Gigi and the Deez....

Good Morning Bubsky,

Its been a while since I have written you a little note like this but sometimes I think that is just because you and I spend so much more time interacting that I don't feel like I need to type the words or the messages to make sure you some day get them. I know you don't know what all the words mean but I can tell you understand mommy and daddy sometimes, especially when we are trying to tell you something you don't really like and you look at us just long enough to let us know you are ignoring us. Oh yeah, we see it. But your mommy and I are going to try very hard to get back into the routine of writing you a little note at least a couple times a week. Its good for us, its enjoyed by all your many many fans, and hopefully one day it will be something you can enjoy too. I know that day may be a long ways off but maybe these stories will bring a smile to your face when you do finally read them.

So mommy told you all about our big move (which seems like an eternity ago now) and how well you did with all of that. Its still going well. You still seem to really like your new place and even though I think sometimes you miss the company of Grandma and Grandpa's house you seem to really be happy where you are. Maybe its the golf course you get to watch when mommy puts you in your seat or maybe its the fact that your mommy and daddy finally have some of their own stuff around them and feel a little more at home. Who knows, but like mommy said its great to finally get to start our own little journey as a family.

Mommy also told you that you had some special visitors coming to see you right after your move. She wasn't kidding. I know you remember your Gigi, the way I know that is by the look on your face when you saw her again for the first time in more than six months. She was there with you the first night after you were born and she held your little hands and made you toys and somehow I know that there is no way you will ever forget that. I know that your Gigi has been dying to see you for months now and I can't imagine how hard it has been on her to have to sit back and wait and live on pictures and short videos while you were out here growing up (well kind of). She is a tough lady your Gigi, she handled it like a champ.

But about a month before she got here she called your daddy and said "its time to see Connor". You see once you were born Gigi had a new favorite little boy in her life. She has a lot of them, your uncle Sebastian and I (although not quite so little any more) are up there toward the top but you and your step-cousins Michael and Jacob may have jumped up above us in the favorite boy category. Every little boy has a special place in his grandmother's heart and maybe it is just because of the way you came to all of us and the extra work your little heart had to do but I think you may have a bigger place in a few hearts. So the plans were made, the pieces put together, and your Gigi was coming to see you.

And you know what? This time she was bringing your Grandad Rooster. Now your grandad has been wanting to come meet you for quite some time now. And if it weren't for some heart problems of his own (he kicked their butt like you did) he would have been out here sooner, I'm sure of it. But sooner or later, he made his way out here and got to meet you for the first time. You will know him as Grandad, or maybe Grandad Rooster, but you will probably hear him called a lot of different names as well. You see after you daddy and your uncle Sebastian got to know your Grandad pretty well we started calling him by nicknames. I"m not really sure where they all came from but they all stuck, every one of them. The most recent was probably RDZ, and that has transitioned to "the deez" for some reason. Don't ask for an explanation because I don't think there is one. It makes your grandad smile and it makes us smile so we just go with it.

So you got a week full of hugs and kisses and pictures and cuddles and songs and stories that you hadn't had before. The last time your Gigi got to see you we were all still in the hospital and you weren't really able to be held much. Now its still not your favorite thing in the world but with some determination and a calm attitude we can hold you and cuddle you these days. You reserve most of that time for your mommy but you shared a good amount with your Gigi that week too. I think you too spent as much time cuddling in one week as you have with me since you were born. I'm not jealous though, I am just happy that you two got along so well and got to spend so much time together.

While your Gigi was here you ate dinner with us at the table almost every night, you went on field trips to the giant grocery store called Jungle Jim's, you went for a shopping trip and dinner at one of your Gigi's favorite Mexican restaurants, and you even got to go outside a few times as well. Gigi's next goal when she sees you is to get your little tootsie's in the grass. We were going to do it this trip but you weren't thrilled with life your last day and Gigi didn't want to push it. There is plenty of time for such things and I'm sure she will be back soon.

She said before she left that it had been too long and she needed more Connor in her life so she would be making more trips out here in the near future. She would have been out here more the last couple months but she used up all of her time off when you were born and when she saw you in December. Gigi spent a lot of time out here watching over you and your mommy and daddy and I don't know how we would have gotten through it all without her. For now lets just start counting the days until Gigi's next trip out this way, it will be here before you know it.

Keep up your smiles and chitter chatter little man, we will write you more soon.

Mommy and Daddy love you Connor.

