Mommy...

Hey Bubba,

Nope, its not Sunday. Nothing big has happened since your last note. As a matter of fact it has been an uneventful couple of days and you have been busy flashing your pearly whites (yep, there are two of them now) for everyone to see. So I am going to take this time and talk to you a little bit about someone pretty special to you, someone you probably associate with everything good in your world, someone who does everything in her power to make you happy every day. I'm sure you have guessed by now who I am talking about, of course its your Mommy.

So where do we start? I guess we should probably start a long while ago when she was a little one herself. You see, even when your mommy was a little girl she wanted to have a little one of her own to help take care of. She was lucky enough to have your uncle Scooter come along when she was four years old but once he started to grow up and get bigger your mommy wanted to help take care of other little ones too. She would baby sit every chance she got and even asked your grandma and grandpa if they could adopt a little baby. That didn't exactly happen but she had plenty of chances to help take care of little ones as your cousins came along.

Then, after your mommy grew up and finished school she started seeing her friends have little boys and girls and she couldn't get enough of them. She always wanted to hold them and play with them and offered to babysit every chance she could get. Daddy was always happy to help out too but there was just something that sparkled in your mommy's eyes when she got to take care of a little baby. I guess that is probably because your mommy has always wanted to be just that, a mommy. She has always dreamed about a little one of her own to cuddle and play with and rock to sleep. She has always wanted you Connor. Now until you came along we did find ways to keep your mommy's mommy instincts working...

Now it took your mommy and daddy a while to get things in place and feel comfortable taking on so much responsibility, but as it turns out we needed all the prep time we could get so that we would be good and ready for you when you showed up. Back in February of last year your mommy found out that you were on your way. She cried when she told me about it and just like the tears she cried for you in the hospital, these were tears of happiness and love. She was finally going to be able to be the person she had always dreamed of being, a mommy. And at that moment your mommy became a different person. She has become and even more amazing person than she was before, and that says a lot.

She started taking all these silly pictures that for months at a time looked just the same. She started thinking about names and your mommy and I even created a game we would play to help us find names. She started watching all the things she was eating and making sure she got the right kinds of exercise. She started thinking about things like what kind of car we would need when you showed up. Your mommy was starting to put everything in place to make things perfect for you upon your arrival. She was full on in mommy mode, or so we thought.

Once we got closer to the big day your mommy was doing everything she could to stay strong for you, even though she was headed into the biggest and scariest day of her life. Not only did we not know how things would turn out for you but we had no idea how things would go for mommy as well. You started trying to come into the world early and mommy did EVERYTHING she could to keep you in and let you grow as much as possible but when you decided it was time she couldn't slow you down. You didn't make it easy on your mommy either, you decided to come out the wrong way and because of your medical issues you had to come out quick. The doctors said it would be tough but your mommy showed them what tough is. The doctor that delivered you was amazed at how well your mommy did and I can tell you that I have never seen anyone stronger than she was that day when you needed her most.

But in the face of all the odds stacked against the two of you, your mommy managed to get you out as healthy as you could possibly be. The doctors couldn't believe how well she did and I was in awe. She had to have some things fixed up after you were born but that didn't stop her from coming to see you at the hospital either. She made sure that she got a pass to come and visit you each night while she was still in the hospital herself. Nothing was going to keep her away from her baby boy. And as the days stretched into a week or two your mommy remained as solid as a rock, the foundation of our little family, as we waded through the medical mumbo-jumbo and the doctors, trying to find some light at the end of the tunnel. Even as she started to show the slightest signs of tiring she was given the gift every mommy wants most when their baby was born, she got to hold you tight.

And if there was a way for your mommy to all the sudden become even stronger and more attached to being YOUR mommy then it happened right then and there. She put on a special type of armor that only mommy's have, armor that defends them from anything that tries to hurt their little baby. She wears that armor today, and she uses it every time something scary threatens to hurt you. Your mommy would step in front of anything trying to come get you Connor. And every time she holds you and every time you smile at her that armor just gets stronger and stronger and her strength to help you and protect you gets stronger with it.

