Answering your questions

It was 52 degrees on Wednesday so we went to the park!

I got lots of great comments and questions in response to the "De-Lurking" day post. Your comments really do keep me going. I love seeing "unmoderated comment" pop up in bold letters! It lets me know that I'm focusing on things that interest you and that I am providing valuable information to other parents and friends.

Why does Tommy wear contacts? Does he have some vision?

During the vitrectomy surgeries Tom had when he was very small, he had to have his own lenses removed from his eye so they could do the work they needed to do. His own lenses were abnormal anyway. Without your own lenses you are "aphakic" and usually wear special contacts like Tom does to allow the eye some ability to focus.

When Tom was first born he barely opened his eyes. After he has his first vitrectomy at two-weeks-old he began opening his eyes more. But without lenses his eyes just sort of rolled around and never really fixed on anything. When Tom was four months old he got his first contact lens and his eye was like BAM! Straight ahead, no more rolling! That's how we knew they were doing something for him.

Contacts are in!

Tom has the ability to see light and darkness. He will turn to light sources like a flashlight if you shine it near his eyes. Even his left eye, which is much more damaged than his right, responds to light. 

So does he have some vision... Well, we think so. You can do a lot with just the ability to see light. It can tell you where doors, doorways and windows are that can act as navigational landmarks. He moves with such confidence in our house but a lot of that is memory. What is impressive is when we go to a new home and he navigates around large obstacles like a large kitchen island and finds hallways with ease. 

When his contacts are in he keeps his head up more and his eyes open. There were times when it was just impossible for me to get good pictures of him. But now that his glaucoma is under control and he contacts are in he keeps his eyes open. That makes me think he is getting some useful information from his eyes and that's enough for me!

How did we get services for Tommy?

MEDICAL- It all started in the hospital when he was born. Tom caused a stir when he was born and while I hated the whirlwind of doctors and specialists that were coming at us from all angles then, they also got the ball rolling for us. It set things into motion that would have taken me months to find myself.

I left the hospital and went right to the Children's Hospital of Pittsburgh to see Dr. Lope, who is still our pediatric ophthalmologist today. She sent us to Dr. Olsen, a retinal surgeon here in Pittsburgh, when Tom was just five-days-old. Dr. Olsen sent us to Dr. Capone in Michigan because he thought Dr. Capone had the best chance of helping Tommy. We still see all those doctors and they have been instrumental in getting Tom where he is today. We were very lucky to find great doctors right away.

The other part of the story is THERAPY! When we left the hospital after I had Tommy we had many doctors appointments already scheduled. We had also been set up to have an evaluation with our local Early Intervention provider. Early Intervention is a program for children, ages birth to three, who are not meeting their developmental goals. Without vision, everyone knew that Tommy would have difficulty reaching these goals on time and knew he would need these services. 

He started with only vision therapy once a week with a very sweet woman. She snuggled my little man and got right up in his face with black and white toys and noisy little shakers. She helped me keep him stimulated and interested in the world around him. She showed me how to use a boppy pillow to bolster him up so for tummy time like this.

Tummy time on the boppy.

Then, on the advice of our pediatrician and neurologist, we asked for physical therapy (PT) for Tommy because of his hypertone. Tommy was born with very tight muscles. We just thought he was a crazy strong baby but it was actually a medical condition. Through weekly physical therapy we have seen lots of improvements.

When Tommy was born he couldn't raise his arms up the whole way because his muscles were too tight. Now he has full range of motion in his arms! Hypertone doesn't go away; it's the way his brain communicates with his muscles. It sure isn't slowing him down now, though.

We added occupational therapy (OT) when Tom was refusing his bottle and not showing any interest in eating solid food at about seven months old. This has helped with everything. Basically, PT is work with big muscles like walking and climbing and OT is little muscles like fine motor skills and oral skills. His OT seems to work on a little bit of everything and I think it sort of helps with everything. He adores her and she gets a lot of work out of him. 

Eating with Dad.

When Tommy's weight was low they added a nutritionist to our services. She became even more important when Tom got his g-tube. We tried many formulas until we found one he could tolerate. Our nutritionist had lots of connections with formula reps who gave us free samples to try until we found a formula that worked. That was awesome. She encouraged me to give Tom green tea and probiotics for his stomach. They helped a lot! We still use green tea to flush Tom's g-tube instead of water.

When Tom turned two he still wasn't talking very much so I asked for speech services from Early Intervention. He is improving. He comes alive with music so we are using song to get him to speak. Someday our house will be like a musical!

