trend with the clinicians not reading Paxton's medical history before coming into the exam room for his appointments. Most of them would miss key information or they were not well informed about his medical conditions. Susanne had even found that some of the summaries that previous doctors had written about Paxton's background had some incorrect information in them. This could be dangerous for Paxton.
The gastroenterologist educated Susanne and Kerry on the procedure that she felt best suited Paxton. They were told that he was a good candidate for a G-tube button that would be placed laprascopically. This was the procedure they chose most commonly for children that had concurrent heart problems. More than likely he would have a MIC-Key button placed sometime within the next few weeks. This type of button would be less painful for Paxton long term and could be switched out by the parent as he grew in size. This was not the case for the other option. Susanne was well informed of all of the potential risks and complications with the procedure. She wasn't surprised by this information at all. She knew from doing surgical procedures herself as a veterinarian, that no matter how routine it was, there was always a potential for complications, especially if the patient had to undergo general anesthesia. Susanne made sure to ask all of her questions before they headed out. She felt really good about making this decision for Paxton as a next step. She thought that it would prove to be beneficial to his progress with oral feedings in the long run. She just hoped she was right.
Susanne and Kerry ran a couple of errands before heading home. Susanne stopped by work to pick up Paxton's pack-n-play from the office nursery for Cole to use when he arrived this evening. Julie finally got to meet the last of Susanne's three sisters. She had met everyone thus far, including Susanne's parents, with the exception of Kerry.
Susanne and Kerry arrived home around the same time that Leah got there. They were both so happy that they made it safe and sound. Even though the three of them just finished spending the previous weekend together, they still had so much to catch up on. It looked like it was going to be another late night in the Padilla household.
Susanne and Kerry decided to give Paxton a bath after he was finished with his appointment. They set up his bathtub in the hallway so that there was enough room for the two of them to bathe him. They hadn't even done more than place a towel on the floor before James decided he wanted to assist them. He laid right in the middle of everything. What a good big brother he was!
Kerry did a nice job of picking out an adorable outfit for Paxton to wear for the day. Too bad that he was in it all of ten minutes before he decided to poop everywhere so that it creeped up the back of the diaper and soiled his shirt. Nice one Paxton!
Kerry and Susanne spent the rest of the morning getting everything prepared that they would need for Paxton's appointment at the gastroenterologist. Today he was going to have a consult for a G-tube placement. Hopefully, they would be able to schedule the procedure within a timely manner. They would just have to wait and see.
They arrived at the appointment on time, which was impressive especially since it was Susanne's first time at this office. They didn't have to wait too long before they were seen, which was nice. The nurse got a pretty extensive history from Susanne. She was used to going through Paxton's entire past because she had to do it all too often. She felt more comfortable doing it this way as well because she had noticed a trend with the clinicians not reading Paxton's medical history before coming into the exam room for his appointments. Most of them would miss key information or they were not well informed about his medical conditions. Susanne had even found that some of the summaries that previous doctors had written about Paxton's background had some incorrect information in them. This could be dangerous for Paxton.
The gastroenterologist educated Susanne and Kerry on the procedure that she felt best suited Paxton. They were told that he was a good candidate for a G-tube button that would be placed laprascopically. This was the procedure they chose most commonly for children that had concurrent heart problems. More than likely he would have a MIC-Key button placed sometime within the next few weeks. This type of button would be less painful for Paxton long term and could be switched out by the parent as he grew in size. This was not the case for the other option. Susanne was well informed of all of the potential risks and complications with the procedure. She wasn't surprised by this information at all. She knew from doing surgical procedures herself as a veterinarian, that no matter how routine it was, there was always a potential for complications, especially if the patient had to undergo general anesthesia. Susanne made sure to ask all of her questions before they headed out. She felt really good about making this decision for Paxton as a next step. She thought that it would prove to be beneficial to his progress with oral feedings in the long run. She just hoped she was right.
Susanne and Kerry ran a couple of errands before heading home. Susanne stopped by work to pick up Paxton's pack-n-play from the office nursery for Cole to use when he arrived this evening. Julie finally got to meet the last of Susanne's three sisters. She had met everyone thus far, including Susanne's parents, with the exception of Kerry.