 - Daddy


phone issues.... pictures to come

Moving Day

Hi Bubba,

Anyone who has ever moved knows it's a process.  Although I'm not an expert I've moved a few times now but this certainly was the most interesting move to date.  Thanks to your Gigi's hard work and supervision all of mommy and daddy's things were safely packed from Texas and stored surprising well for the past year.  Mommy and daddy have had some good chuckles as we unpack boxes that are sometimes labeled in part english and part spanish and we've even found a few labeled with completely made up words.  Always an adventure with us.  So the moving of our stored belongings went relatively well and the new house was coming together well but still needed a very important persons stuff....yours.

Moving one little boy shouldn't be a big deal right?  Wrong.  Obviously you have a lot of stuff to move but mommy and daddy aren't afraid of a little packing and lifting.  The tricky part of moving you little man was coordinating all the necessary parties.  Mommy had to contact about 20 people to notify them that you would be changing your place of residence in order to get your supplies, therapy, insurance coverage etc.  We had to keep all of your necessary supplies on hand until the actual time of moving.  Amazingly things went off without a hitch.  You woke up early and after finishing your morning routine said goodbye to the room you had called home for 3 months.  While you hung out in the family room with Grandma and your nurse, mommy and Grandpa packed the rest of your room.  In the meantime daddy finished work and then enlisted the help of uncle Sebastian and Jamie to help move what was left.  Mommy stayed at the new house and got your room set up perfectly while daddy and the boys moved more of the stuff we had accumulated at Grandma and Grandpa's.  Grandpa was in charge of all the power strips and safety features for your equipment.  Right on cue your awesome equipment company came and moved your oxygen since we aren't allowed to transport that.  Lastly mommy and daddy came back to Grandma and Grandpa's for the most important piece of cargo....YOU!

We all ate dinner at the new house and carried out your nightly routine.  You were surprisingly calm with the transition and seem to like your new room almost as much as the room you had at Grandma and Grandpa's. That night you slept like a baby (sorry I couldn't resist).  Mommy and daddy didn't quite know what to do having our own bed for the first time in eleven months.  I'd like to say I truly enjoyed that night of sleep but to be honest I think I just passed out from exhaustion.  It took a few days to work out all the little bugs and get into a grove but you were a champ and didn't miss a beat.  To be honest the transition was initially probably a little harder on mommy than you.  Mommy was very excited to have her own stuff and some space to call her own but she missed some very special people.

Grandma and Grandpa literally transformed their house, changed their routine and all but put their lives on hold for the past three months.  Mommy and daddy will never be able to thank them enough.  We took over more than half of their house and not only brought ourselves but your nurses, therapists, case managers and countless strangers.  We changed when and what they ate, what time they went to bed and got up, and recruited them for endless jobs, appointments and "training sessions".  I do not know if we could have survived without their help and support.  I know they truly enjoyed having the three of us there (especially you) but I have to imagine they will be a little happy to get their house and life back to normal.  Connor I hope you know how much they love you and how lucky you are to have them in your life.

There was one other very special "person" we had to leave behind during the move.  Your puppy Lexi wasn't allowed to come live with us in the rental house.  Mommy and daddy tried to negotiate this but we weren't able to get approval for a pet.  This absolutely breaks mommy's heart.  In fact I am tearing up thinking about leaving my first baby behind.  I know that she will be taken care of and spoiled beyond belief with Grandman and Grandpa but it made my heart smile so big to watch you and Lexi together.  I will never forget the first time she barked and you jerked your head to see what it was.  That was the first big response to sound that mommy and daddy had seen from you.  It was amazing how Lexi immediately was cautious of all your tubes and wires.  She was extremely protective and everytime it stormed she circled wherever you were laying and would try to lick you as if she was telling you everything would be ok.  You loved to reach out get kisses from her as well as a handful of fur.  Lexi was gentle as could be and I'm pretty sure the only thing we would have had to worry about between you two was her stealing your squeaky toys.  I promise buddy we will visit Lexi and you two can still play.

The new house is oddly quite.  We don't get the phone calls that Grandma and Grandpa's house did or the likelihood of at least one conversation going on at all times .  We don't know our neighbors yet and don't have lots of people dropping in like we sometimes did at Grandma and Grandpa's.  We don't have the noise of Lexi barking or Ollie chasing things and running into walls (like I'm sure Gigi is experiencing right now). God bless Gigi for taking such good care of Ollie (I think Grandma and Grandpa may have gotten the easier end of the deal with Lexi).  What we do have is our first home as a family.  We have a place to start making memories with just the three of us.  A place to find our new normal.  This is a big next step for us and mommy and daddy couldn't be more excited.  In fact so many times during the past year it felt like we would never reach this point.  Thanks for being a trooper even if you were a little bored by the fact that you only had mommy and daddy to entertain you after the move.  Luckily it was only a few days before two very special visitors arrived.........

