A party in your honor...

Hi Little Man,

I want to start off by letting all of your fans know that everything is ok.  You well know what an insane past month we have been through but that's still no excuse for not keeping in touch with everyone.  It's amazing how many people have called, text, and emailed to check on you since they haven't seen any recent notes.  I do plan to do my best to bring everyone up to speed but not in this note.  This note is about a very special event that happened right after mommy wrote last.

About a month ago a fundraiser took place in your honor.  We couldn't have asked for better weather or a more amazing group of people to be surrounded by.  It took place at Grand Sands in Milford and not only were mommy and daddy both able to attend but you made an appearance yourself for a few hours.  It was by far one of the best days mommy and daddy can remember during the past year.  Although we will never forget the day I wanted to make sure you had a note about it that you could read when you were older.

The day consisted of a HUGE corn hole tournament, the biggest raffle ever, music, split the pot, games, food and drinks, massages, and a serious volleyball tournament.  I think it's safe to say that everyone who attended had a blast.  Mommy and daddy were truly humbled.  We could not believe the amount of people who attended, contributed, volunteered, and donated.  Person after person came up to mommy and daddy to show their support.  Mommy has to be honest in saying that there were several times throughout the day that she had to choke back tears.  All of these people gathered, worked and celebrated for you Connor.  Most of them had never met you until that day but have thought about and prayed for you almost daily for the past nine months.  The crowd was quite a blend of people from immediate family to, cousins, great aunts and uncles, friends of grandma and grandpa, friends of uncle Scooter and Auntie Beth, friends of friends, lots of  awesome people mommy used to work with from Carespring, friends daddy has worked with in several different adventures over the past 10 years, friends of mommys from high school and college, friends of daddy's from college, even mommy's old boss from LaRosa's and your heart buddy Ava plus her whole family.

The day was so well organized and thought out.  There is no way this amazing day couldn't have happened without a lot of people but one in particular needs a special thank you.   I'm not sure what relation she would be considered to you Connor but Valerie is mommy's cousin.  Her and mommy grew up very close and actually called each other sisters for a while.  When I talk about her to you I call her your aunt so although that may not be technically correct that's what we call her Aunt Valerie.  She is one of the busiest people I know but also has one of the biggest hearts I have ever seen.  Without ever haven gotten to meet you she took it upon herself to organize this event in your honor.  Somehow she juggles working two jobs, raising four kids, coaching a million volleyball teams and playing volleyball herself yet she found time to drum up donation after donation for you, organize a corn hole and volleyball tournament, recruit volunteers, and spread the word to hundreds of people.  She is a truly special person and we can't thank her enough.  We would love to make this an annual event, that is if your Aunt Valerie is up for it :-)

The results of her hard work raised over nine thousand dollars for your fund.  Mommy and daddy can't wait to use a portion of that money to help some of the organizations that have made our lives possible during the past year.  We are working on setting up a program with your equipment company (RSVP) to help pay for portable suction machines for kiddos with trachs.  Ohio medicaid no longer pays for these machines and we are very fortunate that RSVP has continued to provide these to families purely at a cost to them.  Without these machines it would be impossible for you to leave the house even to go to the doctor. RSVP is a great company that has amazing customer service and a genuine concern for their clients.  We also have donated and plan to continue to donate to the Ronald McDonald house.  They provided a home for mommy and daddy for nearly 5 months so that we could still be close to you yet get rest and food ourselves.  I know we have written about them before but we just can't say enough about how awesome of a place the Ronald McDonald house is.  There are two other organizations that mean a lot to mommy and daddy but we haven't narrowed down how we will contribute to them.  One of them in the CHARGE foundation which provides support, education and resources for children and families with CHARGE syndrome.  There is a CHARGE conference every two years which unites CHARGE families from across the world.  Mommy was very sad we weren't able to go this year but can't wait for 2015.  Mommy and daddy would like to help make it financially possible for more families to attend what sounds to be a life changing event.  Lastly we would love to contribute to the Cardiac Institute at Cincinnati Children's.  These people not only saved your life (literally) but kept mommy and daddy alive during those most difficult months.  We are forever gratefully to so many people and can't wait to pay forward even just a fraction of the generosity people have shown us.

Mommy and daddy tried to thank each person that contributed individually but we know that we missed some people.  We have thank you notes for several folks (that were briefly packed and lost in the move but now have been uncovered) but with the commotion of the day we know there are people we are forgetting and we hate that.  Thank you to Grand Sands for the donation of your beautiful facility and all of your help in running the tournaments.  Thank you to Valerie and all of your family for the immense amount of time and energy that went into this event.  Thank you to Jessica.  Jessica had never met you or mommy and daddy yet helped your Aunt Valerie get donation after donation and put together every part of the special day.  Thank you to all my aunts and cousins that worked the raffle all day long.  Thank  you to those who donated raffle items and those who bought tickets.  Thank you for all the generous donations.  I apologize to those that handed me cash that day and I didn't remember to send thank yous to.   Thank you to everyone who was unable to attend this awesome day but sent monetary donations or well wishes and support from afar.  Thank you to each and every person who attended the event.  Whether you were able to stop by for five minutes or spend the entire day, each of you made a huge impression by being there.  Mommy and daddy have missed seeing our friends and family so much over the past year that we wished the day could have just gone on and on so we could have caught up with everyone.  Although we may have not seen most of you in person recently you have never been far from our thoughts.  Your love and support have gotten us through these past nine months.  We truly love you all and feel blessed to have you in our lives.

