Old Friend, Good Time.

One of Susanne's closest friends from high school was coming up to visit with her this afternoon. She was in the Outer Banks for the week visiting her sister and decided to make a special trip up to meet Paxton. Brandy was a long time friend that Susanne was so excited to see. She currently lived in Georgia which made it difficult for them to visit with each other as much as they would like. Susanne and Brandy went way back. They were first introduced through cheerleading which was one of their mutual passions throughout middle school and high school. Susanne loved it so much that she would have continued it in college if the schedule did not conflict with her pre-veterinary course work. Susanne and Brandy were also involved in cheerleading gymnastics together, which was where they learned to tumble and do cool tricks. Susanne wondered if either of them could still do any of that. They went to cheerleading camps and cheerleading competitions together. They went to countless football and basketball games together. They even performed in a few half time shows with the band because of their sought after skills. During the spring, they ran track and field. They spent many days running "The Hill" together. Torture. Susanne even remembered how they danced the night away at prom. They had such a great time that they were the last to leave. It seemed like no matter what time of year it was, they were somehow connected. Even with being so busy, they managed to spend a lot of their free time hanging out and being kids. They shared a lot of wonderful memories together that they would remember forever. It was nice to know that they had always been there for each other. It was definitely a friendship that was built to last a lifetime.

Susanne tried to get up early enough so that she could straighten up the house a little before Brandy arrived. It was always so difficult to find a sufficient amount of time to do everyday chores because she was always getting interrupted by one thing or another.

Brandy arrived just in time for them to leave for Paxton's pediatrician's appointment. Somewhere between when Susanne went downstairs to answer the door and when Brandy got to meet Paxton, he had pulled out his NG tube. Susanne would typically be frustrated at the site of this, but she was actually glad he had done it this time. The only reason for this was that Paxton's skin was irritated and ulcerated underneath where the tube was laying and Susanne would not have known this otherwise. She had run out of the adhesive that she was using that went under the tube and protected his skin. The only option she had for securing the tube was what the medical supply company had provided her. Unfortunately, it was not sufficient because Paxton's poor skin suffered. The problem that Susanne was running into was that when he drooled or got a bath, the moisture would loosen the adhesive backing to the tape that was being used. This would in turn cause the tube to now be secure. If Paxton got a hold of his NG tube at the right spot, he could easily just pull it out because nothing was keeping it in place. She felt horrible that his skin had become so irritated. She was sure it was uncomfortable, but he couldn't tell her that it hurt. For now, she wasn't going to replace the tube until after Paxton's pediatrician could assess the situation. She was going to have to find an alternative for securing the tube because what she did the last time was not acceptable.

The pediatrician was so excited to see Paxton. She was specifically impressed with his weight gain over the last few weeks. He weighed in at 11 lbs 9 oz and that was post dirty diaper. She could not believe how different he looked compared to the last time that she had examined him. He appeared more comfortable and less stressed in the office setting. His physical exam looked good and she felt like he was stable. Since he was doing so well she decided to go ahead and give him some of his four month old vaccinations. Susanne liked the idea of splitting the vaccines up into two separate appointments to avoid overloading his system, especially since he had such a difficult time with the first round. Paxton was a champ for his vaccination. He didn't even cry. Paxton was braver for his vaccine than his mother had been in the past.

Before they left, Paxton's pediatrician calculated the amount of food that Paxton should be eating at this time. She was able to work it out so that Susanne could continue feeding him every three hours, but be able to skip the 3:00 am feeding. This was music to her ears. This would change Susanne's world so much. She would probably be a new woman after a few days of getting five consistent hours of sleep. What awesome news!!!

Brandy and Susanne talked non-stop for hours and hours. Somewhere between all of the catching up, Susanne cooked dinner and made cookies for the two of them. They were having such a great time together. It was so easy to pick up where they had left off the last time they saw each other. Finally, they ended up forcing themselves to go to bed around 1:00 am because they knew if they didn't they would regret it. After realizing how late it was, it was nice to know that Susanne wouldn't have to wake up in two hours to feed Paxton. Yippy!

The Good, The Bad, The Ugly

Susanne spent her morning showing Moppy the things that she had learned during Paxton's therapy sessions. She wanted Moppy to feel comfortable enough to be able to practice with Paxton throughout the day. She was a quick learner and Susanne thought that she would do an excellent job.

Susanne brought Ashley the kitty into work today. There was finally a space available for her in the adoption program. Susanne was going to examine her today, update her vaccinations, give her a dewormer, test for FeLV/FIV, and check a stool sample for parasites. She was getting the works. Hopefully, someone would think she was irrestible and adopt her.

Susanne's day was going well. It got even better when she got to see one of her favorite longtime clients. This client was one of Susanne's biggest fans. They met early on when Susanne was first starting out at the clinic. They had an instant connection because they were both huge fans of Boxers. They each had two boxers at the time along with guinea pigs, which just sealed the deal. They loved swapping stories about their pets and were shocked with the similarities between their dogs' personalities. This owner had a white version of Maverick and a white version of James. Susanne got along so well with her. It felt more like a friendship than a typical relationship with a client. She was so happy to see her and be able to update her on Paxton. She had been keeping up with everything through Susanne's close friend, Julie. Susanne couldn't wait for her to see pictures of the little guy. She was so encouraging to Susanne and really helped her to keep things in perspective. Unfortunately for her, she brought one of her dogs for a wellness exam and she ended up being really sick. Hopefully, with the right medications she will be feeling better in no time.

It must have been Susanne's lucky day because she got to see another one of her favorite patients. This was a Welsh Corgi that had so much personality. He absolutely loved Susanne. Anytime he would see her it was almost instantly that he would roll over on his back for a belly rub. The funny thing was that he only wanted to be loved on by Susanne, but did not want anything else from her. Whenever she had to do any procedures or even just look in his ears, he would try to nip and be sassy. It was very comical and entertaining, but he always had to wear a muzzle for that stuff for safety precautions.

One of Susanne's appointments during the day was a beautiful, new kitten. He was just as sweet as pie. The owner had recently purchased him through a breeder that ran a cattery a few states away. The kitten looked healthy overall, but Susanne needed to run a couple of tests to make sure he was free of parasites, feline leukemia, and FIV. Susanne called the owner before she left for the night to go over the test results. The kitten ended up having a parasite that needed to be treated. The owner was concerned because the kitten started having loose stool once they got home from the appointment. The owner was convinced that Susanne had done something to the cat that caused this to occur. Susanne understood how it seemed like a coincidence, but the fact that the kitten had parasites explained the true reason behind the diarrhea. Susanne also tried to tell the owner that the stress from the recent travel, new environment, and now going to the veterinary office could also exacerbate the problem. Unfortunately, the owner wasn't interested in Susanne's thoughts on the matter. The owner was instructed to bring the kitten in if she was concerned and she did. Susanne just happened to be there when she arrived. She took a look at the kitten to reassess how it was doing. Other than evidence of diarrhea, the kitten look the same. The emergency doctor also examined the kitten so that there would be a second set of eyes evaluating the kitten. His assessment was the same as Susanne's. The owner was not satisfied and still believed that it was trauma that was causing the loose stool. The owner left angry and Susanne left frustrated.

