Archive for the ‘Ocular Motor Apraxia’ Category

Eye Surgery Day


Today, the magnificent, the brave and the happy Cisco Kid (aka DS2) had eye surgery to correct his strabismus (his eyes turned in). He handled it bravely. The worst part was post-op. They had him wake up without me before they called me in (after I told them otherwise) and he was screaming crying as a nursed carried him to me (I’m sure he was so scared). Then he nursed so much he threw up. He was very upset screaming until they took out the IV and dad put him in the Ergo.

Our opthamologist is very experienced with this surgery so we opted to stay with this doctor eventhough the Surgical Center he uses does surgeries for babies through adults. Major contrast to our Children’s Hospital experience. Little appreciation for my anxiety. They had 4 waiting rooms for each pre-op phase and dad and big brother (who unexpectedly had to come with us) had to stay in the downstairs lobby. They also wouldn’t let me go to them during the operation for support. Not bad. They did a good job clinically. Just little compassion.

Once we got in the familiar car, he slept happily. After continuing to sleep for awhile, he nursed well and then threw it up again. Luckily after another bit of sleep, I only nursed him 5 minutes and the milk stayed down. I gradually increased the time as he asked and all has been well so far. Around 3 he played in our laps a little, went back to sleep (I napped too as I hadn’t really slept since 3 a.m.). Played in my lap. Slept some more then decided he was pretty much feeling back to normal. He’s been playing happily for about 1.5 hours. Hopefully he’ll be ready for bed soon. I know I am.

Now to wait and work aggressively on eye exercises. The surgery was done so young to give the best probability of success but his brain could still reject the correction and the eyes could cross again. There are some studies that show combining surgery with vision therapy can increase the chance of success (Unfortunately, Opthamologists and Optometrists don’t often play well together to get a better understanding of this). So far his eyes look much straighter and I not even noticing the OMA today (the surgery is not expected to correct that). I’ve been impressed with how well I’ve gotten him to track things this afternoon/evening. The picture above was taken by dad this evening.

Vision Update


DS2 had his vision therapy appointment today.  She said that his tracking has improved as I’d observed but it seems there is still a slight favor for the left eye.  We are going to move forward with surgery.  It is scheduled for March.  Until then, we are going to keep his glasses on during the waking hours and patch 1-2 hours each evening.  We are increasing the glasses use so that he can focus at a reasonable distance to work on teaming his eyes throughout the day and increase my opportunities to do vision exercises with him.

In other news, DS2 is sitting up without support.  Much like his brother when he started sitting up but a few months later.  He will stay sitting up for 10-20 minutes then falls to the side or back.  I keep a Boppy around him for safe falls.



DS2 had his MRI Friday.  It was a little scary for mommy as he had to be sedated since the scan takes 45 minutes to an hour and requires you to be completely still.  It was a really long hour for me but once it was all over baby was fine.  He continued to nap for about 30 minutes then woke up slowly.  It took a few minutes to get proper sucking down then he was able to nurse.  After nursing for about 20 minutes he was smiling and looking around.  We were at the hospital for about 3.5 hours total.  He napped a little on the way home and slept well that night.  I was very happy with the care and patience at National Children’s Hospital as usual.

Yesterday, Tuesday, we got the MRI results.  No surprising findings.  No tumor and it isn’t Joubert’s Syndrome as suspected.  His brain stem is smaller then it should be (this area controls vision) and another area is smaller then it should be (controls vision, motor skills and speech).  The nerves to the eyes also appear thinner then they should be.  So, his symptoms of optical apraxia and crossed eyes are not surprising nor is his low lone and physical delays.

This does complicate the opthamologists recommendation to do stabismus surgery to straighten his eyes.  Given the damage in the brain, there is a lower chance of the surgery being successful.  The opto-neurologist said it is worth giving it a try and soon but I’m not convinced.  I’ve got to do some more research and sole searching.

All and all, I feel I’m taking this well.  Not sure what to do next.  The opto-neurologist said there is nothing more  we need to do right now but Occupational and Physical Therapy weekly as we are doing and he’ll probably need speech therapy when he is older.  He also referred us to a geneticist to see if we can identify a genetic link.  He says the abnormality does not look like something that I did wrong or brain damage but rather something that occurred early in the development (first trimester).  For now, I like not having a label, as the opto-neurologist said, the brain is plastic and can adapt/change a lot especially at just 8 months old so we just have to keep working on the symptoms and not “type cast” his future potential.

