What a Wonderful Day... from DB!

BB:  “Hey DB, do you want to blog tonight? It’s so much fun!  And therapeutic, too!”

DB: “I don’t know BB.  I don’t see how I could top the fun I had changing 7.5 diapers today.”

BB: “.5 of a diaper?”

DB: “Don’t ask.”

This is a fairly common conversation in the Byrne household (Babyland).  To be honest, BB has a lot more energy than I do.  I believe during the 14 months Samuel was in the NNICU some of the steroids, through osmosis, entered her body.  By the time all of the fun and excitement at our house ends, at roughly 9 p.m., I like to sit on the couch and watch TV, while BB blogs.  Actually, it has always been my intention to blog.  I was simply waiting for a truly momentous occasion. 

You might be thinking, “It’s been over 2 years.  The birth of your children?  Bringing O and G home for the first time after nine weeks in the NNICU?  Samuel’s miraculous recovery?  Samuel’s de-canulation?  O and G’s first steps?  First words?  Samuel’s first steps?  Samuel’s first signs?  Do you not consider these events worthy of blogging?”  Perhaps.  But what happened today truly brought tears to my eyes.  Not that the other events didn’t, it’s just that I got a little more choked upped today than usual.  I know the suspense is probably killing you so I will cut to the chase.

On July 2, 2011, Samuel Wright Byrne made his first trip to Wal-Mart!  (In fact, it was his first shopping trip anywhere... ever!)  The first of many I assure you.  I have never seen the little guy so happy especially when we checked out the cool BB guns in sporting goods.

BB was right – Blogging is fun!  But not as much fun as a trip to Wal-Mart with my children!

DB and Samuel all smiles!

(Thank you Sam Walton!)

Not sure what's better, the fact that it's so obviously Wal-Mart because of the massive cases of drinks in the background, that DB was feeling good enough to push a cart around Wal-Mart today (please don't tell his cardiologist), or that we need two carts if we ever want to take a family grocery trip :)  Ha ha!

Just Love!

This week there was only love :)  On Monday, Samuel had his first real therapy session at the same PT place I mentioned in the last post... and in addition to the walker, he also got to try a special bicycle!  It has straps to hold in his feet, foot and hand pedals, and helps with mapping the motion of walking.  George has ridden this bike before too, but when I saw Samuel on that bike today I almost cried.  Today, it was only feelings of pure joy!  Not only did he love it, he looked like such a bit boy.  Woo Hoo!

Again, I wish he had the smile to show his enthusiasm :)  Samuel loved this bike! 

In fact, when it was time to get off, he wouldn't.  Go Samuel!

I also want to pass along thanks to Debbie, who has been George's PT since mid November.  She is moving away at the end of the month, so today was George's last session with her.  He will still have PT, but will start with a new therapist next week.  We are sad to see her go!  But, we have big plans to reunite in the future, we're positive that George and her baby girl will hit it off  :)  Ha ha!

Since I'm on the subject, I also have two other therapy thanks to give... one is really old, and the other is new.  The first is to Hannah, who was George and Olivia's Speech Therapist from July '10 - February '11.  She was wonderful!  I think graduation from speech came closely after the pronunciations of "prone stander" and "pulmozyme" :) 

Photo from February :)

The second is very recent, to Monte, who was Samuel's home PT from July '10 - June '11.  In this time period Samuel has gone from stuck on his back, to crawling, and now to cruising.  YEA!

This photo also from February :)

Finally, a big kudos to my beautiful Olivia, who attends all therapies but doesn't get to play with the stuff :)  Poor kid.  Although, she does love her alone time with mommy, or daddy, or Rachel, in the waiting room!  Such a trooper!

