The Fragile Files weekly link up is a chance to connect with other blogging families with medically fragile kiddos. Our weeks are busy, tiring, stressful, and yet full of JOY. God's little fragile children He entrusted us with are precious gifts. Daily chances to see God at work!
I feel like I spent more time dialing the hospital and doctors offices than anything else this week. Last week the Nephrologist ordered 3 special X-rays to determine Zachary's bone age and health. These are scans she orders once a child turns 5. Next week we start to be seen by an Endocrinologist who will also want and follow these bone scans as bone health is a big factor in Lowe Syndrome. These special X-rays can only be done at the hospital in Denver so we have to plan our day around appointments like this. I'm trying desperately to get the scans done before we meet the new doctor. (Once again will be a trip to Denver) We know these are X-rays he'd order anyway, we'd get them done after his appointment, and then we'd wait on the results. My goal is to have the results before we even show up! (Something I've learned after hundreds of doctor appointments with Zachary - trying to know what they want in advance and getting it done.)
Well - it's not proving to be simple this time. I've made numerous phone calls and they're still running into issues. All the while I'm looking at the time crunch, factoring in the holiday weekend travels, and realizing we're running out of time.
You fragile kiddo parents know this all too well, I'm sure!
Our other frustration this week revolved around URINE. Yep. Such is life with Lowe Syndrome - ALWAYS needing urine samples. Getting a urine collection bag to stick on a little guy, hoping it doesn't fall off and spill in the diaper, or that he poops while he's wearing it?! Yep - sorry if that's TMI - but that's my week. As I sit here typing this we're on our last urine bag in the house and I'm praying we finally get a good sample! We need to take it and head over to get blood work done this morning.
There's always something!
We've had our frustrations this week but so many joyful moments as well. My new favorite therapy session is every Thursday afternoon. Zachary's speech appointment used to make me leave in tears. Between his lack of cooperation to all the screaming, I dreaded that hour of the week. Now he joins right in. He tries to verbalize in that 1 hour session more than I hear at home all week. I see him interact with Kari, I see his attention span and patience growing, I see him trying to use her communication device, and I smile. Big smiles. I sit in that little therapy room thanking the Lord for progress.
Zachary's new favorite cartoon is Blue's Clues, specifically the old movie Blues Big Musical. All the music and dancing - he loves it! In the middle of the movie there is a segment with large piano keys and they discuss the music's tempo and select a melody. EVERY time that part come on, Zachary immediately stands at the piano and starts playing. There's so much going on in that little head of his. Maybe I'll have another little pianist!
There's frustrations and joys each and every week. We battle eating daily. It's easy to worry he'll never walk, what life will be like for him as he gets older, or that his kidneys will one day fail. But I end each and every day hooking my sweet sleeping boy up to his feeding pump and I smile deep down inside. I'm so grateful for it all. The high moments and the low moments. Because I wouldn't trade my boy for anything. He's such a gift.
- Link up any post related to your medically fragile child or a post that would be a resources to a family with medically fragile or chronically ill children. We will choose a post from the previous week to feature each week.
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