Ryan's Eyes

Year old- 0:

-Dr. Droste Eye check - 3 months old -Noticed lattice degeneration and severe Myopia in both eyes.  Droste put in glasses at 12 months old.

-Retinal check under general anesthesia - Retina OK - 6

Months old -  Dr. Aaberg

Year old- 1 :

-Retinal check under general anesthesia 2X - Retina OK - Dr.

Aaberg

-Vision check - Droste

Year old -2:

-Retinal check under general anesthesia - Retina OK, Cataract developing in left eye -  Dr. Aaberg

-Vision check - Pippo

Year old -3:

- Retinal check under general anesthesia - Retina OK - Cataract still small- Dr. Aaberg

-Prophylactic 360° laser on both eyes to prevent retinal detachment. Saw Dr. Antonio Capone Jr. for a second opinion and Dr. Aaberg did laser.

-Vision check - Pippo

Year old- 4:

-  Retinal check under general anesthesia - Retina OK - Cataract still small - Dr. Aaberg

-Vision check - Pippo

Year old -5:

• July 2014 - Retina check with Aaberg - Retina OK - Noticed he is developing Amblyopia in left eye.  Referral to Dr. Lisa Vredevoogd
• October 2014 - Started patching right eye to strengthen left eye.

Year old- 6:

-March 6, 2015 - Eye Muscle surgery in left eye to straighten eye with Dr. Vredevoogd.  She cut two muscles and over corrected top muscle so when he looked up his eye wouldn’t move up.  Began patching right eye to strengthen left eye.

Hi,

I just wanted to touch base. Ryan was super nervous this morning but did such a great job with the surgery. It took longer and she had to do more than what she was planning, but he came out ok. He is resting and taking it easy now. His initial recovery will take a few days and then it will take a few months for his eyes to adjust and work together, and turn his eye/brain back on. Thanks for the prayers and thoughts!!! He will most likely be in school Tuesday. 

Have a good weekend!

A reading I found in the Bible pre surgery.  I literally opened the Bible and this was the first reading I saw. 

Nervous Ryan.

Hanging out with my brave boy watching a movie before surgery. 

A picture Rachael made/wrote and slid under Ryan's bedroom door before his surgery. 

Post-Op.  It felt good to have a cold wash cloth on his eyes. 

Starting to heal...his eye is still red.

Getting better!

April - Ryan had to begin patching his right eye to strengthen his left.  He HATED to patch and we would have major fights!  

- May 3rd, ‘ - 1st Retinal Detachment - Giant retinal tear with hemorrhaging.  12 o'clock position to 6 o'clock position.

-May 4th - Surgery to repair retinal detachment.  Pars Plana Vitrectomy, Laser of retina, Removal of Lens due to hemorrhage/cataract, and filled with silicone oil.  Not able to place scleral buckle. Face down to heal. - Dr. Aaberg

What  a emotional draining 24 hours.  
 
Ryan saw his retina specialist this morning and they determined that he had to be operated on immediately.  Ryan had a very large tear/detachment of the retina that went from the top of his eye to his optic nerve.  With it, he had lots of bleeding.  He was rushed to surgery by noon today and the Dr. was able to do a vitrectomy and remove all the fluid and blood from his eye.  He also removed his lens for several different reasons.  Ryan had a cataract and if he left the lens in he wouldn't have been able to get all the blood out.  With healing the blood retracts and would cause another detachment.  He will be without a lens permanently.  Which, ironically, he will probably end up with a better prescription in his left eye when this is all said and done because his prescription is so severe right now.  They were able to laser his retina back in place and he filled his eye with an oil bubble.  With his recent muscle surgery, he couldn't place a buckle around the eye which would have given him more stability.  Ryan has to remain face down or laying on his right side for at least a week for the oil to push up on his retina and aid with healing.  The oil will remain in his eye for 6 months to a year.  
 
At this point, Ryan will not be in school for at least a week. Perhaps longer.  Rachael will return to school tomorrow.  She has been such a wonderful supportive sister today.
 
Ryan is at home.  He is resting.  He was able to eat. We are exhausted.

 

May 5th - We made it through the day today being face down. He went to the doctor to remove the patch and check on things! He said Ryan's eye looks great! (It's still really nasty to look at Ryan, but the retina is in place and wounds healing).He has even developed a "position spot" on his cornea already which I guess is a good thing. He said he could tell Ryan was doing his homework and keeping his head down. He did all day!!! He is able to read, watch movies, color, write, and even play Minecraft! The Dr wrote him a prescription to play Minecraft all day and Ryan was all smiles! (I was cringing). He did say the the prescription expires after a week and then his brain will rot if he continues to play! :-) He said he just has to keep his head down...our neighbor brought over a cot similar to a massage table that has a hole in it for his head. He can be comfortable being head down and still do all those things! What a neck saver!

He does not have any vision in his left eye and will not for about 3 months or until his nerves "turn on." 

Ryan will be out for at least another week as he has to be in this position as the eye heals...and we are starting to make progress... One day at a time.

- May 12th - Post-op check and PVR development and 2nd retinal detachment. 6 o'clock position to 8 o'clock position.

Hi!

I thought I'd update you all on what has been going on.

Ryan has been such a trooper and been doing what he needs to do.  Lay with his head down.  It has been really, really hard on everyone, especially him.