Susanne did not pack a dinner because she had high hopes of being home at a reasonable hour. She realized that this was not the case when she arrived home around midnight. She felt horrible because Moppy still had to drive home and then be up early to catch a flight to Orlando in the morning for a conference she would be at for a week. Susanne wished she could predict her schedule a little bit better, but that has never been the case. This factor alone made it unbelievably difficult to find adequate child care. No one wanted to work if they didn't really know what time their shift would end.

Can't We All Just Get Along

Susanne was finally glad to see that her cats were getting along again. She thought that it was the weirdest thing that just taking one of them out of the home environment to the veterinary office for a dental cleaning could erase their memory of the other one ever existing. Susanne knew that the smells from the hospital were the main source of contention, but they acted like they had never even met. Figaro paraded around the first few days, stalking Chloe like she was prey. He would growl, hiss, swat, and attack if she got too close. Instead of just leaving her alone and isolating himself, he would seek her out just to be mean. This was not okay with Susanne. Luckily, it only lasted a few days this time. Last time when Susanne had to take Figaro into the hospital with her, the cats did not get along for well over a week. It was very unnerving and concerning. Susanne vowed that the next time they needed a teeth cleaning, she would take them both in whether they liked it or not. They could both smell funny and be groggy together.

Paxton had an appointment with the occupational therapist again today. This time it was to work on his oral feedings. After evaluating Paxton with the non-nutritive sucking, she quickly realized that he was having trouble just trying to figure out how to swallow. This issue with the oral phase of swallowing was supportive of the results from the swallow study. She was convinced that if she could improve his head control and teach him how to handle his normal secretions, then he would pick up on oral feedings a lot quicker. Susanne was feeling really positive about this new plan. She was shown a couple of different techniques to use to encourage him to swallow. He had already shown so much improvement from the therapy session yesterday, that it seemed possible that he could pick up on other things as well. It was so nice to finally have some direction and guidance. This was all that Susanne had been looking for over the last couple of months.

At the end of the session, the occupational therapist mentioned that she would be out of town the next week and that she would be moving at the end of July. The dates that she was available left Paxton without therapy for over a week. Susanne tried to hold it together, but failed miserably. She got upset because it had taken her so long to finally find someone that could help them and now that was falling apart too. Susanne felt strongly that there should not be any lapse between his therapy sessions. She was advised to have him seen at least two to three times a week for therapy until otherwise directed. If this new service couldn't find any replacements, she would have to look elsewhere for supplemental therapy. She was overly concerned about wasting anymore time. Paxton had already been put on the back burner for way too long. Luckily, the therapist thought of someone that may be able to fill in for her for the next few sessions that she would be away. This new therapist may even be a potential candidate to replace her long term. Susanne remained hopeful and would anxiously await her call with the news.

The rest of the afternoon was spent making phone calls. This was by far Susanne's least favorite thing to do. Susanne first contacted her health insurace to try and resolve a problem that she had been trying to address since Paxton was born. She kept getting the run around and she was tired of it. After speaking with numerous people over the last few months, she was finally connected with someone from their critical case management team. She had spoken with someone from this team a couple of weeks ago and they were supposed to be able to get all of Susanne's questions answered. Unfortunately, when they spoke today, the answers she had come up with were not what Susanne wanted to hear. Susanne was on an individual plan before Paxton was born. She had met the deductible well before the day of delivery because she had so much prenatal work up and care. The rules stated that once she met the deductible, then 100% of the labor and delivery costs would be covered. Susanne thought that once Paxton was physically born, then the individual plan would switch over to a family plan with a higher deductible. This was not the case. The problem that Susanne was having was that she continued to receive bills from the day of delivery for things that occurred prior to Paxton being born such as the IV catheter and epidural to name a few. The critical case team member told Susanne that after investigating her question she found out that the policy stated that if she were to have had a "normal" child that went home from the hospital the same time that she did, then there would have been full coverage for labor and delivery. Since Paxton was not "normal" and he had to stay in the hospital, then the plan automatically switched to a family plan the day he was born. This meant that anything that occurred that entire day would be under that new family plan with the higher deductible. This made no sense to Susanne and she was very angry. She didn't understand how it took over five people to find the answer to this question because this had to happen all of the time. Right? Why did it seem that she was the only one that had this concern and didn't think it was fair?

After hanging up with the primary insurance company, Susanne had to contact the other supplemental insurance companies to address some of her other concerns. After probing around, one of the companies informed her that she had been filling out the wrong paperwork the entire time that she had submitted with her claims. They would not have let her know this unless she had asked. She had only thought to inquire about this because she was not getting any sort of response from them after she had faxed over fifty different bills to them over the course of a few weeks. Susanne was infuriated by this point because the form she was filling out was the form that THEY kept providing her. Unbeknownst to Susanne, the actual form that needed to be submitted with the paperwork was online somewhere and it needed to be filled out by Paxton's pediatrician. Since all of the bills that she had submitted were attached to the wrong form, she would have to start from scratch. This would not be an easy task.

The day seemed to fly by. Before Susanne knew it, Moppy arrived. Moppy was so kind and had gone to the grocery store for Susanne to get a few things. In order to make room for some of the frozen items, Susanne had to rearrange her entire freezer. Moppy sat back and watched in awe. Moppy wasn't sure that Susanne would make it all fit, but she did. What talent. After everything was finally put away, Susanne realized that she had not had any dinner. There was nothing like having dinner after 9:00 pm. Unfortunately, this was becoming a trend. Her choice for the evening was a bag of popcorn with no butter of course. This was surprisingly filling and satisfying. Then it was of to bed to get a goodnight's rest before work in the morning.

Count Your Blessings

Susanne made sure to be prepared and set to go for the occupational therapy appointment this morning. She was so excited that the day had finally come for Paxton to receive services. She was hoping to get a lot out of the appointment so that she could continue to work with Paxton and help him improve.

Susanne started off the day with a nice, hot shower. She got dressed and ready for the day. Once she was finished, she decided to wake Paxton up so that he would have a little bit of an adjustment period before he would be asked to work. Susanne put Paxton in a brand new outfit and he was looking mighty cute. As she was carrying him down the stairs two minutes before the therapist was supposed to arrive, he had an episode of projectile spit up. It got all over the two of them and the floor. Susanne had to frantically run around trying to change both of their outfits and clean up the floor before the therapist arrived. Luckily, she was running a little behind.

The therapy session went really well. Susanne learned a lot of new techniques to try with Paxton. He was showing interest in anything they tried to throw his way. He was such a good baby. He was always so cooperative and very social. It was hard not to fall in love with him each new day.

Paxton slept for most of the afternoon. He was all tuckered out from the therapy session in the morning. Susanne had come to realize that he did best when he determined how often and how long he would like to sleep. His cues were pretty obvious as well. He would let you know when he was ready to be put down for a nap. Susanne could not have asked for a better child. He was such a joy to have in her life. He constantly reminded Susanne how lucky she was and how to keep things in perspective. She could not wait for Scott to return home from his internship in August to be able to share in this wonderful journey with them. Family was so important to Susanne. She could only think of one other thing in her life that was more important...God.

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."
1 Thessalonians 5:16-18

Day By Day

"You should never expect the easy way, for if you do you are certainly destined for disappointment. Any person who knows the Bible knows that the Christian life is likened to an athletic contest or to warfare, and neither one is easy. Jesus warned His followers to count carefully the cost, and that certainly does not speak of an easy way. But there is no good thing that comes without cost. The Christian life is the most satisfying, but only when we actually go all out and all the way. It is the Christian who tries to compromise who finds life miserable, for he has all the problems, without the fellowship that comes through surrender. For every trial and test, Christ supplies an abundance of grace with which to bear it, and in our weakness we are made strong."

