We had a great day in St. Louis today. Can I say again how much we love St. Louis Children’s Hospital? The doctors are fantastic, the facility is great, and the coordinated team approach has been super.
We started our morning with the ophthalmologist, Dr. Hoekel. He did a bunch of testing and gave us some great news! In the past three months, Havyn’s vision has gotten much better and so has her alignment. Previously she had 20/40 vision in her right eye and it often didn’t align (esotropia or strabismus). That’s the eye with the tumor on the optic nerve. We’ve been patching the other eye 2-4 hours per day and it’s been working! Dr. Hoekel almost seemed surprised by the results. She now has 20/25 vision in that eye and while the esotropia is still present it is much improved. He’s so pleased that he said she can take a patch vacation for the next three months! After a bit of discussion on that, we decided we may just taper back a bit, but either way this is fantastic news!
After that visit we met with Dr. Marshall, an endocrinologist. Not much to report here except that she doesn’t seem concerned. Havyn had some growth hormone markers that were elevated in a recent test. The concern is that she could have pituitary issues, but that doesn’t seem to be the case. We basically got a baseline today and will visit again in 6 months.
Tomorrow is our final doctor visit for this trip. We’ll see Dr. Luhmann, a pediatric orthopedic surgeon. One of his specialties is NF-1 related scoliosis. As I mentioned yesterday, this is the appointment that has us the most worried. As we’ve been juggling everything, so much attention has gone to her tumors and the chemo she’s receiving. (Justifiably!) The scoliosis has been something that, for me anyway, has been kind of back-burner. I haven’t spent a lot of time thinking about it, but it’s obvious when you look at her sweet little frame that there’s a lot going on with her spine.
After a bit of time spent at a big blue and yellow Swedish store, we ventured back to HavenHouse for a nap (WOOHOO!), a little play time, and dinner. After dinner we got the girls in the shower and then ventured out to look at some Christmas lights. Thanks to Dan Emerald for his amazing train display. If it wasn’t so cold we would have spent a bit more time gawking.
On the drive back they fell asleep in the van while Transiberian Orchestra was playing on the radio. While I’m in the front seat air drumming and rocking out to the best Christmas music ever, they’re growing bored of my old man music and falling asleep. They’ll learn to appreciate the finer things in due time.
Please join us in praying:
- Praise God for safe travels, fun times, and good news.
- Pray for a great visit tomorrow with Dr. Luhmann. We’d love to hear some more good news, and we’d like clarity on what our next steps should be.
- Pray for a safe return visit to Louisville.
- As Havyn starts back to chemo next week, pray that her body would keep holding up and that they chemo would keep working.
- Pray that we’d have our eyes open to the people around us. We’d like to be used by God to be an encouragement and to spread hope.
Thanks so much to everyone for their love and support. A special thanks to Aunt Teresa for hanging with Henry and Arlington. We couldn’t do this without you.