These days, now that we are out of the hospital, the things your mommy does for you are different than they were before, and there are a LOT more of them. She gets up early every morning to help with all of your care. She makes sure you are fed and have all your medicines each day. She does your trach care and your cath's and your baths and everything else that has become part of your daily routine. Your mommy does more by noon every day than most people can cram into a full day at work. And somehow, in the middle of all that, she finds time to cuddle and play with you like she has always dreamed of doing. 

She takes care of keeping track of all your appointments, she knows all your nurses and their schedules, she keeps up with all your therapists and their schedules, she even knows most of your doctors on a first name basis at this point I bet. I think every day just how lucky you and I both are that your mommy is as amazing as she is. I can't imagine another mommy in the world that would be able to do everything that she does and still keep the smiles and positive attitude coming. Every day she wakes up and no matter what the day brings she stays strong for you and takes care of you. Your mommy sure does love you little man. 

And do you know why she does all these things for you Connor? Because you are her little boy, and she is your mommy, and that is all she ever wanted to be. So lets be thankful together, you and I, and make sure that mommy knows just how much we appreciate everything she does and everything she is, because without her I think we would both be lost. Thank you Mommy, thank you for being the best mommy in the world. 

Now get some rest little man. Have some sweet dreams about that wonderful mommy of yours, because you can bet she will be dreaming of you. 

We love you Connor.

 - Daddy

Weekly top 10...

Bubba -

We are going to go on a a little trip here tonight, it will be short but will cover a lot and there will be visual aids for those who are clamoring for such things. We haven't updated you on some of the big things that have gone on in your world for a while now and its time to do that. However, that isn't the only thing I want to tell you about so we are going to do an abbreviated version. If I were even a little bit of an artist when it comes to the musical world I would try to throw together a Connor Logsdon version of "We didn't start the fire" but that is something I just don't think I can pull off. But enough of my shortcomings, here we go...

You have been spending a lot of time with mommy lately. The two if you are quite the pair. You have also been spending time with your nurses too. And we have another one, someone who is going to be helping mommy and daddy on the weekends so we can hopefully have some sort of social life down the road. In the mean time we did find something that we could do without nursing.

Last Friday, when we didn't have a night nurse, we took you to Champp's again and spent some time with your Uncle Scooter, Auntie Beth, Uncle Jamie, and Auntie (too soon?) Kristine. We all played Trivia together that night. You even dressed up for the occasion.

Snazzy, I know. Mom was pretty proud of this one, it even included shoes that you wore the entire night. You were quite the ladies man as well, Beth and Kristine had no interest in trivia once they saw you. You have also been working hard on all your therapy. OT, PT ,and Speech are here all the time it seems and they are all pretty darn happy with what you have been doing in your spare time. It seems that all that time you spend with mommy isn't just playing, there is a lot of work involved too. Even Grandpa gets in on the hard work, although I think when you and he do it the two of you have more fun than anything.

He is largely responsible for your new found ability to roll from side to side with ease. Way to go Grandpa. As you can see you are also sporting a new piece of medical equipment. You may not know its medical equipment with all the fancy stickers on there from you Auntie and Uncle but its actually a helmet to help your little head get back to the shape it was supposed to be. Turns out all the time lying flat on your back in the hospital may have done some damage to the aesthetics of your dome.

As you can see you don't always love having it on. You don't seem to hate it but you don't like it either. We are currently on the third or fourth "reshaping" of the interior so that your head doesn't get rubbed raw but its a process and as usual you are being brave about it. Most of the time you don't even know its there.

You had a milestone the other day. Your Grandma calls them birthdays but that is a point of dispute since birthdays celebrate years of life... But we are going to let her shower you with birthday wishes and gifts as often as she wants, you have been through enough to deserve it. A few days ago you turned eight months old. It has been a long eight months Bubba, and you have surprised a lot of people by just getting here to this moment. Now don't stop working, I know you have a lot more in there to show us all before you will take a rest.

