Category Archives: Jonny

August 13, 2018

UPDATE (8/13/18)

And just like that, Beckett started Kindergarten. I’m writing this post because of that, but also because we’ve been meaning to update you all about something for weeks now.

Other than Beckett’s last procedure he had this summer (the Cath), his final big step was/is removing something from him he has had since he was about 3 months old. Since Beckett missed the critical stage of learning how to eat, he needed to rely on food that would simply pump straight into his stomach. This was one of the many machines he had to carry around (probably the most predominant one). If you recall Beckett playing in public with a tiny little black backpack on, that was his g-tube pump. I remember very clearly being told in the hospital that getting to the point where he no longer needs that will take a long time and a lot of patience (and it sure has).

Well, a few weeks ago we received the “green light” to take it out….ourselves. We were told that it could close up within a few days, and, to be honest it began to look like it was. Unfortunately we are battling a little bit of consistent leakage. So, at some point we may have to take him in so they can close it completely. However, this post is supposed to be good news. Soooo, “It’s out!!!” That’s a big deal! His therapist (we drove to see in Fort Wayne weekly for years) did a fantastic job with him and certainly became a part of our family. Thank you, K!

With all that said, we are hoping and praying that it closes soon and that he does a great job “catching up” a little in Kindergarten this year. He’s a bright and curious boy, and we think he has another great teacher to help take him along his personal journey of learning.

As always, thanks for the consistent prayer and support. We still feel all the love.

#GoBeckett

#ODAAT

June 21, 2018

UPDATE (6/21/18)

Whelp, it’s done. I’m sitting here next to him right now and though he’s finally awake, he is a little loopy.

Surprise, they decided not to close the fenestration. However, after “getting in there” they discovered that in closing the fenestration Beckett’s heart function (/cardiac output) decreased up to 60%. Furthermore, they did find a few collaterals that they decided to coil. Blocking these collaterals did help increase his overall oxygen saturation levels by a few points (we’ll take what we can get).

Sooooo…..unfortunately the closing of this fenestration may still happen in the future, but not anytime soon. We still feel as if this was a huge milestone and are very pleased to have it behind us. Oh, also, they may even discharge us as early as today.

Thanks again for all the prayer and support!

#GoBeckett

#ODAAT

June 20, 2018

UPDATE (6/20/18)

It’s time….time to close the chapter (in a sense) to this long journey. Tomorrow (6/21/18), Beckett has his last (we hope and anticipate) procedure. This past December we wrote a post (sorry it’s been so long again) explaining how well Beckett is doing. However, we also explained that Beckett is still satting low. His low sats are due to a fenestration that hasn’t naturally closed after his last open heart surgery (Fall ‘16). This is something our Cardiologist has kept a close eye on. With that said, it’s now time to close the chapter.

Tomorrow morning at 11:30am Beckett will have another cardiac-cath at Riley Children’s Hospital. He’s had many of these, but this one is about as close to a “book-end” as it gets on Beckett’s LONG journey to correct his heart condition (HLHS). We are anticipating this to go very smoothly, but it’s hard not to think about things going wrong during the cath. Beckett doesn’t really understand what’s happening tomorrow other than if you’d ask him he’d say, “We are going to the doctors to fix my heart.” (it’s quite endearing) We are being told to plan on spending the night with him, but are hoping to be discharged to go home the following day (Friday).

So, may we now say, “Thank you!” Thank you for the hundreds, perhaps thousands who have followed this journey since December 28, 2012. It sure was rough at the beginning and has been the definition of a marathon since, but you all have been so incredibly considerate and encouraging. We are so grateful. Our journey with God throughout all this has been strengthening and edifying. It is safe to say we aren’t the same people, spouses, family or friends we were five years ago. Our faith has been stretched. Our marriage has been challenged. Our family has grown. We are so grateful for this journey, and are equally excited to put it in our rear view mirror as a memory of what was. We have scars (literal and figuratively) to remind us of the past, but they are now a reminder, a story rather, of faithfulness, tears, miracles, sleeplessness, joy and laughter of an incredible little boy named Beckett Jude Rupp. If you haven’t had the chance to meet him yet, he’s quite the joy. He has such a vibrant imagination, he witty, he’s loving, and occasionally a stinker! 😉

So I’ll end with Luke 1:46-49:

“…My soul glorifies the Lord

and my spirit rejoices in God my Savior,

for he has been mindful

of the humble state of his servant.

From now on all generations will call me blessed,

for the Mighty One has done great things for me—

holy is his name.”

One Day At A Time. We’ll keep you all posted on how tomorrow goes. And again, thank you (those who are reading these still), and thank you to all those who started this journey with us. We are almost done.

#GoBeckett

#ODAAT

September 27, 2017

Today was Beckett’s first last day of soccer. It’s been a challenge but an honor to “coach” his team. No Limits.(photo cred: Leah Rupp) 

August 28, 2017

UPDATE (8/28/17)
A few days ago (on the 26th), we hit our 4 year anniversary of when we finally got home from the hospital with Beckett “for good” after 8(ish) long months. For us personally, that is a date worth celebrating.
My, my…how we’ve come a long way. Not only are we celebrating a notable anniversary, we also have news for you. Since just a few months into Beckett’s life he has had a g-tube. This is a little “button” on his tummy that looks like a valve on an inflatable toy. This g-tube has allowed us to give Beckett both his tube feedings and his medicine. Since January 2017, Beckett’s doctor has been lessening the amount of feedings he gets each day and as of last Monday, Beckett is finally off all his tube feedings! This is HUGE! He now has to provide his entire caloric intake on his own without the help of his tube feedings. Though it has only been a few days, I am proud to say that he has been doing great! Not to get too graphic, but, when Beckett first started with his therapist (who is part of the family now), he would literally puke if you simply touched pudding to his lips. Now, years later along with hundreds of hours of therapy….he is eating on his own! To be frank, this was a very challenging part of our journey. He still has to prove he can gain weight on his own before they officially remove the button, in addition to learning how to take his meds orally. You see, I distinctly remember the doctors telling me that this would be one of our greatest struggles when we go home. And I can remember thinking (while not certain if I had another day with my son), “I long for those kind of struggles.” And though I still hold to that perspective (because those 8 months in the hospital were the darkest days of our lives), these past few years have not been easy. We have taken 2 steps forward and 1 step back in the progress of eating that this post seemed forever way. Yet, here we are…..potentially only a few months away from removing one of the last steps to this journey. It is hard to believe.
So, if you’ve been following us long….and even if you are just now joining the journey with us, we are at a very VERY significant milestone.
Stay tuned, but feel free to join us as we celebrate this hopeful journey of life and miraculous healing.
One day at a time…
#GoBeckett

#ODAAT

August 27, 2017

The Rupp household is not going to let this sport die with the next generation…one practice swing at a time. 🏌

May 14, 2017

Happy Mothers Day to this amazing mother. You make these boys feel so loved and safe. We’re so thankful for you!