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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.



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Lizzie Simantz

Sunday 28th of August 2016

Thomas is an amazing little boy and you and Matt are amazing parents! I can't even imagine how this is but you're right, God chose you two to be his parents and I think he made the best choice! :)

Julie @ Just the Joy's

Saturday 27th of August 2016

So great to hear! I'll be praying for him! What a trooper that little guy!!!


Friday 26th of August 2016

You're strong girl! Such a good mama


Thursday 25th of August 2016

I've been following along for quite some time. My husband had surgery a few years ago and had to have a second shortly after and now has perfectly aligned eyes! Our 5 year old has intermittent and has been patched for 4 years. She was put in glasses almost a year ago and we go back in November and will very likely go ahead and have her surgery done while she's on Christmas break from preschool. There are so many people with this problem and I'm not sure they have the resources to get it fixed. I am so glad that you do. Thomas is a lucky dude ;) Good luck on the surgery and please keep us updated!


Wednesday 24th of August 2016

I'm so glad he's doing so well. I just can't imagine trying to put contacts in his eyes. Poor little man!

An Update on Thomas

Wow. I don’t even know how to adequately thank you all for the love, support, encouragement and prayers you’ve sent our way. Through my post yesterday I met so many brave mamas, received tons of doctor recommendations, connected with others who are also on this same journey and felt an overwhelming peace from the prayers. I wish I could respond to each and every comment but the truth is when we aren’t at the doctors office I spend most of my time snuggling my little man in one arm while researching or updating our family with the other. I’m so thankful this blog allows me to reach so many of my friends at once too so I can spend that time focusing on Thomas.

Although we’re facing a pretty significant long term challenge, I can’t help but think about all of the mothers who have and will sit in the same exact chair during a well visit in my pediatricians office and receive much worse news than cataracts. My perspective has definitely changed quite a bit and I haven’t stopped praising God for Thomas’ overall health. This could have been worse. Much worse. 

So an update since I last popped in…

I awoke yesterday in a blissful mood before the reality of the day before hit me all over again. We had spent much of the night researching bilateral congenital cataracts and tried to envision what this new normal will be like. After digesting all of the overwhelming information we had received, I felt a tug at my heart to get a second opinion before our surgery this Friday. Without a doubt, this tug was a direct result from the prayers you all have been praying.

We have received lots of recommendations for the best pediatric ophthalmologists around the country but unfortunately don’t have the luxury of shopping around and taking our time finding the perfect doctor. In fact, I have been struggling with the speed at which we had to make this huge decision and have to trust that God is in control here. As I mentioned in my first post, with each day that passes that Thomas is blind, his brain shuts down the development for his vision and our chances of visual restoration plummets significantly. So we knew we had to stay local to expedite this. That being said, there are only three doctors in Charlotte who specialize in pediatric cataracts. I decided to post to a local, private mommy Facebook group requesting any information I could get about these doctors and received over a dozen recommendations for one specific doctor that happens to be within walking distance to my house.

On Tuesday, at 7:56 a.m. I considered being that crazy mom standing outside the office with no appointment but refrained and instead took the slightly less crazy approach of calling the office over and over again until they opened. I was so thankful when they took my call right at 8 am, recognized my panic and urgency of our situation and agreed to squeeze us in that day in between patients to meet with “Dr. D” and his partner “Dr. G” who happened to be in the office that day too.

From the moment we arrived it just felt right. The staff, the nurses and both doctors were so sweet and comforting and made us feel like family. Dr. D agreed with our first doctor that Thomas has bilateral congenital cataracts and requires emergency surgery. He also did an ultrasound on his eyes to assure us that the issue is confined to the lens and the rest of the eye is healthy. No cancer, infection or retina detachment. From there, the information we received was a bit different from what we’d been told the day before. With over 20 years of this specific surgery experience he began to tell us that he believes Thomas will regain a good amount of his sight back over time with the help of the surgery, follow up surgeries, contacts, glasses and eventually a permanent intraocular lens implant. He quoted us a 10% risk of complications such as glaucoma which was a huge difference from the 40% risk we’d previously been told. When we asked if Thomas would live a “normal life” the doctor laughed and honestly thought we were kidding. His response was “OF COURSE! Why wouldn’t he?! He won’t be a fighter jet pilot but he can do anything he wants!” I hugged him. 

It was no question that we should go with Dr. D and his partner. They whisked us over to the scheduling office and set us up for surgery this Friday at 11:45 am for his right eye and another one two weeks later for his left eye.

Overall we are feeling very positive and optimistic. We believe that God is in control and is bigger than cataracts. He is the ultimate Healer. So I am fervently praying for peace, patience, wisdom and exactness for our doctors during surgery and complete restoration for Thomas’ eyes. And heck, I’m even praying for Thomas’ golf game. No prayer is too small, right?

Thank you again to all of you who have joined this journey with us and are praying alongside of us. We are so lucky and blessed by all of you. And if you don’t mind, please schedule us in for prayer this Friday at 11:45 am! 



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Stephanie Chalk

Tuesday 22nd of September 2015

Sending huge hugs to you and your family! We will be praying endlessly until we receive the next update! Xo, Stephanie

Kelly G

Sunday 20th of September 2015

I just read this post out loud to Todd ? I cried again--this time they were very hopeful joyful tears. I will be praying big time over the next few weeks and months. ? and you ABSOLUTELY pray for that boy's golf game!!!!!


Saturday 19th of September 2015

Just reading about sweet Thomas! I will be praying for you & your precious family. I am so thankful for the Lord's direction through this difficult process - so glad you found such a great doctor. Please let us know how everything went! You're a strong Mama & you have lots of people lifting you up in prayer!!


Friday 18th of September 2015

Just seeing this update and saying a prayer for you and Thomas! I'm so glad you were able to get a second opinion and the prognosis is better than you originally anticipated.

Jen Petersen

Friday 18th of September 2015

Such amazing news about being led to great doctors! Continued prayers for Thomas and your family!