Daddy is going to write you a note about that next!

We love you Connor.

-Mommy

Cliff notes

Hi Bubba,

You've probably never heard the term cliff notes before little man.  Cliff notes are a summary of a book or story that hit all the highlights, major characters and basic plot.  I'm going to do my best to give a cliff note version of the last month of our lives.  This is not only to bring your fans up to speed but so that when you are older and reading your life story you aren't missing an entire month.

The day of your awesome benefit you weren't acting your usual perky self.  There was nothing specific that we could put our finger on but both mommy and daddy knew something was brewing.  Over night that night you started to run a fever and we couldn't get it to come down despite our best efforts.  The following day things progressed and we ended up making our first trip to the emergency room.  Mommy and daddy had self diagnosed you with a UTI (urinary tract infection) and when we mentioned it to the doctors they kind of looked at us funny but after the test results came back our diagnosis was confirmed.  After labs, exams, x-rays, a dose of IV medication and lots of waiting we were headed home with a prescription for an antibiotic. Overnight that night you seemed to improve and we thought we were over the hump.

Unfortunately that didn't last.  The next 24 hours were a bit of a roller coaster. You definitely weren't over the hump, if anything you were headed downhill.  Turns out the antibiotics you were prescribed in the ER weren't enough to treat the type of infection you had especially considering your kidney troubles.  Your urologist decided you needed to be treated with IV antibiotics and we completely trust him so to the hospital we headed.  You were admitted to the CICU and after 6 tries the IV team was finally able to get the blood they needed for labs and start an IV.  Since you are such a little guy with little veins you are never an easy stick but because you were dehydrated it was especially hard.  Someone was watching over you closely because as you were admitted in walked one of your favorite night nurses and mommy was relieved to know that you would be taken care of by someone who knew you so well.  To top it off our good friend Dr. Marino was the attending doctor of the week and immediately mommy and daddy knew that everything was under control.

Your visit in the CICU was a bit like a celebrity returning to their home town.  Day and night you were visited by nurses, doctors, therapists, and other friends.  Everyone was amazed at how you had grown and all the new tricks you had learned.  It was almost 3 days before mommy and daddy saw the true Connor again.  Mommy and daddy stayed with you day and night so you were never alone.  You seemed happy to see so many of your good friends but definitely knew you weren't at home and kept a close eye on mommy and daddy.  The doctors decided you needed to get a PICC line put in to be able to keep getting your IV antibiotics since the hard to obtain IV in your foot didn't even last 24 hours.  Just when mommy and daddy thought we couldn't possibly have more to learn about taking care of you we were told we needed to gain the skill of administering your IV antibiotics unless you wanted to stay in the hospital for a full two weeks.  It was clear that as soon as you started feeling better you were sick of being stuck in the bed with all the extra wires so daddy and I started learning.  Once we were trained and tested we headed home and began the adventure of readjusting to life at home and mommy and daddy's new role as IV nurses.

The next ten days consisted of attempting to get you back on your normal schedule while mommy and daddy's schedule was anything but normal.  Our days and nights revolved around IV's every 6 hours, cathing you every 3 hours and all the regular medicine, feeding, trach care, therapy, etc.  Needless to say we weren't getting a lot of sleep.  Thank goodness we were still at Grandma and Grandpa's house and they were more than willing to help as always plus we had your regular nurses who could help with most things except the IV's.  You were extremely happy to be home.  Somehow during your five day hospital stay you developed the idea that you could absolutely not be alone.  In fact at first you thought it was necessary that mommy was not only in your line of sight but talking to you or else the world was ending.  Within a few days you decided that it didn't necessarily have to be mommy but you definitely needed the attention of either mommy, daddy, Grandma or Grandpa.  Although it was a little exhausting it was comforting to know that you could tell a difference between the hospital and home and were very aware of who you family is.

Mommy and daddy couldn't be happier to finish your IV antibiotics but turns out we were far from done.  In true Connor fashion you had been displaying a mystery that none of the doctors could figure out (and trust me we asked a lot of doctors about it).  For the prior month or so you had a weird blue drainage, that's right I said blue, around your trach.  Mommy has asked every specialist she could think of and none of them had ever seen such a thing.  Your awesome pediatrician even said he referenced the great "Dr. Google" without any luck.  While you had been hospitalized they did culture your trach and some bacteria showed up which is pretty common with kiddos who have a trach and typically the doctors don't treat this.  Well you weren't a 100% yourself after the antibiotics for the UTI and the crazy blue drainage was still there so after a major meeting of the minds (and about 20 phone calls) the decision was made to treat you for a trach infection with IV antibiotics.  So again we began a ten day round of different medicines and you continued to sport the PICC line.

