Sept 14, 2021. Little mysteries

We saw her nephrologist (kidney doctor). Doc said this last number of hers was typical improvement for kidney function, and that her previous abrupt “normal kidney” numbers were odd and that she wasn’t sure what to make of it. So… yay? 🤔

She is starting cholesterol medication, a tiny daily tablet. So with she’s gonna have to swallow this, and overcome her fear of swallowing pills. FINALLY. I approve! Ha ha ha! 😜

There’s something on her lip and tongue. A bump on her lip. A sore on her tongue. At first we thought it was a canker sore, but then it grew like a chunky lump and wouldn’t go away no matter how many salt rinses or Peroxyl rinses. So we saw an infectious disease physician to check it out, since she’s immunosuppressed. Current diagnosis is both are idiopathic canker sores. Which still means… we don’t know how to deal with them. We are waiting on further test result and watching them evolve.

Now she gets migraines. I figured my kids might inherit some of my migraines, but dang it, it looks like she’s starting to be as sensitive as me. The same perfumed odors, flavors, and dehydration are triggering her migraines. When her friends asked what a migraine was, she said, “It’s a headache with feeling like you want to throw up and light hurts your eyes and everything hurts.” Nice concise description! She’s recognizing her aura as “feeling foggy.”

She’s now allergic to all bandage adhesives. Everything breaks out into a rash. Fabric bandaids are worse than plastic bandaids. For a while, those Nexcare clear waterproof bandages and Tegaderm worked, buuuut not anymore. So we now have gauze and wrap on standby if needed. We are always getting creative with solutions!

Soon she’ll see an ophthalmologist. It is just a regular checkup to monitor for changes such as protein deposits in her eyes. Currently she has near perfect vision. I call her “Laser Eyes” because of her uncanny ability to see tiny details, and I joke how she takes after Daddy. When I drop a bead, I summon “Laser Eyes” to assist me. I guess protein deposits in eyes will come with later kidney damage as protein builds up in the blood. So this is not a current concern with her kidney improvement, but it is something we have to monitor with regular checkups.

Her nephrologist is retiring. 😭 To our doctor, we extend our deepest gratitude for her excellent care for going above and beyond. We already have the next pediatric nephrologist in mind. I’m always nervous getting a new physician, but it’s a whole new level when you’re getting a physician for a rare disease that you know they likely never encountered a previous patient with it. And you’re entrusting your child’s life.

Except not really. Because everything is in God’s hands, and I keep forgetting that. And remembering it all over again.

Brother just had his allergy test and his soy allergy reduced, but doesn’t negate the allergy. Doc says it’s too soon for him to outgrow soy allergy. Could possibly be a cross sensitivity with oak/birch. or maybe he is outgrowing the allergy. So… yay? Am I supposed to still carry epi-pen? Benadryl? What can he eat? It’s a whole new cautious journey of what he maybe can tolerate. Or does this change nothing? No, it does change because his reaction on the test improve significantly since 4 years ago. Whatever. I’ll take it as some form of progress and a yay. YAY! 😂👍

Charmin, our dog, is still happy with her life. She can eat with the help of pain medication, but is starting to vomit daily. She getting scared to sleep alone, as she is starting to do the long journey upstairs, so I’ve started sleeping on the couch to keep her company and safe downstairs. We are giving her lots of TLC (tender loving care). I look for wisdom in knowing how to make her most comfortable and knowing when to make the call for euthanasia. This was a good article on this topic. https://graceparkanimalhospital.com/lupins-life-saying-goodbye/

Lots of little mysteries. I don’t know. God knows. I know God knows. And I know God loves us. So I’m gonna try to let go of my next panic attack(s) and say the Serenity Prayer.

God grant me the serenity to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.