An Update on Thomas!

It truly means so much to me when my readers request an update on our little man! Thank you all so much for caring about him! We actually do have an exciting update…

Thomas recently had an appointment with his pediatric ophthalmologist. Matt and I are always so anxious for these appointments. They usually take up to three hours (sometimes more) waiting to be seen, checking eye pressure (for glaucoma — a high risk side effect from his initial cataract removal surgeries), doing an eye exam over his contacts to check the prescription, removing the contacts, dilating his eyes, waiting 30 minutes, sometimes re-dilating and waiting 30 more minutes, doing a second eye exam without contacts and then putting the contacts back in and sitting through a consultation…with a 13 month old.

BUT for our first visit ever the doctor informed us that we would not need a full eye exam and instead did a vision test in a dark room with light up toys to see how Thomas tracked them at various distances and angles. Our doctor was thrilled to let us know that he could see a tremendous improvement from all the hard patching work we (and our teachers — they definitely deserve a shout out) have been doing.

At our last appointment almost 3 months ago we were instructed to get a lot more aggressive with his patching. So for the past few months we’ve been patching his “good eye” (left eye) to force him to use his “bad eye” (right eye) most of the day. He hates it (understandably) and we do too but he is such a trooper. The goal is to get both eyes working as close to equal as possible before we move forward with strabismus surgery. And we made it! So the doctor cleared us to schedule Thomas’s surgery. And we received a date this week!  

On September 28 at 5:30 am Thomas will undergo strabismus surgery!!!!

Wait, what is strabismus? Strabismus is a vision condition when the eyes are misaligned, commonly known as “cross-eyed.” Thomas has the type of strabismus where usually one eye (but sometimes both) turns in intermittently. Once it turns in the brain shuts it down and he exclusively uses the opposite eye which greatly affects his depth perception.

During surgery our doctor will go in and tighten the muscle in each eye to pull it back to center. The biggest risk for this procedure is the likelihood we will need up to two additional strabismus surgeries to completely align his eyes.

We were also kind of surprised to learn this recovery is actually tougher than his cataract removal recoveries. Thomas will receive a stitch in each eye which will feel very scratchy and greatly irritate him. He will want to rub his eyes obsessively which will be painful. Additionally he won’t be able to wear his contacts for at least 3 days after surgery while he heals and we administer eye drops throughout the day. And as you know, no contacts mean NO VISION at ALL for him so that makes us a little sad.

BUT this surgery is huge for us and for him! This takes us one step closer to improving his vision. And for that we are extremely grateful!

As for an update on his vision, we’ve seen a tremendous improvement in his eye sight with the help of a new contact prescription. We still won’t know exactly what his vision is until Thomas can read an eye chart but we have seen a difference at home. Around 3 months ago we notified our doctor that Thomas seemed to do well with objects up close (eating, toys, etc.) but wasn’t interacting with us at distances more than several feet away. For example, at pickup he wouldn’t even know I was in his classroom until I’d reach down to pick him up or he’d hear my voice (and yes, this would shatter my heart every single day). The new contacts are a much weaker power to allow him to practice seeing things further away. And it’s working.

Contacts are definitely as challenging as you can imagine but we are beyond thankful for them. If you’ve ever had the frustrating job of clipping a toddler’s toe nails or snot sucking a sick child, times that frustration by about a million and you can  kind of get an idea of what it’s like to regularly change, clean and re-insert contacts. I wish I could say the contacts have gotten much easier with time but they’ve only brought new challenges as Thomas has gotten older. He’s less tolerant of us messing with his eyes and is exposed to more activities that keep our anxiety levels at an all time high (ex: water play at school, swimming, etc.).

But through it all we are extremely grateful and blessed that God chose us to be Thomas’s parents. And we’re learning that God has prepared Matt and I our entire lives for all that this journey entails. Thank you all for the prayers and support for our little man. It definitely has not been easy (another post is in the works on how we’ve learned to cope, grieve and find joy in this journey) but we wouldn’t trade it for the world.