Heart of Beckett

Hey Beckett followers, please pray for Leah and her family as she has just been made aware that her uncle had a stroke and suddenly passed away last night. Clearly this has been a challenging year for all of us, and certainly them in particular. Uncle John was truly a great man with a very caring and giving heart. We will miss you!

UPDATE (10/6/13)

Again, sorry for the delay in posts. I wish we could do it more often, but it can be challenging to prioritize and carve out the time to do it. However, your care and support have certainly earned and warranted it. But I may have to be concise.

First…….and honestly, Beckett really is doing great!! As I seem to qualify that statement often with, “but we still have a ways to go”, the distance we’ve come thus far is truly astounding to me.

We’ve been trying to get him out more, but it’s always a struggle. While I’ve been in school and work, Leah’s been able to take him out in his stroller, which is always a good time. Beckett just stares and stares, especially when he’s looking at something or someone new. The more “normal” stuff we can do, the better. We even took Beckett out shopping at Target the other day.

A few prayer requests and concerns:
Beckett’s J-Tube has been quite sensitive for him the past few days. The simplest thing seems to set him off in a complete “meltdown”. We did have an appointment this past week with GI about it, but are still waiting to hear back on how they want to proceed. They did say that everything looks “ok” (other than how sensitive Beckett is to his J-Tube being touched), but want to put their heads together with our Cardiologist on some upcoming tweaks (possibly exchanging the J-Tube to a GJ-Tube, discontinuing Beckett’s continuous feeding, etc.). We aren’t overly concerned, and their overall assessment was encouraging, we just don’t like the pain Beckett seems to be dealing with concerning it. We just don’t want something bad to happen.

Also, Beckett’s physical therapy has yet to start. Apparently there was a hang up in some paperwork…..soooo, we’re still waiting, just trying to do as much “therapy” on our own. Please pray that this picks up soon and that Beckett responds well to it.
Thank you!!

On a really exciting note, we are less than a month away from Beckett being completely off of his Methadone (if Beckett remains on target with our wean schedule…as he has been)!! Amazing, huh?! It’s been a long road, but to only be a month away from being done with that horrible (yet frustratingly necessarily) drug, is amazing!

Lastly, I apologize (again), for not posting very many pictures of Beckett, but I will soon. I’m promising to post soon because I was recently made aware that the Gerber Baby photo contest has officially begun. As I was skimming through the rules, I noticed that one of the requirements was to have a photo less than 30 days old. So even though we’ve already voted ourselves on some photos a few months ago, and we have a lot of really good photos to choose from, it appears I need to snap a few new ones. When I get the chance to do that, I will…and I’ll be sure to upload them so you can all see (and maybe even “vote”).

Friends and family continue to be such a blessing. Everything from helping us with meals, cleaning our house, helping with laundry, or even automobile repairs. We are so blessed. Hang in there with us, each of your support is greatly appreciated!!

“Take Them A Meal”
http://www.takethemameal.com/meals.php?t=ENMX4112

#GoBeckett
#ODAAT

UPDATE (9/26/13)

First off, sorry for the delay. It’s been a crazy week for me, but I’ve been wanting to get you guys an update since Monday night. Sooo…thank you for your patience.

I’ll begin with the Cardiology appointment. I wasn’t planning on doing this (because of the principle of “better safe than sorry”), but we drove all the way to Indy still OFF oxygen. Beckett has been satting great (well, “great” for him) since last weekend. So we took him into the office with no nasal cannula, and he looked so good. Our Cardiologist was very pleased, and reaffirmed our suspicions that Beckett IS truly doing quite well. He also let us remove another cable/cord we’ve had ever since we came home (the 2nd time). Beckett had a really annoying heart monitor that would monitor any abnormal heart rhythms. And when it detected something abnormal, it would set off a horrible and eerie sound…but oh well, we knew it was only for his care and protection. Anyways, the Cardiologist reviewed the readings from the few times it went off this past month, and it didn’t show anything too concerning. Sooo, bye bye lil black box. We did set up another appointment with him in about a month, but will be heading back down to to Indy again next week for a GI appointment to check out his J-Tube and possibly switch it back to a G-Tube.

Anyways, Beckett is truly doing sooo well! We actually did a mini “Beckett Tour” and took Beckett around to all the different departments within Riley where we’ve been in addition to taking him back up to Peyton Manning and St. V’s NICU. It was something I actually “dreamed” about doing someday. Just taking Beckett around to everyone who cared for him, show him off, and thank them all for their professional care. It was a long and exhausting day, but it was well worth it.

We are trying to take Beckett out more. There is a fine line to how often we should, but all-in-all…it is a good thing for him to do. It just always opens “ourselves” up to potential “issues” and bad things to happen. But we can’t (and shouldn’t) live in a bubble. Slowly but surely, Beckett will continue to experience more of the world outside of a hospital and our house.

Unfortunately, therapy has not started yet. We are still waiting for that to get going and are trying to be patient. So in the meantime, we try to do what we can on our own. But I’m confident that professional help will certainly take his progress to a whole new level.

