September 7, 2013

UPDATE (9/7/13)

I must begin by sharing how liberating it is to only post weekly. Though I did appreciate keeping everyone in the loop every day, life has been a little crazy to maintain that pace.

A friend text me earlier this week asking how I was doing. He caught me in a fairly emotional state because I believe my response was something like, “hanging in there”. I then went on to explain that I’m trying to juggle keeping qualified for Medicaid for Beckett’s surgery next year, trying to be a great dad to an amazing son who has a huge amount of meds, doctor appointments, therapies, etc., trying to be the best support I can to my well deserved wife (yet I fail often), trying to keep up with bills and general house maintenance, trying to keep up with my graduate school studies at an exemplary level (and not even coming close to that), trying to maintain consistent progress on my thesis, my obligations/commitment with my job on campus that I feel I am not achieving at a level I’m satisfied with, teaching a class of freshman this fall (so taking time to prepare for class, grade papers, etc., etc.), and somewhere in there I haven’t even mentioned my spiritual life, and the list goes on-and-on-and-on-and-on….

At one point this week where it was evident to Leah that I was not doing very well, she lovingly smacked me back in shape and said that I’m putting way too much pressure on myself and to just relax and do the best I can. I’ve never really known what I’ve thought of the phrase “just do the best you can”, but that’s really all I can do. Anyways…enough about me, lets move on to Beckett.

Beckett’s first parade on Monday went well! We kept him inside the house until the firetrucks passed by because of the loud sirens…but once we brought him outside he was all wide-eyed, just soaking it all in. He wasn’t necessarily smiling, but I think it was just so much “information-overload” that he just had to sit there and watch.

I must also clarify a picture I posted earlier this week of Beckett with no cannula on. Though we appreciate the “praise” of him no longer needing the cannula, you may remember that I mentioned in my last post on September 1st that I took Beckett’s cannula off for nearly an hour and was planning on posting a picture as soon as I could. Well, that was the picture…and currently, Beckett still has a nasal cannula in his nose. I do still believe that we are getting close to removing it sometime “soon”…but not quite yet.

Beckett has been sleeping quite well this past week. He still wakes up here-n-there throughout the night, but really nothing too inconsistent of a normal baby. But obviously Beckett is no normal baby…..he’s an amazingly “special” baby! He’s still on a lot of meds in which we administer upwards to 10 times a day and often numerous meds each time. To measure them all out and get organized for the week is quite the feat…but we are figuring it out slowly-but-surely.

We had a follow-up Cardiology appoint this week in which I had to sit out on because of my classes, but thankfully my mother was able to go with Leah and help her out. Speaking of, my mother has been here all week and has been a huge help to both Leah and I….and definitely Beckett. Unfortunately she has to go back home tomorrow, but thankfully Leah’s family is only a few miles away and have been a huge help as well. Anyways, back to the Cardiology appointment, I was made aware that they did a follow-up Echo on his heart, a 12-lead EKG, and another X-Ray. Results? Everything still looks “good”! Praise the Lord!! We “can’t lie”, there have been some moments this past week (and since we’ve been home) that we’ve been nervous of his condition, but we have to constantly find the sweet-spot between “bad things happening” and merely him possibly just teething, his methadone wean, and/or normal baby “bad-days”. To find, locate and remain in that “place” is challenging but necessary to pursue, discover and learn.

Well, this post is beginning to get long (or, it already is long), so I should wrap up. Sooo, please continue to pray for Beckett’s complete healing, Leah’s tenacity while working and juggling life at home, my “work-load”, and God’s consistent provision for our “needs”. Furthermore, thank you ALL so much for the consistent meals! They have been delicious and such a blessing. Sooo, if this is your niche, and you like to cook…..well, we like to eat! 😉
Here’s the link again:
Thank You!!

Until next time, thank you for all the consistent support, we still feel as if so many of you are still engaged, even though the posting has decreased.


3 thoughts on “September 7, 2013

  1. Bernadette says:

    Im still here praying. Loving every wonderful positive word you post! Angel wings around all of you!

  2. child of God says:

    Thanks for the update. Glad to hear things are moving along smoothly and Beckett is sleeping well. Continuing to pray for you dear boy. 🙂

  3. marylou says:

    Dear Leah and Jonny and Beckett, Thank you for keeping us posted on life in your worlds. It is a busy, bustling, happy, hard, praising and prayer filled time. The promises of God are always moment by moment energy “pills”. I agree with Leah . . . just do your best. Your BEST is maybe letting go of “perfect” . . . Hard to do. We are cheering you on!!!
    Blessings. marylou and Gene too

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