Ryan right after tarsorrhaphy surgery last year.
Ryan’s eyes are sewn mostly shut (known as a partial tarsorrhaphy). He has just a small opening on each, on the nasal side. This is necessary to protected what eyesight he might have left. The problem is, Ryan doesn’t shut his eyes naturally and isn’t efficient at blinking. The result is his eyes, without the tarsorrhaphy, are prone to “exposure.” In everyday terms this means his eyes would suffer severe dryness and lead to corneal erosion and scarring. It is extremely painful.
His eyes would literally melt away if left untreated.
Last Friday I took Ryan to see a Corneal Specialist with the hopes that he would no object to us opening Ryan’s eyelids a bit more. Then, the doctor must be willing to take him on as an ongoing patient (most doctors won’t). Good news. Both goals were met.
This opens the door to the next step… getting the eye surgeon to agree to remove a stitch or two. We’re scheduled for a visit right around Thanksgiving. This procedure is easy enough to do and is performed right in the doctor’s office. Really, it’s nothing more than removing a suture (or two). That’s not the concern though. The issue is if by opening it a bit more it might make Ryan susceptible to erosion and infection. In this case, Ryan would need to go back into surgery and have it closed back up again.
It’s the recurring dilemma I often face. I call it “competing objectives.” It’s no different in this case. On one hand, we want Ryan’s eyes completely protected. On the other, we want him to get as much visual input as possible. I’m hoping there’s a tradeoff there that will do both, but who knows?
I sure as hell don’t. And if I don’t, there is no one on this earth that does.
Prayers for you and your family. Hoping the procedure goes well and no infections!
When we were faced to make a heath decision for our kids and weren’t sure what to do, a friend of mine told me to rely on God; “He will help you make the right decision”. Good luck with the procedure. Praying for Ryan and your family.
God bless you Ryan, always–prayers everyday for your healing:)
If I were ever in a situation that Ryan finds himself in, I hope to have someone like Ken in my corner to keep pushing and pushing. The good thing about this “test” is if it doesn’t work, you can restitch, no harm no foul. I still think Kari needs to bring her hottie friends around over Winter Break and let them parade around for visual stimulation. My husband said perhaps parading the “women” around would perhaps make some “other” stuff work with Ryan. I say go for it, it is all good. I mean no disrespect calling Kari’s friends hotties. But they are. 🙂
Go with your gut Ken. Your instincts are your best friend. If you have come to this conclusion it is not by chance or on a whim… you have undoubtedly turned over every stone. Such results have propelled your intuition to step in and to lead the way.
My prayers are always with your Ryan and with your family. Rest assured that I and countless others will carry you through.
With love and in prayer,
Keri, MY C.F. FRANKIE and Family
<3 You Ryan, Ken, Sue, Kari
God’s speed be with Ryan for a quick and full recovery!
God’s speed be with Ryan for a quick and full recovery!
Prayers indeed!
So glad he finally has a corneal specialist! Difficult call, competing objectives, indeed. Hugs…
So glad he finally has a corneal specialist! Difficult call, competing objectives, indeed. Hugs…
Prayers!!!
Prayers!!!
Lord have Mercy.
Do what feels right, Ken….and that’s all. After that, it’s all up to God.
thoughts are always with you Ryan…stay strong guys
My heart goes out to Ryan and your family. My family and I are praying for Ryan’s healing. God bless you & family.
My prayers goes to him & the family. Let it be God’s will. LOL♥
Praying for you and your family. I am so sorry for everything Ryan has to go through. My heart goes out to him.
I was in Atlanta Ga this past week and while I was waiting to cross the street I looked up and saw a live billboard that had a picture of Ryan and his sister with the saying… One Tragic Night Lives Forever Changed. I instantly took out my camera and took a picture of this and posted it to my FB page.I am from Morgantown WV and I remembered this story and how my heart went going out to this family and still does. I thought that it was amazing that they had got their story out and I was seeing it in Atlanta. I will continue to pray for you guys!!!!!!
God bless him and thr family in then and of Jesus amen!
Praying for Ryan and his amazing family all the way from Texas. God gives miracles everyday ill be praying for Ryans!