I know we didn't cover everything in the last two weeks but those are most of the highs. Mommy is going to write you a note about a very special field trip you took so I won't spoil that one. And daddy is going to write you another note and tell you a thing or two as well. It may not be tonight since tomorrow will be an early day and this turned into a bit more of a story than I planned, but it will be soon.

Until then keep up the good work little man, know that we are so so so proud of you and LOVE you so much Connor.

 - Daddy

P.S. You have found your toes and I don't know who is more excited about it, you or mommy....

Another one of your mommy's favorite little outfits.

You and mommy out getting your exercise.  

Grateful...

Hey Bubsky (yeah, its a new one) -

Mommy did a great job catching you up on what all has been going on these last few weeks. I know she didn't cover all the stuff you have done in the last seven days but there are a few things that I think we need to discuss before we get into any recap from the week. Mommy and I try to keep everyone updated with the latest doctor's opinions and test results because we know how much everyone loves to hear about you and all the wonderful things you do. We have gotten away from part of the reason that I started writing this blog as we have attempted to keep up with everything in your busy life.

The truth is, just over eight months ago I sat down on the cold tile floor in the corner of your darkened hospital room and wrote you a letter to tell you about some of the things I was experiencing with you. That night I was terrified about a million things and I found myself floundering in my search for words to express the emotions of the days leading up to your miraculous appearance. The only way I was able to write down the thoughts I wanted to convey was to try and tell you what I was thinking and what I was feeling.

Those first months it became easy to put those emotions into your notes because your mommy and I weren't sure we would ever get the chance to tell you in person. We wrote out of love and out of fear, we told you the things we hoped and prayed we could one day tell you but needed to express to you no matter what. So many of those notes were written with tears on the keyboard as your mommy and I sat quietly in a room watching the monitors above your bed dictate our moods and our future with every tick. Every alarm brought on waves of uncontrollable nausea and a fear that our last note to you might have been the last one we got to write with you in the room. Those nights will forever shape me and the way I look at the people around me.

But as the days turned into weeks and the weeks into months it became easier to focus on the bigger updates, the doctor's visits, MRI's, procedures, and steps both forward and back. The fear had been lessened and we were able to breathe more easily knowing that reaper wasn't waiting behind each flashing alarm. We still told you the things we wanted to but we were able to interact with you, talk to you, even hold you. We could share our words and a our feelings without the keyboard or the blog. In those last weeks in the hospital we settled into a routine of updating you and your friends on the events of the week instead of telling you some of the things we want to tell you about the world around you.

So this week I am going to take a step backward and let some of that fear back in. I am going to tell you about the world around you, about the people, the places, the events, the emotions. This week we are going to go back to that dark night in the hospital room and talk like we did through the keyboard those first few weeks. Don't worry, I'll update you as we go, but this won't be a news report. I have had a lot of things building up in the back of my all too often cluttered mind and this week I am going to take the time to bring those things to the forefront so that time doesn't get away from us like it does more than I would care to admit.

The first thing I want to tell you is just how thankful your mommy and I are for all of the people who have come to our rescue in these last eight months. I have often sat and tried to think about all the people who have supported us in one way or another since you arrived, and even before then I suppose, and the list goes on and on and I lose track long before I can gain any ground. I have tried to break the list down into the different types of people, medical personnel, family, friends, neighbors. Then I tried breaking it down into the different places we get mail from, the people in Ohio, Texas, Kentucky, Kansas, even Puerto Rico. It didn't matter how I broke it down the list was too long. The number was to monstrous for me to manage.

So I am going to take a stab at some of the thank you's that I know we haven't been able to make yet, at least not in the way we wanted to. Thank you Megan (from the CICU) for being the one in the room to save Connor's life that first night. Thank you Jeff for driving all the way to Cincinnati to perform Connor's baptism and give us that peace heading into his heart surgery. Thank you Dr. Morales, Megan, and every one else in that operating room with you for sixteen hours. Thank you Rachel for making sure that Connor made it through those critical first 12 hours. Thank you Dr. Connor, Dr. Nelson, Dr. Marino, Dr. Illius, Dr. K (Catherine), Dr. Cooper, and the myriad of fellows (Ben, Ryan, Dave, Sam, and so so many more) and nurse practitioners (Mellissaa, Amy, Gabby, and all the rest) for everything you did to get our little man and his parents though all the months in the ICU. Thank you to all the nurses, RT's, PCA's, pharmacists, dietitians, PT's, OT's, speech therapists for spending all the time with us in his room and helping him grow stronger and get away from all those medications. Thank you to the staff of the TCC, your efforts and education made our transition home possible.