Prayer for the day:

Let me never look for the easy way when You, Lord Jesus, gave everything for me.

By: Billy Graham

Everybody's Working For the Weekend

Susanne decided to take one of her cats, Chloe, in to work today for a dental cleaning. Chloe was Susanne's little princess. She was the only other female in the house besides Susanne so they shared a special bond. She was rescued as a kitten by one of Susanne's sisters, Kerry. She was part of a litter of feral kittens that were living under their parents' porch. Susanne made a deal with Kerry that if she could capture a gray, female kitten for her, she would keep it. By golly, within the half hour Susanne was a new mother. It was an instant connection. Chloe was the tiniest thing Susanne had ever seen. She was hoping that her other new kitten, Figaro, would like her. Figaro was only a few weeks old at the time as well. He was actually a recent gift from her roommate and long time friend, Jill, for college graduation. Thus far, it had been the best present she had ever received. Luckily, the kittens got along and have been best friends ever since. Chloe was always such a shy girl. She hid behind Susanne's bed for at least the first month of living with her. Susanne remembers taking her to a friend's house so they could meet and Chloe ended up hiding the whole time. She hid herself so well that Susanne had to go home without her. Her friend, Lauren, found her squeezed up behind a dresser in the space between the drawer and back panel later that evening. To this day, they still do not know how she accomplished that. Even though she was shy, she really took a liking to Susanne. She had the sweetest disposition. She could, however, be demanding when it came to food. She became a very bold and confident cat if she thought she could get something from your plate. If she didn't come down for dinnertime, something was definitely wrong. Her obsession with food was what made today even more difficult. Before going under anesthesia, an animal must fast for at least eight to twelve hours to help decrease the chance of aspiration if the patient vomits in response to the drugs. She was fit to be tied. She was so upset that she ended up defecating in her carrier on the way to the clinic, which was not like her at all.

Susanne managed to get through her day without any complications. Chloe did as well. She was so cute when she was groggy. Luckily, she did not have any cavities and had minimal periodontal disease. Susanne was hoping this was a reflection of her excellent care.

Susanne got home at a reasonable hour. Moppy informed her that Paxton had a good day. Susanne purposefully separated Chloe from the rest of the gang because she was still a little sedated from the anesthesia.

Ha! Ha! That's Funny.

Susanne forced herself to stay awake until the 3:00 am feeding. She knew that if she did not do this, she would not wake up.

Paxton slept a lot more than he usually did, but that was probably because it took him so long to settle down last night. Susanne just let him dictate to her what he needed and she followed orders.

Susanne was in the middle of pumping when she heard the people that take care of her lawn show up. They were supposed to come on Friday mornings like they had been for the last few weeks. It wouldn't be such a big deal if she did not have a dog that she needed to clean up after. The company was asked to please call before they came so that Susanne could make sure that James was not outside and that she had time to pick up his stool from the yard. She had to stop what she was doing and rush outside to try to beat them before they got to the backyard. She was successful.

Susanne was running on empty. Even with seven hours of sleep on Tuesday night, it was not enough to make up for all of the countless days of limited sleep. Also, Susanne was bummed to find out that Colleen would not be coming over for "Pajama Party Thursdays", but she understood because she had a concert to go to. Susanne tried to remember the days when she could just leave the house to go live it up. Hopefully, Colleen would have a drink in honor of Susanne. Susanne was all mopey until Scott surprised her by coming home. He must have been running on empty too. They were able to fill each other's tanks immediately after just being able to embrace each other. It felt good to be in each other's arms again. Two weeks was definitely way too long to go without seeing one another.

Paxton's daddy got to play with him quite a bit before it was time for him to go down for the night. Scott was able to see all of the great progress that Paxton was showing. Scott could tell that Paxton was attempting to roll over on his own. After minutes of being super silly, Scott was able to get Paxton to laugh for the first time. He has one funny daddy. Of course, his laugh was in response to monkey noises just like what Susanne had done to get him to smile. The best part was that they were able to capture it on the video camera. It was awesome that they would be able to relive that moment forever.

When it came time to put Paxton to bed, Susanne played him a CD that she got earlier that day from her cousin, Kendall, and her family. Paxton loved listening to music before falling asleep and he was excited to have some new tunes.

After Paxton was in a deep slumber, Scott assembled a mobile that they had purchased for him. He loved to stare at objects especially if they were in motion. Hopefully, this would help to strengthen his motor skills.

Scott and Susanne were in heaven. They were able to cuddle on the couch and watch some TV before heading off to bed. It was amazing that just seeing each other for the short time that they had, recharged them to be able to get through another week. Love was such a powerful thing.

I Feel Good

Susanne got seven full hours of sleep last night and it felt great. She decided to forego pumping overnight so that she would be able to get a few more hours of sleep. She felt that it was well worth it despite the discomfort she felt in the morning. This was the most sleep she had had since before Paxton was born. This would be much needed for her to get through today.

Moppy watched Paxton at the house today since it went so well last week. This helped take a lot of pressure off of Susanne because she was able to just focus on herself getting ready and out of the door. This made it a lot easier.

When Susanne got to work, she was happy to see that her friend, Cory, was back from her trip to Paris. Susanne was excited to hear all of the details. Susanne was also glad to see her confidant, Julie. She was eager to give her a hug and offer her condolences for having to put her cat, Herb, to sleep. Susanne knew that feeling all to well. It was never easy losing a companion.

Susanne had a challenging case today that kept her at work longer than she had hoped. She ended up getting home just in time for Paxton's midnight feeding. Moppy was concerned because Paxton had been acting uncomfortable and having difficulty getting settled over the last few hours. She tried everything she could think of, but nothing seemed to soothe him. He was not much of a crier, but it was easy to tell when he wasn't feeling well. Usually he would talk to himself, rub his face a lot, and have difficulty falling asleep. This was exactly what Moppy had been observing all evening.

Susanne was so excited to see him. She had missed him so much. He always brightened up her day no matter how awful it was. She must have brightened up his day too because he smiled the second he saw her. He seemed to respond well to her. She was able to get him settled and off to bed in no time. Moppy and Susanne thought that it would be so much easier if he could just talk and let you know what was wrong with him. This wasn't too foreign to Susanne, however, because she was used to this. Her own patients could not talk and let her know what was wrong with them either. Woof! Woof! Meow!

Forgetful Jones

Susanne was TIRED!!!!!! This was the fifth night in a row that she had been up every three hours to take care of Paxton's feedings. She was used to having this schedule for usually about three days in a row and then she would have some sort of relief. Unfortunately, that was not the case this week. She couldn't wait for Moppy to come over this evening.

Susanne was having difficulty getting up this morning, that was until one of her cats vomited up a hairball on the bed. She could not believe that she would have to wash her comforter once again. Her comforter had been washed more in the last month than she cared to remember. Her bed was getting used to being naked.

Paxton had a cardiology appointment today. He weighed 11 lbs, which was impressive. The cardiologist thought he looked stable so there was no changes to his current treatment plan for the moment. The next step would be to start taking him off of some of his medications once he began to outgrow the BT shunt. Once his oxygen saturation levels reached the danger zone, then it would be time to move forward with his reconstructive heart surgery. This scared Susanne too much to think about. She was okay with living in her little bubble for now.

