Finally!!!!!!!!!!!!!!!!!!!!!

Thought I updated here...  but looks like I didn't.  Yikes!

After 3 years of fighting for it...  we FINALLY got the official - in writing - letter stating that Michael's disability was fully approved!!  I can't tell you how much of a relief this is for us!  The part that stinks is the letter says it will be another 60-90 days before he starts seeing regular payment.  Aye-yi-yi!!  Still blows my mind how our system works (...  or doesn't work!).  

As far as how Michael's doing...  he's doing ok.  We were able to enjoy Christmas with our entire family - including Devin - and he even went almost 2 weeks without any sort of seizure event.  What a blessing that was!  Since then he's had a few, but nothing too bad.  I think we're finally learning how to stop them, or at least lessen the severity, when we recognize them coming.  

Barrow got approval from our insurance company for him to be admitted into the EMU (Epilepsy/Seizure Montoring Unit) at St. Joe Hospital to see if they can identify what kind of seizures he's having and where they are stemming from in the brain.  He'll be admitted March 4th for a 7-10 day stay.  He'll be taken off all of his seizure meds 3 days before admission and he will be there for 7-10 days.  We were told "he WILL have a seizure before he's discharged"...  yikes!  Hoping he has it early on so he doesn't have to stay the full 7-10 days or they are going to have one cranky Michael Lyons on their hands!  LOL! 

We are grateful to each and every one of you who continue to love us along this journey!

Michael and Michelle

Starting 2016 With Hope!

2015 was a hard one....  maybe even our hardest yet.  I'm glad it's behind us and that we are starting 2016 with hope....

First, Michael's disability is approved (although we still haven't gotten this in writing).  This is a HUGE relief and a fight that we are glad is behind us.  We do have to wait a few more months before we start seeing the income, but it's coming!!  Praise God for answered prayer!!

Second, his seizures (dare I say) seem to be slowing a bit in frequency.  He even went 2 weeks without a single one!  That's the longest he's gone between seizures in a LONG time.  We hope that this trend continues because it's nice to have "happy Michael" around....  the Michael we see post seizure is not a friendly one.  LOL!  He did have a 72 hour video monitored EEG here at home right before Christmas.  We don't think he had any seizures while on it.....  but won't know for sure until we see the neurologist again January 29th.

Third, he does seem to have a doctor who is not stopping until he helps Michael and that is a great feeling.  Dr. S does have a few treatment plan ideas, but unfortunately our insurance hasn't approved the one that the doctor's are "comfortable" doing despite 2 tries to get it through.  Our insurance did change January 1 so we're going to resubmit everything through the new insurance and hope for the best.  The other option is easier to get approved through insurance, but requires a 3 day hospital stay because it carries a high risk of cardiac complications.  Not good for a man who already is being treated with crazy high doses of Coreg to keep his tachycardia under control.

Fourth, he is FINALLY scheduled for to see the lead neurologist who heads up the B.R.A.I.N.S. clinic at Barrow on March 2nd!  We have been waiting on this appointment since August!!  This clinic offers neuro PT, OT, and ST that is specifically designed to help patients who have had multiple TBIs and may offer some other medications or treatment options to help control the symptoms Michael deals with every day. 

For now, we are leaving this YouCaring fundraiser page up and running.  It's a great place for us to blog about Michael's CTE story and have it all in one place, and it also allows people who still feel led to help financially as it is still a HUGE need for us.  It's a great thing that the disability is approved, but as was mentioned above we still have to wait a few months to start seeing income.  AND, we've had almost 3 years of mounding medical bills and other expenses just trying to live day to day with one income and no outside assistance.

Thank you for your prayers, love, and support!!  

Much love to all!

Michael and Michelle