Life with Blake

Well as you can tell from all the pictures it’s been a great start to 2022. Blake turned 13 this year, wow where did all the time go? He starting riding the motorcycle with daddy and absolutely loves it. Schools been good and in 9 days his 7th grade is over. Blake is doing Honors Day which is so very awesome. He’s gotten really good at signing please lately, it’s really neat. His seizures seems to still be controlled by his medication which is good and we pray they stay that way; and I do believe he’s even put on a few pounds! Hope everyone is well and enjoy each day that God grants you.

So most know that we were able to catch one of the episodes on video at his EEG. The unfortunate part and good part they say its not seizures. So next call was to Blake’s sleep doctor, she was able to make her self available to us sooner rather than later. After describing the episodes to her and letting her know what Blake’s neurologist had informed us she determined that he as not having night terrors. These episodes where and are not only happening at night it also during the day time. I explained that when Blake went for his 12 year check up that I was going to request he be referred to a cardiologist. She of course agreed and put in a referral right away. This all took place the last two weeks of school. Last week Blake had a follow up with his neurologist. I explained to him what his sleep doctor said and he agreed that we should follow up with a cardiologist. Blake’s doctor went of all his labs and they were good. Now we are in a waiting stage for the cardiology appointment in July, waiting is so to especially when you have no clue what’s going on with your baby.
On a good side his appetite has been picking back up without medication or bolus feeds. He’s not gained the weight back that he’s lost but that will take some time. He seems to be back to his regular loud little energetic little self, going nonstop. Now if we can just get these crazy and strange episodes to stop, yesterday he had 7 or 8. He had som that happened back to back and then some would be several hours apart. Poor baby can’t tell you hat he’s feeling but you know that something is going on. Please say a prayer that we get some answers soon..