Today, we went to the eye dr to see how things were healing.  He appears to be healing great, however... his lower retina on the same eye is now detaching. UNBELIEVABLE. I've lost a lot of tears about this. Ryan told me that I have to stop crying and "suck it up!" Positive kid.  We will have to have another surgery on Monday to attach it and try to put a partial buckle on his eye to hold it in place.  He has to remain face down until then and then start over after the surgery.  I was hopeful that he would be returning to school this week as he misses everyone so much.  This will not be happening.  I just don't know what to say as I am at a loss for words.  

It just isn't fair that he has to suffer.  

I'll keep you posted on how things are going.  If there are things in Ryan's mail box you can send them home with Rachael.  He can still do reading and writing.  He prefers to read or be read to.  Which is what we will keep doing. 

What a deal.  

-May 18th - Surgery to repair 2nd detachment - Pars Plana Vitrectomy, oil removal, laser of retina, PVR removal, placed scleral buckle, silicone oil fill. Face down to heal.

There is something to be said about the power of prayer and love. Ryan's surgery, this morning, went better than expected. The surgeon was able to work around the scar tissue from previous surgeries and get a whole buckle on Ryan's eye! Praise the lord. (Google scleral buckle if you want to see what was done, but be fair warned it is graphic.) He had to try to get it on to save the vision. He was also able to laser the retina back in place and refill eye with oil! Ryan will have to posture face down for at least another week, but Ryan said "that will be easy...I've already had to do that for 2 weeks!" This kid has the most positive spirit, and outlook on this whole situation. He is and will continue to be in much more pain during recovery this time.  It's sad to see.  The drugs they gave him this time (they said that it was the same as last two, but he was under for so long today) really made him "loopy" and "tippy."  He hasn't done anything but sleep since we got home.  :-(  Rachael has been the best nurse and helper for Ryan throughout this whole ordeal! She is my angel girl. :-)  

Thank you ALL for your love, support, and prayers. I'm extremely grateful!

 

 

Year old- 7:

November 2nd, 2015

I wanted to update you on Ryan's appointment today.

Ryan has been struggling with patching and the vision therapy, it is a BIG FIGHT to have him do it.  In the end we always won and he ended up patching because we were told that it would be for the best, to improve his vision.  He would always say that he "couldn't see."  His vision was 20/100 right before school started, I was hoping today we would see improvement and that all this fighting would be for something.  It turns out that he could barely read 20/200...(the big E is the only thing he can see) with his left eye.  His vision is getting worse.  It turns out that when they did his retinal detachment surgery they also took out his lens (due to a cataract and lots of blood), but left the capsule in place for future lens implant.  It turns out that this bag is now getting cloudy and filamentous.  The silicone oil that is also in place is also causing lots of scarring in the back of his eye.  He will have to have a vitrectomy to get the oil out sooner than later.  We were going to wait until next summer, to be less disruptive to him.  We will now have the surgery over Christmas break.  At that time, the doctor will clean up the lens capsule, remove the oil, clean up the scarring and replace it with a gas bubble.  The good news is that his retina looks like it is in good shape.  He will have to position face down for about a week or so, most likely.  He also noticed some lattice degeneration in his other eye.  Which he will laser down during this surgery as well.  

"Hopefully" after this surgery his vision will be improved and we can work on improving it even more.  Time will tell.  For the time being, his good eye is 20/25 and we PRAY TO GOD that he doesn't have a detachment in that eye. ( I'm beginning to wonder if I should start having him learn braille.  I don't want to freak him out or worry him, but it may be good to have him learn it, like learning a second language.  )  He is very positive about this situation.  We knew he would have a surgery, but not this soon.  He is happy because he doesn't have to wear his patch any more.  He said he won't worry about it now either because it isn't until Christmas.

We cancelled his other vision appointment for Thursday because since he can't see out of the one eye it would be worthless to go.  So...long story short, Ryan will be in class all day on Thursday! :-)  Which he is also excited about. 

We want to be as least disruptive on Ryan as possible.

Until then... we try to stay positive and continue to pray...Whew!

-December 21st, 2015- Vitrectomy to remove oil and clean up cloudy lens capsule.  Major pucker of retina due to major PVR and had to put oil back in. Face down to heal. Dr. Aaberg

Well, things weren't as good as we had hoped today...once the dr opened up Ryan's lens capsule, he saw so much scar tissue!  More than what he expected. He had so much that it was pulling on his retina, it had actually pulled down his retina and twisted it. He said that as soon as he snipped the scar tissue away his retina was going back but we won't know the extent of his vision until he heals. He had to put oil BACK into his eye, or risk another detachment. So, we will have to go through all of this one more time. Probably in a few months.  He lasered his good eye and thankfully that eye is still ok. He will be face down for a week to heal. It's getting hard to stay strong for him...thanks so much for all your prayers.  Trying to be patient.  He has such a loving a supportive family to take care of him.  He is home now resting and watching the Lego movie!  

December 30th, 2015

We are celebrating good news! 

Ryans post-op apt was good! Retina was intact, all holes healing from vitrectomy, regaining vision (20/200), he can see the big E! He can be more active! Still has to have sleeping restrictions and can't look up or sleep on back. Will also have activity restrictions for gym and recess, but overall...

