Summer in the City! Oxygen Free

Cutest boy cannula-free

Since Benton's strep throat cleared up we have been filling our weekends with fun in the city.  We have had many playdates with friends, walks through the neighborhood, housewarming parties, visits to wineries, and even a day trip to Monticello.  All of these excursions have been a breath of normalcy....and it's all been even easier thanks to the fact that Benton has come off oxygen during the day!  You heard me right...Benton is OFF oxygen during the day!!!!!!!!!!!!!!!!!

First moments going on a walk without oxygen and eating cannula free

Little cutie unplugged from his oxygen

Over the last few months Benton's oxygen levels have slowly and steadily decreased down to 1/32 of a liter which is the last stop on his regulator.  Starting around the end of June, Benton began to come off oxygen for a couple of hours at a time working his way slowly to 4 hours then 6 hours then 8 hours then finally all day.  Being able to finally free Benton from his oxygen leash was such an unbelievable feeling.  We had gotten so used to being tethered to one floor and within a certain diameter of his oxygen tank I think we were in shock at the ease of life when Benton came off oxygen.  No longer did we have to chase him around the couch because his oxygen cord would get stuck on the edge.  No longer did we have to say "Sorry Benton you can't go all the way up the stairs because your oxygen leash won't let you".  In that moment, Benton became free!

Walking around Stanton Park

Slowly but surely life has become easier since Benton came off oxygen.  We no longer have to drag a big heavy oxygen tank around town -- that thing weighed almost 10 lbs.  We have more freedom to do everyday things like walk our son around the house to do errands and laundry.  We can take Benton to the park and not have to follow 3 feet behind him while he crawls in the grass.  Every little normal thing feels special.

Furthermore, we finally got to take off Benton's cannula and see his beautiful face tape and cannula free for the first time ever.  It was shocking see his face cannula free -- Benton looked so different.  So grown up and such a big, big boy.  Every moment I look at my son's face and see him without his cannula seems like it will be etched in my brain forever.  These are the moments I treasure.  These are the miracles we prayed so fervently for.

Happy Fourth of July!

Now to tell you about our fun adventures in the city.  We recently discovered a park nearby that actually has swings!  Benton is obsessed with the swings and he took his very first ride on Fourth of July weekend.  Ever since we had a playdate in June with our friends from the NICU we have started taking Benton to the playground.  At first it was out of our comfort zone since he is still only crawling, but without the oxygen it all seems more doable.  He really likes the teeter-totter and the bouncy horse but is afraid of the slide.

Testing out the swings and the bouncy horse

First time on the swings!

In addition, we have had playdates with several of our out-of-town friends and their kids.  It is always so special to see your child play with your friend's child.  It just seems like you are witnessing the circle of life....watching your kids play just like you did years ago with their mommas or pappas.

Hanging with out-of-town friends

Matching outfits -Twinsies!

 As I mentioned in a previous post, our trip to Michigan really emphasized our family's need for a new car.  We decided the time had come.  After looking at several options we settled on a Toyota Highlander and it has changed our life.  Not only can we easily fit all of Benton's stuff in the car, but cars have come a long way since my little 2004 jetta.  Once we bought our new car we had to take it for a spin and we checked out the wineries in Virginia and headed out for a day trip to Monticello with the family.  Getting out of town has felt incredibly freeing and the month of July seems to be all about freedom.  Freedom to travel, freedom to roam, and freedom from the oxygen cannula!

Enjoying Monticello's grounds

Posing in front of Monticello 

Three generations at Monticello

This summer has been amazing in terms of Benton's physical and medical accomplishments.  Not only has he made great strides on his oxygen requirements and now only requires oxygen at night, but Benton has slowly but surely increased his confidence in cruising and is now all over the house.  These past two months have been filled with new medical updates on Benton.  At the early part of June, Benton had his long-awaited swallow study and he PASSED!!!!!!  He is now formally cleared for all liquids and solids which means we can work on getting him to drink from a sippy cup.  Benton also had his first audiology appointment to check out his hearing.  It turns out that Benton had a lot of pressure in his ears which was actually lessening his hearing.  As the audiologists were explaining this pressure they said it could be from an illness and at the time we thought Benton was perfectly healthy, but low and behold he actually was getting strep throat at the time.  So hopefully the pressure in his ears was just a passing issue and when we go to his next hearing check-up all is well.

Family in front of our new car!

This summer we also had appointments with GI and Nephrology.  Our first appointment was with GI, we talked to her about how difficult it had become to feed Benton.  Every single meal was a chore and he would require lots of singing, games and many toys in order to distract him to eat.  To make matters worse, we had continued to feed him throughout his strep throat and his oral aversion was back with vengeance.  Our GI doctor recommended backing off on the oral feeds from 5 feeds a day to 2 feeds a day and take our cues from Benton.  No more distractions, no more toys.  After a solid week of little to no eating and some weight loss, Benton turned a corner and has started willingly eating by mouth again.  We still have a long way to go until we are tube-free but we are on the right path.

Our nephrology appointment was for Benton to get his annual renal ultrasound.  The ultrasound showed good growth in the kidneys and everything appears to be in good working order.  The echogenicity that is present on his kidneys did not go away and they believe it is scar tissue.  So as long as Benton's kidneys continue to grow well over the next few years we should be doing well.

Exploring in his new tricycle!

Loving his new tricycle!!!!!

Benton also was measured for orthotics to help him start walking.  These shoe-like inserts are to help stabilize his ankles which were pronating inward and having him cruise extremely bow-legged.  Just the first day we put the orthotics on we saw a drastic difference.  They truly help stabilize him and give him better balance.  Benton is still not taking steps on his own but he is now cruising the walls, pulling up to open doors, climbing onto the couch and going up the stairs like a speed demon.  We hope that these orthotics are the kickstart he needs to finally be successful in walking.

Fun at a Virginia Winery - our first day trip!

Rocking out his orthotics at the winery

My final update is that Benton was re-evaluated by Early Intervention to see if he is still eligible for services.  Silly me, I thought Benton might not qualify, but not only does he qualify but he is overly qualified for special services.  Benton was diagnosed as significantly delayed in his speech and adaptive skills and slightly delayed in his gross and fine motor skills.  The only category in which he was deemed "normal" was in social skills.  I'm not going to lie, hearing this diagnosis was hard.  I know my son Benton better than anyone, yet when all you are presented with is your son everything is relative.  You don't realize he is behind the curve on things.  As long as you see forward progress that is all that matters.  With Benton we see tons of forward progress, yet when an evaluator comes in your home and tells you your kid is delayed it shocks you even though you know in your heart he's behind....but you don't like hearing someone else say it so bluntly.

Hanging with Auntie and Uncle at the pool

Fun at the pool with Auntie Breton and Uncle Chris

At the end of the day, Benton is unbelievably amazing.  He is thriving when doctors said he wouldn't make it.  We know that Benton is thriving and making incredible strides each and every day and that is what we are going to focus on.  Benton is off oxygen during the day and that is a massive accomplishment for our little nugget.  So what that he is taking longer to walk then doctors would like.  We love our sonn unconditionally and believe he will grow up to be a strong, healthy, successful boy and someday become a strong, successful young man and that's what matters.  We thank God and Jesus every day for the miracles they have bestowed upon our son and thank our lucky stars that we get to be parents to such an amazing kid.

Trying to open the door and reading with papa!

So much cuteness

Ride'em Paya