Thomas

When he was 11 weeks old he was diagnosed with retinopathy of prematurity. He was born so early that the retinas in his eyes were not mature, so they were partially detached. He had laser eye surgery in each of his eyes two separate times. The doctor told us that he would probably be legally blind and would only be able to tell the difference between daylight and dark. We were devastated, but we kept on praying.

Up until this time he was being fed with a feeding tube. We finally got to give him a bottle. He started out on one teaspoon once a day. The bottle feedings were increased a little every day until he was three and a half months old, then his feeding tube was removed. At three and a half months Thomas weighed 3 lbs. and 9 ounces. The nurses took pictures of him rolling over. We were so excited that he was having good days and that he was getting stronger.

He was almost four months old when he had eye surgery again. This time silicone bands were put around one eyeball to hold the retina against the eye to prevent further detachment. A week later, the same thing was repeated in the other eye.

When he was four months old, we received the call for which we had been praying; Thomas was ready to come home on Monday, the day after Mother’s Day. We were able to stay at the hospital all weekend in a Care by Parent Room. In this special room, we were able to stay and care for Thomas, practice giving him his medications for his lungs and reflux. The staff taught us how to do Infant CPR and how to use his heart monitor. He had sleep apnea, and would sometimes stop breathing in his sleep.

We had never been happier than the day we brought him home. He weighed 4 lbs. and 10 ounces and was 17¼ inches long. We had to go back to Louisville every three months to see doctors (heart, neonatal follow-up, eye doctor); he had hernia surgery when he was four and a half.

“When we brought Thomas home, I decided to quit my job and stay home with him. We had a lot of catching up to do,” says Jennifer. At 9½ months he said his first word, “Da-da” and began crawling backwards.

Thomas was enrolled in First Steps, Kentucky’s Early Intervention Service. He received physical therapy, occupational therapy, speech therapy for feeding issues and a developmental interventionist came to work on visual therapy. VIPS-Visually Impaired Preschoolers provided service as well. They gave us ideas on how to get Thomas to use what vision he did have and to encourage him to use his other senses to explore his environment.

Thomas had more eye surgery at 11 months old. The doctor removed the silicon bands so his eyes could grow. An eye doctor saw him frequently after that to make sure that the retinas hadn’t detached further. They hadn’t.

When Thomas was 20½ months old, he took his first steps by himself. Daddy got to see his first three steps. That made it really special.

Every month he made progress. His reflux got better and he didn’t have to take medication for it anymore. His lungs got stronger and he was able to stop taking that medication, too. The first year we didn’t take him many places because his immune system was weak. Grandma and Grandpa helped us out a lot. They kept Thomas while we bought groceries and during the times when we hadn’t slept for days.

As Thomas got older, we noticed he was able to see quite a bit more than what the doctor first thought. He began reaching for toys he wanted. He was able to find and even pick up his toys. He was able to walk around without bumping into a lot of things.

At age two, we enrolled him in the Head Start Homebase Program. A teacher came out to see him once a week and he was able to continue receiving therapy. Grayson County Schools continued therapy through Head Start when Thomas was released from First Steps at age three.

At three, he was enrolled in the center Head Start program. He needed to socialize with children his age and he needed to be able to separate from Mommy. He’s catching up on his speech and growing by leaps and bounds. He’s learning to play and share with other children. He gets around so well, too. He doesn’t have to use a cane and he doesn’t need to wear glasses right now, but he may need to wear them later.

His eye doctors have not been able to determine whether or not he will need Braille or large print until his vocabulary grows so he can tell the doctors what he sees. Right now, we are introducing him to Braille, just in case he will need it. We are not teaching him Braille; we are just letting him know that the bumps stand for letters. We are exposing him to many different textures and textured books so that he can “see” the pictures better by feeling them. He gets a lot of input by what he feels with his hands.

Thomas is doing better about separating from his mommy and his mommy is doing better about separating from him, too. We try not to be too overprotective because he needs to be independent. We found out last year that he has asthma from being premature. He takes breathing treatments with a nebulizer now.

Thomas loves to walk up and down steps, loves to run and play on the slide. He loves looking at books we check out from the library. He watches TV and enjoys using scissors, playing with balls and playing with cars. He loves painting, drawing with markers and working puzzles. Thomas can write the letter “T” and make a circle. We are working on the letter “h” and making a square. He can identify some colors, but his favorite color is yellow.

Everyday is a learning experience for Thomas; he’s like a sponge soaking up all the information he can. He enjoys working with his hands. He helps Daddy “fix” things with his toy tools. He helps Mommy get groceries, cook, dust, fold and put away laundry, and cleans the carpet with his vacuum cleaner.

We thank God every day for letting Thomas see as well as he can, but mostly for blessing us with our special little miracle.