ROP and Vision 2010

Today was Tyler's eye appointment with his previous Opthamalogist Dr. Larsen. It has been almost 2.5 years since we have seen this particular doctor and so Tyler has done some growing and changes. But not to many growing and changings that we are horribly concerened.

Most of the appointments for him right now are maintenance appointments. Meaning we have a baseline that we must keep in order to be deemed healthy by that particular doctor and to extend our visits from once a year or 2 times a year to longer. At each specialist there is something in particular they are looking for.

The picture above is Tyler waiting to do the cue cards that help identify what acuity he can see at. These are pretty cool cards and Ty had a great time pointing to the stripes. As they get smaller together and harder to see you see him pointing at the pin hole that they tech looks through to see if there is actual recognition that they see it. When you see that you have a few more cards to go and he isn't seeing them sometimes you feel a little more sad. But Ty did really well. His acuity is somewhere around 20/260.( He can see an object at 20 feet that I can see at 260 feet) That is bad... really bad

The acuity charts are not done in the exam chair. They are done sitting by me in a regular chair. Tyler is then moved over to the exam chair. And yes... this is really what he does. He gets so so so so sad. And he knows what is coming. They put on a movie for him where they do the eye screening. So as you can guess, he can't really see that far. But we moved fast when he thought Lighting McQueen was Roary the racing car.

A long with the idea of the REALLY in depth exam you have all the scary equipment you would see otherwise in a eye exam room. But to a blind 3 year old you can't help but want to be curious and scared at the same time. So I usually let Tyler explore his surroundings as we get use to them, he lightens up until the doc comes in.

The Moran eye center is one of the best in the nation. they have all the high tech things for them to use and for us to get the best care ever. The above piece of equipment helps test glaucoma and the below helps put the images on the screen according to what the person can see.

Along with all the instruments, computers etc, we sat right there while they dialed in and pulled up Tyler's last CT scan he had at a different hospital, the dictated report and all the information they needed for Tyler.

Now for the boring but mom finds interesting part:

The image taken is me sitting in the exam chair and with the no zoom and no editing in any way picture is what Tyler can see. Meaning with his glasses ON he can only see objects 20 feet ( or the space between the chair in the eye room and the chart) that are this large. Anything smaller he can't see. His prescription is a -9 and it hasn't changed in a while.

I still didn't get how or what he saw or why it was so hard for him to wear his glasses. So settle in!

My glasses are -5 and -6 respectably but I have a astigmatism which means I don't have clear vision and it is kinda messy. I can't see pretty much anything. I see shapes, sizes, outlines. I see what Tyler sees with his glasses.

His eyes are not being correct to see what you and I see. His are being corrected so he has some vision. He will not be able to see "perfectly" but will have to have what he sees enlarged in front of him. He needs it enlarged 260 degrees or almost 300 times larger than regular print.

The exam to get his prescription is VERY traumatic, his eyes get dilated and then he has to be literally held down with his eyes pried open. I am the one holding he is the one moving and the doc is the one dodging the bullets of his feet. It isn't pretty. Ty is WORN out over the exam. He can use a magnifier but really that makes his brain work harder to see.

When I take my glasses off I can see my hands up to a certain point then they go fuzzy. That is how his are but his fuzzy if closer and his fuzzy is harsher. So from ten feet away the only actual thing he can see is the Door handle the rest is just a blur and an outline.

Ty's doc is getting some stuff ready to send to his school for better modification for him. And now we can answer some questions.

Like why at Chickie cheese when it is loud and a lot of people and things going all over can and does he get overwhelmed? The answer: because he can't SEE what is going on. His ears, which are fine, can hear but his brain and eyes can't see it.

Why when he gets to the top of a play ground place does he freak out and won't go down the slid? Answer: He can't see the ground. He doesn't know where he is going. He can't see me, he cant' see familiar.

He doesn't like to wear his glasses because we have always brought his world to him. He has no peripheral vision at all. He only has his little big of central vision that is there. It may get a Little better but most generally this is it.

Long term: He will NEVER drive a car.

* These are not NEW findings for us as parents, just better information as to how and what he sees. He even Showed me what he could see using what crappy vision I had. It was more for others who are still "learning" his visually extent."

Vision for 2010!

Tyler has a disease called Retinopathy of Prematurity that only effects children that are born BEFORE 32 weeks. Low Birth weight and gestational age play a HUGE part in this disease. Some are only mildly effected but for us that isn't the case.

Tyler was diagnosed close to his go home date with ROP stage 3 PLUS disease. This advanced stages of retinopathy was "discovered" before retinal detachment so he does have some sight. He is at risk for retinal detachment for the rest of his life.

Eye exams for kids Tyler's age are not pretty. Because he has them often he HATES them. He screams and kicks and freaks out. His eyes are dilated almost every time and we rarely get any real answers. Meaning because of his other delays ( especially in speech) we still do not know what he CAN see and what he can't see. It is basically a educated Medical guess.