He is happy! We are happy

-January 14th, 2016 - 3rd retinal detachment due to scar tissue.  9 o’clock position to 12 o'clock position. Face down healing.

I am really out of words to describe today.  

Ryan had another retinal detachment.  Third one in 8 months! (With those odds I'm not sure why we didn't win the power ball. Ha ha)  

Absolutely NOTHING that he did, we did or anyone did caused this and that is what is so darn frustrating.  We are doing all we can, to a T. He is just making so much scar tissue.  

I got a phone call about 1:00 today that Ryan was having some eye pain.  (Ryan is so in tune with his body and eyes.)Thank you Pat for being so caring and on top of things!  This was really surprising to me because he has been healing great.  I wasn't sure what it could be.  I came in and talked to him, and assessed the situation.  My Mom intuition kicked in and I called the Dr. from school. He said he wanted him seen ASAP.  We went right over and they dilated him and checked him out.  He has a lot of scar tissue pulling on his retina again. Regardless of the buckle, and oil  in his eye the retina is detaching.  This time it is detaching from the 6 o clock position to the 10 o clock position.  The scar tissue is pulling on the retina and fluid is going behind the retina.  It hasn't tore at this point.  It isn't emergent to have a surgery tomorrow, and the surgeon needs to put a plan together.  

He compared the scar tissue to glue.  He said that when you clean up wet glue it just smears all over, you want the glue to dry before you clean it up to pull it off all in one piece.  Same with scar tissue.  They want to wait a bit longer for the scar tissue to harden.  Not sure how long this will be.  They want to take advantage of the oil that is in his eye at this point.  So, he has to lay on his left side or face down until Tuesday when we see the specialist again.  At that point we will put together a plan which will undoubtedly involve surgery and more face down time.  He is so bummed he has to miss school, and may be out a while.  We have just taken a huge step backward with his eyes.   The Dr doesn't want Ryan up and around to risk his retina tearing.

The goal is to preserve his vision and do what we can.  At this point he has none in the left eye. :-(

The retinal detachment is one thing, but there are so many other ancillary effects that are spiraling out of control.  

There have been a lot of tears today.  This is the LAST thing that we expected. Ryan has cried and said that he doesn't want another surgery.  Surgery #12!!!   He didn't want me to tell Rachael, to upset her.  He didn't want me telling anyone.  He is so frustrated too.  He said he hates his eyes.  He wonders why God is letting this happen to him.  His self-confidence is so low. Lots of hard questions to answer.  He is going to be fine. We will be fine.  Just something to get though.   

We have a doctor's note for school if we need to bring that in we can, or have Rachael bring it in. 

We will definitely keep you posted after Tuesday's 5:00 PM appointment.  

I guess at this point we pray for the doctors knowledge on what the best thing to do for Ryan.  We have the best of the best working on him (I'm surprised he hasn't run away from us yet!) and we need their skills to help him the very best they can.  Pray for my hope. I'm beginning to lose it. 

This is really getting old.  Sorry to be such a drag...:-(

January 19th, 2016

Ryan didn't get seen by his surgeon until about 6 tonight and we had semi-good news!  Perhaps we can call it a small miracle. :-)  It appears that this face down/left side positioning is working!  His body is actually reattaching his retina!  There is only 10% or so that is still detached.  This is really good news.  The bad news is that he is developing MORE scar tissue and the surgeon wants him to CONTINUE to lay face down for a few more days to see if we can continue to heal it.  (He was honestly surprised that it was reattaching so well with just positioning.)   It takes about 3 months for scar tissue to "harden." 

We have another appointment on Friday and IF Ryan continues to heal, then we will go in for surgery on Monday and JUST have to laser his retina, then wait until his scar tissue "hardens" and do a vitrectomy in a few months. (The more they mess with it, the more inflammation, the more scar tissue)  This surgery would be non-invasive, and very good news. So the best plan is to leave it alone.  

If he doesn't heal, then we will go on to plan B.  Which we don't know what that will look like at this time.

So, he is for sure going to be out of school another week for sure.

We would like things to do here at home.  He is willing to work and read and do things!  I am willing to help him. He wrote his "how to" paper and a persuasive letter yesterday and has read his books.  He isn't in any pain, it just really is miserable having to look down all the time.  So anything "different" to do is good. 

We all were in a really good mood tonight and had our spirits lifted.  Ryan was happy that all this face down time was actually working!!!

Our motto for the rest of the week is: LAY AND PRAY!!!!

We need the prayers to keep coming.  Pray for complete healing!  

-January 23th, 2016 -

Hi!

Just wanted to touch base to keep you updated on Mr. Ryan!

We had the best possible news on Friday.  He has almost completely healed his detached retina by positioning face down/left side.   He has a small "pucker" that will not reattach due to the scar tissue pulling on it, but it is so far off to the side peripheral vision that at this point, the doctor isn't too worried about it.  The doctor will just laser around it to keep it in place from re-detaching and causing further problems. When his eye settles down we will go in an take the oil out and clean up this scarring. This is the best case at this point for Ryan.  The least we can touch it the better.  

He will go into surgery on Monday at 9:40 AM to have this procedure done.  It should be a pretty quick procedure, but Ryan will have to position for a week after so the laser can "set up shop!" I'm not sure how he will feel after the laser, or if his eye will be patched. We just aren't sure what to expect.  He will have to be out of school another week. :-( Whew...this kid racking up the days face down.  We are in uncharted territory.  

