The Heaven's Declare

Billy Graham said "There is a language in nature that speaks of the existence of God. It is the language of order, beauty, perfection, and intelligence."

Psalm 19:1-4

"The heavens declare the glory of God,

and the sky proclaims the work of His hands.

Day after day they pour out speech;

night after night they communicate knowledge.

There is no speech; there are no words;

their voice is not heard.

Their message has gone out to all the earth."

I see God every day.

Prayers and Advocacy

Lately, I've been praying that the Lord would really impress on Dr. Rooker (the psychiatrist) and Dr. McCrady (medical director at NR) what to do that will really help Mike be on a sustainable, even keel.  Up until now, every medication change has not made a lasting difference and it seems that somehow, someway, there is something that will make a difference. Obviously I don't know what that is and neither do any of the therapists, psychiatrists, psychologists, physiatrists, PCP's or any other doctor that has seen Mike in the last 19 months. God is the Master Physician who created these amazing bodies of ours so He knows exactly what Mike needs. Please, please, please pray this prayer with me. We need a calmer, more easily managed Mike both for him and all those around him, as well as, in order to find a placement for him.

State Hospitals are area specific, difficult to get into, and frankly the last resort in my mind. Mike is so much worse when he is more restricted. Training Centers are for the ID patients. (Intellectually Disabled prior to age 18).  Assisted Living Facilities need Mike to be able to do more on his own. My Mom and I visited a really nice one just 30 minutes from here called Helton House. They do not have any openings, plus Mike needs more supervision than they are equipped to provide. They do have ID houses, but again....see above.

I did contact one nursing home, Berry Hill, this week in South Boston, VA that has 2 TBI patients already. I did not get into details over the phone, but I sent the admissions office the summaries on Mike. Yesterday I called to see if my packet was received, but had to leave a message for Tracey.  Please, please, please, pray that if this is God's will, they would be willing to take Mike. I hope to speak with Tracey at the beginning of the week and try to visit their facility this week also.

I just returned from a day spent in Richmond at a TBI Caregiver's Forum. It was good, OK, actually some of it was sort of depressing.  There just isn't much help out there for our TBI survivors or us and while there is a lot of information, websites, and resources, everyone's situation is so different that there is no clear path to follow.  I guess I should be encouraged by some of the stories of how other's loved ones have recovered, but honestly right now it feels like that will never be us.  HOWEVER, there is always HOPE with GOD.   Matt. 19:26 "...with God all things are possible."  Luke 1:37 "For nothing will be impossible with God."

I am more energized to write to our Virginia state legislators and would appreciate any of you other VA residents writing as well.  Just go to virginiageneralassembly.gov and in the middle at the top click on "who's my legislator?", on the next screen, type in your address and their names will pop up, plus a bar below where you can click and send a message right there. The major need is to have brain injury included in the waiver system and funding to be available to brain injury survivors. The Executive Director of BIAV, Anne McDonnell, was a great speaker and said the reason we aren't getting the funding is because we aren't making enough noise. Time to visit and write to my legislators.  All help appreciated.

The search will continue and the fight is on.

The Changing Eyes of Mike

Luke 11:34

"Your eye is the lamp of the body. When your eye is good,

 your whole body is also full of light. 

But when it is bad, your body is also full of darkness.

We can really tell by Mike's eyes what type of mode he is in, which reminded me of the above verse. I believe the verse is actually talking about what we look at and take in and making sure that it is pure and good. Being sure not to take in evil or look at things that are bad and will contaminate our bodies, filling them with darkness. However, I am using it as an analogy of how Mike acts and reacts. When his eyes focus and light up, he can remember past things, hold a conversation, play a game, eat calmly, go to the bathroom, be cooperative, recognize that others are with him and there is a glimpse of the old Mike.  When his eyes are fixed and dark, he can do none of those things, all is dark, unknown, and unseeing.

Friday I arrived in the mid afternoon and for the first hour or two, Mike mainly ignored me. There was no light, recognition, or life in his eyes.  Just an unfocused look that didn't even seem to see me. He was working on a Word Search with the help of Jordan and would say "I'm not good at THESE!" then "Put the game aWAY!" We did go for a walk eventually, and at one point Jordan asked him who I was and he said "My wife, Jennifer." So he did know, but didn't want anything to do with me.  

