Friday – Waiting and saying “Bye” to Dad

Today has been a lot of waiting. We are, at the moment of this writing, still waiting for a seizure. There is nothing we can do to MAKE it happen, though there are many things we are doing to try to make it more likely to happen. Daniel is now completely off his seizure meds. His head has started to itch, as it always does after a couple of days of the EEG leads stuck to his head. This time, he has been given Benadryl to help with the itching. Benadryl can lower the seizure threshold, so this time we are hoping it does. Generally we avoid Benadryl like the plague. Not this time! Bring it on!

Not very much happened today in terms of appointments. Dr. Lachhwani stopped by just to check in and to encourage us. He will not be on this weekend, and he has a trip the first two days of next week so we won’t see him for a little while. He said watching and waiting for the seizures can be a challenge, but it is really important. As we all know, Daniel’s situation with the brain bleed in utero complicates his situation, and raises questions that can only be answered with seizure data, so we must wait for the seizures to come. He said he wants me to know that they will not leave any stone unturned and they will pursue whatever is the best solution for Daniel. At the moment, we just have to wait for it.

Today was hard for Daniel, because he knew that David was going to be flying back home at the end of the day. He was weepy at different times anticipating this and it was hard for all of us, maybe hardest for David, when he headed for the airport. Poor Hannah had a bit of a meltdown tonight too and we spent a long time on a video call. She has been such a trooper at home and has had really a wonderful time with her grandmother (Dave’s mom), but she finally couldn’t take the missing us anymore. So understandable! Keep her in your prayers too, because tomorrow she and David will be preparing for her to go to stay with another family for the coming days. Grammy needs to go back to work, and David needs to fly to California for work. It is hard for her tender little heart which is already dealing with so much.

Tonight we have been instructed to restrict Daniel’s sleep to four hours. I am very, very hopeful that he will have a seizure as he starts to go off to sleep, as the transition to sleep is most frequently when his seizures happen. Then if he sleeps for a short time, is kept up and then sleeps again, maybe we can get two. We need data from at least three. It is critically important for making a solid decision on treatment. Let me just tell you, Daniel WITHOUT seizure meds is my sweet boy who is not irrational and hard to reason with. Seizure meds are a double-edged sword. In a lot of ways they are my enemy. They take away my son’s personality and make it near impossible for him to learn and process information. But, without them, he has terrible, potentially life-threatening seizures, which also do a number on his progress physically and academically. If there is a possible solution surgically which can stop the seizures we need to find it and of course that is why we are here.

Keep praying friends! We really, really need to be upheld in this time. Thank you so much!