Shands/Gainesville Visit

First off thank-you to everyone, for the prayers, thoughts, meals, cards, gifts, etc. and especially love! We love you all and Praise God I will be fine!

Last week was a lot of confusion for me but I know one thing definitively.  God the Great Physician is all over this one and leading we through it with love and compassion.

Last week M-F we spent the week in Gainseville / UF and Shands Hospital at the EEG monitoring lab.

The Doctors were attempting  to localize the seizures and defintively determine that they were coming from the area of the tumor.  All of the Neurologists on the team and our Neurosurgeon all met on Tuesday reviewed the data (from the 24 hour monitoring) and agreed that they were not able to determine with certainty that all of my seizures were coming from the tumor.  I know I was confused too!!!

They also said that they could not rule out that the symptoms I'm having on my left side, numbness in my lip, tingling in my hand, slurred speech due to lip twitch are not being directly caused by the lesion in my brain.  So they advocated that I wait and see and not rush in to epileptic neuro surgery which is a serious form of brain surgery.

However Dr. Roper our Neurosurgeon believes that it is most prudent to wait and see what the tumor does as my major seizures have stopped and the symptoms on my left side are minor.  We will do another MRI in 6 months and if the lesion grows or my symptoms change in any way then he advocates taking it out with surgery but does not advocate that at this point in time.

So in Gainseville's opinion wait and see what my symptoms and the lesion does after six months and be prudent about any decision for brain surgery.  Sounds good to me!!

We already had a second opinion in the works at Mayo and are working on that for as soon as possible.  We are also consulting other opinions in Massachusetts and California.

We were waiting to hear from the team in Gainseville and also had a second appointment with another neurologist here in Jacksonville on Tuesday December 14, which is why it has taken so long for an update.

  While in Gainseville, some of the episodes profiled differently and could have been a combination of medication or other factors.  Oddly enough as soon as they took me off the medication that they put me on 2weeks (takes two weeks to get into system) before this  round of shenanigans began began.  Anyway they  changed my medication and I feel much better.

In fact my symptoms immediately improved when they took me off seizure meds which appears too clean to be just coincidence and I don't believe in coincidences anyway. Things that make you Go HMMMM!!!

When I mentioned that and said I thought it was the meds things got much less definitive and exact and we suddenly heard a lot of maybe and not for sures but anyhoo I feel better.

I've been seizure free for three days.  Praise God for that. He's healing in radical ways. I feel strong again and finally like myself.

I know this post is long but a lot to say:
While we were in Gainseville God did some incredible things:

On Thursday Night we were going to leave  and then in walks this woman named Jackie an anointed sister in Christ who I just know God sent.  She had heard I'd be in the hospital from a dear friend at our church and if the whole week made no sense in the practical God brought it all together in the spiritual praying with her.

It was a Divine Appointment!  God gave me a bible verse as we prayed Psalm 20 which when I read it could not have been more perfect. Julia who hardly ever gets words and pictures felt the Holy Spirit telling me clearly to " pick up my mat and walk.". Read earlier posts for reference.

If the Gainseville trip proved confusing and hard in so many ways this God prescribed meeting made the whole ordeal well worth it.

On December 14 I also went to Christian Healing Ministries here in Jacksonville after my doctor's appointment.  The two amazing prayer ministers prayed for my seizures and for the lesion and let's just say The Holy Spirit came to heal and I walked out of there feeling like I could run down the street!  I almost did!

I'm loved healing is happening, God is Good and if you are reading this... I love ya!

I can't wait till I can move around a little more and get to share this testimony.

Love and peace!

Update from December 3rd

From Rick....

Let me say first that this is several cut  and pastes and took me several days as typing and anything requiring brain power or concentration is really hard!

We went in for a CPAP Sleep study test to see how I do sleeping with the apnea machine.
I have to wear an aquaman man mask that is even more attractive than my normal ravishing self and will look great with my green Mohawk!

We then drove to University Florida Gainseville where we met with Dr. Steven Roper an epileptic neurosurgeon.  He explained that I have a Cortical Displasure or abnormal growth of brain , a lesion... I think that should make me wicked smart!!!  It could also be a D Net Tumor but we won't know till we get in there!  The Mohawk is looking pretty likely.

The next step is for me to go and do an EEG study where they take me off my meds and they induce siezures for a week at UF Gainesville. So all you gator fans better come visit :) I go to Gainesville for that study on Dec 6th.

By the way we really like Dr. Roper as he gave us good, specific answers. And he really cared about my quality of life. What's really rad is that the Great Physician is leading this whole process.

Dr. Roper says the next step after the EEG study is to make a decision on if I need brain surgery. If that is the case they should schedule the surgery quickly.  There are two options for surgery and both are daunting. But my savior hung a cross so I'm pretty sure God will guide me through either option.

Thank you so much for all the love, prayers, visits, cookies, and pledges for green mohawks.

The hand of God is all over this especially in community. I feel so loved by Him, through you.

Those of u who have pledged to get a green mohawk will be contacted by Brian Horn shortly. And yes, we are still taking open pledges :)

DREAMS DO COME TRUE!!!

Well, Rick got the word from the head doc that he would most likely need a good head-shavin' for the battery of tests he will endure this week at Shands/UF-Gainesville, so he decided to, well......you can see:

Lovin' life with a green mohawk 

 Mama Crowley was there to witness the shearing of his "model-mop"....she loves it as you can tell

 Death Row? 

AWESOME!!!!!!

I have to say that there was some trepidation from family before the hair procedure but here are some "after" quotes:

Dickie "Dad" Crowley:  "Hmmmmmm"

Donna "Mama" Crowley: "Ricky, you look like an angel!"

Julia (before green was added):  "You actually look good; it looks really good on you."

Tucker Ryan: "Mr. Rick, why is your hair green?"

***Disclaimer***  I think that is what Mama Crowley said