Visual impairment is something that we feel is a huge mystery only because we don't know the extent of what he can and can't see. Tyler has nystagmus as well that is from head pressure that has ruined his optic nerve. He also has a coloboma which makes his eyes let in to much light. It can make your vision even worse. ( the picture above shows that his special eye, which is a coloboma)

For those who are interested ( or don't think that we have it "bad" or they have it "worse") or have questions regarding his ROP please email me or let me know so that we can bring back answers for you. His appointment is tomorrow at 1 if you would like to go. Tyler needs to be seen every 4-6 weeks at this doctor so more appointments will be coming. His Doctor is more than happy to have visitors with LOTS of questions.

Eye appintment... and a preview

This past Friday we had our eye appointment. I had my day planned out and that was on the top of the list. Ty got up and we got him ready for school. He even put his glasses on and was waiting with his stuff out the door for the bus to pull up. It never came.

Before I called Transportation freaking out, I logged online and checked the school calendar. Just maybe I missed a short day or something. BUT, low and behold, school was out on break because of Easter.

At first I was a little mad till I realized that it just made it better for me. Now I HAD to get up and get going. Me and Ty made our grocery list and priced matched almost everything on it. I got myself all ready to get out the door and we headed off to walmart.

While we were at Walmart we dropped Dallas Jeep off to get serviced and somewhere between there and the grocery part we lost our list. I was so mad. I had to go off memory and that also meant I wasn't going to be saving a lot because I couldn't remember all the price matches.

We went about shopping and headed home. We didn't want to be late to the eye doc. His office staff is, well, less than nice about you being late. We grabbed a burger for Ty and headed to the office. Our appointment was at 1:00 and we got there about 12:40. The doors were still locked. The office staff stood there, laughing, as we tried the door. We went and sat down and 3 other patients came and waited with us. All of us had 1:00 appointments. Weird.

As we were talking to the Eye doc we got Tyler's eyes dilated. Because of his increased ROP and advanced stages of the disease we are always at increased risk for retina detachment. Ty is watched very close. We discussed a few things and the doc just watched Ty interact with me and relax a Little. We were then sent out to the waiting room for our ten minute wait.

While sitting there the office staff was yelling at someone who was 15 minutes late for their appointment when half of the waiting room had appointments 20 minutes earlier that hadn't been seen soon. They are a horrible staff. I have left and found new docs for better staff.

Anyway, we get called back in and we discuss the what ifs of getting this exam. If he wasn't able to get it we would get with Ty's ENT and do a combined exam. Lucky for us, Ty was as cooperating as much as he would. He was screaming, kicking and gagging. But we got what we needed.

His Nystagmus is getting better and as he uses his eyes more he gets null zones or places where his movement stops. As he gets a little bigger and we get his shunts more stable we will look at surgery to help fix this movement. ( Our friend Lucy just had it done by the same doc.) We also looked at what would be better for Tyler as far as school environments and preschool programs.

Dr. S and I think it would be a awesome idea for Ty to at least try the foundation for the summer program. If all goes well we might look at the foundation for preschool next year. They run longer hours and more times a week. They are more specialized to work on his vision along with all the rest.

Overall his prescription hasn't' changed. He will be getting the same type of glasses for next year. Might need to go look at new ones. I hate his current pair.

He threw a few really good temper tantrums on Friday and also went and picked out his cousin Morgan's birthday present. I am always bad about mailing things so we are working on EARLY for her, late for her mom.

He picked a book and when we got home he shared it with his dad only to throw the worst tantrum we have seen in a while. Poor kid just can't get his point across some days.

Saturday we had some bad news about my grandpa Rue. He is sick and needs to be in the hospital. We are hoping that as the week goes on he can get better and his lungs can recover and he can be back up and going. We are praying for my mom and her sisters to have Comfort.

Today was Easter and we have a MILLION pictures and I have a whole post waiting for the pictures to go with it. So stay tuned tomorrow.

But for now... a preview

Ty was signing more because all of his eggs were in the colors and he LOVED it. Wait till you see the rest.. He was in dirty heaven.

Halloween pumpkins

I wanted to take Tyler and Dallas to a pumpkin patch. It didn't happen but me and Tyler went to the next best thing... Walmart! We bought 3 pumpkins last night and planned to carve them all today. We got 2 of the 3 done.

Tyler was not interested in it. He touched the guts of it but he was not interested to sit down and help doing anything. Instead he preferred rocks, and sand.. LOTS of sand. I found it all in his hair.

In the middle of carving Ty decided to be mean and crabby so we went to take a nap. Where I have now found little grains of sand in my bed. We went back outside and he played the rest of the sun up time and I carved a pumpkin.


After dinner we took a shower and got the rest of the sandbox out of his hair and went to undo the lights we bought to decorate the window. He LOVED them. At first he was not so sure but he was so excited. He didn't want them to touch his neck but was fine if I had them. He also likes to use his mouth on things. We were told it was because of his vision so he was done on his hands and kneed licking the lights.


Tomorrow is our trunk or treat with the ward and then on Friday we will go trick or treating on our street, spend the night answering the door and playing in the lights!

I can't wait for Christmas. He is going to love it. We have a few activities to do and I am sooo excited.

Special Exposure/wordless wednesday

I was trying out a new setting on my camera and also wanted to capture Tyler and his light sticks. He was given light sticks for his birthday and at night we go outside and play. This night we turned out the lights and let him go at it. He LOVES his chair and the lights do a great job for his eye"Therapy."
Plus he is super SUPER cute!!

For more go HERE,HERE and HERE, oh and HERE!