Saturday morning when I arrived, he was watching a movie. I said hi and squeezed his hand and he pushed me away. We watched the movie for a while and he would yell out different phrases or tell people to be quiet. By lunchtime, he was doing better, ate all of his spaghetti and part of mine then wanted to walk. We ended up taking a long walk and he was doing really well, listening to Kira and I talk and occasionally interjecting an appropriate comment. When we came to a fork in the path, Kira and I were deciding which way to go and Mike became very worried that we were lost which started the downward spiral. "We're lost! We're lost!" accompanied by grabbing or jerking our arms. This continued for the rest of the 15 minutes we walked and continued about 10 minutes after we arrived back at NR. Thankfully, James found the Va. Tech football game on Mike's TV and we were able to watch the last quarter of that before Mike entered the dark eyes phase again repeating over and over "Boston College is winnING!". Something I have noticed this time is that he really accentuates the last word or syllable of a word when he is perseverating and he gets louder and louder.

About a month ago, his medication was changed. Klonopin was discontinued and Depakote gradually introduced. Due to aggression, Seroquel was added. The interesting part is that his perseverative times seem more intense, but his "clear" times seem more clear, as well. During the bad times, he may slap his hand on the table or stomp his feet, hit or kick. During the clear times, he remembers people's names, how they are related or things that happened in the past which is an improvement.  However, we never know when he's going to have light eyes or dark eyes and it can change in a second. Unfortunately, the dark outweighs the light considerably. 

I had really hoped to be able to take him to church yesterday. I searched on line and found a contemporary service that met in a middle school. I called NR about 9:15 and Mike was doing well, had just finished breakfast, and they were going to get him showered and dressed.  When I arrived about an hour later, he was very perseverative and none of us could distract him or engage him in any activity or conversation. He was holding the cards to Sequence and slapping the table saying "These are not the SAME!" over and over. After about 20 minutes, I decided to go on to church. I couldn't do anything for him and I needed to be in Worship. 

God is so good. The songs & sermon were wonderful and the young woman who sat beside me is a nurse who works in a brain surgery department of a local hospital. After the service we talked for a good while and it was just such a blessing, because she understood to some degree the challenges we are facing. Also more prayer warriors were added to our army who are storming the gates of heaven on our behalf! If you're in the Blacksburg area, check out Northstar currently meeting in the Blacksburg Middle School on Prices Fork Rd. Jesus is definitely there. 

After grabbing some lunch, I went back to NR and Mike was in a very agitated state wanting to go somewhere. We finally got him in a vehicle and tried to just take him for a ride, but he was hitting the seat, taking off his seatbelt, and yelling "Let me GO!" Back at NR, he eventually settled down enough to play Sequence, then we watched a TV show and he was doing so well at that point that I asked to take him to Waffle House.  We went and he was terrific!  He ate an entire All Star Breakfast, a quarter of my waffle, and 2 cups of hot chocolate. His conversation was appropriate, he was calm and cooperative and ate slowly.

As soon as we walked out of the door, he said he wanted to go to Wal-Mart. We said no, it was too late and Wal-Mart too far away. That set him off and he started throwing a tantrum, basically. We got him into the NR vehicle, Peggy locked him in, and headed straight back to NR. I headed to Silvia's and called to check that they had arrived back safely. They did and this morning said he had slept all night. 

This erratic behavior is making it very difficult to find a placement for Mike and this weekend helped me again see that I cannot handle him on my own. I had a meeting with the staff this morning, and they are going to check into the remaining Training Centers in the state. Lisa and Ivan believe that would be the best fit for Mike of the options that are available.  It is heartbreaking, especially after I see a glimpse of the real Mike, but that is so rare.  

Well, I need to hit the road back to Blackstone. I tried to see Mike after my meeting this morning, but it was not a good morning, so I came on back to Silvia's, ate her delicious leftovers (Thank you Silvia!) and wanted to get an update on here.  Next I'll have to tell you about the 2 beautiful country weddings last month and other happenings.  As always, thank you for keeping up with us and especially for your prayers and love.