September 26, 2013

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

5 thoughts on “September 26, 2013

  1. child of God says:

    Glad to hear Beckett is doing so well! Thank You Father!! Thank you for the update.

    Blessings

  2. Sharon-Crigger-Stokan says:

    Way to go Beckett!! Praising and thanking our Heavenly Father for the great things HE is doing in Beckett’s life. So happy that ‘attachments’ are dropping away little by little. Such progress and huge praises. Continuing to pray for you all, for a miracle healing for Beckett as well as for strength, endurance and alertness for you and Leah with your jobs, schooling and ‘life’. Thanks so much for the update in the midst of your busy-ness…it so helps us to know how to better lift up prayers on your behalf. Keep hanging in there…and we’ll keep praying – multiple times daily! 😉

  3. Sharon Grandstaff says:

    So glad that Beckett is doing so well and you guys can get into a fairly normal life. It is amazing looking back at how far he has come. He is an example of answered prayer. God bless you all.

  4. Della Hayes says:

    Just a quick note to let you know I removed myself from bringing you a meal on Thursday. We have fevers in the house and I don’t want to bring any type of sickness your way. Once we are better, I will reschedule.

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