Ken, I would trust you and your decisions for Ryan before anyone else’s. You ALWAYS have Ryan’s best interest. ALWAYS thinking of Ryan.
Romans 8:28 We know that God makes all things work together for the good of those who love Him and are chosen to be a part of His plan.
Trust God! He has a plan. And good things will come from this even though it might be hard to see. I’m praying for your family, and I hate what happened to him. Stay strong and encourage your family and friends to stay strong also.
Prayers being sent. God Bless You. UR such amazing parents/ family. Best wishes to Ryan
Stay strong!! (I know easier said than done) Ever since I heard Ryan’s story I look forward to reading the updates on his condition and how you all are coping as a family.
Praying for Ryan and the family. You are doing such an amazing job as a caregiver and I praise you for all that you do and I am certain Ryan can sense that overwhelming love you have for him. You truly are amazing people!
Nothing much to say.just that you are an incredible person. And the love that you have for Ryan leaves me with the chills.
My heart goes out to Ryan and your family. Speaking as someone who has gone through some serious eye problems, I don’t know what choice is right for Ryan but I do know the pain in the eye can be excruciating. Sometimes closing your eyes is the only relief. Sending prayers.
Praying for Ryan in Lake Charles Louisiana! <3
I would keep them closed if it will protect his eyes. Eyesight is a gift, but not a necessary factor of life. I work with tons of people who have lost their eyesight later in life, and are very successful, and enjoy life to the fullest. After all without eye sight, it just means all of Ryan’s other senses would be heightened.
We pray for Ryan and family ever day. This hurts my heart for all of you!!!
I love the last line.. “I sure as hell don’t. And if I don’t, there is no one on this earth that does.” You know best, Ken! You are an amazing caretaker and father! You give meaning to the word, family. You are their rock. God bless you.
You are doing an awesome job taking care of Ryan!! His story has truly touched my heart , I’m originally from West Virginia and when I saw his story months ago I was completely horrified!! U and your family are always I. The back of mind and in all my prayers!!
Ha! little Godincident there, Ken. You really are kin — to all of us! God bless!
Ken, http://www.eyeeco.com/category/icategory_id/37/tranquileyes_goggles.html
Ken, I have not tried any of these yet. I think there are also goggles that have clear lenses. The only ones I use are the wrap-a-rounds on windy days. They are really good to keep the eyes from drying out indoors also. Many products are on the market these days. I expect to hear about new ones at our next Sjogren’s Syndrome meeting on Nov. 16th. I will let you know. I would check out some of these products before further treatment if I were you, but you know best.
On another subject, I commented on Joe Maletta’s post, but when I went back to read new posts, mine wasn’t there. Somewhere in cyberspace is a note to Joe. I will write to him again.
Kin when will you move? Love to all and prayers as always.
I love these!!!! I was talking to my husband today about this and asking him if he thought using Oakley’s would keep the light out to stop the light from damaging his cornea’s. Then I saw Kari’s post on Facebook and told her over winter break she needs to bring her hottie friends to prance in front of Ryan and see how much visual stimulation he can handle. I expect a laugh there! 🙂 Do you need another fund raiser for the Tranquileyes? LOVE THAT!
Finding a good doctor that will take on a somewhat difficult case is always awesome, congrats! Excited to hear what happens around Thanksgiving. Also excited to hear what happens with the sleep study. 🙂 Good job dad!
You are in an “unfortunate” (understatement to say the least) situation, but in this situation, you and Ryan (and Sue, of course) are trailblazers. Whatever you do to help Ryan will help others who unfortunately come after him. Each doctor you see, each person you communicate with regarding Ryan’s well being will take something away to help another. I am sure you are documenting it all.
Praying for your son and your family may God bless you all.
God bless you and your family. You are doing the best you can and you are awesome 🙂
Praying this procedure works and no infection. All you and family are doing for Ryan
is truly amazing, Ken. Always in my thoughts and prayers
Continued thought & prayers for Ryan and all the Diviney family. You’re doing an outstanding job, Ken. Don’t second guess yourself and your motives. Hope to see you all soon!!
I Hope & Pray this works.no infection!!! My heart goes out to Ryan & Family..
Always in my prayers!
Praying for your son! His story has touched me deeply and even though I’ve never met him I think of him and your family often.
You are doing a great job!