Love/Hate, Part 2

First, I just need to say that I'm so thankful for Part 2's!  We are truckin' right along and the kiddos have gotten stronger every day... who knew things could be so good :)

The first Love/Hate post was regarding Samuel's special stroller... okay, fine, wheelchair.  Wow has it been wonderful for us!  Not only was it helpful for short trips, but it was the reason we could venture out of the hospital during all of Samuel's recent stays.  It's comfortable, durable, and holds all of his accessories, including pulse ox, feeding pump, and oxygen tank, among others.  I'm convinced going outside kept us sane during those stays!  Thank you Chair :)

Kind of a humorous side note, but I'm pretty sure Samuel got more "poor kid" looks for the eye patch than for the oxygen or the Chair!

This post is also about equipment that I am so excited about, but also kind of breaks my heart just a little bit.  Last Thursday Samuel tried out his first walker.  I've been a range of emotions, from "who knew they made walkers for 2-year olds?"  To, "seriously, hasn't he had enough, he really needs a walker?"  To, "wow, my boy has come so far I can't believe he's walking!"

Just to throw it out there, there is no need to tell me how far Samuel has come... I know :)  His life is a miracle, much less every single thing he is able to do!  I know he is incredible!  Nothing could take away from my feelings of incredible joy at all my baby is accomplishing.  But, it's still tough to swallow sometimes that your baby can't just get up and walk like other kids... it's going to take longer, again.

These feelings aren't for my pain - at least I don't think they are - but because I want something to be easy for Samuel.  Everything takes work, and strategies, and even equipment.  Yes, I'm thankful for all of those things!  But there's something about seeing your baby in a walker that makes your eyes well up because it just doesn't seem fair.  I know, pity party.  The good news is that the pity party doesn't last long at all because the joy of seeing Samuel walking FAR outweighs any of that!

After writing all this, I'm finding myself in the same place I did with the Chair... I hate that Samuel needs it, but I love that it's available to him and all that it will allow him to do! 

This original walker I'm mentioning was a quick trial at our initial evaluation for our new physical therapist.  Yes, NEW!  The reason this is exciting?  It's a clinic... like, not in the home... like, the docs feel he is healthy enough to try an out of home therapist!  Our other therapies will remain in-home, but for PT this is a new adventure for us.  Also, Samuel is doing so well with PT that it's time to get him somewhere that can offer him equipment... not only the walker, but also special bikes, a ball pit, a swing room, and so much more.  I can't believe he's ready for this - HOORAY!

He really did like it!  Wish he had a smile to show it :) 

Samuel was completely intrigued with the walker, the new location,

and all of the other amazingly cool therapy things all over the place.

Weekend at Home

This past one was our first weekend home with the new aortic valve... we haven't officially named her yet, we're leaning towards Anita (starts with an A and seems like she could kick some tail if necessary) or Clicka (self explanatory once you've heart DB's new mechanical heartbeat, and rhymes with Pippa).  All we know is that it's female... in our family that seems to be the healthiest way to go :)  Ha ha!  Not really funny, but kinda :)

Here's a picture of a general St. Jude's mechanical heart valve... pretty amazing!



Anyway, overall we had a good weekend!  First, Uncle Jay, Cousin Madison, and Linda all came to visit Wednesday - Saturday... not only was it great to see them, they were also a huge help at the house.  From helping with babies to washing dishes to doing yard work and making the weekly trip to the dump, it was just awesome to have them here.  Plus, their smiling faces are always welcome additions to our days :)

Then "aunt" Brooke came in town Friday - Sunday, and again, the helping continued!  And of course, so did the fun... I just love that girl.  And so do my children and my husband - I'm so lucky!  DB even suggested that Brooke, Kristen, and I all go grab a margarita one night, so after the kids went down our sitter, Laura, came to stay with DB just in case the kiddos needed anything while we went... it was really nice to be hangin' with the girls.

This weekend was also a tough one... I won't talk about it too much because it's not my news to share, and to be honest it still hurts a lot, but we attended the memorial service for our boss, the headmaster at our school.  Dr. Wall was the healthiest man you ever knew and, at the age of 59, very unexpectedly passed away due to complications from Leukemia.  It has shaken us.  The services were a wonderful testimony to his life, but it still seems surreal to say goodbye.  He is missed, a lot... he was a great leader and friend.