Thank you Heather, Angel, Phil, and every other family member we met in the CICU, without you we couldn't possibly have gotten here. Thank you to our parents (your grandparents) for being there when we needed you most. You have no doubt done a lot for us in our lives but this may have been our greatest time of need and you were there for us in every way all the time. Thank you to the rest of our family for standing strong with us and behind us as we have made this journey. Thank you for the prayers, the dinners, the gifts (Kim I still wear that bracelet every day, Leslie we have read and re-read the letters you sent, Marty your guardian angel has been watching over Connor since the day he received it) and the endless support. Thank you to our friends, the people who have been so patient with us as we have struggled through this seemingly endless maze of doctors and tests and the not knowing that comes before and after each. Thank you for still being there, thank you for taking us out for a beer when we need it, for bringing us a coffee maker when caffeine was the only thing keeping us alive, for an unexpected box full of outfits or burnt orange that brings us enough happiness and strength to go through another day.

I could do this all night and still not come close to saying thank you enough, but the red light is flashing and that means its time to wrap this up before they cut to commercial. Sorry I went crazy with my Oscar style thank you list but I just want all the people out there, everyone that has done so much as send us a positive though, to know how much they all mean to us and our little boy. Hopefully when you get older we can read through this note together and I can tell you about all the wonderful people who made your journey so far possible. People tell your mommy and I that you are a miracle baby. We tend to think that the miracles have been all around you to bring you here.

So lets take one more second here son, and say THANK YOU to everyone out there. We love you all.

And we love you most of all Connor.

 - Daddy

The good, the bad, and the ugly....(Part 2)

Hi Connor,

(Believe it or not I have attempted to finish this note to you 4 days this week.  Now that it is 2 a.m. and I am acting as your night nurse until daddy switches me shifts I am determined to finish.  Sorry to any of your fans that have been checking daily for mommy to get her act together.  Daddy promises he will write you a note this weekend recapping this week so we will be all caught up).

Let's pick up on "the good" part of our story from last week.  After you got through "the ugly" on Sunday you started to perk up over the next few days but we're 100% yet.  Wednesday was a big day with 4 different doctors waiting to see you downtown.  Mommy and daddy started the morning super early to get things ready and we had our fingers crossed that you would wake up in a good mood.  As luck would have it you slept all the way to the hospital and woke up all smiles as we headed into Children's.

Your first appointment was with Genetics.  This was a doctor we hadn't seen before because unfortunately Dr. G who you had seen so many times only sees kiddos like you while they are in the hospital not as an outpatient.  This new doctor asked mommy and daddy a lot of questions about you but didn't have much of anything new to tell us.  He was AMAZED at how interactive you are despite your poor hearing and complex medical history.  As we have heard from so many people you are quite impressive.  He wants to see you once or twice a year to keep tabs on how well you are doing but as of now feels that mommy and daddy have all our bases covered as far as which doctors are involved in your care (or perhaps the easier list to make would be which doctors aren't involved).

Next we headed to a clinic where we were able to see your urologist and endocrinologist in one visit.  Dr. Reddy is your urologist and has been a doctor of yours since before you were born.  He is the one single doctor that has personally followed you since they discovered your complexities two weeks before you entered the world.  Mommy and daddy think the world of him and based on the smiles you give him I'm guessing you don't mind him either.  He feels that for now your bladder and kidney status is stable and although we know you will need a surgery for this in the future we need you to grow before that is a possibility.  Until then we will have to continue to cath you, take your medicine, get ultrasounds and follow up with nephrology to make sure we are doing all we can to protect your kidneys.  You will also have to have another surgery with Dr. Reddy in the next several months to work on bringing your boy parts down where they need to be.