Susanne and Kerry arrived home around the same time that Leah got there. They were both so happy that they made it safe and sound. Even though the three of them just finished spending the previous weekend together, they still had so much to catch up on. It looked like it was going to be another late night in the Padilla household.
Monday, August 2, 2010
Roberto
Scott had to leave early this morning to head back to Pennsylvania. It was always so hard to say goodbye. They only had one more week before he was finished with his internship, which was so exciting. They could not believe that the end was so near.
Susanne got up with Scott to feed Paxton. Shortly after his morning feeding, he woke up dry heaving and gagging. Susanne quickly resolved the problem and got him happily playing in no time. He was keeping his hands by his side a lot more these days. His newest obsession was to lightly pat his belly with his hand. It almost looked like he was playing the drums. He was definitely smiling a whole lot. He was finding everything funny, which made Susanne feel good.
Susanne had missed Paxton so much overnight that she held him extra long this morning. He ended up falling asleep in her arms. She spent some time just staring at his sweet, angel face. There was nothing more peaceful than watching her baby sleep.
Aunt Kerry woke up mid-morning. Susanne was thankful that someone at least got to catch up on some sleep. Susanne showed Kerry all of the things that she had been learning in Paxton's therapy sessions. Kerry was impressed with his progress, especially with his improvements with lifting his head.
Later in the afternoon, Susanne showed Kerry the different techniques she had been working on with regard to oral feeding. Paxton was doing so well with the facial massage and rubbing of the gums. He eventually let her place her index finger in his mouth for him to suckle on. Finally, he was interested in his special bottle. At first, he was really gung ho about it, but that didn't last too long. He quickly became violent. It almost appeared as if he was trying to hit or punch Susanne when she would attempt to go near his mouth. He would make the most disgusted face at her as if she was feeding him something disgusting. If Susanne stopped to make sure he knew everything was okay, he would smile and carry on like nothing happened. It was very humorous to see how smart he was. He definitely knew that he had the upperhand in the situation. Let the stubborness begin.
Paxton did well throughout the day. Aunt Kerry volunteered to learn how to complete a NG feeding and give Paxton medications so that she would be able to help out when Susanne had to go to work. Susanne was always impressed with how eager her friends and family were to assist with Paxton's schedule because it could be overwhelming and intimidating, especially in the beginning. She appreciated all of the help that people had to offer.
Susanne was excited about tonight because the finale for "The Bachelorette" was coming on. She knew exactly which of the two men she would pick. She obviously had a thing for tall, dark, handsome men.
Susanne got up with Scott to feed Paxton. Shortly after his morning feeding, he woke up dry heaving and gagging. Susanne quickly resolved the problem and got him happily playing in no time. He was keeping his hands by his side a lot more these days. His newest obsession was to lightly pat his belly with his hand. It almost looked like he was playing the drums. He was definitely smiling a whole lot. He was finding everything funny, which made Susanne feel good.
Susanne had missed Paxton so much overnight that she held him extra long this morning. He ended up falling asleep in her arms. She spent some time just staring at his sweet, angel face. There was nothing more peaceful than watching her baby sleep.
Aunt Kerry woke up mid-morning. Susanne was thankful that someone at least got to catch up on some sleep. Susanne showed Kerry all of the things that she had been learning in Paxton's therapy sessions. Kerry was impressed with his progress, especially with his improvements with lifting his head.
Later in the afternoon, Susanne showed Kerry the different techniques she had been working on with regard to oral feeding. Paxton was doing so well with the facial massage and rubbing of the gums. He eventually let her place her index finger in his mouth for him to suckle on. Finally, he was interested in his special bottle. At first, he was really gung ho about it, but that didn't last too long. He quickly became violent. It almost appeared as if he was trying to hit or punch Susanne when she would attempt to go near his mouth. He would make the most disgusted face at her as if she was feeding him something disgusting. If Susanne stopped to make sure he knew everything was okay, he would smile and carry on like nothing happened. It was very humorous to see how smart he was. He definitely knew that he had the upperhand in the situation. Let the stubborness begin.
