ERG

We had our ERG this morning. As scary as it looks, we were reassured it's actually painless for the boy, and believe it or not, he's sound asleep in this picture. So we met with the nurse, got some drops and waited 45 minutes while his eyes dilated. We went down to the coffee shop and Oliver had a bottle. We saw one of the hematologists we work with and then , on our way back up to the opthamology floor for our ERG we bumped into our pediatrician, who was doing his rounds at the hospital. Sad when a large hospital becomes such a small world that you see many familiar faces in one visit. We met with our opthamologist and then went in for the ERG. The procedure was very easy, Oliver was asleep the whole time. He complained just a bit when she put the numbing drops in his eyes (they sting a bit) but then went back to sleep and cooperated for the whole test. The results were good. So far...retinal function appears to be normal. They
noticed a bit of low numbers during the "lights on" portion but think that was because he was asleep and his eyes were sort of rolled upward at the time. His numbers during the "lights out" portion were perfectly normal so the dr thinks it was just a fluke and not an indicator of any issue. So that will serve as our baseline ERG and we will do another one in 6 months. The purpose of this test is to measure his retinal function and keep an eye on it (pun intended) while he is on Vigabatrin, since Vigab can have the tendency to reduce retinal function and cause tunnelvision when taken for a long time at a high dose.

After the ERG I had to get to the office for a meeting so Jason is spending the rest of the day with the tater tot. Oliver has his 9 month checkup at 2pm which should be fairly uneventful. So we should be done with appointments until our Mayo trip in August!

We are still waiting to hear from neurology about Oliver's most recent seizures to see what our med plans are and if we are going to continue with the plan to decrease clonazepam or if we are going to switch to a "plan b". Hopefully whatever we do gives the boy a little relief from the seizures!

He had his best night's sleep last night, in , well....ever! He was asleep by 9pm and we heard him once at 4:45am but didn't go get him. He was just kind of talking to himself and then put himself back to sleep. At 7am we woke him to give him his meds...I wonder how much longer he would have kept sleeping?!?!?! Hopefully that's a new pattern that will stick around for awhile :)

Grandma Eunice and Papa Bill fly in tonight at 8pm and we're very excited to spend some time with them, and to have the chance to spend some alone time with Tobin while Oliver hangs inside hiding from the heat. Both of his seizures this week happened after he had been out in the heat for a bit so I am hoping if we keep him in the a/c consistently ...maybe he won't have anymore? That would be good and bad. Bad because it would mean that we can't all go do outside stuff as a family until the heat settles down some, but good if it keeps him from having seizures.

Not much else new around here, a nice break from dr visits for Oliver, Tobin is having a great summer playing with friends and going to various pools and parks, and Jason and I are just slowly trying to manage everything that comes along with caring for a very special little baby while balancing everything else in our lives.