During those ten days you did improve significantly and it appears we may have zapped the weird blue drainage for which doctors said they should write another research paper about you.  Currently you have been fighting some new irritation around your trach but that appears to be from switching brands so fingers crossed it doesn't turn into another infection.  As a result of your CICU stay you earned yourself a slew more follow-up appointments.  One of them with cardiology required you to wear a monitor at home for 24 hours because the last 2 days of your hospital stay your heart rate was dropping crazy low.  That seems to have leveled out over the past month but we will get the results of that study this week.  Aside from all the doctors appointments we had a LOT of appointments for your helmet.  Because you couldn't wear your helmet during the hospital stay we had to start over with building up your tolerance to it and that required a bunch of trips to get things adjusted just right.  Luckily you tolerate the helmet like a champ.  Secretly mommy is counting the days until that thing is gone and I can cuddle your cute head without hard plastic or the smell of a shoe (that's right I said your head smells like a shoe some times).

After the conclusion of your second round of IV antibiotics we have had a few other bumps in the road including a leaking feeding tube during the night on the Fourth of July requiring the placement of a new one but nothing you need to hear all the details about because for the most part they are resolved now.  Believe it or not mommy and daddy had a lot going on this past month outside of you.  One of the major things that has taken up our time is finding a house to live in.  We recently were able to sell our two story home in Monroe since it wasn't a realistic layout for our family right now.  For months mommy and daddy have been looking and trying to decide if we should buy another house and where.  Finally it was apparent that we couldn't possibly look into the future far enough to make buying a house worth while so we started looking at places to rent.  This proved to be a bit of a challenge.  We only found one ranch that was available for rent and in an area that made sense.  After some negotiations we signed a lease and for at least the next twelve months had a new place to call home.  After nearly a year in storage all of mommy and daddy's things were moved out of storage and into our new place.  It was kind of like Christmas morning.  Mommy awaited every load  off the truck with anticipation.  When mommy and daddy left our house in Texas it was completely set up and somehow in my mind I always felt like I was going to walk back into our house and everything would be there as I had left it.  With each room of stuff I was flooded with emotions and memories.   People always talk about simplifying their lives and getting rid of clutter.  I never thought I could do such a thing on an extreme level but after living with barely any of my own possessions for nearly a year I can say it's certainly possibly.

Mommy and daddy had the goal to get the house almost completely set up and cleaned before we moved you in.  We made a trip to the house every chance we could get (between IV times) to unpack and clean. Unfortunately we discovered a major leak in the kitchen that required some maintenance and delayed our moving by a few weeks.  During this period of time your Uncle Sebastian moved from Austin Texas to Cincinnati.  He was able to stay at our new house for a few weeks which was a big help while all the maintenance and painting was going on.  Mommy and daddy are super excited to have him close to us and can't wait until your Aunt Alexa will join him here in a few weeks.  We may be in trouble though now that both of your crazy uncles will be living in the same city.

As if your daddy didn't have enough on his plate with your rough health month, selling a house, renting a house, and moving he had more crap thrown at him.  Daddy's work has undergone some major changes.  I'll let daddy tell you all about it someday because it's a story in itself.  Moving to Cincinnati was suppose to make daddy's work easier and be less stressful for him but that's not exactly how things have played out.  Your dad is the hardest working, most determined person I know.  It's too bad more people aren't as driven, honest, loyal and compassionate as your daddy.  This world would  be a much better place.  I have no idea how he finds the energy to do all that he does.  Despite all that is going on in our lives he is constantly thinking and working on how to help others and keep things going no matter what obstacle is put in his way.  Mommy does her best to keep up with daddy but it's nearly impossible.  One day he left for work at 4:30 am (after doing your four o'clock IV so mommy could sleep) and didn't get home until 11:30 pm.  I'm pretty sure he has super human powers.  You sure are lucky to have him as your daddy and mommy doesn't know what she would do without him.

Whew.  Are you tired thinking about all that?  I sure am.  I think that hits most of the highlights until we actually moved two weeks ago.  I will write you a separate note about that tonight.  For now your nurse just got here so mommy has to go shower and get things packed up for your appointments today.  Thanks for staying asleep this morning so mommy could write you a note.

P.S. You are pretty adorable when you are sleeping!

Mommy and daddy love you Connor.

-Mommy