Yesterday, Lillian had a 10:15 appt at the dentist to have a look and see if her thrush was gone after treatment. It was much better, but not completely gone. She indicated that we let the pediatrician know and see how he wanted to proceed. We buzzed out of there and headed to her chiropractic appt that was at 1030. Let me tell you how crazy I am...I kept thinking, man, another phone call to a nurse who will have to talk to him and then he will have to decide what to do and then maybe I'll hear back in a couple days.....it wasn't until much later that it struck me that HELLO, we are seeing her pediatrician at 1:30 pm for her 15 year well child appointmenr. A crazy person. Mercy. Anyway, we saw her pediatrician and he had them paint her mouth with a purple medicine..her teeth and mouth are still purple...LOL. It does make us giggle when we see it. It will fade in another day. We will revisit the thrush issue after she finishes her steroids. Did you know steroids can cause that? I didn't. Actually, it's the fact that steroids compromise your immune system, which allows other bacteria to grow. *sighs*
We will eventually get xrays of her contractured fingers, but in the summer as it is not emergent at this point. My concern was she has gained 11 pounds since December first. He told me to address it with the GI dr when we see him in february. He did say it could just be that the remicade is helping her to absorb more of her nutrition....but the gain didn't concern him because she's so tiny anyway...although it doesn't look like she's putting on any weight except in her gut. Her gut, by the way, is so incredibly bloated. Still. Her ladies' days have stopped some time ago, Like months and months, but he said due to the stress her body is under currently, he's not worried yet. He also pointed out, again, that she has a rare chromosome that noone else in the world has and it's impossible to know what to expect with her.
It didn't really seem like a bad day. BUT, as we got home, I felt drained. Weary. I felt agitated and couldn't even figure out why. I kept praying and started to make dinner, but I really just wanted to lash out at someone for something. You know what I mean? I was talking to God. Took a breath and focused on something else. Later, my grandma called and I've felt bad for not visiting her recently and I wanted to visit this past weekend, as I talked to her about it the tears flowed. I am weary, but I just have to keep going. Can't stop. Keep trusting the Lord and leaning in to him. Look to eternity.
"weary traveler, restless soul you were never meant to face this world alone. It'll all be worth it, so just hold on. Weary traveler you won't be weary long" song by Jordan St Cyr
Ps 20:4-5 May He grant your heart's desires and make all your plans succeed. May we shout for joy when we hear of your victory and raise a victory banner in the name of our God. May the Lord answer all your prayers.
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