He has completed almost all of his class work and has pretty good spirits.  He is happy that the face down is working.  It's just unfortunate.

Thank you for your continued prayers, thoughts and patience.  That is one thing that I have had to learn during this process.  Patience.  

January 25th, 2015- Laser to tack down retina.  Unsuccessful due to fluid behind retina.

Wanted to send a quick update.  Ryan is the most brave and strong little kiddo.  Many people know him now at the hospital as we have many repeat doctors and nurses, and they all agree.

Ryan just had laser done on his retina this morning

which was the best case, however the surgeon wasn't

too optimistic about the laser. He could only get about 1/3 of it to take due to so much fluid behind his retina.  

He has to position face down for another week to heal and at that time we will see what the next step is! We know what to do, just tough... he is home now resting

Face down doing homework:

Lots of face down time:

Jan 29th - Bad Day

HI,

I can't even believe this is happening again...Ryan is going in for ANOTHER eye surgery tomorrow, Monday AM. 

Last Monday's laser didn't work how it needed to and he still has a hole in the retina with lots of fluid behind it.  So the dr wants to have him lay face down for 2 more months or do the surgery.  He pushed for the surgery.  Ryan will have a vitrectomy tomorrow to take out all his fluid in his eye, laser his retina flat, remove scar tissue, and fill his eye full of oil.  He will have to position face down for another week to heal.  I just don't know what to say any more.  I'm not sure I can handle much more.  He is so strong.  He told me in the office on Friday that it breaks his heart to see people sad and that I couldn't cry.  How is it that my kid can be stronger than me??? 

Ryan will be out for the whole week next week.  

I see God in my son.  I see it in his strength.  He needs for things to settle down in his eye.  We will continue to fight for his vision and do all that we can to preserve what he has left.  

-Feb 1st, 2016 - Pars Plana Vitrectomy, removal of oil and PVR, laser retina, sweep retinal with diamond brush to get all PVR, refill with oil. Face down to heal.

        -Pressure increased to 50 after surgery.

Well, Ryan is out of surgery. Almost 3 hours!!!  Dr. "swept his retina with a diamond ended microscopic brush!" His eye was FULL of scar tissue again!! Dr. was in disbelief. He was able to get his retina to relax and lay flat. Right now he is very confident that everything is perfect in Ryans eye. We need to stop the scar tissue development so we are going to up the steroids! Didn't want to do, but feel we need too. He will be on an oral steroid, prednisone. Crazy side effects, but have to do to get out of this cycle.One week face down to heal.

Ryan is a little loopy now, and doing ok. Will need rest and we see DR in AM tomorrow. 

THANK YOU for the prayers!

Feb 2nd  - Drama begins

Ryan had a pretty rough night and morning. He didn't sleep too well.  He HATES wearing the patch, as it just pulls and makes it miserable.  He had to position on his left side which was also the side that the metal patch was on, so it was just uncomfortable for him.

He also had to swallow 2 steroid pills this morning.  He couldn't do it.  We tried EVERYTHING! Apple sauce, jam, honey, bread, crackers, water, OJ, practicing with M & M's (cut in half), we called the pharmacy and they told us to crush them and put them in chocolate pudding for him.  He got 4 bites down before he vomited it all back up.  What a mess.  We tried all morning before I called the Dr and had to see if they had a liquid form, which they did!  So, we had to go get that, and they flavored it his favorite medicine flavor, GRAPE!   He was able to take that and keep it down.  Thank God!

We made it to the Doctor and everything looks great, which it always does right after.  We just need to pray NO SCAR TISSUE!  And that it is managed by this steroid.

His eye is very sore and swollen, but with time should get better.  

He needs to be seen on Friday again to make sure nothing crazy is going on.  

Thanks for the ongoing prayers and we wishes. 

Yes, my husband feels so badly that Ryan is suffering so bad and went out and got an Ipad.  Ryan has befriended a few nurses at the hospital over the last couple weeks (imagine that) and one of the nurses gave him her Ipad to borrow while at the hospital and she put Minecraft on it.  My husband saw how much he liked it and how easy it was for him to use and see.  We really should have got him one earlier to use since he has been face down for so long, but better late than never!  It is a family Ipad.  So we all can play! :-)

Feburary 4 - pressure increases

Ryan took a turn for the worse today. He started having some eye pain last night which developed into major headache and eye pain this morning. He had some nausea and vomiting as well and I knew his pressure was up, so I took him in and his pressure was 49! It should be normally like 8 to 10. Poor kid. He was unresponsive to eyedrops and we had to sit in the office for several hours until his pressure came down. He has been a limp rag doll all day, poor kiddo has been through so much. We got two new eye drops to put in and will return tomorrow to see if they continue to lower his pressure, which is rising due to the steroids that he HAS to be on.

Ryan has not been able to do any school work this week. Just so miserable, we are hoping he turns a page very soon.

Feb 5th - 

At the Dr. 's again today.  His pressure was still up,  but is feeling better.  More like himself.  No nausea, or vomiting.  We have to add another drop. (We have a small fortune invested in eye drops.  Yikes!)  

He was finally feeling good enough to do something, so he wrote out his Valentines.  Dr. wants him out of school next week for sure.  :-(  He is really missing everyone. 