Of course, when Brooke comes in town, there are always lots of great photos to share!  The photos in the last post were just the beginning, below is a bit of that Sunday...

Happy Fathers Day, Daddy!

Unfortunately, no wabooshkie this Fathers Day...

but we still had fun :)

Pretty sure George had the upper hand the first go-around...

... but Olivia came back for more!

Neither of them look too terribly upset about the whole thing :)

Samuel, whatcha doin'...

... having a great time!

This kid loves to look at things from EVERY angle,

I just can't believe we finally caught some proof on film!

Notice the guilty look?  If you've been to our house lately,
you have definitely heard, "Samuel, not in your mouth!"  He knows!

(We do this because it helps Samuel learn to play with toys.  His first instinct is just to stick stuff in his mouth, but once you get him to take it out, he actually starts to play with the toy.  The more he has practiced, the better he has become at learning what his toys do!)

Dueling smiles...

No offense DB, but I think Olivia won :)

Daddy's little girl :)

George, just like Samuel, loves to throw the ball for the dogs.

Go Scout!  I think Belle already got a head start, sneaky little girl.

Things To Remember, Part 2

It's been about three months since my last "in general" post... plus, at this point there seems to be lots of little updates about lots of things, so this may be the easiest :)  Where to begin...

DB is doing really well!  It's been nearly two weeks since his surgery, and more than a week since we came home from the hospital.  Home is SO good!!!  I think the toughest part is that DB feels great mentally (he's almost off all of the hardcore pain meds and just on tylenol), but can't do much physically.  He has started going for short walks, is able to get in and out of chairs by himself, and is helping out where he can with the kiddos - they love reading books with daddy!  But it will be weeks before he can drive a car by himself, or even the lawnmower, and even longer before he can lift 10 pounds or more... I think he's going a little stir crazy having to sit so much and feeling tired, but he's able to be good because the pain is still pretty intense if he breaks the recovery rules.  DB sneezed for the first time today, which was unbelievably painful, but he also got the energy to ride in the car and do a few errands with me, Olivia, and George.

BB's summer schedule still includes working part-time, but summer also means it's preseason!  The school swim team I coach started preseason practices the last day of May and will be two days a week until the end of July when the regular season begins.  Once again my assistant coaches have already proven to be lifesavers, not only with general practices, but also by taking over on the days I could not attend last week.  I love coaching!  And I love the crew of swimmers and coaches I get to work with!

Olivia is a trip!  We call her our narrator... our play-by-play commentator... of everything.  Some favorites are the adjectives she uses for clothing, or should I say "outfits."  They are generally "too cute" or "so pretty," whether it's a dress, a boys shirt, or even a sock :)  Olivia also loves to wear ponytails and bows!  Of course, she also loves to keep track of what everyone is doing, frequently running to tell daddy or mommy about the actions of George, Samuel, and her favorites dolls.  Olivia loves to dance, loves to eat, loves to play soccer, and she loves to laugh!

George keeps us laughing!  That boy loves trucks, cars, and books... he could live on those three topics all day, every day.  George also loves to be tickled, and he laughs with this uncontrollable pure laugh that lights up the room!  He is an expert at puzzles, knows every book in our house by name, and has an incredible memory and recollection for details..  He loves to run through the house squealing with delight at the joy of running!  George is still in PT for a weak core and his left foot has started to turn in just a bit, although his custom-made orthotics seem to be helping a lot.

Olivia and George can also sing the words to most children's songs, know their ABC's, count to 10, and have at least five jokes up their sleeves.  They amaze us daily!  They recognize the letters G, O, S, M, and D everywhere, love to color, and like nothing more than to be outside swinging or playing in the water.  They're also learning to share and take turns, with only a few trips to time out along the way :)

Samuel is still impressing us more and more everyday, if it's possible!  He is not only pulling to stand with ease, but is now cruising... literally, anywhere there is a ledge, a wall, or a leg, that boy is standing and walking!  He can practically walk when you're holding just one of his hands.  Samuel wears leg braces, hinged AFO's, that help him with leg/hip/knee/ankle strength and positioning.  He is also signing more and more, including to make choices!  We started using picture cards to represent some of his favorite people, toys, and songs, and he is really getting it.  Even though it's not in language that you or I would typically use, he can very clearly tell you which song he wants to sing with a few sounds and hand gestures... and believe me, he will also tell you if you get it wrong :)  This is incredible!!!  Samuel spent so long not wanting anything or expressing himself... this "normal baby" this is so exciting for us, and for him!  Imagine figuring out you can ask for things... and then how to communicate them!