This is where endocrinology comes into the picture.  Dr. Rutter is your endocrinologist and she's a pretty smart lady.  She suggested that we give you some hormone shots to see if it would help get things moving closer to where they needed to be so it will be an easier surgery for Dr. Reddy.  She talked about all the possible benefits with mommy and daddy and the only real down side is that you have to get a series of 6 shots.  Dr. Rutter was worried if you could handle that until daddy and I reminded her that you were used to getting 2 shots a day for the past 6 months so this would be nothing.  We will start those some time in the next few weeks but I know you will breeze right through them bubba.  Dr. Rutter said your thyroid levels were perfect on the dose of medication you are on so no other changes from her department. Check......  3 doctors down, 3 good reports, and 3 appointments worth of a smiling Connor.  Mommy and daddy couldn't be happier.

Last stop of the day was immunology.  Mommy has been more worried about this follow-up appointment than any others.  Mommy and daddy were so happy to see that we were scheduled with your favorite immunologist from your time in ICU, Dr. A ( I know you have more than one Dr. A, sorry it's confusing).  The immunology doctors already know that you have a very small thymus. A thymus is responsible for creating and directing your germ fighting abilities.  Although your thymus may be small it has the potential to do a complete job.  As Dr. A explained it, "you can get a great education from a one room school house."  Early tests showed that your body does know when infection is present and it calls the Army to fight.  The question has been do you have the right ammunition to fight specific enemies.  The only way to test for this was to give you some vaccines and then do some tests to see how your body responded.  This process takes several months so we have been patiently awaiting and trying to keep you extra safe from germs.  Dr. A said that so far all of your results looked normal.  That is AMAZING news.  You have a lot of vaccines to get caught up on and now you have been cleared to start getting most of those.  There are still a few we have to protect you from until you are a year old and we can do a more specific test to make sure they are safe.  Mommy and daddy are overjoyed by this information.  We know it means that we still have to be protective of you around germs but hopefully it means that as you get bigger, stronger, and rid of some of your equipment you will be able to play with other kids and stay healthy.  Thank you to everyone who said extra prayers with mommy about this appointment.

Grandpa's always trying to sneak you treats

The rest of the week rolled on with some more home therapy.  You have been doing some pretty impressive moving these past two weeks despite some rough patches and your therapists couldn't be happier. Your biggest accomplishment over the past week has been rolling from your back to your sides.  Now you have done this randomly on occasion in the past but this week was the first time we could consistently get you to roll to both sides on cue.  I think we may have almost practiced a little too much because now sometimes it's like you go into automatic roll mode once we start (when we give Grandpa instructions to work on something with you he doesn't take it lightly).  A few times you have accidentally rolled yourself all of the way onto your stomach.  You still don't particularly like this position but you are tolerating it better.  Now you are able to lift your head up in this position and we are working on you pushing through your arms (we still have a lot of strengthening to do in this area).  Before you know it you'll be moving around like a pro.  Mommy is very proud that all of our "mommy therapy" is paying off.

During one of your therapy visits you had a very special visitor here to cheer you on.  Your Great Aunt Marty was able to meet you for the first time.  You sat on her lap and seemed to take particular interest in checking out her super cool motorized scooter.  Your Great Aunt Marty is an awesome inspiration for you.  She has had more therapy in her lifetime than anyone Mommy knows.  She has achieved goal after goal when so many times people have told her it's impossible.  I hope that you have half of the drive and determination that she has always possessed.  Mommy and daddy were so happy that you two were finally able to meet.
*(I have a great picture of you and Marty but I can't go downstairs at 2 am to upload it on the computer so I'll add it tomorrow.)

Friday night we had a fun celebration for your Uncle Scooter's birthday.  He and Auntie Beth came to Grandma and Grandpa's house and we all had a nice dinner.  Although it was Uncle Scooter's birthday party you still kind of became the star of the show.  You seem to have a way of doing that these days buddy.  This may have been the first time where Uncle Scooter beat out (or at least tied) Auntie Beth for face time with you.  Your Uncle Scooter is a nut but you seem to enjoy his crazy noises and silly games (as long as you get some time to flirt with Auntie Beth too).

