Gabriel had a great and busy week. I know we were busy because my “lets go anywhere” kid just wanted to stay home yesterday 🙂 I feel like we have the original Gabriel back. He wants to be outside all the time (technically right now in the garage, with the doors open), his run looks somewhat cordinated (as opposed to a control state of falling), asking to read lots of books, chatting up a storm and asking me to sing about EVERYTHING! He literally asked me to “Sing about the closed library” yesterday. 🙂
He continues to have a blast a school. It is clear to me how good it is for him to be around other kids without mommy around. It has been fun to see him interacting with other children at the library and park this week, I can tell he is getting to used to talking and playing with other kids. He and a little girl at the library negotiated how to share the lego castle without any adult involvement! woo hoo!
We made it 8 days with no seizures, when he had 1 small (gasp)and 1 big (1 1/2 minute) last night. This is consistant with pattern of several days without and a few days with seizures. I am expecting seizures for the next few days and will be pleasantly surprised if I am wrong.
We have started the process of getting a 2nd opinion from a doctor at John’s Hopkins in Baltimore. Our doc here recommended it and we think a 2nd set of eyes on our case will be great. we have an appointment set for early November. We would ask for prayer as we firm up all the details… insurance, flying, lodging, food for g.
****** as I was finishing typing this blog last night Gabriel spike a 103 degree fever. He has been feverish and tired all day (Monday) but has not had any seizures. whew! hoping to get the fever under control so he can go back to school on Wednesday. praying the fever subsides and his appetite returns. He is several hundred calories short and since the fat from his food is the major component of stopping the seizures we are concerned. ********
hee hee. kind of random picture…but I love it. so great of both my boys. showing off their shirts from a doose fundraiser. (An amazing woman who is working hard to fight the battle for doose kids and epilepsy in general sent them to our family. I have one too but someone had to take the picture).
Heather Barnes Jackson said:
Looking good! I am praying for G! So glad no seizures with a fever that high! You all are doing a wonderful wonderful job advocating for your son! Keep up the great work!