Sunday, August 21, 2016

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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26 comments:

  1. I hope Thomas' surgery goes well. My thoughts & prayers are with you all!

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  2. Oh how wonderful! I'm keeping my fingers crossed that the little man doesn't need any additional surgeries for the strabismus. He is such a trooper and he is so lucky to have you and Matt (and Caroline)! I'll be keeping y'all in my prayers, especially on September 28!

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  3. Yay, great news! Praying for you all as you prep for surgery.

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  4. Thank you for the update and sharing your (Thomas') story. I'd never heard of strabismus or even imagined any of this for such a small child. I pray for Thomas & your family

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  5. Longtime reader with two kids about the same age as yours, but have never commented but I had to on this post. So happy thugs are progressing well!!
    I also had the surgery for strabismus when I was little, and it was very successful. I never needed a follow up surgery and no longer need to wear glasses or contacts. I don't really remember the surgery, although I know it was hard for my parents. But I hope this encourages you that you are doing the right thing getting this done. You are doing great and this will be behind you soon!

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  6. Thank you for the update on your sweet little man! I've been thinking of him (and you!) I had the exact same strabismus surgery as a young child...30 years ago! ;)

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  7. Praying for a successful surgery. We just had Andrew's strabismus surgery July 18th. They warned us about everything you stated above. Andrew did want to touch his eye, but not nearly as bad as I thought he would. He also never seemed to be in any pain. We still gave some pain medication but only the first 12hrs. We also didn't have drops, which I thought was weird. Our surgery was at 930, we were home by 12 and he immediately wanted to get down and play..he was a little wobbly though. So far we think the surgery was a success (its only been a month so can't really tell). His eye would prior to surgery would turn in 50 degrees of prism without glasses and now its 15 and we were fixing it to be stright with glasses! Not without! We are soooo glad we went through with it. Although Andrew was able to wear his glasses immediately, I hope and pray the 3 days Thomas won't be able to wear his contacts goes by fast.

    Also, are y'all doing Strabismus surgery with the Faden procedure (stich)?

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  9. Praying for sweet Thomas and especially for your hearts as a mommy and a daddy. There is nothing more difficult than watching your child suffer in any way - I certainly pray that the surgery goes as smoothly as possible and that Thomas remains pain-free. Praying for that peace that passes all understanding to be with all of you as Thomas undergoes another surgery. How blessed Thomas is to have you as parents - and how blessed you are to have him <3

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  10. Will be praying for Thomas and his recovery

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  11. Glad to read an update on Thomas. Will lift him up in prayer!

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  12. I can't imagine how difficult it would be to have to do all that stuff with his eyes. My daughter is 1 and freaks out when we try to touch her face to wipe her mouth or her nose, etc. So glad you got a good report. Blessings to you and your family! I'm sure it is difficult but I love your positivity and joy to be his mommy too.

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  13. So, so thrilled to hear about the wonderful progress sweet Thomas is making. God is so good!! Will be sending lots of prayers to all of you on Sept. 28th for a successful surgery. You got this!

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  14. Have said so many prayers for this sweet little man and continue to every day. We love and admire you and Matt so much for your courage, strength and unwavering faith and especially love your sweet babies!

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  15. this is FANTASTIC news mama... YAY THOMAS!!!!!!

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  16. You guys are such an incredible inspiration and I have been in awe of how you've managed the stress of this journey the entire time!

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  17. So happy to hear the good news and I'll be praying for him on the 28th. I have surgery myself that day so I'll be praying for both of us! 💜😊

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  18. Thank you for the update my sweet friend. A friend of ours here in South Africa is having the surgery soon - I am going to ask her about it and then compare notes with you x

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  19. Yay Thomas! Praying for a successful surgery and for the kind of healing and recovery that only God can bring.

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  20. Such awesome news! Prayers for a successful surgery!

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

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  22. 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!

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  23. You're strong girl! Such a good mama

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

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  25. 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! :)

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