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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.

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.