We feel like we have his pain and condition managed going into the weekend.  Fingers crossed that it is uneventful. We cancelled our family trip up to the UP to see Great Grandma/Grandpa and everyone is disappointed, but it is for the best.  Ryan is just to unstable.

Feb 9th - 

We are pretty low key around here.  Ryan is slowly on the mend, and I do believe the drops are helping his pressure!!  They, however, make his eye very light sensitive so it's hard to open his eye.  Just praying all is healing.   Just hard to know what it going on inside his little eye.ust spoke with Dr. regarding face down time and Ryan's drops.

I'm literally going to lose my mind. (Not really, but quite possibly...)  He said that he wants Ryan to continue to be face down until he sees him on 2/18 and can assess the scar tissue situation.  This obviously means no school until then. 

I'm not sure how we are going to do this.  Ryan is okay with it, because it means more YouTube and Minecraft.  However, it is really affecting him and the rest of my family.  I had him go for a tiny walk yesterday, just because he needed some fresh air.  Now I feel bad.  I just don't want to do anything to cause him to have ANOTHER surgery.  This whole situation is messing with my head as well.

Feb 10th -

Ryan and I did a Skype today with a boy in Alabama who had his second retinal detachment due to scar tissue with surgery last Monday.  His name is Ian.  Ryan was giving him tips for how to deal with face down and Ian was giving him tips on doing homework.  It was cute! He also has Stickler's Syndrome and it was creepy how similar they looked.  Like brothers.  Nice to know someone else walking on this journey. 

Homebound services

Feb 17 

Ryan is hopefully making gains with the healing.  I am so anxious for his appointment today.  He has good days and bad, but over all good. I think this steroid makes him "flush" a lot and he gets feverish and sleepy.  I think laying down is really starting to mess with him and his sleeping.  He gets really sleepy during the day, and then doesn't sleep well at night.  He has been getting up at 5 AM (a few days we have put him back to bed at 4:30 AM) to start his day!  I however, let him do his own thing, and I go back to bed for a few hours. :-)  This kid has had zero physical activity for a month and it is affecting him. His cheeks are getting pudgy. :-) That could be from the steroid too, doctor said. 

He has been feeling like doing more this week.  We talk all throughout the day about stuff. He's such a good kid.  He has been writing thank-you notes to people as well, he has been spoiled again.  He sends at least one letter a day.  Such genuine love and gratitude.  

I'm SO HOPING AND PRAYING that we get good news tomorrow.  He is ready, and I am ready for some good news and an END to this face-down time. 

Feb 18th -

Well, we have good and bad news....what do you want first???  :-)

I'll do the good news.  We all need that!  We have a return date for Ryan to come back to school and he can now be face up!!!  This is good, very good.  His retina is flat and still attached and there is no scar tissue developing at this point, even better! (It typically starts 3 to 4 weeks after surgery, we are 2.5 weeks out.) Dr wants him to stay home another week to continue to heal and then return on Feb. 29th. However, I just looked at the calendar and he has another an eye dr apt that morning, so it may be on Tuesday March 1st.  We will just see how he feels etc.  This kid has had zero physical activity in the last month so we will slowly "bring him back to life!"  The only condition upon return he won't be able to have physical activity. So no active recess or gym.  

The bad news is that he is having several negative side effects from the steroid.  One of the major ones being his inter-ocular pressure is THROUGH THE ROOF!  Those pricey little drops aren't helping, or maybe they are but not enough.  There isn't much more we can do because he has to be on the steroid.  We are modifying the frequency of a couple of the drops to see if it makes a difference.  This increased pressure will damage his nerve and cause him to go blind (glaucoma)...so there is a fine line we are walking, but trusting the Dr. This increased pressure makes him feel generally yucky.  Nausea and sleepy are his big side effects.  He is also wearing away his cornea with all the nasty drops. It's really scratchy. So we have to lube his eye up and keep it moist.  

Wow! What a day.  So much excitement. ;-)  We are so happy that he can be face up and that we have a return to school date!  Ryan said that the prayers are working!  So many positive thoughts and people praying for us.  It is overwhelming!

Also wanted to add that he has very little vision in that left eye.  Without his glasses, he can make out the letters O and L below the big E.  20/200 With his glasses he can't see anything with his left eye (don't want to get a new prescription until his eye heals as it is still changing).  We are hoping that with time some (OR ALL who am I kidding) of his vision will return. I have to be hopeful!  But with so much trauma, it isn't likely.  I pray for miracles every day!  His vision in his right is is 20/30.  So we PRAY TO GOD that nothing happens to that precious eye!!!

Just wanted to let you know the results from today's visit with the specialist!

Feb 28

Ryan has been getting more and more normal every day, he was outside for a few hours today! His appointment tomorrow is with an ophthalmologist specialist. It is probably premature, but it is so hard to get an appointment so we kept it.  He will help formulate a plan for bringing his vision back in his left eye.  I'm curious to see what he has to say.  

He sees his retina specialist on Thursday.  Hoping at that time we can take him off the steroid. 

Ryan is nervous and excited about coming back to school. I think he kind of likes being at home with Mom.  :-)  I'm ready for him to get back into the school routine. :-)  He is worried that he will get bumped and have another detachment at school.  I told him we have to take a few risks to make some gains.  He's a worrier.  Not sure what else is going on in his little head, but if I can get it out of him, I'll let you know.

