What a great day Gabriel has had!
1. He got to ride the bus home from school. He was so excited to ride the bus.

2. He answered a question his teacher asked him at circle time! HUUUUGE! The teacher included in an email to me and mentioned what an impression it made on all of the other adults who had worked with him last year! They had never seen him answer a question. News like this makes my heart soar. He is gaining skills to function in the world. So proud of him!

Gabriel has an appointment with the behavioral neuropsychology specialist tomorrow. We had a bear of a time getting the appointment made! We still aren’t sure if it is going to be a follow up on a developmental assessment he did last year or for getting resources to help with the new level of impulsive and inattentiveness we are seeing. EIther way we are going to bring up our concerns with his new lack of understanding when things are not safe. (things like grabbing for pots on stovetop).

We are also starting to have problem with his sneaking food. He found a few pieces of shredded cheese on the table, left from us cooking and ate them plain. Our house is pretty locked down but he is at school now with other kids eating regular snacks. In the past I wasn’t worried because he followed directions easily and willingly, not so sure anymore. Another reason we are hoping to kick the diet asap.

BUT today I am focusing on the good and asking God to help me feel the good as deeply as I do the bad.

Gabriel started school on Friday. He was supposed to start on Thursday but ended up coming down with a cold on Tuesday. It is amazing how a simple cold knocks G man out. He slept all day Wednesday and most of the the Thursday. He bounced back Thursday evening, so we knew he would be heading to school on Friday.

Drop off went well. He has a new teacher this year but the para’s (teacher helpers) are they same at least year. It was great to see him walk right up to one them and get in line with his classmates. Nice to see a lot of familiar faces. I was shocked at how much older all the kids looked. Then as I was loading in photos today I realized that Gabriel has grown up a lot this summer too!

When I picked him up from school I asked how his day was. He said something like I had fun or I played. I can’t remember because right after that he said. I played London Bridge, then started singing it! This is HUGE! He rarely answers questions directly and almost never with detail. We usually find out about things that he did in totally round about ways. I was so excited that he enjoyed his day enough to report on it! Then he sang london bridge several more times, until we got the ipad out to record him singing it…. LOL 🙂

Gabriel is 5 months seizure free! It is so exciting to type this! He starts school in a couple days and I can’t help comparing this summer to last summer. What a difference! We were truly in the valley and now we are out! Yippee! I’ve been doing some serious organizing and purging the last few days and came across things I do not miss at all! We are not having to obsessively track every bite he eats to later match it with the seizure log to see connections. We are not having to keep a seizure log! We not having to test of ketones in his urine every day. We are not having to use diastat (valium) to stop long seizures. We are not having to call 911. We are not having to hover over him like you do a baby taking his first steps. We are not having to make sure his helmet is either on his head or at arms reach. AMAZING! Last summer was awful! Stressful and scary. This summer has been fun and relaxing. I didn’t make a bucket list of things to do but tried to remember to stop, enjoy the moment and take the extra adventure when possible. We didn’t do big things but things like going to the swimming pool or having a playdate became BIG because Gabriel was able to be present and fully participate!

Things continue to go well with him off of Keppra. We have our next appointment with his specialist at the end of Sept. We are hoping to wean off the diet.  We really don’t think it is doing any good. Especially as we continue to read about the children having success on the diet, and there are many, Gabriel’s story just doesn’t match. His story is the day he  started taking Felbamate his seizures stopped. We know the seizures can come back at anytime…he has been having some sleep issues lately and caught a cold with a cough yesterday. It is amazing how “normal” little hiccups in his pattern cause such concern for us. It is justified, these things can be indicators that seizures are coming or things that cause them.  But thankfully so far they have stayed away!

I realize I no longer mark time by seasons or events but by time without seizures. School starting is a big deal! A big marker for most families. I am literally afraid that I am going to forget to take Gabriel on his first day of school on Thursday.  While I am excited and it is a cool thing that he gets to go to a great preschool, it seems very insignificant. He is happy, healthy and developing and the treatment regamin is on right now is allowing his brain to make these things happen.