Watching cartoons waiting for the party to start

Saturday morning you had another appointment.  This time Grandpa and mommy were your escorts.  Grandma had stayed up most of the night before being your nurse and daddy had to work (and was scheduled to stay up with you Saturday night).  Luckily we didn't have to go all the way downtown for this appointment.  This time we saw the nephrologist who is the kidney doctor I mentioned earlier.  He feels that your kidney function is stable at this time but is concerned that you have a little too much calcium in your kidneys as a result of one of the medicines you take.  This medicine is from cardiology and they plan to work on weaning it before long so hopefully that will only improve things for your kidneys.  Mommy had not met this doctor yet but he was very nice and thorough. He even took mommy in the back to look under the microscope with him.  Boy the things mommy is learning these days.

These appointments are tiresome

Because you had been such a star at your appointment in the morning and happy all afternoon mommy and daddy decided to try another first with you.  Saturday evening we went out on our first non-medical outing.Where did we go you ask?  Champs of course.  This is one of mommy and daddy's favorite restaurants.  By the time we decided to take on this adventure it was almost dinner time.  Luckily your Grandma and Grandpa stopped their yard work and were willing to go to the restaurant before mommy and daddy to get a table.  The three of us were able to stroll right in and join Grandma and Grandpa who already had delicious nachos waiting for us.  Yummy!  You slept through most of dinner but were pretty content when you did wake up.  It was an amazing feeling to have you out of the house and sitting right by the table in your stroller with the family as part of our dinner.  This was a very big deal to mommy and daddy.  We are so thankful that Grandma and Grandpa stopped their plans once again to help us out.  We are also very thankful that you behaved.  There are so many fun things we want you to experience outside of the house and hospital.  This was a big first step.  Good work little man.

As if Saturday night wasn't a big enough adventure mommy and daddy squeezed in another first for you on Sunday.  We went for a walk around the neighborhood.  At first we didn't think it would last long because you still aren't a big fan of the bright sunlight but after just a try or two you decided your sunglasses weren't so bad and away we went.  We walked for about an hour.  Part of the time you took a power nap but the rest of the time you sat in your stroller happily looking around.  You never stop amazing us.  Just think if we could go out to dinner and for a walk in one weekend imagine what we could do next.  All of this excitement is exhausting and this has been another long week but I'll let daddy fill you in on that in the next day or two.  For now you should rest sweet boy.  Life has lots of adventures ahead for you.  Some of them good, some bad and hopefully only a few that are ugly.

Mommy and Daddy love you more than words can say Connor.

-Mommy

The good, the bad and the ugly....(Part 1)

Hi little man,

You probably noticed that mommy didn't write you a note last weekend.  I'm sorry for that buddy but things were a little crazy.  To be honest things were more than a little crazy they were pretty insane.  I'm going to try my best to recap the past two weeks without writing a novel but I make no promises.  A lot has happened since our last note some of it good, some bad and some down right ugly.

Let's start out with "the bad" which unfortunately progresses to "the ugly".  Your daddy's last note left off after your appointment on Monday the 13th.  Tuesday we didn't have to be at anywhere but you did have two in-home appointments that went off without a hitch.  Early Wednesday morning you, mommy and your nurse Zion headed to the hospital for an early appointment.  As soon we as we got checked in you started gagging and spitting up (which is very unusual for you).  For the next several hours your heart rate was elevated, you were breathing fast and you just weren't yourself.  To make matters worse this wasn't a typical appointment but a clinic in which we had to sit in a classroom with a bunch of other babies and their parents for a presentation then wait in the waiting room for our individual appointments with the nurse practitioner and finally meet with the equipment company.  The purpose of this appointment was to fit you for a helmet since your head is so flat in the back from having to lay still for so many months in the ICU.  Mommy and daddy aren't too excited about this one since you are such a little hot box all the time and you don't exactly like things on your head not to mention we are heading into the summer months.  We know that it's something that needs to happen sooner rather than later but we still aren't looking forward to it.    Let's hope you surprise us as you have with so many things and just see it as a really cool accessory.