Susanne got home with enough time to put Paxton down for a nap before his first occupational therapy session or at least that was what she thought. She listened to her voice mail messages on the home phone. Come to find out, she had one from the OT stating she was outside of the house for the therapy session and it didn't look like anyone was home. She mentioned that she left a message on Susanne's cell phone too. Susanne quickly checked her cell phone and realized that the battery had died sometime that morning. She immediately called the therapist to discuss what had happened. Susanne had thought the appointment was for 2:00 pm, but that was actually the time that the therapist came by the week prior to do the paperwork. The appointment was actually for 11:30 am, which Susanne was clearly unavailable for. Susanne felt horrible. She made sure to let the therapist know that her time was valuable to her and this was very unlike her to miss an appointment. Susanne often prided herself on how organized she was especially when it came to Paxton's care. Even though she knew that it was an innocent mistake, she was very hard on herself so much so that she got upset. The reason she was so mad at herself was that she had tried so hard over the last two months to get anyone to help her with therapy for Paxton. It had been a long, frustrating road to even find someone that was willing to take him on as a patient. Finally, when the first appointment day arrived, she messed up the time it was scheduled. Unfortunately, this prolonged the time for Paxton to receive services until the following week.

Paxton had a little bit of a rough day today. He had a lot of episodes of gagging and dry heaving especially prior to each feeding. Susanne could only gather that it was from a lot of secretions in his mouth that he was having trouble swallowing. Therefore, he would choke on his own saliva. It was difficult to watch because most of the time it would seem like he would panic. This resulted in him holding his breath and having the appearance of drowning in his own spit. Other than suctioning him, Susanne did not know what to do.

Moppy finally came over later in the evening. Now Susanne could rest.

In Loving Memory

Overall, today was uneventful. Susanne made sure to incorporate a lot of therapy sessions for Paxton throughout the day. She even got bold and worked on oral feedings. Paxton was continuing to improve with his motor skills even though he was still significantly delayed. The oral feedings were less successful, but it was great news that he was at least receptive to Susanne putting the bottle in his mouth.

Susanne could not get enough of him. It really warmed her heart that he would smile everytime she was in his presence. His little face would light up when he realized it was her. He was the most precious thing in the whole world.

Later in the day, Susanne received a package. She was taken aback when she opened it. Susanne's sister, Kerry, and her brother-in-law, Nick, got her and Scott a blanket with pictures of Maverick on it for their birthdays. It was a way for them to always have him close. What a lovely way to remember the best dog ever. It was still a very delicate subject for all. Susanne immediately started to cry when she saw his handsome face. Her tears were not only because she missed him so much, but also because the gift was so thoughtful. She and Scott would cherish it always.

Susanne was excited it was Monday. She could not wait to watch the next episode of "The Bachelorette". She knew that it was trash TV, but she didn't care. It was actually very therapeutic for her.

Diaz Out

Susanne made a big farewell breakfast for Aixa including pancakes and a variety of fresh fruit. They could not believe how quickly time had flown by. Susanne and Paxton were very sad that Aixa was leaving today. Paxton decided to get dressed up for Aixa's departure and wore a special onesie with a tie. Granted it was a little small for him, which was surprising because this had never happened. I guess Paxton had officially graduated out of his newborn clothes. Way to go big guy.

Aixa got to the airport with plenty of time to spare. Susanne and Paxton really wished that she lived closer than Florida. They would have to make sure to visit her especially when Paxton was old enough to enjoy Disney World.

Susanne made sure to spend some time with Ashley the cat today so that she did not feel neglected. She was definitely craving attention and could not get enough. It was always so difficult for Susanne to leave her by her lonesome in the bedroom downstairs. She knew it was for the best though because she was overdue on her vaccines, her stool had not yet been checked for parasites, and her FeLV/FIV status was unknown. It was too risky to let her commingle with Susanne's other cats and dog. Once Ashley would enter the adoption program, all of that would be updated. Susanne hoped that she would be accepted into the program soon. She was really a sweet cat that deserved a good home.

Susanne spent the evening cooking a few meals to last her the next few days. While the food was in the oven, she decided to pump. Paxton was down for a nap so she thought it would be perfect timing. For some reason, whenever Susanne sat down to pump she would always get interrupted. Usually it was the phone or the door bell, but this time Paxton started crying, James needed to go out, and the oven started beeping. It would not be so bad if it was easier to stop and start the process. What's a girl to do?

The Problem With Pesto

Once Paxton was in bed, Aixa and Susanne spent the rest of the evening catching up. Neither of them even thought to take a breath the entire time. They had to force themselves to go to bed when the clock struck 2:00 am, that was until Susanne realized that she needed to try to stay awake a little longer for Paxton's next NG feeding at 3:00 am. Bummer.

The morning came too early, but having Aixa there made it that much easier to get up. The plan was to go to the pool today, but it was overcast. Instead, they hung out at the house and got alot of playtime in with Paxton. Aixa was a big help. She made Susanne breakfast, which included scrambled eggs, bacon, and bagels. She also watched Paxton while Susanne got in the shower.

The day flew by even though they didn't do much of anything. They were able to muster up enough energy to go to the grocery store. Susanne wanted to try out a new recipe that she had found. She was hoping that it would be tasty.

Aixa started on dinner while Susanne got Paxton situated for the evening. Everything was going well until it was time to make the pesto. Aixa quickly found out that the blender was not the best choice to mix the ingredients for the pesto. Everything was sticking together and not mixing as well as they would have liked. Susanne decided to see if the Magic Bullet was the better choice. As they were trying to switch the pesto over to the new container, the spoon got stuck on the blade of the blender. They both struggled to try to get the spoon free, but they were finally successful. The next challenge came when they tried to unscrew the bottom of the blender to get the remainder of the pesto out of there. It took them at least five minutes with alternating between each other to finally be successful. The Magic Bullet completed the job and they were ready to rock and roll. The much anticipated dinner was well worth the wait. It was delicioso!

Even though it was late, they decided to watch a movie. They stayed awake just long enough to eat some yummy cookies for dessert and then it was all over from there.

Breaking News...Aixa's Coming!

It was nice to know that James did not have any issues after his little Marley moment the other day. He acted no differently than before the incident, which was such a relief. When Susanne was cleaning up after him in the yard today, she noticed it had a lot of character. There was a variety of tin foil wrappers from the chocolate he ate. This just proved that he was a successful scavenger.

