The past couple of weeks have been fairly calm (knock on wood). Greyson is slowly, but surely adjusting to his higher dose of Trileptal and is responding well to it. He is still having strange tics and shakes, but hasn’t had any huge issues except for fussiness and headaches.
Friday, September 7th, we had our second laser treatment down in Baltimore with Dr. Cohen at JHH. We drove down early in the morning and checked in with 10 minutes to spare before the appointment. Initially, I thought that this appointment was a simple follow up from the first, but after checking into the instructions for the appointment on the app, I realize we were having another treatment. Luckily G doesn’t have to fast for the treatments, so derek and I were well equipped with cereal, juice and Valium. We prepped G’s face, neck and ear before we went down; alcohol wipes to clean the skin, prescription lidocaine to numb it and half way on the way to Baltimore, we give him the Valium to keep him calm.
Greyson did fantastic during the procedure. The first time around, he was screaming and crying, but we brought a video for him to watch and he was able to stay a little more calm. His face bruised instantly after the procedure because Dr. Cohen used a stronger voltage in the laser. He said we should expect for it to be bruised and tender for 4-6 weeks. So far, his face just looks a little more red on the left side, but nothing major.
We have our next appointment on September 28 in Ephrata with our new neurologist, Dr. Stein. Far less travel time and he is in network with our insurance, so no more fighting with Wellspan to cover visits. We will still continue to see Dr. Comi in Baltimore until Greyson’s diagnostic testing is complete. We have a referral in for a genetic counselor, which hopefully will be the last step to rule-out Sturge-Weber Syndrome. I am hoping we are nearing the end of the tests and imaging for G. It’s extremely exhausting and stressful for him and both Derek and I.
We have had MASSIVE success with Greyson’s ABA services and his intensive teaching (IT) sessions recently. He is a quick learner and has even began to sign independently for music when he wants it. Greyson’s biggest reinforcer is regular M&M’s. He loves them! As soon as his RBT brings out the candy, G begins completing his probes- “touch belly”, clapping, high five and music. The first time I was able to see him have a successful IT was on Friday after his procedure. I had to stay home with him because he was still on Valium and needed to be monitored (luckily, he was just approved for in-home nursing care for 45 hours a week, so once the nurse is able to start, we will feel less stress about having to leave work frequently). G now has some independent signs- eat, drink, more and music. The signs in combination with his IT skills and compliance, G is doing amazing trying to show Derek and I what he wants and when. His services are finally showing their success. As long as we have M&M’s, nobody will stop this kid.
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