Yesterday we had a full day at Children's Hospital. We left here at 9am, got to Childrens at 10:25 as traffic was awesome. It was good that we were there early as our first appointment had changed buildings due to construction. So we had to go to information and then be shown to the new ophthalmology clinic. We waited for a few minutes and then it was time for Kyle to see orthoptics. They do all these tests with him to see how his vision is progressing. We then went back to the waiting room and soon saw the resident. He did a few things and then put drops in both boys' eyes.
Back to the waiting room where we quickly ate some lunch while we waited. I was in the middle of getting Benjamin's lunch ready when I saw a doctor that I had wanted to talk to in the hallway. I caught him and asked him if he thought Benjamin could see color. The EAs at school have been trying to teach Benjamin color and it just isn't working very well so they were wondering if he would be color blind or just isn't ready for colors yet. His first question to me was, "why does he need to learn his colors." I replied that we thought it was the next progression. He then asked how Benjamin was with objects. I replied that they were working with flashcards at school and that Benjamin was doing really well with them. I explained how they would put a few on the table and then he had to find the car, the plane, etc. He suggested that we start doing that at a distance. He explained that you want him to be able to differentiate between items in the distance and that it was more important for him to know this than his colors. It will engage him in the world more instead of just at a short distance.
Just done our lunch and back into the room we go. We saw the resident again and to be honest he shouldn't be working with children. Kyle's eyes were really sore from the drops and he didn't engage him; he just told him to look here, look there. Kyle had a really hard time doing that since the resident was taking so long. Then it was Benjamin's turn. He really wouldn't cooperate so the resident had a hard time doing anything. The resident then called the doctor.
It was Kyle's turn again. The doctor then did a bunch of tests with him and checked his eyesight. His prescription is still the same but we found out that on the orthoptics testing he had done way worse than in December. So Dr. Gardiner called the orthoptist and checked if she had done anything different than in December. The orthoptist hadn't so they consulted together as to why his vision had gone downhill. Dr. Gardiner then decided to check Kyle's glasses to see if they were the right prescription. She found out that the stigmitism in his glasses was 90 degrees OFF. That explains why his vision has gone downhill since December. So we have to go back to Superstore to get them to correct this!
Then it was Benjamin's turn with Dr. Gardiner. There was no change with him in his eyesight. The ERG machine is now working again so they want to do a few tests on other children and make sure it's calibrated and then test Benjamin in the OR to do one last test on him to make sure one of the seizure medications he was on didn't affect his eyes.
Done with orthoptics and ophthalmology. Off to the next appointment we go...
We got to our next appointment, neurology, at 1:30 which was our appointment time. We waited in the waiting room for a while and then they called us to get Benjamin's height and weight. He is now 113 in height and 19.1 kg in weight (around 42 lbs). Then we were back to the waiting room where we waited until about 3pm to be called in. We then saw the resident and showed him some videos of Benjamin having seizures. He was concerned that Benjamin is having at least 2-3 clusters of seizures in a week again. So we went over his medications and he consulted with the neurologist and they both came back and decided that Benjamin should come in for a couple nights for a video monitoring EEG. They also want an MRI to see if anything has changed in his brain and see if they can pinpoint the seizures. We are starting on a new medication in addition to the medication he is on to see if that can control the seizures. But this medication is one of the ones with high probability of allergic reaction so we need to keep a close eye on him to make sure he doesn't develop any rashes or high fevers. It will take 13 weeks to get to the full dosage. We also talked a bit about brain surgery and we have to go through some testing to see where the seizures are stemming from and what part of the body that part of the brain controls and then weigh the risks and benefits.
4:30pm and finally we're off to home. We made a quick stop to pick up a coffee table I found on Craigslist that I'm going to paint and then continued on home. By the time I had Devon picked up it was 6:15 and I was ready for bed. We got all the boys to bed and they were asleep in no time. I then had dinner and watched a video with Gary and was off to bed myself.
Now to do that for a day for the next 3 weeks. I got asked if I would come back Monday for an appointment with another doctor but since I'm already going on Tuesday again I opted for another appointment.