Wednesday was exhausting but by bedtime you had settled down and were acting like yourself again. We all assumed it was just an off day and whatever was going on had worked itself out.  Mommy was certain that you would be just fine and we convinced daddy that he should still go on the trip he had planned to Texas.  You tried to sneak in daddy's suitcase so you could go visit your Gigi, Grand dad Rooster, Uncle Sebastian, Aunt Alexa and Pappaw.  I promised they will all come to visit you again soon and before you know it we will be making that trip to Texas with daddy.  Although we couldn't all go mommy was very happy that daddy had a chance to see his family and give them hugs from all of us.

Thursday morning you made it clear that whatever was bothering you wasn't gone yet.  After much debate mommy and Grandma went ahead and took you to your pulmonology appointment that afternoon hoping they may have some answers.  The nurse and doctor spent several hours with you but after careful examination and some cultures they didn't find anything to be the cause of your issues. You did have some drainage around your trach for which they gave mommy some drops to clear things up but in the end no bacteria grew on the cultures.  We kept the Tylenol pumping through you and once again you seemed to settle out as the evening progressed.  Mommy really felt like you were over the hump and Friday we would be back to business as usual.

Mommy was wrong.  Friday morning started pretty rocky and this is where we move into "the ugly."   Mommy had to call the pulmonologist to give her a report since you had gotten worse from your visit the day before.  She wasn't able to see you and said you probably needed to go to the ER based on how fast you were breathing, your increased heart rate, low grade temp, gagging and increased work of breathing.  The other option was to see your pediatrician immediately.  Once again Wendy came to the rescue.  She was able to fit you into her schedule and back downtown we headed for the forth day this week.  Between doctor Hall and Wendy they literally checked every inch of your little body.  They did urine cultures, checked the respiratory cultures from the day before, x-rayed your chest and belly yet didn't find anything significant.  Because they had ruled out all of the extremely serious concerns we were able to return back home and check in with them over the phone.

The next two days are a bit of a blur.  Daddy was out of town, we didn't have a nurse either night or one of the days, and you were sick.  Thank goodness for Grandma and Grandpa.  Without them staying up half the night, waking up at the crack of dawn, fetching this, suctioning that, rocking you just so and feeding mommy I'm not sure how we would have made it through.  Things all kind of came to a climax Sunday morning when for the first time mommy thought there was a chance we were going to have to call an ambulance.  Thankfully Dr. Hall and Wendy had sent us home with an inhaler in case of such situation.   We were able to get your breathing and heart rate under control and as Sunday progressed you improved by the hour.  You were still fussy and tired but by Sunday night  your breathing was close to normal again and your heart rate was down.  You even squeaked out a half smile late Sunday night when daddy got home from the airport.   It took another 2 days for you to regain your smiley playful personality but it was obvious you were on the mend.

So what was the cause of such a rough few days you ask?   Good question.  Mommy has a few theories.  One is that you got your first tooth!   That's right between Saturday and Sunday your first pearly white peaked through your pink little gums.  Mommy also realized that we had weaned another one of your medications the previous week so you were still getting the night dose but not the day time dose which may have explained why mornings were so rough.  Lastly you had a lot of extra secretions and there was this new gagging maneuver that you had learned.  The week before during your scope Dr. A had removed some scar tissue from above your trach.  Mommy believes that this now allows you to cough up a lot of the secretions that you previously couldn't move past your trach.  Because you aren't used to this you haven't quite figured out what to do with it and mommy believes it is making you gag.

Although I hate that you had to go through such a rough few days I am extremely proud that you were able to work through it and not end up in the hospital.  You made it through 4 doctors visits in 5 days while being sick as well as a weekend without nurses or your daddy.  Mommy is super proud of how tough you have become and how much you are able to tolerate.  You have always been a strong boy but your tolerance and ability to bounce back from things is growing each week.

We still have "the good" part of the story left but mommy can barely keep her eyes open so I will write you part two tomorrow.  Stay tuned.........

Mommy and daddy love you Connor!

-Mommy