Abe's urology appt went great. He was very pleased with how he is healing from his surgery. I went to pay his co pay and they said oh no you don't have to pay for the post op visit. WOOHOO!!! More money for lunch. That along with the money granny gave us and we were headed to Legal Seafoods to eat. OH MY it was so very good. We sat upstairs overlooking Atlanta. It was a beautiful day except for the winds and it being cold. We really had a wonderful lunch. It was nice to have some time to talk to each.
Legal Seafoods holds very special memories for us. About 10 years ago when we took Michala to Boston Children's Hospital we went to Legal Seafoods for the first time. We were hooked. We even had clam chowder shipped to us from there once.
We got to Egleston and met with Mo. Dr. Holt soon joined us. We went over EVERYTHING and discussed EVERYTHING. They checked Abe real good. The good thing is that Abe lungs sound clear. PRAISING GOD for that one! Dr. Schoen was in clinic today so Mo was going to discuss the swallow study. They are hoping to get that and his EEG scheduled for the same day. They want an EEG to see if the hypsarythmia has cleared up any so that they can see if he is having other types of seizures.
As far as meds go right now we will stick with the high doses of Orapred. We will also leave his other meds for now. We feel like the Orapred is doing something for him. We told them that he has not had a hard screaming seizure in several days. He hasn't had Diastat since Friday and Ativan since Sunday. We are thankful for that. He is still sleeping a lot because he is so drugged. He is on a lot of meds and they are hoping to wean him from some soon but we have to get these infantile spasms better controlled.
Well we had told them about him not having a bad one, Mike told my mom and then while I was talking to my mom tonight on the phone he started having a bad screaming one. NEVER say that he hasn't had one. You NEVER talk about seizures. We have learned that from the past and should have known better. It never fails. So now he is knocked out with a double whammy of meds and the seizure.
He has lost weight because of the feeding tube. He was eating cereal, fruits and vegetables before I put the tube back in. Losing those calories has made him lose a little. We will hopefully get to take the tube out soon or increase his calories.
Thanks for ya'll's prayers for a safe trip and direction. We got both!