May 13, 2020 marks TEN MONTHS for our sweet angel baby! 

TEN MONTHS.  My goodness!  It feels like such a milestone.  For starters, TEN MONTHS makes it official that Talon has been growing from the outside longer than the inside.  A part of that is really exciting (and amazing) and another part is a tiny bit sad.  It is hard to believe he's been ours for TEN MONTHS already.  That he's been here.  That he's been with us, not just part of us.  It's been a heck of a month for Talon.  It's been a heck of a month for our family.  And we're just gonna go ahead and throw it out there as probably altogether our favorite month we've ever had.  It sure was a big one, but in the best kind of way.

This month has been full of a handful of such bright moments for our family.  Additionally, we also celebrated Mother's Day and carried on with a few Derby traditions even though the race won't run until September.  Both Mom and Dad have continued working from home to ensure everyone stays healthy and the weather lately has all of us enjoying our daily walks around the block.

Weight gain is something we work on constantly, and this month has especially had us on our toes.  Talon is in 6-9 month/9 month clothing and fitting very comfortably in size 3 diapers.  Our suspicions that he was getting taller were confirmed at our Cincinnati appointments when we learned he had grown an inch in the past month.  We'll be on the smaller end of the growth chart (have you seen Mom and Dad!?), so we've learned to pump the breaks a little, keep calm and know the weight trends will come eventually.

Feeding.  Notice anything (or two things) different about this month's picture?  For TEN MONTHS Talon has been tube fed.  It's been less and less lately, but for TEN MONTHS we have lived with a feeding tube.  It's hard to put into words what comes along with a feeding tube - mentally, emotionally, physically.  Now that Talon is officially tube free, we are also free of a lot of other crap too.  Saying sayonara to Talon's NG tube might have made the biggest difference to our daily lives since we brought him home from the hospital.

Over the past month Talon has worked so incredibly hard to kick that thing to the curb and we held our breath every time we sat down to eat hoping and praying it would be successful.  For the past month we have been in communication with Talon's dietitians (yes, he has TWO - and we love them both!) daily, sometimes more than once.  It has been the biggest team effort led by the cutest little boy.  And we did it.  We've done it.  We are finally free.  As you can imagine, this milestone deserved one heck of a celebration.

We didn't have many appointments, but a couple of pretty big ones.  For starters, we had our last check-up (cue driving up and measuring Talon's head out the window) to receive the all clear on removing the helmet.  Although we were pumped, we left the helmet on a couple more weeks to try and time it out a little closer with the tube since it has been a saving grace on keeping that little thing from being pulled out as much.

We also had our last visit to the Day Hospital at Children's for awhile.  All the praise hands.  Let us be clear that we love our friends there, but won't mind one bit not having to see them nearly as much.  We got big news that Talon has been cleared, approved, plus all of the above and more to receive infusions from home.  This means no more monthly trips to Cincinnati, no more IVs once a month, no more stays in the Day Hospital for hours of infusions.  No more of that.  And we are SUPER pumped about it!

We'll begin administering Talon's infusions from home once a week.  However, we did the first round at Children's following our usual to ensure everything went smoothly and be prepared in case there were any weird reactions.  After a successful first dose, we're home free meaning we actually get to do these from the comfort of home from now on.  We are so excited about this for Talon!

Along with that visit at Children's came another big appointment with a follow-up MRI.  Times are strange right now.  Strange enough when you're at home, but add in spending time at the hospital and having to stay in another city overnight and well... things get even stranger.  Following protocol, Talon actually got tested for COVID-19 while we were at Children's.  Gosh, he is tough.  So, so tough.  As expected, results were negative.  We had the MRI one day followed by the infusion the next.  With all of the craziness, we got back on the road after the infusion to make it back home for our follow-up with the neurosurgeon virtually.  Before the virus, we literally had a week long of appointments so we were thrilled to pair down where we could.
A few notes about the hotel stay in Cincinnati... We never saw a single person (other than the front desk worker) at the hotel.  We parked in the valet lane (literally right outside the front door).  We grabbed take out from a favorite local restaurant.  Had the most silent night of sleep in a hotel ever (even with a TEN MONTH old).  Had to call the number posted on the door to be let in.  Didn't have to wait for the elevator the entire stay.  Seriously, it was strange.  It was also kind of enjoyable though and most importantly we felt very safe.

The neurosurgeon (who we also love) had really good news.  After his recommendation for one final MRI minus all the bells and whistles in about 9 months we are hopeful to put the book end on this chapter and move on.  Needless to say, we could not be feeling more grateful, thankful and blessed for this news.  We didn't have many, but our appointments were big.  Talon handled them with such poise, strength and grace.  Time and time again, we are truly amazed by him.  I'll never know how we got so lucky to call him ours.

This month was filled with all the rolling over, tummy time, reaching, sitting and playing.  The highlight of play time this month was probably getting a jumper in the mail.  Talon loves to jump and after initially being a little learly of the contraption, he's began to really love it like we thought he would.  He still really enjoys his activity center and walker, but the jumper adds another source of independent entertainment for him.

Talon is more and more interested in Hopsen lately.  He's always loved her, but now he constantly reaches for her and watches her every move.  Poor girl still isn't Talon's biggest fan (at least when he's pulling her hair), but she also is the first to his rescue any time a peep comes from his crib.  He is not bothered the slightest by her quick neck snap to stare him down or the muffled growl under her breath when she's annoyed.  It really is the sweetest little friendship. 

With all of the focus on eating, Talon has been dictating his schedule a little more and we are enjoying following his cues.  He is also continuing to nap well and sleeping better at night.  Eliminating the night feed through his tube has really helped him sleep better without waking.  His animal puzzle is a still clear favorite at play time and anything and everything goes in his mouth these days.

The past month it feels like Talon has literally grown up by the day.  Is has been so fun for us watching his new skills and hearing his new sounds.  Is has been amazing to see the changes over the past few weeks.  Although we FaceTime frequently with Grandparents, we are really excited for them to see Talon in person again with all of the big strides he's made recently.  Like we can't wait.  It will be a pretty special day.

TEN MONTHS has felt like a lifetime when it comes to a lot of the "things" that have been part of this journey.  Yet, knowing we're only two months away from Talon being here a whole year gives me a nervous ache in my stomach.  Time with him has gone by so quickly.  Way too quickly.  And as much as I've always wanted to be here and get to this point, I'm also not quite ready. 

 We ditched the helmet and tube just two days shy of TEN MONTHS.  Knowing how both of those things hindered Talon in different ways, we can only imagine the progress we'll see now that they're gone.  This was such a month of milestones and celebrations that will lead us to so much "normal" in the month ahead we can hardly stand it.  Talon has worked so incredibly hard to get here, to reach this point, and my goodness it's all feeling like we're living in the grandest dream.  In countless ways, this month has been such a gift. 

These past TEN MONTHS have changed us and taught us more about life than we can truly express.  We can't begin to imagine this world without you, Talon.  Happy TEN MONTHS to the sweetest boy, toughest kid, and true prince that you are.  We can't wait to spend forever with you, Talon.  We love you big.  From the moon to the stars and every single planet in between.  You are our world.  Cheers to you, baby boy!

1 comment

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