At feeding therapy

Tom still wasn't progressing with his eating so I sought out a second feeding evaluation; this time at the Children's Institute of Pittsburgh. Now Tommy gets one hour of oral motor/feeding therapy with a speech language pathologist and one hour with an occupational therapist at the Children's Institute of Pittsburgh.

Are you counting? That's 6 therapy sessions a week with two additional nutrition sessions per month. So we are busy, but it's all helping. I have learned so much from his therapists. I can't believe I have to give them up when Tommy turns three:( At age three your school district takes over and provides your services in Pennsylvania.

How to get therapy? ASK! And then ask again. Ask your early intervention program coordinator if you think your child needs additional therapy. Ask your pediatrician for a referral to Early Intervention or call your local Early Intervention directly.

I got no results from our first feeding evaluation so I got another from somewhere else. You have to be thorough and just keep looking for new options. We are lucky to live in Pittsburgh because there are tons of excellent hospitals and specialists here.

My advice is to read all the newsletters and emails you get from the organizations that service your child. Ask if they have play groups or story hours. You never know what programs are out there. Start asking and start checking websites. Most organizations are on Facebook. Friend them on Facebook and you can find out about their programs as new things become available. 

What is harder? Blindness or the other medical issues?

That is a hard one. We were so excited to be parents when Tommy was born. We had no idea he had any medical issues and were completely unprepared. We just wanted to be happy and enjoy our new baby, but we were scared. Really scared.

Tommy after his first vitrectomy surgery.

I remember that a pediatrician came to see me when we were still in the hospital after I gave birth to Tom.  She was sent by our regular pediatrician to check on us. I must have been a pitiful sight. She found me alone in my room, pumping to get my milk started and crying. She hugged me and asked if my mother was in town and if I had family close by. I said I did. Then she said something very important. I can't remember it exactly, but she basically said, "I know things seem awful now, but remember, your baby is going home with you. Not everyone is that lucky."

It's true. If you only focus on what's wrong you will never be able to enjoy what is right. We had a healthy baby, he was just a little different. We tried very hard to enjoy our baby instead of focusing on all the surgeries and doctor appointments we had.

I would say that the blindness was the hardest at first because it was the cause of all those surgeries. Now  we are adjusted to his blindness; it's really no big deal anymore. He is just like other kids. He dances to music and climbs the stairs. He can go all around the house and find what he is looking for. He just trails the walls and off he goes. His mobility is impressive.

The other things...
Food and sleep were his other things. Tom started refusing food at about five months of age. It got worse and soon he was no longer on the growth charts and we were scared. I struggled to get every ounce of food into him. It was awful and I didn't understand what was wrong or how to help him. And then I felt like a failure as a mother cause I couldn't even get my child to eat. It was a very low point for me.

Tom was hospitalized several times for dehydration/food refusal that first summer of his life. We didn't go anywhere that summer because he was never well hydrated. We realized he needed a feeding tube so we agreed to have a g-tube inserted at his next eye evaluation under anesthesia. He got his tube just about two weeks before his first birthday.

It was a massive relief to know he was properly fed and hydrated. He gained weight and grew well. But now the old solution became our new problem. Here it is, a year and a half later, and he still has the tube. But we are finally seeing some progress after lots of feeding therapy. Tonight he enjoyed some spaghetti, fried eggplant and strawberries! His interest in food and the length in which he will attempt to eat has grown so much. We are finally getting somewhere.

And Tom never slept well. As a baby, Tom used to wake up when my head hit the pillow. It was like he knew! I spent many night sleeping propped up between pillows with him in the crook of my arm. When we tried sleep training he cried until he threw up. Eventually we tried melatonin and it helped him fall asleep at a normal time. I no longer party like a rock star until 2:00 am with Tom. We go to sleep around 10:00 or 11:00 most nights. I am no longer a creature of the night. Personally, I think he needed some time without surgeries to grow and develop before he could work on sleeping without me. And that melatonin is liquid magic.

So basically, I had a baby that couldn't see, had very stiff muscles, wouldn't eat and wouldn't sleep. For a long time I just survived and tried the best I could. I am being totally honest here. I hope I don't come off like I have all the answers because I don't. I am just trying my best and learning as I go.

I knew no one with a child with special needs when I had Tom. I knew no one with a blind child or a child that wouldn't eat. I felt very alone. That's part of the reason I started this blog. I wanted people to know that Tom is more than his diagnoses. He is an amazing little man and he has come a long way. We both have.

He is resilient!

He is happy!