Vision Therapy Update

Eliza has been doing vision therapy for about 8 months now! She started going weekly for an hour each week from January through mid-March. We took about a 3-month break during COVID, then started going every other week for 30 minutes each time.

Just a little background refresher: Eliza was diagnosed with an optic glioma (tumor on the nerve going to her right eye) in September, 2018. She did a year of weekly chemo which shrunk the tumor but left her nearly blind in her right eye. She does have some vision in that eye, however, and with vision therapy we hoped to maintain/strengthen the vision in that eye and help her with balance and coordination.

I am 100% convinced that vision therapy has helped Eliza. We saw immediate improvements in her balance, ability to color inside lines, and significant improvement in being comfortable with wearing a patch. She doesn’t have enough functional vision to be able to be patched for 3-4 hours a day because she can’t see more than a few inches in front of her, but she is able to do vision therapy exercises for 15-20 minutes each day. We’ve also noticed that doing these exercises helps keep her right eye tracking with her left eye rather than turning in towards her nose and going cross-eyed.

Vision therapy is SO fascinating! Her vision therapist was amazing, and spent a lot of time teaching both me and Eliza different red/green activities (where her left eye can see only one color and her right eye can only see one color) to force both eyes to work together. She also did balance activities, peripheral vision activities, and patched activities.

I am so much more confident in what Eliza specifically can and cannot see with her right eye because of vision therapy. Her routine 3-month eye exams at the ophthalmologist are so quick, and usually happen when Eliza is already exhausted from the drive to Seattle and multiple other appointments. Last time her eye exam was an hour after waking up from anesthesia for her MRI…you can bet that eye exam wasn’t accurate! Her ophthalmologist isn’t really supportive of vision therapy, but I’m going with my mama gut on this one and pursuing this alternative therapy to give Eliza the maximum use of her vision that she can get!

Example of a red/green activity: Eliza wears these glasses
Eliza wears the glasses and puts the tokens of the corresponding color on the squares
One eye can see the RED and the green is cancelled out by the green shade
The other eye can only see the GREEN and the red is cancelled out by the red shade!

Eliza has started getting a little bit sneaky with her red/green activities by scrunching her nose up so she can see with her left eye for a millisecond to complete the activities faster. Her vision therapist said this is REALLY common with kids doing vision therapy her age. We want to keep vision therapy as light and fun, and not something she dreads SO…

We’re taking a 4-6 month break from going to vision therapy sessions (as recommended by her vision therapist) to focus on just doing patched activities at home to try to continue to strengthen/maintain her right eye. We will continue to do 15-20 minutes every day at home!

Vision therapy is pretty expensive ($90-120 per session, not covered by insurance because it is an “alternative medicine”) and her vision therapist knows we have plenty of patched activities we can do at home (pretty much any preschool-type sorting or matching games). We will go back in a few months to see if Eliza is ready to do red-green activities again! Eliza’s vision therapist said it is very common to do a few months on/a few months off as she grows up.

We have been so happy with doing vision therapy and I’ve heard from many other moms that it helped their kids with various vision-related issues too!

I’m so happy to answer any questions about vision therapy to the best of my ability!

Not vision therapy, but Eliza’s drawing and letter forming has improved significantly since doing vision therapy!

On Anxiety

I’ve been debating about whether or not to write on this topic for months because I’m not an expert in the field of mental health or theology, but I am an expert in my own experience so I can at least write about that! I just finished reading a wonderful book about anxiety called “Raising Worry-Free Girls” by Sissy Goff which I would highly recommend to anyone who has struggled with anxiety or anyone that has kids.

