TCK - SEVEN MONTHS

 

February 13, 2020 marks SEVEN MONTHS for our sweet boy!

Two months ago I said, "to be completely honest, this month has been a mix of a little rocky and a lot of wonderful."  The truth is when I said that before I could not have imagined the next curve ball to be thrown our way.  Since we tell it like it is around here... this month has pretty much been the same except we've found greater depths to both the lows and the peaks.  Day in and day out it seems like we're on a roller coaster.  Sometimes there are beautiful, exciting highs and other times we hit quite lows (both expected and unexpected).  But at the end of each of those days, regardless of what we have faced, we have Talon and he continues to bring the purest joy we've ever known into our lives.

This month has been a little funny in the growth department. Weight wise we aren't exactly where we'd like to be, but head circumference wise we're at the top of our game.  Maybe even a little over the top!  Talon is comfortably in 6-9 month clothes these days.  In fact, we've thrown on a few 6 month outfits for a few hours here and there just to make sure we see him in them.  Size 2 diapers are sill our go to and will continue to be during our current stall of packing on the ounces.  We're working hard on finding a happy medium in the growth department and are keeping our fingers crossed that solid foods are going to really help us out. 

Speaking of solid foods, we've been exploring lots of different flavors and Talon is a big fan!  It has been so exciting watching how much he is enjoying solid foods.  Not so exciting... watching his oral intake from the bottle plummet.  This will most definitely give us delay when it comes to being free of the NG tube (which is a huge bummer for us all).  When the day finally comes it will be because of solid foods which is still encouraging since this would be ideal long term.  We have been clearly reminded lately that a lot of what we face with Talon is a long term game.  Feeding free of tubes and having an immune system are things we know we'll still be waiting on for sometime.  Over and over again we are tell ourselves (and truly believe) that "the best things worth waiting for" anyways. 

Health wise, this month had a lot going on.  Notice anything new?  That's right... Talon has a helmet!  Due to finding a favorite side to sleep on pretty early on, that side began to appear flatter than the other and what person doesn't want their baby's head to be nice and round.  It was a process that began a few months back, but we are happy to have it and even happier how well Talon has adjusted to it.  Its busy working its magic meanwhile he looks pretty darn cute in it AND the blue really brings out his eyes.

Talon's head has been a big focus this month.  After it measuring a little large at his 6 month well visit with his pediatrician, we quickly found ourselves back at Children's for an ultrasound followed by an MRI a couple weeks later.  The referral for neurosurgery that was simply cosmetic months ago for the helmet situation turned into a true referral that scared the hell out of us.  We lived a couple of weeks on edge (even more on edge than our usual on edge). Thankfully, as in on our knees praising the Lord kind of thankful, everything appears to be a-okay.  We'll have another eye exam and a follow up MRI in a few months to make absolute sure, but we are resting much easier at our house after meeting with the neurosurgeon after the first MRI.  

The MRI wasn't easy on us.  First and foremost, the unknown and possibility of anything not being as it should was absolutely terrifying and weighed heavy for quite some time.  Second, it's hard anytime your child has to go under anesthesia, but when the last time was for a heart repair that came with so many unanswered questions until they "got in there" it complicates those feelings even more.  Third, tie all of that in along with Talon's immune situation and there is an extra level of worry that quite frankly is suffocating.

He handled every detail of it remarkably.  Handing him off sent this momma's heart into a bit of a panic, but it was put to ease the moment I saw him afterwards.  His MRI was scheduled at the very end of the day so it was close to 7 o'clock before we got on the road to head home.  Talon was incredible in recovery and was great the entire drive home.  His MRI was the day following his infusion so as you can imagine - it was a LONG couple of days.  Bouncing back always takes us a little bit to adjust, but he truly is an absolute champ with how wonderfully he handles everything.  Every. Single. Thing.  He's amazing!

He continues to receive a synagis vaccine once a month to help protect against RSV.  You'd think after all of the IVs and the "tougher" stuff he goes though this would be a breeze, but apparently the medicine really burns and needless to say, we are all counting down the months until he's finished with these.  All of the "extra" in our little reality is such a bummer, but it's so important for us to share that while it definitely sucks... we are SO incredibly grateful for all of it (synagis, infusions, medications). Anything we can do to help protect and keep Talon healthy is more than worth the short term aches and we know that he'd agree, too.

Enough of that.  Now, on to the fun things that are happening.  Talon is talking a ton.  He'll get going and not stop until he's told you EVERYTHING.  We love repeating him and keeping him going back and forth.  Early in the mornings are my favorite time to just listen.  I am convinced his sweet little voice sounds like heaven and I literally melt each and every time I hear it... even if it's 4 o'clock in the morning.  I'd rather listen than sleep.  Seriously, there is nothing sweeter.  Whether he is talking or laughing, it is the best thing ever.  

Talon is rolling over and so close to sitting up (he's had to work extra hard on this considering he was practically already sitting up and then we added a helmet to the mix making him a little more top heavy).  He loves reading books, bath time, looking in the mirror and dancing.  He is much more interested in Hopsen and often reaches out to try and pet her.  Oh, and he has recently been all about crossing his ankles which makes him look like a little man.  It is super cute to catch in action. 

We have hit a stride in sleeping recently and it's been a real game changer.  We've been fortunate that Talon has always been a pretty good sleeper, however we've kept both the midnight and 3 AM feeds around a lot longer than expected.  We finally kissed the midnight feed goodbye this month which means that for the first time in a really long time, we don't have to set multiple alarms throughout the middle of the night.  

Even though introducing Talon to solid foods meant that his oral intake from the bottle decreased, we've balanced that heartache with the excitement of him experiencing and enjoying new flavors. So far we've tried cereal, sweet potatoes, peas, carrots and bananas.  Bananas are the clear favorite (that and his cereal), but he has enjoyed it all.  Dave (aka Super Dad) is making all of Talon's food which has been such a gift.  He has taken great pride in it and we know exactly what's in the food which we like.

This month Dave and I got away for a few days to rest, relax and ultimately recharge.  This time was crucial for us and it allowed us to spend quality time together having fun!  This is so important for new parents to do and it was especially important in our case.  We quite literally had to make ourselves go, but we were thankful we did.  Our recharge fell at the perfect time to celebrate my 30th birthday (woah!) and come back completely refreshed for Talon.  It would not have been possible without Grandma and Grandaddy.  We could not be more thankful they allowed us this time together away knowing that Talon was in great hands. 

It is crazy to thank that we have had SEVEN MONTHS with the greatest blessing we've ever known.  Talon is incredible and inspires Dave and I daily.  In so many ways, it's nothing that we expected or prepared for but it's also more fulfilling and beautiful than we could have dreamed.  Our reality isn't easy, but it is also more special than I can begin to describe.  

I know without an ounce of doubt in my heart there is something so incredibly special about Talon.  There is reason for our journey and although we might never know why, we do know that it has changed us in more ways we can count.  We have grown - my gosh we have grown - both as individuals, as a couple and as parents.  We still have quite a road ahead, but we have also already overcome so much... together.  

We could not be more grateful for Talon.  These past SEVEN MONTHS have been a treasure.  Each month that goes by we get closer to being able to share the world with Talon and close this especially difficult chapter.  We love you more than ever, precious boy and look forward to spending forever together!

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