Life with Blake

04/29/2024

Finally got Blake back to bed, hope it last till at least 7 or 8 am! 🤞🏻

05/11/2022

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.

05/11/2022

10/03/2021

Blake’s fall school pictures and they are so good. Also an update on his Nexium, insurance finally paid! After spending time on the phone with the doctors office and rewriting the prescription we finally got it where insurance would pay!!!!

09/30/2021

So sorry for the lack of updating, it’s been crazy getting back in the swing. We never really got anything from the doctors so we are just monitoring Blake and anything we think might trigger his episodes. Blake was very happy to back in school, he’s enjoying his new teachers and his one returning teacher. We did get to take a family vacation this month and had a great time. Blake enjoyed himself but was so ready to get back to school. He proved it by getting up every morning at 4 and 5 ready to go to school. Blake also ended up with a sinus infection after coming back from the beach. A quick trip to the doctor and some antibiotics and he’s on the mend.
The only other issue we’ve had this week is fighting with insurance over getting one of his medications paid for. Blake has severe reflux and takes Nexium 60mg daily and now insurance does not want to pay for it. So I’ve been working with the doctor to get it wrote a different way that maybe insurance will pay. It’s crazy how expensive medicine is with and without insurance.

07/22/2021

Blake is still having these episodes that we were told are not seizures. On July 4th Blake had 4 episodes that day, most being pretty close together in time. On July 6th we meet with the cardiologist and explained everything to him. Blake EKG looked normal but he agreed that something was up and could understand our worry. Blake was placed on a heart monitor for 48 hours. It’s simply amazing how small they make these now. Unfortunately/fortunately Vlake did not have any episodes for two weeks. Last week he began having them again. I contacted his neurologist and he has determined that Blake need another video EEG along with a heart monitor. That being said he arranged it for certain days and we got that call this week. Blake will be admitted to Piedmont Athens Regional on Tuesday for at least three days of testing. We are praying that Blake will have several of these episodes while we are there and the neurologist and cardiologist together can figure out what’s going on. I know that sounds crazy to pray for something to happen when normally you pray for them to go away. We just want to find out what is causing these crazy episodes and get them stopped.
The video EEG is no small task, getting Blake hooked up takes about an hour and it’s pure heartache and torture but we only want what’s best and give him the best life possible. So please say a prayer for all of us next Tuesday around 11 am!

06/03/2021

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..