Lastly, did you see my news about our friends at Riley and their son Caleb?! I think I only posted it on Facebook, but our friends we met at Riley have a son who has hypoplastic right heart syndrome (Beckett has hypoplastic left heart syndrome…..they are very similar, and very different). Anyways, similar to our journey, they began up at the St. V’s Peyton Manning PICU. They actually got through the second surgery with Caleb (just like we are at right now with Beckett) until things turned south pretty quickly and after a pretty severe cardiac arrest, they found themselves down at Riley on the heart transplant list. They have been waiting for a heart since last November (and I thought we had been in the hospital for a long time), and just found out a few days ago that THEY GOT A HEART! The surgery is already done, and they are doing well. It is soooo awesome! And we are so excited for them. Yet I appreciate the perspective to keep the family in your thoughts and prayers who lost their baby, but donated the heart. Such a bitter/sweet moment.

Well, that’s about it. We appreciate the continual pray for continual healing of Beckett’s little body. Leah and I are often working off of very little sleep, so that affects a lot of different things (attitude, concentration, temper, fortitude, etc etc). We really are doing quite well, but the continual support is always welcomed.

Oh, and if you are still interested in helping us out with a meal, I’ll provide the link below. I think we’ve nearly officially ran out of “volunteers”, but we new this day may come eventually. No pressure, just want to REwelcome the offer and provide the link.

“Take Them a Meal”
http://www.takethemameal.com/meals.php?t=ENMX4112

You guys are still so amazing and soo encouraging. We still get hundreds of hits on our website daily, and we only post weekly (at best). We feel very encouraged and very loved. We will try to do better in posting pictures (or even videos), but if you live close, feel free to stop by. Beckett is so cute, and as we continue to lose the cables and regain a “wireless baby”, we will definitely commit to taking him “out” more often.

“To God be the Glory,
Great things He has done!”

#GoBeckett
#ODAAT

UPDATE (9/23/13)

Either Leah or I will post again soon. Mainly because we will know a lot more after our Cardiology appointment tomorrow (technically today 9/23/13).

However, I delightfully inform you that for the majority of the past 48 hours, Beckett has been on NO oxygen support and maintaining his saturations at an acceptable level. When I “push” him like this, it makes Leah nervous (and rightfully so), but we gotta keep “moving”! He’s doing so well, though we have a ways to go. Please pray for a GREAT meeting with our Cardiologist, and continual progress.

As I mentioned, we will post another update soon!

#GoBeckett
#ODAAT

Don’t get sick in our house….the repercussions are severe (…and uncomfortable).
#SemiQuarantined

UPDATE (9/15/13)

Beckett is still doing well. We are still HOME! Though we are beginning to find some sort of routine, but unfortunately that routine consist of minimum/restless sleep, a rigid schedule, and many appointments. Leah has been a champ keeping it all organized while I try to help as often as I can within my obligations. It’s been extremely exhausting, but we are so thankful to have Beckett finally home (….and STAYING home!)!

It appears we are finally getting close to starting some therapy for Beckett. Though I wish this could have begun the very next day we were home, we were forewarned that it may take quite a few weeks to get “everything” going. So, as I was saying, it appears it may be actually starting as early as next week! Yay! We are excited to continue to see Beckett progress, especially in “normal” things like “tummy time”, crawling, eating, maybe even talking some (…eventually).

We took Beckett out on his first non-medical related field trip…and he did great (well, for the most past). We took Beckett to Anderson University where he witnessed his first collegiate volleyball game. Go Aunt Krissy! He did so well. There were loud buzzers, horns, etc…and Beckett just sat there and watched. In fact, he fell asleep about 1/2 hour into it. Unfortunately, at the end of the game is when he decided to have a mini-meltdown, which, coincidently, was when a bunch of people wanted to come see the infamous Beckett. He greeted them all with a scream…but at least it was memorable, right? 😉 Anyways, that was pretty neat, and he slept really well that night in particular. So, going forward, we hope to start taking him out more, especially before the weather gets “nasty”.

Please continue to pray for Beckett’s continual healing in addition to Leah and my fortitude. These past few weeks have been very tiring for the both of us, and for me in particular…I’m officially “under-the-weather”. I believe it’s just a “common cold”, but we were specifically made aware to be cautious of things like a “common cold”, as it could be RSV which would be very dangerous for Beckett to catch. Just please pray for a hedge of protection around our family, as we have not crossed the finish line yet. Leah and I desire (and need) more patience and more strength for Beckett and for one another. We do not want to leave any room for a wedge to subtly form between us or our family. Though I do not believe we are anywhere close to that happening, I believe a preemptive strike on this inevitable threat would be wise.

Thank you all for your continual care and support. We still have people texting us often, bringing us meals, mowing my yard, praying often, etc. etc. Your support and encouragement is so greatly appreciated! “Thank You” is simply not enough.

#GoBeckett
#ODAAT