Tuesday, January 31, 2012

At Home Vision Therapy Kit

During our first two evaluations at Pediatrics Plus with the occupational therapist there, Brian and I both noticed a lot of the items she was using were toys or things that would be easy to buy (if we didn’t already have them) for our home. In his eval, we spoke with Jamie (the OT) about how to practice with him at home in between therapy sessions and she gave us some pointers and objectives to work on with Liam at home. We went out and found or bought similar objects to the ones Jamie had used and a file box to keep them in so that when we were not using them to practice with Liam he couldn’t play with them or see them. (This helped keep his interest during the therapy sessions because they were toys he didn’t normally have at his disposal to play with.)Below are pictures of the items we found with explanations on how we use them for Liam’s Vision Therapy.

At home kit:

1. Brightly colored cup-any colorful container will do (we put smaller objects of contrasting colors inside it for Liam to reach in and use his pincer grasp to remove them)

2. Mardi Gras Beads- any bright reflective beads would work (Important: must be able to rattle and make noise and have flashy reflective surface) We work on saccadic movements with these. (rattle one to the right of his head and hold his attention there for 3 seconds, then switch to the other on the left dropping the right ones to shift his focus to the left ones for 3 seconds. Repeat going back and forth to practice quick focus shifting from one object to the other. This helps when one day he wants to drive so that he can look away for the road and quickly return his focus to the road.

3. Usborne Touchy-Feely Books- “That’s Not My…” texture books. Great textures on every page and great color contrasts. Great for visually impaired kids and there are dozens of them. (“That’s not my Monkey”, “That’s not my truck”, etc.) And they are only 5 dollars on walmart.com.

4. Wooden Squares- These range in size and color from 1cm to 2inch squares. We use them to work on Liam’s grasp and pincer grip. (picking them up from large to small with 1 or 2 fingers and his thumb.)

5. Colorful Connect Boats- work on pulling apart and picking them up. (Great for chewing on!)

6. Yellow and Black Peg Board and Pegs- We could only find a yellow peg board but since kids with Nystagmus do better with bright colors on dark backgrounds we covered one side in black and left the other yellow. This is used on Liam’s fine motor skills to get him to find the tiny holes and put the pegs in or take them out. Helps with grasp and pincer grip.

All of these things are easily found and can be put together to make your own at home Vision Therapy kit if needed. All of the toys/objects are used with certain tasks designed to improve Liam’s fine motor skills and he really likes the extra play time!! It’s so great to be able to help him at home and get some learning time in too!



Last week we had Liam’s MRI at Arkansas Children’s Hospital to rule out Neurological Nystagmus. It was an extremely long day (esp. for Liam since he was not allowed to eat or drink for 7-9 hours prior to the procedure!) but he did awesome! He was, to our disbelief, very patient and content all morning until the procedure and handled the anesthesia well (even though Mommie did not!) They had to sedate him completely and intubate him for the MRI (to hold him still long enough) but he recovered fine with only a minor cough from the throat irritation. (He took the whole thing much better than his blubbering mother did!) When it was all said and done a stuffed dinosaur (with fun textured fabric) from the ACH gift store was his reward for letting them poke and prod at him all day. We were able to get the results that same day and praise God everything came back NORMAL! From what I understand, a normal MRI result rules out Neurological Nystagmus so next we will focus on Sensory Defect Nystagmus. Here are some of the photos we took that morning before and after the MRI.

Saturday, January 21, 2012

Be Careful Little Mouth What We Say

When we were kids we all heard the nursery rhyme that goes "be careful little eyes what you see, be careful little eyes what you see cause the father up above is looking down in love so be careful little eyes what you see." then it continues with "ears what you hear" and "mouth what you say" but did we ever really take that to heart? This last week at work I was reminded of that song and it's been something I realized a lot of people, even sometimes me, don't take to heart. This past week a set of new parents with a beautiful healthy new baby came in my work for a check up. As they checked out at my desk the dad started to pick at the week old infant and nudged his wife to look at their little girl "look at what she's doing with her left eye" he said. "Stop picking at her she's fine" his wife replied, "he's such a worry wart can't leave her alone," the mom tells me. Dumb me, I had to ask "why what's she doing?" (just out of polite conversation .) "Her eye is like twitching its creeping me out because it won't stop,"he tells me. I politely reply that it's probably normal but he stops me adding " it's like those creepy kids whose eyes do that shake thing," he says using his finger to illustrate his point wagging it back and forth. "those kids creep me out man!" he says. "Hun stop it she's fine!" his wife scolds. "what I'm serious it's creepy!" he continues "those kids are creepy," and he adds a fake shiver. I couldn't move my mouth. He was talking about kids like Liam, my Liam, he was talking about MY kid! The second they walked out I had to bury my head to cry at my desk. I had worried kids would be mean to Liam but I hadn't considered adults, adults could be meaner. As mad at that dad as I wanted to get I had to stop myself.... Truth is I'm as guilty as that dad. Before Liam was diagnosed I might have said the same thing (secretly) about kids like Liam or with some other strange condition. We all do it, even me, so how could I scold this dad for what he didn't even realize he was doing wrong? As I thought on it throughout the rest of the week the only thing I can resolve to do is to be sure no matter where I am that I'm careful what my mouth says and remember that we are all made in the image of God. Each of us, my little guy included, are exactly what He intended when He knit us together from head to toe and everything in between. 