Susanne tried to find time to clean up the house before one of her best friends from college flew into town. Paxton was finally going to meet Aixa. Susanne met Aixa her freshman year of college. She was one of Susanne's suitemates that first year. Ever since the first day that they met, they were the best of friends. They enjoyed each others company a lot. They loved to sing, dance, and pretty much be goofy anytime, anywhere...it didn't matter. They always managed to get into some sort of trouble when they were together. They had a lot of similar interests and very supportive families, but what really tied them together was their core set of beliefs. Their faith was what got them through anything thrown their way. One of the most rewarding things that they did together was to go on a mission trip together every year throughout college. Most of the time it was through Appalachia Service Project. They had done everything from building a retaining wall, to building a porch, to something more impressive like building a house from scratch. They were masters of the hammer and the nail. Once during college, they even went to Matamoros, Mexico to do mission work at an orphanage. They spent a lot of their time building closets and bunk beds for the orphans. Their favorite part of that whole trip was the connection that they made with all of the children. They made sure to dedicate time to getting to know them and reach out to them. They learned so much from those children. It was on that trip that they learned what the true definition of wealthy meant. These children were rich in love and kindness. They were some of the happiest human beings they had ever met. This was amazing coming from kids who didn't have toys, underwear, or even parents. It was amazing what Susanne and Aixa had taken for granted.
They both had a passion for traveling. It was only logical for them to study abroad together. The destination that they chose was Madrid, Spain. They were there for about a month and managed to travel throughout the country on the weekends. One of the most memorable moments of the trip was definitely the running of the bulls in Pamplona. Ole'! Through thick and thin they had been there for each other, whether it was through break-ups with boyfriends, the loss of a family member, graduation or some other momentous occassion. Susanne felt so blessed that Aixa had been with her through it all. She had always been present during the most important times in Susanne's life like when she got into veterinary school, when she got married, throughout her pregnancy, and now with her first child. Susanne could not wait for Paxton to meet one of the most important, influential people in his mom's life.

Aixa fell in love the moment she set eyes on Paxton. She was so eager to get to know him that she sat in the back seat during the ride back to the house. He couldn't quite figure out what to make of her. He stared at her the entire ride home, but didn't change his facial expression no matter what she said or did...and she can be pretty silly.

Shortly after getting home, they headed back out to meet up with some of Susanne's other friends for dinner. Susanne decided that she wanted to go to a new Mexican restaurant up the road called Margarita's. She had recently had take out from there and liked the food so much that she thought it would be the perfect place to have a late birthday celebration with her friends. Paxton was excited to see all of his favorite people including Aunt Leenie, Uncle Loonie, and Aunt Julie. Susanne was excited for Aixa to finally meet Colleen and Chris. Aixa had heard so much about them, but had not yet met them in person. She had, however, met Julie before. It was nice for them to get reacquainted.

The best news of the night was that Julie told everyone the she was pregnant. Of course, Susanne already knew this information, but she was excited for her to share the wonderful news with everyone else. Other than Julie's husband, Susanne had been the first to know. It was so difficult for them to keep secrets from each other because they told each other everything. Susanne had done a good job of keeping quiet even though it took everything she had not to tell. It was hard not to mention it everytime they saw each other. To keep that kind of excitement to yourself was unbearable. Now that the news was out, Susanne felt free. She was so excited to get to share this experience with her close friend. Being pregnant was such a memorable time for Susanne that she wouldn't trade it for the world. Now she would get to relive the experience with Julie and hopefully give sound advice along the way. To top it off, at the end of it all Paxton was either going to have a best friend for life or...you got it, a girl friend.

They decided to head home in time to start Paxton's next NG feeding. It had been such a wonderful feeling for Susanne to have some of her closest friends all together. Overall, Susanne thought that the food was great, the company was even better, but having Paxton right next to her made it just perfect.

So Far, So Good...

So far, so good. Moppy was able to take Susanne to pick up her car before she needed to be at work. This way Moppy had a source of transportation and more importantly she had access to a car seat for Paxton.

Luckily, Susanne's day was pretty straightforward and she got home at a decent hour. When she arrived, she noticed that Colleen was already there for "Pajama Party Thursdays". It was so nice to see her lovely face. Moppy and Susanne did a switcheroo of the cars before she headed home. This way Susanne would now have access to the car seat if needed.

After two days of having Paxton at home while Susanne was at work, Susanne realized how much easier it was on everybody to do it this way. Most importantly, Susanne did not have to uproot Paxton and all of his multiple accessories that are needed for him to get through the day. She did not have to worry about bringing enough supply of milk, medications, diapers, wipes, and receiving blankets. She could leave all of the components needed for his NG feedings set up at home instead of having to break it all down for transport. There was more space for Moppy to work with Paxton on his motor skills. She was able to implement more productive therapy sessions. She could incorporate time to try oral feedings. Paxton was able to have a change of scenery. He was always calmer in his home environment. He tended to stress out a little whenever he had to go anywhere. It was also a given that he would spit up, dirty up a diaper, or a combination of both when placed in his car seat. His feeding schedule tended to be disrupted as well when he had to leave the house. James was happy too. This meant that he would not have to be in his crate all day until they arrived home. He had the freedom to roam the house and take a nap anywhere he pleased. Susanne found that it was also less stress for her. She could just worry about herself in the morning and when she was ready she could get in the car and go. This also applied at night when she was finished. Usually when she finished work, she would have to pump before getting on the road. It would also take her and Moppy sometimes up to an hour to get everything packed and ready to go. In addition to this, Paxton was usually due for his next NG feeding. Susanne would have to set this up before heading home. Once at home, Susanne was by herself. This left her to worry about getting Paxton inside and in the bed. She would have to unpack the entire car by herself and put everything in its place. Then she would have to take care of all of the animals and make sure they were squared away. Lastly, she would have to think of something she could have for dinner, which most of the time it was whatever was the quickest option. All of this added a lot of time to her evening when all she would really want to do at that point was get in the bed. Somehow this whole situation, that at first seemed to be an inconvenience, was acutally a blessing in disguise. God sure knows what he's doing.

Change In Plans

Susanne got a phone call this morning from the mother of the child that shares the nursery with Paxton during the week. She informed Susanne that her son had recently had a stomach virus, which had now spread to her and their nanny. Her son had been in the nursery over the last week and she just wanted to forewarn Susanne of the potential for Paxton to get sick. Susanne was very thankful that she had called, she just wished that it had been earlier than the day of needing the nursery. Susanne made the executive decision to leave Paxton at home. The only thing that made her worry was that between her and Moppy, they only had one car. Susanne was going to have to take the car to work. This would leave Moppy with no source of transportation and no way to get Paxton to a facility to receive medical intervention if that was needed. The plan was for Moppy to call 911 if anything should happen.

Susanne got home at a relatively decent hour. She was pleased that the day had gone so well for all. They were planning on doing the same thing tomorrow except this time, Moppy would have a car. Susanne's car was finally ready...again. Hopefully, the third time was the charm. For now, the plan was for Moppy and Susanne to pick up the car tomorrow before Susanne had to head into work. Let's hope that this plan would work out.

At The Car Wash...Yeah!

Susanne started off her day with a nice, relaxing shower. She was going to try to clean the house, with the emphasis on "try". She decided to pump before getting started. Unfortunately, one of the bags that collects the milk broke and spilled all over her bed. This was not what she was hoping to have to clean up today.

Susanne was proving to be very productive, which was not always the case since she had a baby. She did a lot of laundry, vacuumed, swept, and mopped. Lastly, she cleaned the litter box. Usually, after Susanne cleaned the litter box, it was almost a given that Figaro would immediately go in and mark his territory. He's always had to beat Chloe to the punch. It was not until after Figaro was finished this time that Susanne realized that she should have dried the floor before putting the litter box back in its place. Due to the fact that Susanne used clumping litter, Figaro's wet feet attracted the litter and tracked it all over the freshly mopped laundry room floor.

The occupational therapist from Early Intervention stopped by around 2:00pm. Susanne had to fill out a bunch of paperwork to complete the process for Paxton to receive service. During their meeting, Paxton woke up from his nap. Susanne decided to hold him through the rest of the meeting. Paxton decided to be a show off by showing the OT that he could smile a lot and that he had good head control. Susanne was so proud.

