Thursday, July 28, 2016

Levi update

People who don't see Levi every week are constantly reminding me how "great" he looks. I agree- even with that mint fudge on his face! It's easy to forget how far he's come though, until I look back at this blog and see how quickly he's changed. As much as people tend to hate forced changed, I think humans are remarkable creatures of adaptability. As quickly as I adjusted to feeding Levi through a tube, I just as quickly adjusted to not using it at all! Yes, he went 10 days without using that G tube once! But similar to those old testament humans who were given bread from heaven and water from rocks, we quickly forget God's goodness the second something isn't ideal and start complaining about our circumstances.
In three weeks, Levi lost 9 ounces and is back down to 16 pounds 14 ounces. Thus, before we get a serious scolding and backtrack from our GI doc, the nutritionist wants to double his formula intake. We were syringing (because he can't drink from a bottle and we need an exact measurement) his night-feed formula into his mouth the last 10 days, which was a lot of extra work in feeding, but worth it to avoid the tube. However, 60ml of formula before and after each meal is a bit much for Levi to handle by mouth, so we are back on the tube. However, the great news is that he's holding it all down, (for the last 24 hours), so we don't have to struggle with hooking him up at night. While, this is a setback, I'm realizing it's really just a tiny setback. His entire life has been two steps forward and one back, so I'm getting much better at quickly dispensing of my personal pity party, and choosing to focus on the constant miracle Levi Joe is to us. He could be so much worse, and sitting in multiple doctors offices each week is always proof of that.
Levi is making huge strides with development too! He's understanding way more than people realize at his small stature and babbling his own language and preferences with whiny toddler ease. He is pulling up and trying to cruise a bit, but his week core and right side still inhibit him. It's seems obvious to me that Levi would lose a little weight because of how active he is. Moreover, instead of having control over his muscles like a normal 17-month old, as Levi's therapists describe, Levi uses practically every muscle in his body to make small movements because he doesn't have the centralized control and strength he needs. Instead of crawling or scooting a few steps to get to what he wants, he'll lunge his entire body forward in a desperate attempt to claim his prize. Luckily he's really tough and doesn't seem to bruise or cry easily. :)
We also had a recent visit with the orthopaedic doctor. Levi's legs have been the least of our worries and the strongest part of his body. I did ask about potential future walking issues, and the doc said that 20 percent of kids with club feet end up rolling their feet inward when walking. She said that they'd have to watch him walk independently for at least a year to see whether this was an true problem, and if he was part of that percentage, then they'd do another surgery to correct it. Prayers for some normal walking in the near future!
All is all, little Levi remains a daily source of our joy. His belly laughs are contagious, and I'm so grateful for his slow and steady progress!

Thank you for continuing to pray. Oh..... and I forgot the other fabulous news- baby boy three (don't worry baby you will never be forgotten, except maybe at a theme park ;) ) had a full anatomy scan a few weeks ago and is wonderfully and anatomically normal! Such an unexpected praise! We are utterly blessed Smiths.

Learning about "Life" during our pink eye weeks. I love that Silas just wants to set it up and drive his cars on the board. Boys are great.

We had a great day in Dahlonega visiting an old mine, panning for gold, and eating fudge!

Nothing better than family memories.


~CC

1 comment:

  1. What formula are you using for him? I usually give my children purely organic formula from Hipp (https://myorganicformula.com/collections/hipp-organic-formula - this is the one) and they seem to like it. We haven't had any problem with reflux. Or do you have to use some kind of special formula?

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