This was a week that our family had looked forward to for quite some time. Lauren and I traveled to an intense feeding clinic in the hopes that she would soon be weaned from her g-tube feedings. She has made amazing progress over the past few months and now eats a wide variety of foods. Unfortunately, she enjoys eating foods a whole lot more than she enjoys drinking anything.
After the first few meals, it became apparent that Lauren was still going to need g-tube feeds after we left. I was disappointed to say the least. I had such high hopes for this program.
The bottom line is hidden somewhere on page three of her discharge paperwork: "not ready from a developmental standpoint to take in all of her necessary fluid requirements." Lauren's learning to take bigger drinks, and she has a new cup that will encourage her as she learns. At the same time, she'll continue to work on improving her upper body strength and developing the breath support that will make drinking easier.
I guess I'm okay with the way this week turned out. I can be patient for a while longer. Perhaps waiting will be a bit easier now that I understand how difficult it is for Lauren to "just drink her milk." Maybe the next time I remind her to take a few more sips, I'll be a bit more patient.
Last year when Lauren and I were at CHoP, I often sang the line from Fireproof, "I will serve you while I"m waiting. I will worship while I'm waiting on You, Lord." This year, I have a new song, and I'm still singing. "All of my life, in every season, You are still God. I have a reason to sing. I have a reason to worship."
Hugs, Cristi! I remember when Taylor was a baby before her reflux was diagnosed. She would scream and spit up and was miserable. I definitely had lots of moments of impatience, but once we were on the road to a diagnosis, and I realized her medical reasons for being so miserable, I was much more patient with her. I really believe it's easier to be patient once you understand the issue form a logical standpoint. But, I agree, I thought for sure you had already learned the lesson of patience...I guess God wants you to become a polished example of patience. ;) Hugs!
ReplyDeleteOh, Cristi! How frustrating. It has to be nice to know what is up though.
ReplyDeleteI just got here from the blog walk. I appreciate you're warning to get tissues when looking at your first post. God has blessed you with a great family.
ReplyDeleteWell that kinda stinks. More waiting and seeing. It can be such a let down and it is hard to look around to see what God is doing during the wait. But never be in doubt, He is working in this place. And you know, more than most people, that down the road you'll see how He worked, how He prepared you, how His way is once again perfect. Perhaps after the move and the resettling, Lauren's progress in this area will pick up. I'll be thinking about y'all as you move. God Bless
ReplyDeleteCristi, As I sit here and ponder what was happening a year ago, I think of Steve's sermon this morning about our view of God. Sometime when you get settled in maybe you can listen to it on our podcast. Here's a quote, "It's dangerous when a person begins to look at God through the glasses (lens) of life. We must look at life through the glasses (lens) of God!" I love you and am praying for the wait.
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