Heart of Beckett

UPDATE (3/16/15)

Hey everyone, I know it’s been a long time….a really long time. So, for those of you we’ve heard have been longing for an update, we do apologize. I assure you, however, that our delay has been filled with a lot of love and good times together as a family. With that being said, let’s dive in:

You may have seen in any videos or picture we’ve posted some of the things I am writing about, but hopefully those were helpful. First, Beckett is walking! Well, even better than that…he’s beginning to run now. It’s amazing! He did get fitted for some ankle braces (due to some weak ankles from, most likely, him learning how to walk a little “late in the game”…but that’s ok). He’s getting so strong and confident, it’s amazing to watch him make huge strides (literally) these past few months. If you haven’t seen him in person for a while, he seems like a whole new boy from just a few months ago. He’s doing so good that our physical therapist isn’t certain she needs to meet with him as often anymore. That’s scary, but exciting!

Speaking of therapies…he still does get physical therapy, occupational therapy, developmental therapy, and now…..drum-roll…..speech therapy!! If you’ve been following Beckett’s story for a while, that is something we’ve been praying for for a long time. We finally got one, and she comes to our house weekly. She helps Beckett with his resistance towards eating. This has been a huge struggle of ours ever since we brought Beckett home (1.5 years ago now…crazy, huh?!), but we are finally starting to see some major improvements. In fact, nearly 2 months ago….HE STARTED TO EAT! That is HUGE! When we started this journey, if even a spoon of baby food touched his lips, he’d throw up. He’s slowly getting more and more confident, and we are finally finding some food (and methods) that work! Yay!!

To rewind a little…we had a busy Fall. We went to the Indy Zoo, Leah took Beckett to a Pumpkin Patch, Beckett got dressed up like an Oompa Loompa for Halloween (he was so cute…reference the pic I posted), and we had a fantastic Thanksgiving and Christmas! If we missed ya, I’m so sorry. But thankfully, we were able to get Beckett “out” a lot this Fall. Not only did we do everything I just mentioned, but we had the opportunity to speak in my home church in Archbold over Thanksgiving, we spoke here in Upland as well for a couple services (for the entire service…that was emotionally exhausting), and we’re even able to make it back up to Michigan where we use to live a few years ago (it was GREAT to see you all again!). It was really neat to share Beckett with so many people who have been supporting us, encouraging us, and praying for us all these years! It has brought me to tears many times when I really think about it.

Ok, ok…and now for the nitty-gritty:

We had a Cardiology follow-up appointment a little while back…..and….I think the words used was “Beckett looks amazing!” …..music to our ears! Actually, some of the Cardiologists (who had since left Riley Hospital, and are now back) dropped their jaw at how good he looks to them. I kind of asked, sheepishly, “Do you remember Beckett?” and I believe the response was a respectful yet blunt “how could you forget him?!” I got the unfortunate feeling that Beckett is (or was) that “case” that the numerous Cardiologists who worked with him would reference when they’d think “it could be worse.” However, I think I’m okay with that. I mean, it’s so rewarding, and brings such a huge smile to both Leah and my face when we are reminded (or simply remember and acknowledge) how far our little boy has come. When reading through our original entries from the blog last year, it was a rude-awakening how dark and heavy those many months were. But goodness…..Glory to God, right?! Great things He has done!

Sooo…..for our future. We are still working through a lot of meds. Beckett is currently dependent on over 130 syringes of meds each week. Leah does a wonderful job keeping up on all that…and Thursday night in our house is “Med Night.” Leah’s mom still comes over nearly every Thursday and helps us organize and fill each med for the next 7 days…it’s amazing! We have so many good friends and family who still check in with us from time-to-time…and that is greatly appreciated. All of it can get exhausting, but it isn’t too hard to push through and think “I’d do all of this every day for a million years if it meant I got to keep my son home from the hospital.” Sort of on that note, we were able to adjust one of Beckett’s meds about a month ago from 2:00am to midnight. Soooo, that means no longer needing to stay up until then (or waking up in the middle of the night anymore) to give Beckett that med. It’s amazing how getting those extra two hours of uninterrupted sleep can be (that was getting old and quite tiresome after a while). Oh yeah…back to the future (no pun intended), our Cardiologist loved how Beckett was looking, which certainly prompted the question, “Sooo…..when is his next surgery?” Beckett has only done 2 of the necessary 3 open heart surgeries to fully address his condition. I guess the plan (as of right now) is to do another Cardiac Cath (those can be scary) this Spring to asses just how ready he might be. After that, I guess his next (and final) surgery COULD be this year (2015)….but it could also be sometime next next, or even the year after that. We clearly want to do it when it’ll be best for him, but we are anxious to get it done and over with. The longer we wait, the older he’ll be…the more he’ll remember, and somehow the harder I feel it’ll be to give him back to our surgeon (as much as we do trust him). So, if you would, please just pray for continual guidance there while we figure out that next step.

So, as for now…we’re just trying to enjoy the moment. We have been grateful for the opportunities to share Beckett’s story and just do life. I do apologize again for the lack of communication, but I hope it was/is somewhat understandable. Going forward, we will continue to try to post pictures and videos from time-to-time….but it may be a little while until we get to another update again. However, feel free to message us or simply comment on this post…we still read them all. AND, if you find yourself around Upland….look us up! We’d love to meet you and share our little bundle of joy with you as well.

Until next time, continue to just take it one day at a time!

#GoBeckett

#ODAAT