James 1:17    Every good and perfect gift is from above, coming down from the Father with whom there is no variation or shadow due to change.

Gen. 1:27      So God created man in his own image, in the image of God created he him; male and female created he them.

Wednesday, January 11, 2012


In my research I have found a great many websites that offer a lot of information on nystagmus in children.

Nystagmus : a condition of involuntary eye movement, acquired in infancy or later in life, that usually results in low or reduced vision. There are 45 types of nystagmus and many of the causes are not known.
People with nystagmus:
1. Have poor distance vision which cannot be corrected with glasses or contacts
2. Vision will become worse when tired, frustrated, or under pressure
3. They need more time to see things and like to get up close to people and things
4. They usually have a null point. A null point is one direction in which the vision slightly improves more than other directions and they may adjust themselves to see out of that point. (May tilt or turn their heads to see from their null point)
5. Most people with nystagmus are not aware of how different their vision/eyes are from those of fully sighted people.
6. There is no cure or treatment that stops nystagmus but rather than getting worse with age like most individuals eyes do nystagmus tend to improve with age but does not stop all together.
I have found so many websites to help with my research and several blogs from other parent’s points of views but here are just a few.

Liam's First Day of Therapy

Today was our evaluation at Pediatrics Plus for Liam to see if he would need vision therapy or not. We met with an occupational therapist named Jamie for a little over an hour but it was a very productive hour! She and another therapist from Little Rock went over many tasks trying to see what Liam could do and what he needed to work on. They used so many different types of toys such as light up pens, tennis balls, rattles, Mardi Gras beads, blocks of all sizes, and more. She said that Liam was almost completely on track with his age group and that he tested at a 6th month level (even though he is 7 ½ months). They worked on his tracking (using his eyes to follow movement through his field of vision) and on his fine motor skills like grasping large to very small objects. Jamie said that Liam tested low on two of the points they score on but high on two in the next age bracket for 9 month olds. They then scored Liam on a scale to report to his doctor and went over different things we needed to work with him on at home between now and his next visit. The therapist said that she would recommended that Liam come in once a month until he is past one year of age so that they can keep track of his development and make sure he did not start to fall behind in anything. For the first time since this whole journey started Brian and I felt like someone finally understood what we were seeing and that someone had a plan we could stick to in order try and help our son’s future. Up until now it was “go here then go there, then if they can’t help with that go here, then we will see from there.” No definites, no I can help, no anything. The “no-one knows what to do next” was very frustrating! Now we have a treatment plan and that has been the most comforting thing the therapist could have ever said to us as parents.

Liam's Story

A lot of the questions I get (and still have myself) are about what Liam’s diagnosis is exactly. When people see Liam’s eyes start to bounce in their “tick tock” manor they think he is controlling it or somehow making his eyes do the wobbling but that is not so. For people with nystagmus (which is Liam’s diagnosis) their eyes move uncontrollably in horizontal or vertical rhythmic movements. It is permanent as there is not a cure or many treatment options for it but as far as we know it does not get worse like normal eye sight does as we age but only improves with age. For Liam, his nystagmus is horizontal. We first noticed his eyes “shaking” when he was about 6 weeks old, everyone brushed it off until Liam was about 8 weeks old and they were still rapidly shaking. One afternoon Liam came by my work to visit my coworkers with me and as our APN was playing with him she noticed Liam would not track a toy she was offering him. She then pulled us aside and began to examine Liam and his eyes intently. She explained that she needed to get us a referral to Arkansas Children’s Hospital immediately because she was very concerned that Liam may not be able to see. From that moment on our heads were in a spin! The one thing you never want to hear especially as a new parent is that something could or is wrong with your seemingly perfect child. We spent the entire weekend in tears and prayer, stressed to the max! The next week we were off to ACH to see a children’s ophthalmologist. He basically could only tell us that Liam did have sight because his eye structure was fine but that we would not know how much until he was much older. We left unsure of what to do next so of course like anyone would do I turned to Google. I researched everything I could get my hands on for the next few weeks. We consulted some families who had been through the same thing and found some “next steps”. We requested an MRI to rule out any brain lesions or tumors and requested that we be sent for an evaluation to see if Liam would need therapy to keep up with other children when he was older. As of right now we are still waiting on the appointment for both later this month but have had some promising response from the at home vision therapy we have been doing with Liam. He is now 7 months old and can track bright colored toys and plays with anything in sight. We have found that he really likes high contrast in his toys like bright colors with dark backgrounds in books or reflective surfaces. He gets very anxious in crowds like at our church nursery but we assume it is because he relies on his other senses like sounds and such much more than normal infants do. But as far as his pediatrician is concerned we are keeping track very well with his growth milestones so we are staying positive that his nystagmus will not slow him down at all! The bottom line we have found is that Liam is Loved. Period. Whatever comes next we can handle because to us he is perfect no matter what.