I’ve never really considered myself a chronically anxious person. I’ve usually been able to sleep well, have faith in God, and feel like I’m usually level-headed. Until Oliver got leukemia. I felt like I was in fight-or-flight survival mode all through treatment. Doctors would tell us exactly what to do, exactly what appointments to go to, what medications to give. I was exhausted going through the motions of taking care of him and lost 17 pounds while living in Seattle because of the stress. Even then I never really felt chronic “anxiety.” Once we came home things changed though, especially when they told us there was a good chance Oliver could be relapsing. I worried that Eliza would go blind, that there would be no treatment options for Oliver, etc. I would wake up with nightmares that Oliver had died; sometimes I felt like it was difficult to take a full breath and felt like an elephant was sitting on my chest. I was less kind to others when I was feeling this anxiety.  

Ironically (divinely?) the Bible verse we chose for Oliver’s baby dedication way before he was diagnosed was Matthew 6:25-32:

“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these. But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. But seek first the kingdom of God and his righteousness, and all these things will be added to you.”

Oliver as a baby

The thing is, fear and anxiety are NOT from God. The Bible says over and over again not to fear, not to worry. God fills us with peace, self-control, patience, and love. Go on social media for about 2 seconds and you see fear and anxiety everywhere. Conspiracy theories abound. People are putting way too much faith and trust in an incredibly broken political system. There are never-ending reasons to worry – we are in a world full of really scary broken things. BUT we have hope. We have hope for right now and we have hope for our future!

I went and saw a counselor (who I honestly felt like wasn’t 100% helpful…he seemed really flabbergasted by our family’s whole story and then told me I needed to spend more time being sad. I DO think that counseling would be really beneficial if you find the right personality fit and I’m sure I will seek out counseling again if Oliver does end up relapsing or we spend a significant amount of time inpatient again). One thing the counselor said that was helpful though was recognizing anxiety or anxious thoughts for what they were.

We made a few changes. Seth offered to take Oliver to his monthly cancer appointments instead of me since that massively helped. I also mentioned to a friend that someone told me that sugar causes cancer so I would worry and feel guilty that maybe I was causing Oliver to relapse. That friend called me out and said “that is NOT from God. If you think you can control what happens to Oliver, then you are living with the view that you are in control, not God.” She was totally right. It helps to constantly remind myself that God has all of Oliver’s days planned out already. Of course I will still take care of him to the best of my ability and feed him healthy foods, take him to his appointments, and make the healthiest choices possible for him. But I don’t want those feelings of guilt and anxiety to creep in, because they are not from God.

Seth taking Oliver to one of his oncology appointments

The thing is, by trusting God, I’m not saying that nothing bad will happen. I know it very well could, but I’m trusting that God controls the outcomes right now and in the future. It also doesn’t mean that I don’t deeply grieve for the bad things that happen in our world, of course I do. I will never be ok with kids (or anyone) getting cancer, injustice, racism, etc. but I will have deep peace while fighting for health, justice, and peace.

The book I mentioned at the beginning had a great quote:

“As believers, we often think life is a formula, that two plus two always equals four, that following Jesus equals happiness. I would love nothing more than for that to be the case. My life has hope because I follow Jesus. However, I don’t believe that makes my life happy. Or that the happiness stays for long. I don’t believe it’s what Jesus promised either. Two plus two sometimes equals five. Your spouse dies unexpectedly just when you’re starting a family. Your career never takes off in the way you imagine. Two kind parents don’t necessarily make for a kind, easy child. Still, I believe God never makes mistakes. There is good and life and light this side of heaven. And yes, there’s also trouble.” – Sissy Goff “Raising Worry Free Girls” p. 170

Sissy Goff “Raising Worry Free Girls” p. 170

I’m not saying I will never worry or even that I don’t worry or. I have been able to have the feeling go away of an elephant sitting on my chest or thinking about what-ifs with Oliver as I’m falling asleep. I’m saying that I recognize my worry as not from God and if you are struggling with worry or anxiety, that isn’t the way our bodies or brains are meant to function. Recognize when your thoughts keep repeating what-ifs. Remember the many times we are told not to fear in the Bible. Sissy Goff’s book had some great anxiety-reducing strategies, reach out to a friend, or one of the many pastors and counselors out there that can help as well. Be kind and give grace to others because so many struggle.

Forever thankful for these blessings.