Feb 29 - Dr. Droste

At the specialist today, we saw that his retina looked good and there was still no scar tissue.  Praise God.  However, his poor cornea is rubbing away. All the harsh glaucoma drops are wearing away his cornea, so we need to heal this corneal defect and THEN he can get a new prescription!!! He is seeing 20/400 right now in his left eye (pretty much blind) and his right eye sees 20/20.  Thank you God!  He has to have a more healing ointment/lubricant for the eye.  We go on Thursday to check to see if it is working and strong enough to fight these yucky drops.  

Ryan stated in the car today, he was worried his eye would be very light sensitive at school and "what if I can't see!"  I told him to just let you know if he was having problems and that you would make accommodations where appropriate. :-) He doesn't seem to have problems seeing books or reading books here.  I'm not sure as far as distance vision goes how he will do.  He said that you put him up front, so that shouldn't be a problem. As I told him, you just have to communicate with everyone and we will help him out the best we can!  

 We all agree he is the most brave kid we have ever seen!!  The specialist today couldn't believe how much he was able to see with all the trauma his eye has been under recently. 

-March 3rd, 2016 - Developing Scar tissue at 12 o'clock position, Cornea is extremely dry and developing corneal Keratitis - referral to Dr. Ann Renucci and Dr. Lindsay Tomkins

We are just leaving the dr...LONG DAY! We had to go to another specialist after he retina. He wanted him seen by a cornea specialist. Cornea is a mess. We had some disappointing news at the retina specialist. Ryan is developing scar tissue on his retina. He has to go in Monday for a steroid injection done at the surgical center. They will have to put him out to do it. So much for fun day off...I'm about at my wits end. Just pray. 

Developing Scar Tissue and his cornea is a mess... off to another specialist!

Getting out of town:

All of Ryan's Eye Meds:

-March 7th - Laser surgery to contain PVR, steroid injection into eye.

Ryan had eye surgery again today and everything went perfect. The doctor was able to give him a steroid injection into the eye and also laser to contain the scar tissue that has developed. We are home now. I'm more exhausted than he is!! 😀

Ryan really doesn't have any restrictions at this point. No face downtime. He just has to recover from today.

I just wanted to give you an update on how things were going! I hope you're having a productive day today.

March 10 - Cornea Dr

Ryan saw 2 cornea specialists today and the good news is that his cornea isn't any worse, and it may be slightly improving.  Yes!  Baby steps forward.  Ryan is just so fearful about going to his doctor appointments because he assumes that he is going to hear bad news, me too.  But I told him this morning...God will be with us celebrating good news, I just know it!  We have to start training our brains for positive news.  Dr. apt days are just so exhausting.



They want him to keep up the antiviral medicine and changed his lubricating ointment.  



When he returns to school, will I need to come in to administer the eye ointment, or is there someone there who can help with that?  Not sure how we are going to work all this out, but I will to do what I need to do.  He would need it in the AM  and then in the PM, at a minimum.  I'm trying to have him learn how to do it, but we aren't there yet.

-March 18th - More development of PVR at 6 o'clock position

Well... Ryan had such anxiety and therefore I had anxiety going into today appointment.  When he couldn't even see 2 finger's in front of his face...he whispered in my ear...I have a bad feeling we are going to get bad news.

There are so many variables in play with Ryan.  Overall, we had good news.  Cornea still seems to be still irritated, but not worse, silicone oil still in place, buckle still in place, retina still attached.  BUT he has so much inflammation and is making MORE scar tissue and it is actually "tenting" his retina.  The laser surgery that was done 2 weeks ago was successful, BUT he is developing more.  What to do?!?  He needs to get off of the steroid, but due to the inflammation should still be on them.  We are lowering the dose.  He needs to have another surgery to "tack down" that area with the scar tissue on the retina, but the more we mess around the more inflamed we make it, the more scar tissue. It is a big giant tug of war!!!  I asked if going back to school and being more active is causing more inflammation. He said NO, that it is just Ryan's eye.  His eye needs to settle down.  I'm looking into more "holistic" approaches to anti-inflammation.  Something needs to work for this kid!!! 

Wow, he is relieved that we don't have to go into another surgery Monday and that he can continue coming to school. At this point we are sticking mostly to our same routine.  Mentally, he is doing well with it!!!  

Thank you for all your understanding.

We go next week Thursday for 2 more doctor/specialist appointments so he will be out the whole day on Thursday...but will be there all the rest!

March 24th- 3 prayers over eyes today: Droste apt and then Cornea Apt.

Long day.  Overall positive.  Still moving forward, baby steps.

His cornea is so dry.  (Think winter chapped hands on the surface of his eye.) Poor kid is getting scar tissue on the surface of his eye as well.  Adding another lube drop and some at-home "spa day" treatments to help with natural tear and oil production. Ointment doesn't seem to be helping. 

His retina is attached, but scar tissue is putting traction on retina. :-(  Leaving it alone for now.  

Vision is still 20/400 (basically can see fingers at 1 foot in front of his face.)  Won't do new glasses prescription until cornea is healed. 

