We have been living our miracle for twelve days now. Yes R. (age 16) is still sighted and hearing!
She can laugh at family jokes again. She can talk on a telephone. She can bake AND fully clean up after herself. We are so thankful!
We had hoped the faints would fully resolve with the return of scenes. Sadly, we had another episode at school this week, dictating another ambulance ride and ER trip.
The unique thing about this event was that she had enough warning to try to get herself safely to the floor before loosing responsiveness. She was aware that her ears stopped hearing normally and that her vision went dark, so she froze and started getting down to the ground.
The school police officer watched her go down and was excited that she only had the very last little bit of that process as an involuntary fall, so she didn’t hit the floor hard, as she normally has, and there was no head trauma this time. (She has had three concussions since early September.)
Thankfully, when R regained awareness ten minutes later, she was sighted and could hear again. We went to ER anyway, because of a prior agreement with her neurologist. Additional testing told us yet one more thing we now know that we are not dealing with.
We have now exhausted every local testing possibility anyone can think of. We know many, many things that are not our issues. These newest symptom developments have provided enough clues that new out-of-state specialists are now joining our investigation.
Since regaining her scenes, R has had a chronic migraine (for nearly two weeks – ouch!) so my husband will be picking up new medication from the pharmacy today, for us to try tonight at bedtime.
We also got new glasses last weekend and learned that while she has enough sight to function now, and her eyesight can even be improved with corrective lenses, she is still only correctable to the “legally blind” threshold of 20/200. She is also now “color-deficient” (color blind) in half of the color spectrum.
We had already started suspecting much of this, as she needed to be very close to large print, in order to read. And we had been having several unusual color-related conversations leading up to her eye exam.
R. thinks mustard yellow is a beautiful soft shade of lemon yellow. She thought she was “mis-remembering” what a lot of different colors looked like when she kept getting two shirts confused. When she could not find a large green letter on a highly-contrasting peach background, her full color-spectrum was tested, twice, and found lacking on several levels.
Next week I will start making arrangements for current auditory testing. R certainly hears now, engages with the world around her again, but it seems she may yet be missing some of the finer details. I stood at the foot of her bed and tried to whisper to her this morning, and she had me repeat myself at normal volume before she understood.
I’m trying to rejoice in all the blessings, while we keep digging and fighting for answers. I’ve spent the day reading articles from a mom who writes about rising kids with chronic illness at Not the Former Things, and my heart resounds with so much she shares. I could list several links here, but I think Living In Fear Of The Next Bad Thing probably is the best single article I can link to.
There have been so many Sunday night church services where we’ve gotten called out to the youth group room for our daughter’s medical events. Between church, school, home, and life in general, we’ve documented 43 collapses since Sept. 8 (and may have failed to record a few more!), so I sat in church last Sunday night with my hands clenched, heart pounding, and legs ready to spring into action if there were another crisis.
It took my husband sitting down to pray with me for several minutes before I could calm my mind enough to offer God a sacrifice of praise in the midst of the fear-storm. In His faithfulness, God replaced my panic with a heart ready to enter into worship and receive the message he had for me during the sermon.
Is R all better? No.
However, there is wild improvement, in vision, in hearing, in potential medical direction, in frequency of faints – only three in the past four weeks, since implementing the Mayo POTS faint-reduction protocol. (We have seen up to four episodes with 24 hours, and daily, or an least several per week, were our normal frequency before a month ago.)
Now we are asking God for great wisdom, to direct our steps toward the next doctors who can help us figure out the root cause of her autonomic dysfunction and sensory issues. Actually, our first request is simply for full restoration, if that is His plan. Thank you for your continuing prayers!
J., our 19-year-old, who have been ill (different symptoms), up and down, for nearly two years now, with this round keeping him home-bound and primarily bed-ridden since late November, seems to be slightly improving again now. He is still quite ill and local doctors have also run out of ideas for him.
The current plan is that I will take R. back to an Arizona hospital later this month. J.’s grandparents will accompany him to Maryland for an intensive week of medical testing shortly thereafter. And Rick will stay home to keep our youngest in school, as he keeps working his job that God is using to provide our health insurance benefits.
When R. and I get home from Arizona, I’ll head out to California to attend and teach two workshops at the Mount Hermon Christian Writer’s Conference. God closed the door so that I didn’t go last year. I am so eager to be back with my Jesus-loving word nerd friends again this year, as we celebrate our conference Jubilee! Won’t you consider joining us? (If you go, please let me know and register as part of the Reno LifeWriter group, as we are getting close to earning a group discount.)