Samuel is still the happiest boy you've ever met :)  He loves to bounce on the couch, seesaw to Row Your Boat, swing, play with pine straw, play peek-a-boo, and of course love on Beelow and Lady.  Samuel still drinks water from his cup,  but has gone a little backward on the eating.  He was doing great, and then sometime mid-April (pretty sure it was the 16th) he just stopped being interested... we still work on it every day, and in the last few days he seems to be expressing a bit of interest again.  Fingers crossed - this is a huge mountain for him to climb!  Samuel still wears his eye patch and hour per day, but his vision is great... which he proves by his sprinting crawls to his favorite toys.

Wow, still feel like there's so much to say!  Our family changes daily, thankfully :)  At the same time, I wish I could freeze this time in our lives (except for DB - I want a speedy recovery for him!) because it is just so awesome.  I love my family!

Hard at Play! 

Of course there's Olivia in the front, but I love that Samuel is taking it all in, and of course George's hair is priceless :)

Hard at Work! 

I've mentioned it before, we take love our sidewalk chalk!

The dogs are right in the middle of all our outside play... sometimes literally EXACTLY in the middle :)

Welcome Home New Ticker!

DB's new aortic valve has officially moved into her new home!  YEA!  We got to come home yesterday afternoon... and it is AMAZING!!!!

Will add to this post later tonight, but wanted to share the good news :)

Going Home... But Not Today

DB continues to do well after his surgery!  Since I last wrote, he has settled into his non-ICU room quite nicely, and so have I.  In particular, I like that I can stay and don't have to leave him here alone at night.  We haven't had this much time together in ages!  Ha ha!

In addition, DB's pain is being managed nicely, all of his accessories are gone, and he is moving around a bit - YEA!  The pain is getting much better.  It still hurts, and will for a while, but he is on a good regimen that's keeping him comfortable. 

While he has to be attached to monitors until being discharged, all of his other lines are gone!  Last IV came out yesterday, as well as the chest drainage tube.  The IV was straight forward, but the chest tube was fascinating!  Well, fascinating for me :)  For DB it was a bit painful.  Another bonus about these lines being out, is the reduced chance of infection - this is huge! 

In addition, DB is moving around much better.  It's incredibly hard to get used to not using your arms for anything... for example it's like doing squats every time you stand up or sitting down.  Also, just moving is a bit difficult, but DB is working hard and increasing his laps... he claims it's the beginning of his training :)  Plus, once all the lines were out, we got to go sit outside and soak up some sunshine for about 30 minutes - loved it.

Only one set-back from our original/ideal plan... we can't go home today.  I mentioned DB has started taking coumadin, and the next step is for that coumadin to raise DB's INR to approximately 2.5.  That number in someone not taking blood thinners is around 1.  INR (International Normalized. Ratio) measures the time it takes for blood to clot and compares it to an average.  Coumadin is a blood thinner, so DB needs to find the right dose that will both thin his blood for the new mechanical valve (helping to avoid blood clots) but also keep it thick enough for the blood to clot if necessary (for example a cut or bruise).

At this point, there's a 50% chance we can come home tomorrow.  All I'm saying is the glass is half full!

Things on the home front are going well, from what I hear :)  I'm so thankful for that!  One of the hardest parts about staying at the hospital is missing the kiddos... actually, probably the hardest part.  Makes me teary.  Boo.  But again, they're happy and surrounded by people who care about them!  Plus, all the help we have allows me to stay with DB, and from what he says, I've been helpful here :)