I have to share some prayer stories from today.  He was blessed 3 different times in prayer today.  First, our specialist blessed him and said he was going to a "silent retreat" this weekend and will add him to the top of his long prayer list.  Second, we had about 45 minutes between appointments and went to the Grace coffee shop for a sandwich.  While sitting there, the owner started making conversation with us and he said he was also a pastor at a church in Kentwood.  He offered to say a prayer over Ryan and bless his eye.  Finally, on the way home, Ryan and I stopped at Mary Free Bed to visit a friend who is there recovering from brain surgery/tumor.  It was good for both Ryan and she to see each other and share "suffering" stories.  It was good for Ryan to see someone who was suffering more than he was.  Anyway, while we were there her pastor came in to visit as well.  We all got talking and shared Ryan's story.  The pastor offered a prayer over Ryan's eye as well.  Many prayers going up!  We definitely felt Holy Spirit bumps today on Holy Thursday (Last Supper). Wow, just wow!  Ryan finds peace in knowing people are praying for his vision to return. 

We have two more appointments next week, one on Tuesday (9:30) and one on Thursday (9:25).  I'm planning for Ryan to only miss part days for these since they will be just check ups. They don't want him to go too long between visits and we/they are leaving for Spring break. (I think everyone needs a good healing break!) So they want to see him again next week.  Sigh...lots of driving.  Anyway, it is for a good reason. 

- March 29th - 4th Retinal detachment - retina detaching at 12 o'clock position and contained by laser.

We heard those dreaded words today at Ryan's appointment.  Ryan retina is detached!

Ryan has another detachment (4th one) due to PVR scar tissue pulling and putting traction on his retina. The good news is that the detachment is behind the laser that the doctor put in a few weeks ago and that with his oil in place it shouldn't go further. He also has some "young" PVR scar tissue at 6 o clock that is putting traction on the retina. See picture...He has no vision in the left eye.

Dr. wants us to going on vacation and wants Ryan to "be a boy" before we have another surgery.  Will do more for his mental state, and our families mental state.   Surgery will be within the next month. Nothing he has done has caused this. Just so much inflammation and scarring on the back of the eye. The good news also is that the front of his eye is looking better...cornea is healing.

Ryan doesn't really want to talk about it.  At lunch today I offered, and he said that he just wants to talk about happy thoughts.  So, I got all my crying out here at home before he comes home. :-)  

I don't even know what to say at this point.  It is getting really hard to be positive and stay strong. I was at the church this afternoon.  Praying for strength.  The pastor is going to give Ryan the sacrament of the anointing of the sick on Thursday before his next appointment. We need divine intervention.

I feel like I'm on a slippery slope and cant get to the top with this kid.  Makes me so sad to see him have to suffer. 

Thanks for all the positive support you are giving him at school.  You are all like family to him and us.  You make our lives easier.  And one day at a time we WILL get through this.  

Dr's notes on where Ryan's eye is developing scar tissue and detaching

I went to the church, found Liz and cried...

March 31 - Annotating and Cornea Apt:

April 1 - 10th - Spring Break Trip to Alabama

Meeting Ian and being a "boy"

We met up with another Stickler's family for brunch on our way through Alabama! Ian is Ryan's brother from another mother. These two have too much in common: Stickler's, Pierre Robin, 2 cleft palates, 6 detached retinas, and 48 surgeries between the both of them! Great to have the support of this Momma for sure!

-April 15th - 5th Retinal detachment - retinal detachment at 6 o'clock due to PVR pulling toward macula.

Just wanted to update before the weekend. 

We were at the retinal specialist with Ryan this afternoon. His PVR (scar tissue) at 12 oclock that detached two weeks ago is still contained by laser. The PVR (scar tissue) at 6 o clock is now detaching his retina and pulling toward his macula. Dr. can't laser to contain since it is so close to macula. Dr. wants to do surgery to fix all of this, but wants to wait until his eye settles down a bit more. He wants Ryan to be at least 3 months post-op. So, we are waiting another 2 weeks. We will at that time probably schedule surgery...I'm trying to push it back as long as possible. This will include a vitrectomy, more oil and face down time. Basically starting over. He is already on the highest dose of Steroid, his pressure has stabilized with no drops and his getting calcium deposits on his cornea. His cornea is still extremely dry.  He has no vision in the left eye.

In the mean time, we are meeting with another retina surgeon locally to see what he has to say.  A second opinion. 

This was the worst anxiety Ryan has had going to the Dr.  Just so conditioned about bad news.  So sad that we can't get his eye fixed. If I could take this all away I would.

We are going to let him go outside for recess for the next 2 weeks...he has been instructed that he just can't go wild and get bumped.  He can go out and walk around, get fresh air, etc...  I just fear the other kids.  He is well aware of what he can/can't do.

He is still on the NO GYM list.  

We will continue to walk this bumpy road with him.

April 21, 2016 - Met with Dr. Josef Gindzin - 

I took Ryan to another retina specialist today. A second opinion on Ryan's very complicated situation. I was secretly hoping he had some magic pill that would make everything better. He didn't have one, and it seems that we are doing the very best already for Ryan. I guess I needed to hear that for peace of mind. His poor retina is detaching in 2 locations (detachment #4 and #5) in the left eye due to SCAR TISSUE!!! However, he said his retina looks very healthy for all the trauma it has undergone and he would do another surgery ASAP to not risk losing more. So, we will move forward with HEAVY PRAYERS and surgery #16!

