Thursday, October 3, 2013

Time Flies

When did October get here!!??  And has it really been a month since our last real update!?  WOW...well, let us catch you up on our life...

If we could use only one word to describe the last few weeks, it would be BUSY!  When Landry came home August 13th, we tried to find our new routine.  Challenging, to say the least, but we quickly adjusted to life with an infant.  But just as we grew accustomed to our routine, we were faced with doctor's appointments and therapy sessions, which made it difficult to stick with our daily regimented feeding times, nap times, tummy times, etc.

As you can imagine, Landry has an extensive list of doctors/therapists to keep up with.  We try to strategically schedule our appointments so that we can kill two birds with one stone, so to speak.  Unfortunately, this has led to a few frustrating moments spent in waiting rooms, exam rooms, and x-ray labs, as we try to appease our daughter while the appointment is running behind.  Ultimately, we do our best to be patient (no pun intended) as our doctors/therapists do their best to spend time with each of their patients.

Altogether, over the last several weeks, Landry has had regular appointments with her cardiologist, pulmonologist (2 times), immunologist, general surgeon (3 times for her g-tube), pediatrician (3 times), developmental pediatrician (2 times), and has regular therapy sessions with Occupational therapist (2 times/week), physical therapist (2 times/week), and speech therapist (3 times/week).  Whew!!!  Thank you Lord for Kacee!  She has done an outstanding job of staying organized and on top of it all.  She keeps 3-ring binders for all all the paperwork and documentation, which helps us know exactly what's going on and how Landry is progressing.

Just to give you an idea of a "typical" day (which we don't really have "typical" days), a Tuesday might look like this...

5:30am - feeding
7:00am - physical therapy
8:00am - speech therapy
8:30am - feeding
10:00am - respiratory/breathing treatment
11:30am - feeding
2:30pm - feeding
5:30pm - feeding
6:30pm - respiratory/breathing treatment
7:00pm - bath time followed by g-tube care
7:45pm - bedtime
8:30pm - feeding


Somewhere in there, we squeeze in nap time, playing, tummy time, while Kacee diligently pumps for milk at scheduled times throughout the day.

Overall, Landry is doing really well!  Our doctors are very thorough and happy with her progress.  We feel extremely blessed to have good reports to share!  Our little bug is gaining weight!  In fact, she was actually gaining too much weight at one point, so we were advised to adjust her feeds.  Currently, she is weighing in at 10lbs 15oz.  That's almost twice her birth weight!  Amen!

Quick update on Kacee's life...

After much thought and prayer, we have decided that Kacee will be staying home with Landry and will not be returning to work.  It was a difficult decision because Kacee loves being a counselor at school, and knows that she will miss the people she works with, BUT we feel strongly that this is where she needs to be...at home with Landry.  We are so grateful Landry Kate is where she is today and Kacee feels called to stay home at this stage of Landry's life.  She has embraced motherhood and I can't imagine our family without her.  She attends every doctor's appointment, watches and learns at each therapy session, and has truly committed her life to being Landry's caretaker.  She is fully involved in ALL that Landry has going on.  There have been a few tearful moments as she reflects on the personal growth she's experienced while working in elementary schools, and realizing that her time at Tuscany Heights has come to and end.  But God's will is quite poetic...that as one chapter of Kacee's life comes to an end, another one begins.  

As always, we are so thankful to have all of you supporting us with prayer!  It means so much that you are following our bug's progress.  God is good and we feel so loved by those whom He has brought into our lives.  Thank you.

Things to pray about:

That Landry will continue to progress.  That she will stay healthy throughout the next few months, especially during RSV and Flu season.  Pray that her lungs will clear up.  She still has junk in there, which is why she stays on respiratory treatments twice a day.  Praise that we've weaned her down to 1/8 of a Liter on her supplemental oxygen.  Pray that we will soon wean her off completely.  Lastly, pray for her swallowing reflexes.  Her feedings still come thru a g-tube, so it's important that we maintain her oral reflexes.

We know that many of you are eager to get your hands on the bug.  With time, you will one day get to hold her and love on her.  For now, your love is best received by prayer.  Once Fall and Winter pass by, we hope she is strong enough and healthy enough to receive hugs and kisses from all of you!

Thank you for understanding.  We love you all!


Kacee and Kyle (& Landry)
















2 comments:

  1. Kacee, I just noticed no one had commented here yet; so I thought I would break my usual silence to tell you and Kyle and Landry that you remain in my thoughts and prayers. It was so very good to see you at Margaret's the other day. Praise the Lord for all of the continuing progress and thank you for the beautiful pictures. My love to all of you, Joe Rives

    ReplyDelete
  2. Was thinking about you today and wondering how your sweet baby was doing so here I am! It was nice to see you at school, even if it was only for a moment. We sure do miss you but know you're where you need to be. Love seeing the pictures of beautiful Landry, look forward to meeting her in person some day. You may be gone Kacee but are certainly not forgotten ! Keeping you in my prayers!

    ReplyDelete