Susanne had to pick up Moppy from the Metro today since her car was still in the shop. Susanne left the house around 4:00pm, which was right after the OT left. She decided not to take anything to be able to feed Paxton in the car because she thought she would definitely be back before 6:30 pm. She was sadly mistaken.

Scott's car needed an oil change like nobody's business, which Scott had been reminding Susanne to take care of for months. Susanne finally had time to get this done before Moppy would be ready to pick up. Whenever Susanne gets her oil changed, she gets a complimentary car wash. She decided to go ahead and get this done as well because it was much needed. Susanne was excited because this would be Paxton's first time going through the car wash and he LOVED it!!! He watched everything very intently. He followed the water as it rinsed the car, he looked at the soap being squirted on the car, and his ultimate favorite was when he watched the big sponges wash the car. He was entertained to say the least.

Susanne knew she would have plenty of time to pick up Paxton's medications from the pharmacy before they closed at 6:00 pm. She decided to do this before going to the Metro because Moppy was running a little behind schedule. Shockingly, it took Susanne over an hour to get to where she needed to be. She knew that traffic would be bad, but not this bad. She made it by the skin of her teeth. She had less than two minutes to spare when she stumbled in the door. Luckily, she caught herself and Paxton was okay. Thankfully, she was able to pick up the medication. That would have really ruined her day.

Susanne was now less than 5 miles from the Metro. Once again, due to traffic it took her another 20 minutes to get there. She followed the sign that said Metro and had an arrow on it. Unfortunately, this was all for the park and ride. She must have past three separate entrances on this road alone and not one of them was what she needed. She had to turn around and figure out where the appropriate entrance was for the kiss and ride. Finally, she saw Moppy. Thank the Lord.

The traffic was still horrible when they left and they were getting nowhere quickly. It took about an hour and a half for them to get back to Susanne's house. By this time, Paxton was way off of his schedule. Susanne felt horrible because her prediction for how long the whole process would take was way off. If this wasn't frustrating enough, when they walked inside, they found the house in disarray. Susanne had left James out thinking that she would only be gone a short while. She thought that she had put everything away that he could potentially get into as well as closed off all of the rooms so he would have to stay in the main area of the house. When she saw the state that the house was in, she realized that she forgot to close one important door...the pantry. They found tupperware, cupcake liners, different canned food items, remnants of the plastic bag that contained a loaf of bread, and candy all strewn about. Worst of all, he had opened up a bag of flour all over the floor. He made quite the mess. After talking with Scott, Susanne realized that the candy that was left over was only a small portion of what had been in the bag. James apparantly has good taste because he ate all of the chocolate pieces and left no trace that they ever existed. This can be toxic to dogs. Thankfully, most of it was white chocolate which is less toxic than the other types of chocolate. Susanne would have induced vomiting to see if she could clear his system, but since she was gone so long it was hard to know when he ate the chocolate. She decided she was going to just monitor him closely and bring him into to work if he showed any ill effects from his escapade.

After getting Paxton situated, Susanne spent some time with the rescue cat, Ashley. Then it was dinner and off to bed. She was going to rest well this evening.

We've Got Work To Do!

Susanne woke up and decided to make a big breakfast to start off the day. Susanne and Scott had some quality time alone while they ate their pancakes and bacon. Today, Scott's goal was to really focus on working on his dissertation. Susanne tried to stay out of his hair so he could focus. Susanne and Scott made sure to set aside some time for Paxton. They had some very productive playtime mixed in with a little therapy. They were amazed at how well he was reaching for objects on his play gym. He was even successful in grabbing onto one of his toys every so often. They even have the video footage to prove it. Way to go Paxton!!

In the afternoon, the whole family ran some errands. It was so much easier to do this when there was two of them. Right before they headed home, Susanne went to her work to pick up a cat that Scott had rescued from one of the families that he does therapy with. He had rescued this cat, Ashley, a couple of weeks ago. One of Susanne's co-workers was so kind to watch her while they were away in Ohio over the last week. Ashley was accepted into the adoption program through Susanne's work, but she had to wait until there was a spot available. Until that happened, Susanne was going to keep Ashley at the house. She was the sweetest little cat and she had quite the motor on her. This was the second cat that Scott had rescued from one of his clients. The first kitten found a loving home within weeks after being rescued. Hopefully, this would be the case for Ashley. Scott had also rescued a guinea pig from one of his clients at the end of last year. He was immediately accepted as part of the Padilla family and has been a joy to own ever since. Scott felt very fortunate to be married to a vet!

Paxton Goes To The Pool!

Scott ended up doing all of the overnight feedings for Paxton to allow Susanne to catch up on some much needed sleep. As if only one night was enough.

Scott and Susanne were so excited that the pool had finally opened up for the summer. They were so excited in fact that they decided to take Paxton to the pool for the first time. Scott had picked out some super cute swimming trunks along with some sun protective shirts earlier in the day. He had also intended on purchasing some sunglasses for the little guy, but for some reason they did not make it to the checkout line. While waiting for Scott to return, Susanne lathered Paxton up with sunblock for babies. It was only after she was finished applying it, that she read that she should contact the doctor before using that product on babies less than six months. She felt horrible. Luckily, he did not have any problems. Paxton looked absolutely adorable in his swim gear. Susanne would have mentioned that Paxton also had to wear waterproof underpants, but she didn't want to embarass him. After being at the pool for less than thrity minutes, Scott had surprised Susanne by inviting Aunt Leenie and Uncle Loonie to join in on the festivities. Colleen and Chris brought everyone lunch and refreshing drinks. Paxton had a nice chair that he relaxed in while laying under the umbrella shade. He took a long nap so that he would be ready to play in the pool when the time came.

Finally, they all got into the pool and hung out in the shallow end so that there was no question whether they could touch the bottom or not. At first, Paxton hated the water and he cried in response to how cold it was. Shortly thereafter, he became accustomed to the temperature and thoroughly enjoyed himself. Susanne had brought a variety of squirt toys for Paxton to play with, but they quickly became abused by everyone else. As you might have guessed it, the toys went from innocent squirting sea creatures to weapons of mass destruction. There was full on war in the shallow end of the pool between Scott, Aunt Leenie, and Susanne. Luckily, Uncle Loonie protected Paxton from getting in the line of fire multiple times.

After a long dip in the pool, they all decided to dry off by soaking up some rays. It was shortly thereafter, that they heard the sweet sound of the ice cream truck. Colleen and Susanne ran up to the truck like little children. They were so excited about the sweet treats they were about to get. It was so depressing for Susanne not to be able to get REAL ice cream, but she found a fresh fruit bar that was just as tasty. At least that was what she told herself.

Once the evening approached, they headed back to the house in time for Paxton's next NG feeding. While Susanne pumped and got ready for the evening activities, Aunt Leenie and Uncle Loonie gave Paxton a bath. He was so exhausted from the day that after his bath he was ready for bed.

