Low Vison Awareness Month and Heart week!

******* This is going to be a long post, full of medical words and stuff***

Febuary is low vison awareness month along with a special week of Heart defects. Both are pretty near and dear. *

Low Vision is a very real thing for us in this house. So I would love to share a little about both to allow you a small glimpse into a Low vison child.

First of Tyler, due to his early gestation and low birth weight, was at risk for a disease and complication of prematurity called Retinopathy of Prematurity (ROP.)

Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness.

ROP occurs when abnormal blood vessels grow and spread throughout the retina, the tissue that lines the back of the eye. These abnormal blood vessels are fragile and can leak, scarring the retina and pulling it out of position. This causes a retinal detachment. Retinal detachment is the main cause of visual impairment and blindness in ROP.

Several complex factors may be responsible for the development of ROP. The eye starts to develop at about 16 weeks of pregnancy, when the blood vessels of the retina begin to form at the optic nerve in the back of the eye. The blood vessels grow gradually toward the edges of the developing retina, supplying oxygen and nutrients. During the last 12 weeks of a pregnancy, the eye develops rapidly. When a baby is born full-term, the retinal blood vessel growth is mostly complete (The retina usually finishes growing a few weeks to a month after birth). But if a baby is born prematurely, before these blood vessels have reached the edges of the retina, normal vessel growth may stop. The edges of the retina—the periphery—may not get enough oxygen and nutrients.

Scientists believe that the periphery of the retina then sends out signals to other areas of the retina for nourishment. As a result, new abnormal vessels begin to grow. These new blood vessels are fragile and weak and can bleed, leading to retinal scarring. When these scars shrink, they pull on the retina, causing it to detach from the back of the eye.

When we found Ty's ROP he was progressing so fast they called it rush disease. It was in the stage 3 of ROP.

Stage III — Severely abnormal blood vessel growth. The abnormal blood vessels grow toward the center of the eye instead of following their normal growth pattern along the surface of the retina. Some infants who develop stage III improve with no treatment and eventually develop normal vision. However, when infants have a certain degree of Stage III and "plus disease" develops, treatment is considered. "Plus disease" means that the blood vessels of the retina have become enlarged and twisted, indicating a worsening of the disease. Treatment at this point has a good chance of preventing retinal detachment.

Rop can cause other things issues in children. Infants with ROP are considered to be at higher risk for developing certain eye problems later in life, such as retinal detachment, myopia (nearsightedness), strabismus (crossed eyes), amblyopia (lazy eye), and glaucoma. In many cases, these eye problems can be treated or controlled. One of the things that Tyler suffers from is Nystagmus or fast movement of the eye. He also has a a Coloboma in his eye that is a man made one but it makes some of their own issues.

So what does all the medical jargon mean in our everyday life,

• Ty wears glasses
• Ty has very bad eyes. His prescription is -9. Legally blind is -13
• Ty has to work so much harder to see and use his eyes. Not only is it an eye thing but a brain thing. It takes him a lot of effort.
  
• He watches TV up close. We don't know if it is because he can't see or just habit.
  
• He likes touch and feel books
• He has sensory things to some things he doesn't understand because of his vision. He doesn't like loud noises on toys. ( we throw away/and don't buy toys that make noise or move.) Those things make him upset because he can't always see why they are doing things or where they are coming from.
  
• He like light sticks and light boards from the foundation for blind children.
• We don't know how far he can see but we know it isn't "normal" but we teach him that he is normal.
• His eyes are not straight. He looks like he has a lazy eye but they say it is because some parts of it is missing vision.
  
• He has limited peripheral vision.
  
• He may be a candidate to learn braille but he will need to either have a computer or a program that enlarges his print.
  
• He ( as of now) will not be driving a car. ( he he its cause he is 3!) But if he is legally blind he will not be driving .
  

Some things that sometimes get me with his vision is like when he is in the bus and he can't see me. I want him to see me and wave goodbye, not because they tell him to wave but because he can see. Or for him to look up and see a rainbow but he can't see it. Today a airplane flew overhead. IT was very loud. He can't see it and he got scared. I want him to see them.

His vision are the least of the things I think about in a day with him. I know he can see and one of the gifts I was given was that he would be able to see. No matter what he can see that his mom and dad love him. His sweet little face and big blue eyes are what is the most important to me.

In honor of this awareness month please remember the little ones that can't see. Donate a book in their honor with touch and feel characters. Help them use their eye sight. Also contact the local foundation for blind children in your area. They are a wonderful resource.