Paxton did well throughout the day. Aunt Kerry volunteered to learn how to complete a NG feeding and give Paxton medications so that she would be able to help out when Susanne had to go to work. Susanne was always impressed with how eager her friends and family were to assist with Paxton's schedule because it could be overwhelming and intimidating, especially in the beginning. She appreciated all of the help that people had to offer.
Susanne was excited about tonight because the finale for "The Bachelorette" was coming on. She knew exactly which of the two men she would pick. She obviously had a thing for tall, dark, handsome men.
Sunday, August 1, 2010
Grunt Burp Scratch
The weekend was coming to an end. Even though Paxton and his daddy were having a blast with their guys only weekend, they were very happy that mommy was coming home today.
Susanne and her sister, Kerry, were driving back from Asheville today. They had a wonderful time at Victoria's bachelorette party. They couldn't believe that their youngest sister was getting married in just a couple of months. They were so excited for her. The drive back home was much better than the drive down because Susanne had a co-pilot. The girls spent the entire time talking and catching up. It was amazing that they never ran out of things to chat about. It was so great to have the opportunity to reconnect after not seeing each other for a while. Even though they spent a lot of time keeping in touch over the phone, it made a huge difference to actually see each other in person.
Later in the day, Susanne and Kerry arrived home safely. They decided to bring Scott something yummy for dinner. He was so happy to see them both. After they kissed on Paxton, they ate their delicious dinner. Scott was excited to be able to catch up with Kerry.
After dinner, they were all waiting for Paxton to wake up so that Kerry could hold him before he went down for the night. She had only met him one time before, which was over the Fourth of July weekend. She had limited time to spend with him back then because there was so much going on. She was looking forward to devoting the week with him.
Once Paxton was up, Kerry got to hold him. It was obvious by the look on her face that Paxton had her under his spell. It was clear that she was in love.
Unfortunately, Paxton's NG tube had become loose and needed to be replaced. Aunt Kerry decided to be brave and witness the ordeal. It was always hard for Scott and Susanne to hear Paxton cry whenever his tube needed to be changed, but they had become somewhat used to it. This was the first time, however, that Aunt Kerry had to hear that heartbreaking sound and watch him fight them throughout the whole process. She was visibly affected by this and became a little emotional. It was clear that she cared about her new nephew very much. After all was said and done, Aunt Kerry got to comfort Paxton by holding him and loving on him. He really seemed to respond well to her. She made it all better.
Paxton was so lucky to have such an amazing family!
Susanne and her sister, Kerry, were driving back from Asheville today. They had a wonderful time at Victoria's bachelorette party. They couldn't believe that their youngest sister was getting married in just a couple of months. They were so excited for her. The drive back home was much better than the drive down because Susanne had a co-pilot. The girls spent the entire time talking and catching up. It was amazing that they never ran out of things to chat about. It was so great to have the opportunity to reconnect after not seeing each other for a while. Even though they spent a lot of time keeping in touch over the phone, it made a huge difference to actually see each other in person.
Later in the day, Susanne and Kerry arrived home safely. They decided to bring Scott something yummy for dinner. He was so happy to see them both. After they kissed on Paxton, they ate their delicious dinner. Scott was excited to be able to catch up with Kerry.
After dinner, they were all waiting for Paxton to wake up so that Kerry could hold him before he went down for the night. She had only met him one time before, which was over the Fourth of July weekend. She had limited time to spend with him back then because there was so much going on. She was looking forward to devoting the week with him.
Once Paxton was up, Kerry got to hold him. It was obvious by the look on her face that Paxton had her under his spell. It was clear that she was in love.
Unfortunately, Paxton's NG tube had become loose and needed to be replaced. Aunt Kerry decided to be brave and witness the ordeal. It was always hard for Scott and Susanne to hear Paxton cry whenever his tube needed to be changed, but they had become somewhat used to it. This was the first time, however, that Aunt Kerry had to hear that heartbreaking sound and watch him fight them throughout the whole process. She was visibly affected by this and became a little emotional. It was clear that she cared about her new nephew very much. After all was said and done, Aunt Kerry got to comfort Paxton by holding him and loving on him. He really seemed to respond well to her. She made it all better.
Paxton was so lucky to have such an amazing family!
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