Scott had a little birthday celebration planned for Susanne since they were not at home this past Thursday. He had invited Colleen, Chris, and Moppy over for dinner. Scott prepared steak and shrimp on the grill along with a salad. Scott also served caffeine free Mountain Dew-tinis since they were such a hit the first go round on Mother's Day. They were delicious. Instead of birthday cake, Moppy made yummy brownies. Susanne made sure to make a wish before blowing out her candles. She made sure to make it a good one. Knowing how much Susanne loved ice cream, Scott and Moppy were successful in finding a fruit sorbet that was safe for her to eat. This should not be confused for sherbet, which was also provided. (Speaking of sherbet, there had been a long term discussion on the correct pronunciation of that word. Scott grew up saying "shur-bet" and Susanne grew up saying "shur-bert". Luckily, both pronunciations were found in the dictionary, but the correct way of saying it was just like it's spelled...sherbet.) Once their bellies were full, Susanne got to open her gifts. Colleen and Chris got her a mini-fridge for her bedroom. This was to help store the milk that she pumped overnight as well as to store Paxton's feedings so that she could eliminate having to go up and down the stairs multiple times. This was ingenious. What was even more ingenious than that was how they thought to look for one on a college campus as the students were heading home for the summer. Scott got Susanne a gift certificate to "Charming Charlie's", which is a boutique with endless amounts of women's accessories all separated by color. He also got her a matching pajama set for her and Paxton that said "Dreaming of Baby" and "Dreaming of Mommy" on the front. Paxton got his mommy decals for her car of stick figures that emulate their personal style. It was very cute. Moppy provided the edibles. What a fiesta!

Paxton woke up just in time to watch his mommy open her gifts. Before he went back to bed, Scott and Susanne were able to show everyone how well Paxton was smiling. He was quite the little performer. That was the most rewarding part of Susanne's day, to see her baby smiling. Paxton was a true gift from God and she felt so blessed.

Car Trouble AGAIN!!!

Susanne was headed out the door to go to work when she ran into a slight problem...her car would not start. She attempted to start it multiple times before giving up. Her Eclipse had been in the shop twice already within the last month. How could it still not work properly? Susanne decided to just take Scott's car to work and they would have to figure the rest out later.

Susanne had a great day at work. It was pretty straightforward and she got to see one of her favorite clients. It was so nice to catch up with her, as well as share motherhood stories. By the end of the day, Susanne felt so tired. She was feeling the onset of exhaustion kick in from her busy week.

When she got home, Scott and Moppy ordered dinner from a new Mexican restaurant up the street called Margaritas. Scott and Susanne were pleasantly surprised with how great the food was, which says a lot since they are Mexican food connoisseurs. Susanne was finally getting a little more used to not having her good friends sour cream and cheese around. It was something she thought would have been near impossible a few months ago, especially since those had been two staples in the Padilla household since they had been together. During dinner, they watched a scary movie. This genre of movies was one of Scott's and Susanne's favorites. Susanne fell asleep, yet again, to the entertainment of the evening. What a party pooper!

Double Down

Scott made Susanne a deal last night before bedtime. He said that if Susanne did all of the overnight shifts for Paxton that he would drive the entire way home. Susanne took hime up on it since she was not fond of driving in the first place.

Scott and Susanne woke up to the wonderful smell of breakfast. Kelly had been slaving away in the kitchen all morning making omelets, bacon, and biscuits. Susanne's omelet had to be special ordered with no cheese. Even though it was missing the main component of an omelet, it was still very tasty. Kelly made sure to stuff it full of other delicious things.

It was hard saying goodbye to the Dreyer family. Even though they had been in Ohio for a week, their time together had been limited. No matter what, anytime with the Dreyer family was better than no time at all.

Scott and Susanne got on the road around lunch time. They had to make a few stops first before getting on the highway. It was really important to find a way to keep all of the milk cold that Susanne pumped over the last week. She did not want any of her hard work to go to waste. Whoever invented ice was a smart person. Once they were on the road, it was smooth sailing. Paxton did a great job of letting them know when he had a wet diaper, but other than that he slept for the most part. Scott and Susanne had to stop for food along the way because they had gone through all of the food that they had brought up to OH with them. Susanne was so thankful for modern technology. She was able to use her laptop in the car to look at the ingredients lists from different fast food places so she would know what was safe to eat. Most fast food restaurants had it nicely laid out which made it easy. Susanne was very limited with what see could eat, but Scott had unlimited options. Even though Scott had endless choices for food selection, he knew exactly what he wanted. He wanted to have the "Double Down" sandwich from KFC, which Susanne would describe as a heart attack waiting to happen. It was composed of slices of bacon and cheese smothered in some sort of sauce, which was then sandwiched between two fried chicken breasts. Scott loved it. He was in a state of artery clogging bliss. Susanne, on the otherhand, had a salad from Wendy's. Somehow this did not seem as exciting.

Paxton smiled a lot during the trip home. Anytime Susanne had to change his diaper or when they would get him out of his carseat for some fresh air, his face would just light up. He had done surprisingly well for such a long trip. It was only the last thrity minutes that Susanne had to jump in the backseat to sit with Paxton because he was fussy. Scott and Susanne decided that they would be too if they had to be confined for that length of time.

Finally, they arrived home. It felt so good to walk through the front door and even better knowing that in a short time they would be sound asleep in their Tempurpedic bed. They still felt that this was the best purchase they had ever made together.

They tried to get into bed a soon as possible because Susanne had a long day tomorrow at work.

Happy Birthday Mommy!

Susanne's birthday started early because Paxton woke up around 3:00 am very unhappy. She had a hard time getting him comfortable so she had to wake up Scott to see if he could do any better. Apparently, sometimes Paxton just needed Daddy's touch. Both nights Paxton had to sleep in the hotel, he did not seem to adjust well. It was hard to figure out why. He did end up developing a rash on one of his ears after the first night he stayed there, but he only slept on things that were brought from home.

The morning came too soon for everyone. They all had to be back at the hospital for an eight o'clock appointment with the two geneticists that had been the head of Paxton's case so they could discuss a plan for after returning home. Susanne and Scott decided at the last minute to come back to the hotel after the appointment to pack up the car. If they had tried to do it beforehand, there was no way they would have made it on time, especially because it would be rush hour when they left.

Once they arrived at the hospital, Paxton wanted to make things interesting by having two dirty diapers right before his appointment. Susanne was really concerned because the second one had small ammounts of fresh blood present. She had not seen this since he was in the NICU long ago. When the doctors finally came in, Susanne mentioned this to them right away. They did not seem too concerned because he had recently had a barium swallow done and his NG tube was replaced yesterday. She was advised that if this persisted, then she should contact her pediatrician.

The geneticists got right down to business. They started off by stated that they strongly felt that Paxton had one underlying condition that had caused the other conditions. They could only think of two differentials which included Moebius syndrome or something specific to Paxton that had not been discovered yet. They tended to call the latter, Paxton syndrome. The good news was that Paxton had previously had extensive genetics testing done, which all had come up normal. Unfortunately, for a diagnosis such as Moebius syndrome, there was no specific test for that disease process. It was more of a wait and see approach. This new consideration as to what Paxton may have came as a surprise to Scott and Susanne. The geneticists were noticing evidence of neuromuscular issues that had not been noted before. Their suspicion for Moebius syndrome stemmed from the physical exam findings that they noted on the first day. They felt like he had a lack of facial expression, difficulty with lateral eye movement, motor delays due to upper body weakness, feeding and swallowing problems, drooling, high arched hard palate, and tapered fingers. Moebius syndrome was an extremely rare congenital neurological disorder caused by the underdevelopment of the facial nerves. They could definitely make a case for Paxton, but it wasn't something they could prove. Their recommendations at this point were to hit him hard with therapy. They wanted Paxton to not only receive treatment from an speech therapist, but also an occupational therapist and physical therapist as well. They felt that Paxton should be treated multiple times per week to give him the best chance of improving. They felt that Paxton would need a G tube placed instead of continuing on with the NG tube because of his lack of progress thus far with the oral feedings. This was a surgical procedure that would require anesthesia. Scott and Susanne would have to consult with Paxton's cardiologist to discuss setting this up before they proceeded forward. Next on the list of things that they suggested was a brain MRI. This was the last diagnostic test that was recommended because they just wanted to be completely thorough and they wanted to make sure that everything looked normal. Somewhere around six to seven months of age, Paxton would need his next heart surgery. The exact surgical procedure that was going to be done was still undetermined at this time. Finally, around one year of age Paxton would need his cleft palate repaired. This would hopefully help with his speech development and with oral feedings. Optimistically, each step would give Paxton a better chance of living a more normal, longer, healthier life.