Connor I hope as the years go on and you grow bigger and stronger you will be able to play at events like these and hang out with all of the amazing people who have supported you from day one.  I know that you could feel the outpouring of love that encompassed that day and the happiness it brought mommy and daddy.

To all of your fans.... thanks for you patience.  I plan to try and write a note nearly everyday for the next week to try and catch everyone up.  I unfortunately do not have any pictures from the event but would love if anyone has some they could share.  Here are some pictures of Connor to brighten your day!

Mommy and daddy love you Connor
-Mommy

A very special field trip...

(Somehow forgot to publish this one. Oops.)

Hi Stink Stink,

Although this nickname may sound new to your fans it's something mommy has been calling you for a long time now.  Daddy and grandma gave mommy a hard time about how many other cute nicknames you have compared to Stink Stink but I have caught both of them using it from time to time.  It's a very fitting name for you because not only does it describe the serious mess you can fill your diaper with but it also is a perfect description of the mischievous demeanor you have from time to time.  Kind of like when you are pulling on your trach and mommy tells you no.  You seem to know what that means and typically let go but only after holding onto it an extra second and flashing a big smile.  

As daddy mentioned the other day you went on a very special field trip.  Up until now must of your traveling has revolved around doctors appointments but not this one.  This time you went to the Cincinnati Zoo.  But this wasn't just any trip to the zoo.  This trip meant so much more for several reasons.  

Long before you started growing in mommy's belly her friends started having babies.  Mommy was unaware that if you live in Cincinnati (at least if you are part of my group of friends) and you have kiddos you go to the zoo regularly.  It seemed that everyone was always at the zoo with their babies.  Mommy couldn't wait to be part of that club and introduce you to all the cool animals as well as all the other little kids.  When you started growing in mommy's belly we were living in Texas and didn't know we would be moving back to Ohio.  As soon as we found out we would be moving one of mommy's first thoughts was "Yes we can finally be part of the zoo club."  I dreamed of packing up all your goodies and trucking you up and down the hills in your stroller or strapped to my chest.  How much fun I planned for us to have. 

Then we arrived in Cincinnati and found out about all your health problems.  You were born and fighting for your life.  Mommy's zoo plans seemed impossible.  Less than six weeks after you were born another special miracle came into the world.  Her name is Ava.  One evening while sitting in the CICU waiting room we met two people that had the same look on their faces that we had had the month before.  Your daddy and I introduced ourselves hoping to provide some comfort and answers to Ava's mommy and daddy in regards to this bizarre journey they were starting.  Little did we know that this conversation would start a great friendship.  

Phil and Angel went through so many of the same things with Ava that mommy and daddy went through with you.  We sat together as each of you went through surgery after surgery (infact you got your trachs the same day).  We compared notes about medicines, doctors, and labs.  We celebrated when one of you would have a good day and hugged each other during those difficult days. One of the first things that Angel and mommy talked about when we met was being able to take our babies to the zoo.  Angel understood.  Taking you and Ava to the zoo wasn't just about making the trip to a place with lots of caged animals it was about wanting our babies to be able to do something that we had dreamed about for so long.  Months went by and no matter how rough things got Angel and mommy always said "when we both get out of here we're going to the zoo."  It even got to the point that the doctors and nurses knew this was one of our goals.  

Finally that dream became a reality.  You, daddy and I met Ava and her family at the zoo.  In your matching strollers, with matching vents, suction machines, pulse ox monitors and feeding pumps we strolled around on what turned out to be a beautiful day.  When mommy brought up the zoo plans to daddy he started to say "Connor's not even going to know we are at the zoo" and then he saw the look in mommy's eye and said "Yes honey I can certainly leave work early to go to the zoo."  I think somehow you knew how important this trip was to mommy too.  You had a fussy morning but the minute we got to the zoo you were relaxed and calm.  You seemed to like some of the sounds and even watched the monkeys swinging from the trees.  You and Ava took turns snoozing as we made our rounds chasing after Ava's sisters.  Finally you were able to meet the special friend you had heard so much about.  Crazy to think that you and Ava had never been able to meet despite being in rooms just feet apart for so many months.  I know this certainly isn't the last time you two will accomplish a first together.  As Ava's sister says "Connor is probably Ava's boyfriend."

The past eight plus months have been pretty far from what mommy thought having a new baby would be like.  I can't count how many times I have dreamed about taking you to the zoo but I could never have imagined how special it would be when that time finally arrived.  After sharing so many difficult and heart breaking experiences with Ava's mommy and daddy I am so thankful that we were able to share this very happy and special one with them.  

We love you Connor and can't wait for many more trips to the zoo.

-Mommy

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