As far as our insurance paying for IVIG we are still in that battle. They denied the Mayo's claim to which we were really hoping they wouldn't. I'm starting to brainstorm fundraiser ideas. If we had to pay out if pocket for Jonah's treatment plus all of his other bills the cost would be over $37000 a year.
Monday, October 20, 2014
As I was saying in my last post, it has been awhile since my update on Jonah. At one of the Mayo visits we met with Jonah's dietitian and neurologist. Like I said before they increased the fat to carb ratio to see if we could eliminate the nightly tonics he was having after falling asleep and the occasional tonic clonics he was having in the early morning in his sleep. I do believe that the increase has helped but not eliminated them. In the last month he has had 2 tonic clonic(grand mal) seizures in his sleep which isn't too bad but I would like him not have any. Actually, since I started writing this update a few day ago, Jonah had one drop in the bathtub followed by an absent and then 2 days later he had an absence while sitting on the couch. Hopefully those were just breakthrough seizures. IVIG is scheduled again for this Saturday.
Thursday, October 16, 2014
I know it's been awhile, sorry. Time has not been on my side.
I posted last a little over a month ago. Since then Jonah has been down to the Mayo twice and we have increased his ratio from 1.75:1 to 2:1. That doesn't seem like much but you can tell. He gets quite a bit less fruit and more heavy whipping cream. He seems to be tolerating it fine though. Thanks to Barb who is on top of making sure Jonah has a great variety of meals and makes them every week. Barb is always on the ketocaluculator making new meals or switching things up to make the meals more attractive to him. Thanks also to John and Susan who have bought themselves a scale and taken on the task to help with Jonah's food preparation. Thank you to my mother, Kathy who continues to come over 3 times every week to help out. Thank you to Margie and all who decorate brown lunch bags that Jonah's meals come in. Thank you Audra and Audra's whole Church body who continue to lift Jonah up in prayer and send words of encouragement. Thank you Katie who also is a prayer worrier for our Jonah and continues to send texts and words of encouragement to Jonah. Thank you to Bill and Kathy who barley know Jonah yet have keep donating financialy to Jonah's rising medical cost through Pay Pal which now have accumulated over 15K. I know I am missing so many people but thank you to every single one of you praying for Jonah and coming along side this journey of having a child with hard to treat, multiple types of seizures, aka Doose Syndrome.
It seems like I have been so busy lately and time is just flying by that I haven't had a lot of time to sit and think about how I have been a mom now for almost 17 years. Wow! That's just crazy.
I am so thankful that God have me Tyler for my firstborn. He is one amazing young adult. A true leader.
Sunday, October 5, 2014
Happy Birthday, Shane!
What a joy it has been to watch Shane grow into a now teenager.
Shane celebrated the day with grandpa Dan coming out with some birthday gifts. Then, grandma taking him to lunch. He got the day off of school to which he spent the rest of the day playing a new birthday game, Destiny.