Before heading out, Scott and Susanne had to set up a NG feeding for Paxton. Susanne realized that everything went a lot faster and smoother when there was an extra pair of hands. They got back to the hotel and started packing up their belongings. It took a lot longer than they had expected. By the time they were finished, it was an hour and a half past the check out time. The gentleman that was working at the front desk was very understanding and nice about the whole situation. It was still shocking how much stuff they had once it was all in the car. How do people do it when they have more than one child?

For Susanne's birthday, they decided to go to the Cinncinati Zoo. Even though Scott and Susanne had been to more zoos than they could count, this was Paxton's first time. Everyone was really excited. As Paxton's mommy and daddy suspected, his favorite animal was the monkey. Susanne and Paxton had already perfected the sound that they make and the monkeys were very impressed. Of course, every time Susanne made that noise, Paxton responded with a smile.

Somehow they were able to walk around the entire zoo within three hours. This was definitely impressive. Next stop...the Dreyer house. Scott and Susanne decided to stay with Kelly and her family for their last night in Ohio. They wanted to take advantage of the opportunity to catch up with everyone since at the beginning of the week they had to put all of their time and energy towards Paxton.

Once they got to the Dreyer's house, they had to leave shortly thereafter to meet Kelly's extended family for dinner at a local restaurant. They ate at the Montgomery Inn which was well known for their ribs. Susanne had called the night before to see what she could eat from their menu and luckily she could have the ribs. Dinner was very delicious and the company was even better. Everyone really made Susanne's birthday one to remember. She was showered with lots of gifts and cards. Since there was no "naked dessert" on the menu, Susanne had a bowl of strawberries with a candle presented to her while everyone sang "Happy Birthday". Best of all, she had her sweet baby boy in her arms. She couldn't ask for anything more.

When they got back to the house, Kelly's son, Will, wanted to desperately play Star Wars on the Wii with Scott. While they were preoccupied, Susanne put Paxton to bed. Once all of the kids were sleeping, the adults finished the night by watching "So You Think You Can Dance". Susanne fell asleep thirty minutes into the show, which was not surprising to anyone.

Another Busy Day

Scott and Susanne made it just by the skin of their teeth to get a wonderful dinner at El Pueblo's last night. Scott ended up getting a chimichanga and washed it down with a nice, refreshing margarita. As painful as it was, Susanne had to special order dairy and soy free fajitas, also known as "naked" fajitas. Even with no cheese and no sour cream, they were still delicious.

This morning, Scott and Susanne made it in time for the doctor's rounds. They all flooded into every corner of the room and each specialist spent time reviewing their assessments and any test results that they had. Susanne felt like she was a part of an episode of Grey's Anatomy. She was just waiting to see a familiar face. The best part of rounds was that they informed Scott and Susanne that Paxton was going to be discharged today. How exciting!

Paxton had another NG tube placed today. The nurses decided to try a different type of tape for his face. Scott and Susanne felt that it caused more irritation because, by the end of the day, there was a rash developing around the edges of the tape. They elected not to say anything and just fix it when they got back to the hotel.

Paxton had an occupational therapist evaluate him before he was discharged. She was actually an OT from the Regional Center for Newborn Intensive Care (RCNIC) and not from the floor that Paxton was staying on. The Padilla's friend, Kelly, made special arrangements for this specific OT to be able to be the one to evaluate Paxton. Kelly thought that Paxton would be better served by having someone who worked with all newborns evaluate him instead of an OT who worked with a variety of ages on the pediatric floor. Scott and Susanne loved this OT. She was very knowledgeable and informative. She made them realize that Paxton wouldn't focus on his toys in front of him if he could still see his parent's faces because he was so interested at staring at his mommy and daddy. It was amazing to see the difference when Scott moved out of his line of vision. The OT made a point to encourage Scott and Susanne to not to feel pressured to be in his face and talking to him at every play session. It was important for him to discover his environment some on his own as well. She gave them different approaches to try and other options for him to make his learning time as non stressful as possible. It was important for Scott and Susanne to also support his major joints and muscle groups during these sessions. This way he would feel supported and more comfortable.

Immediately following his OT session, the speech therapist stopped by to work with him one last time. Unfortunately, he was all tuckered out from the previous appointment that he did not have the energy to try to accept an oral feeding. They all had to say goodbye to the speech therapist since this was the last time Paxton would meet with her. She had been so incredible and supportive since day one. Paxton really seemed to like her a lot, as did his parents. If only Susanne could find this caliber of therapist where they lived, it would make everyone's life so much easier. The most important information they gathered from the speech therapist was that it was safe to keep trying to offer oral feedings. The studies proved that he was not aspirating his oral secretions or the milk that had been offered. She encouraged them to try feeding him in different positions so that he did not become position dependent when being fed. It was super important to give him positive experiences and have a very gentle approach. This was going to be easy because this was exactly what Susanne had been practicing all along.

The pulmonary team stopped by with the results from the sleep study. The good news was that there was no evidence of obstructive apnea throughout the entire night. This was a huge relief because of the concern for obstruction due to the retraction of his tongue secondary to the Pierre Robin Sequence. They did, however, notice very mild central apnea where the brain forgets to send the appropriate signals to the muscles that control breathing. In an ideal world, they would put Paxton on a trial of caffeine to see if that would improve the situation, but with his underlying heart condition, it would be too risky. They did mention that Paxton could have an apnea monitor if Scott and Susanne were interested. The cardiologist felt that it wasn't necessary and might be more of a source of frustration since the alarm tended to go off when it did not need to.

Scott and Susanne decided to take a nap while they were waiting for Paxton to be discharged. By the time everything was ready to go, Paxton was due for his next feeding. They decided not to throw him off of his schedule, so they had the nurse's set up his NG feeding before they headed out. Once they were ready to go, the nurse called for transport. It just so happened that the same lady that transported Paxton and Susanne yesterday was the one who showed up to take them to the car. They got to have one final joyride in the wheelchair. Scott had a wheelchair as well, but it was for all of the stuff that we accumulated while Paxton was in the hospital. Paxton's souvenir for his stay was a different animal wubbanub pacifier for each day he was there. The monkey will always be his ultimate favorite, but now they had additional buddies that Paxton could love on. The new additions included a red dog, a yellow duck, and a green frog. They were all super cute.

On the way back to the hotel, Scott and Susanne decided to pick up something quick for dinner. Scott spent the rest of the evening working on his dissertation. He was hoping to knock it out by the end of the week.