Assessment Data


Here is the assessment for DS2’s evaluation at 7 months, October 4, 2012. This was his first assessment and he was evaluated by an OT and Speech therapist for about 1 hour.

Gross Motor: 2-3 mo (atypical)
Fine Motor: 4-5 mo (atypical)
Cognition: 4 mo with scatter to 7 mo
Receptive Communication: 4-6 mo
Expressive Communication: 6 mo
Self Help/Adaptive: 7 mo
Social Emotional: 6 mo
Part C Vision Sceening: monitor
Part C Hearing Screening: no concern

Evaluation Day


What an emotionally taxing day. DS2 had his developmental evaluation for early intervention by the county. I feel a bit emotionally numb. What they said was consistant with what we’ve observed but so hard to hear and see in writing. Also, some of his delays have been labelled more severe then I realized. He should be rolling and rolling over well at this point, he’s not. He should have visible muscle tone between his shoulders on his back, he doesn’t. His movements are abnormally jerky. He has trouble grabbing for what he wants. He’s much further from sitting up then I expected based on their evaluation. On a positive, he displayed a normal 7 month old behavior when he cried both times (completely crushed) when the evaluator took away the toy she gave him. He engages well but it isn’t clear to me why they have him listed as cognitively delayed, something I hadn’t registered until reviewing the paperwork this afternoon at home. Like I said, rough day. I’m hoping I feel better tomorrow. My boys need me present. My older depends on me for not only love and care but schooling and my little guy needs all the attention I can give him. “Greater Powers that be, give me strength!”

First Nerology Appointment


Today was a long day. While DS1 stayed with our neighbor for several hours making us dinner (yes, I have an amazing neighbor) and playing Legos, Ds2 and I met with Dr. Avery, a pediatric Opto-neurologist, today.  He agreed with the pediatric ophthalmologists diagnoses of OMA and strabismus.  He was impressed the ophthalmologist picked up on the OMA, as it was so subtle.  He also gave DS2 the “Easiest dilated 7 month old exam” award.  He was so tolerant of it all.  Although, DS2 wasn’t so happy with the blood draw later.  The doctor said that he would like to see an MRI but it is no rush.  He felt confident there is no indications this is caused by a tumor or something else progressive (I was relieved to hear that) but an MRI might help us to point to a cause.  Papi and I are still weighing the pros and cons of now versus waiting until he’s a little older.  We are leaning toward waiting until he is 1 or 1.5.

I also wanted to mention, this was the first time I’d ever been to a children’s hospital.  National Children’s felt so welcoming.  Everyone was so helpful, even random people in the halls offered to help when I looked around confused.  I enjoyed all the bright colors.  I spent a fair amount of time at the hospital with my mother this summer.  It was so depressing.  All hospitals should have brightly colored walls.

Baby’s Challenges


Our family is now facing yet another challenge in 2012.  From the day of his birth, DS2 has had oddly tracking eyes.  Both of his eyes would just look to one extreme and stay there or he would look all around with each eye tracking differently never seeming to look right at something.  I couldn’t get him to make eye contact for months.  He is almost 7 months old.

We finally got to see the pediatric ophthalmologist.  While the vision of each eye is on target, he has been diagnosed with Strabismus and Ocular Motor Apraxia (OMA).  

Strabismus is a fairly common condition where your eyes don’t track together.  It is one of the conditions that can result in a “lazy eye” but the two aren’t mutually exclusive.  For my little man right now, he tracks the eyes separately and then one eye will focus on the object he is trying to see.  We are watching him carefully to make sure one eye doesn’t always dominate over the other.  If that is allowed to perpetuate, the non-dominate eye will loose function.  

The other condition, OMA, is a very rare condition.  His eyes have trouble with moving objects.  If you call for him from the side, he will quickly move his head toward you but then he has trouble getting his eyes to look at you.  He can only follow very slow moving objects.

Our pediatrician has now diagnosed him with hypotonia, low tone.  He doesn’t flip over much, he cant sit up unassisted and he tires easily.

This week, we were able to meet with the county to determine if they can provide services for him.  Our county assesses children with delays for free and then offers OT and PT services as needed on a sliding scale.  We are waiting to hear if he qualifies and then we will have a second comprehensive assessment of his issues/skills with two experts on his challenges. 

Next week we will be taking him to National Children’s Hospital to see a Pediatric Opto-neurologist to try and determine root cause.

It is difficult making sense of all this but I’m just working to make sure I can help him reach his greatest potential rather then morn the loss of what could have been.  I already see the exceptional human that he is. He’s so happy and lights up the room with his smiles.