I called our surgeon and he wants to do the surgery May 2nd. I asked if it could wait until summer.  I KNOW Ryan is loving being back to school and doesn't want to miss out on all the fun stuff that he missed out on last year. (Mother's Day, Field Trips, Camp-Read-A-Lot...etc...)  I don't want him to miss out either.  If it was up to me we would wait.  

His retinal detachments are progressing and getting worse by the day and they fear a tear which would just set us back even further.  They said the sooner the better and they don't want to wait.  It is with a heavy heart that I had to make the surgery appointment.  We haven't told Ryan yet.  

He has no vision in his left eye and we could not do the surgery and just let him continue to go blind.  I just don't think we are ready to give up, hearing that his retina is still healthy.  So completely frustrating.  Especially with all the stuff going on with Patrick right now.  

My mother-in-law came to the appointment with me today and decided to take the kids back to Lansing with her for a few days.  For several reasons: She hasn't seen them all winter since they were in FL, to give me a break to deal with Patrick, and since Ryan will be laid up for a while she wanted to spend some time with him.  So, Rachael and Ryan won't be in school tomorrow. 

Ryan will likely have to be face down again for a few weeks after surgery. I'm hoping that he heals quick and can be back to school for the last few weeks of school.  Thinking optimistically.  

-May 2nd - Surgery to repair detachments and remove scar tissue. Dr. Aaberg

Ryan had another eye surgery yesterday. It was a long surgery. The Dr. spent lots of time on Ryan's eye. He did the vitretcomy, removed the scar tissue, and removed his silicone oil which allowed his retina to lay flat. Yesterday was a different from the start...and I'm hoping that yesterday's surgery was THE ONE! The ONE that works. The last ONE. The doctor did something different yesterday. He placed a gas bubble in Ryan's eye instead of placing oil. It will be imperative that Ryan stays face down for the next week or so. The gas will remain in his eye for 6 weeks and then naturally dissipate. The most effective time for the oil will be the first 3 weeks. He will be out of school for at least that long. :-(  So, this also means we won't need ANOTHER surgery to get the oil out. He will remain on the steroids for about 3 more months. As that is how long the waiting game will be to see if Ryan develops more scar tissue.  He will likely need to have another steroid injection under anesthesia in the next several weeks. They really sedated Ryan during this surgery. It took a long time for him to wake up, and he still is pretty groggy. 

We are talking just saving his eye at this point...what ever vision comes back will be a miracle. Pray for his retina to stay attached. Pray that he doesn't develop any more scar tissue that rips his retina off. Pray for some vision to come back. Pray for his and my sanity. This has to be the ONE that works. One year ago, May 3rd, Ryan had his first detached retina. We have been dealing with this whole situation for one year! This has to be the one that works!

Just wanted to update so you knew what was going on.

We go to the dr this morning to get his patch off and see how things are starting to heal.

May 4th -

 Ryan had his post-op yesterday, and they took off his patch, which is the worst part of the whole process in Ryans eyes. Things are looking good as they always do day 1 after surgery. It is going to be über important for Ryan to be face down all the time for the next week or 2 with this gas bubble in. Dr Aaberg said that it was so important that he needed to give Ryan something special to do face down. ️His whole office staff, nurses and he pitched in and got Ryan a HUGE Lego set to keep him busy face down (he had to promise he wouldn't build it all in one day). We couldn't believe it! They have sort of fallen in love with Ryan over all of our visits. Dr. Aaberg said Ryan was one of the bravest, strongest 7 year olds he has ever met; his hero! What a special Dr we have!

Ryan had been SO GOOD about being face down. He said that he does it "because I just know I have to!"

Ryan has been so philosophical about life this time around. His Grandma heard him talking yesterday and just shook her head at him. Couldn't believe a 7 year old was speaking...

May 5th - 

Ryan had a retina apt this morning. His retina is flat, gas fill 90%, and good positioning dot on his cornea. (That means he's doing a good job being face down!) He seems to be healing. Dr was happy! We are too. He has to continue to be face down for about 10 more days. Would like him to be 2 weeks face down with the gas in his eye

May 11th 

Ryans chugging away at being face down! He still has a smile on day 10. I don't know how. We are doing it, one day at a time!

He just wanted to say "Hi" from his facedown chair. Hope you have a good day!

May 13 - We had GOOD NEWS at Ryan's retina appointment!!!!



Finally!   In words of the Dr....Ryan's eye looks happy!!!  His pressure was normal, his cornea is happy and healing (which I could tell too), his sutures are healing on the outside and his retina is flat and attached on the inside!  He has a 90% gas fill still.  This is good.  The gas will slowly dissipate over the next 6-8 weeks.  His eye is really red, but healing, and better than compared to previous surgeries.



He has to continue to be face down for a few more days, but then can be face up with restricted activity.  At this point we will keep him home through next week. But perhaps we can send him back to school the following week.  Dr. said no gym or no recess.  He just can't be too active.  Dr. said he would like to keep him in a bubble for 4 months, but can't do that.  Wish we could too.  He will remain on steroids, however we got a lowered dose.  



This is the ONE!!!  This has to work!  



Please continue to keep praying and keeping us in your thoughts. He has 3 more months that the scar tissue could develop, but at least we are moving forward once again!!