Who’s the Giant?

Last Monday, our good friend, Elke, from Canada arrived to spend several days with me. It is such a joy to have her here. Mike and I first met Elke and her husband, Gert, in Palau so we have a fairly long history together. Being missionaries on small islands in the Pacific tends to closely connect the foreigners (aliens). We actually had to register as aliens while living there. Doesn’t that sound funny? We’ve enjoyed visits to Canada and they have visited us in the states throughout the years. Elke has jumped right in and helped with whatever is going on. We’ve painted the front of the rusted refrigerator, made home-made ice-cream for the church lawn supper which is tonight, planted flowers, hung clothes on the line, and even started scraping/power washing the barn, etc. With my nephew, T.R.’s, wedding coming up in mid-October, there is lots to do.

On Wednesday, we left at 5:45 a.m. in order to meet Mike and the NR staff at the neuro-surgeon’s office in Roanoke. On Sunday night, Mike fell and hit his head, leaving a laceration just above his right eye on the brow. Sunday night he was taken to the emergency room and received a few stitches and staples. He seemed fine otherwise, so he returned to NR where they checked him every 3-4 hours to be sure he was alright. On Monday, Mike had an appointment to have his right pinkie finger x-rayed due to swelling. The previous Friday, Dr. McCrady had written an order for a CT scan. He felt that the CT scan would show whether Mike had normal-pressure hydrocephalus and he did not want to put Mike through sedation and the possibility that he would have to spend a night in the hospital in order to get an MRI. While at the pinkie appointment, the nurse noticed the order for the CT. Since Mike was being very cooperative, approval was given to go ahead with the scan right then also. The pinkie x-ray revealed no break.

The CT scan ruled out hydrocephalus, but did show a small amount of blood in the subarachnoid space at the spot where Mike had hit his head the previous evening. The radiologist or doctor who read the scan did not think it was significant, but Dr. McCrady wanted to be sure; therefore the appointment with the neuro-surgeon, Dr. Frasier, on Wednesday. Dr. Frasier confirmed that it was insignificant and quite normal for the type of injury Mike had received from his fall on Sunday. I tried to ask the doctor some other questions and see if he would read the scan to me, but he was rather blunt and only wanted to deal with the reason Mike was there. At least I have all of the scans/MRIs on disk now and hope to get an appointment with Tracey’s friend to read them to me.  Everyone who has reviewed the scans has mentioned the atrophy (shrinkage) in Mike’s frontal lobe. This means, at least in part, that there is a loss of neurons and the connections between them. (You’ll have to Google it for more details.)

Mike was very calm Wednesday morning at the doctor’s office. After the appointment, we all returned to NR, minus the calmness. Mike was quite agitated the rest of the morning. We figured he was probably tired since he had to be up and out so early. I tried to help him eat something, and he ate a little, but couldn’t be still and was in the grabbing mode. Dr. Rooker, the psychiatrist, came by and I was able to talk with him briefly. He said Mike’s case is a bit unusual in that nothing in particular seems to make a lasting difference. After thinking it over, the next day Srdj, RN, told me that Dr. Rooker decided to taper off the Klonopin and start Depakote. Depakote was tried about a year ago, but Mike was on so many medications at the time that we could not tell if it helped or made things worse or was interacting with something else. It is mainly used for seizures, but also for manic episodes or bi-polar disorders. It takes a few weeks to get into the system.

Elke and I left soon after, in hopes that Mike would settle down and rest.  We had planned to return later, but he stayed much the same the rest of the day so we did not return. We walked around downtown Blacksburg, ate lunch, went shopping for some things for Mike, and then went to Silvia’s and worked on making a photo album for Mike. The Speech Therapist wanted photos with names on the back to use in working with his memory.

Wednesday evening, Elke, Silvia, and I enjoyed eating out and just talking together. Thursday morning, Silvia put out a wonderful breakfast which we leisurely enjoyed together. I called NR and was told Mike was having a fantastic morning. The staff said he woke up happy, smiling, and laughing. Somehow he got stuck on saying “I’m the giant.” Tina would jump in front of him and say “Who’s the giant?” and Mike would smile, chuckle, and say “I’m the giant.” He thought it was funny also, when I would stomp toward him saying “Fe, Fi, Fo, Fum.” We spent several hours with him and he was like that the whole time. We really were interacting with him as if he was a child, but that is what made him laugh, and it was a joy to see. We walked, went to the park and tossed the football around a lot. I was trying to help Elke with her throwing technique and at one point said “Am I teaching her all wrong, Mike?” and he smiled and said “Yes.”  When I asked him to teach her, all that would come out was “I like football” which is what he had been repeating previously. Is hard to know if he was thinking something else and that’s all that would come out, but he did not seemed distressed in any way. I was going to try to give Elke a break from tossing with him, but at that point he only wanted to throw to her.  He still throws a beautiful spiral and usually catches the ball if not thrown too hard. Later, at the park, I acted like a center, and told Mike to do the count. He did, ending in "hike". One time, instead of throwing the ball to anyone, he came slowly over to me, got real close, and said “You go out.” How fun – a huddle! Elke noted that the more we played, the more stable he seemed on his feet.  Now he was turning from me to her to throw or catch. Mike enjoyed swinging, went down one slide, and then was ready to go back and rest. What a delightful time with him. 

I just started 2 Corinthians this week and want to leave you with the following verses:

2 Cor. 1:10 & 11

He has delivered us from such a deadly peril, and he will deliver us.  On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.”

You are all such an important part of this continuing adventure in our lives. Without the prayers of many, I know this would be so much harder. Thank you for your perseverance in prayers and love to us. It means so very much.

MRI and Our Father's Love

The second time they tried to have an MRI done, Mike was given Xanax. After one dose, he was not calm enough to be still so they gave him another dose and waited before trying the MRI.  He remained still for 4 minutes, but that was it.  That facility is not able to sedate him so a new order must be written by the doctor for a different hospital about 1 hour away from NR.  Mike was to see Dr. McCrady yesterday, so I hope he wrote the order. Dr. McCrady doesn't think Mike shows enough symptoms to have normal-pressure hydrocephalus. The psychiatrist, Dr. Rooker, would like to be sure and so would I; therefore, I am being persistent in requesting that it be done.

On my return trip from Ohio, I stopped in Blacksburg to spend time with Mike on Sept. 12 & 13.  He was having fairly good days. We tossed the football together and took a walk.  When he headed to supper, I just slipped out the side door and went to Silvia's.  It was such a pleasant night. My cousin, Todd, came over and grilled hamburgers and we sat on the deck. I really enjoyed just sitting and talking with Todd and Silvia. It felt so normal and the conversation was light and easy. Friday morning Mike was agitated and wouldn't eat his breakfast. I had brought him home-made zucchini bread and was able to encourage him to sit and wait while it was cut and brought to him. He is so impatient about everything. His food has to be cut in small pieces and given to him little by little or else he gorges and chokes.  After that, he went for a ride with the LST while I grabbed his razor and football, went to Wendy's for burgers, and met them at the park. He had calmed down by that time. (often a ride does that) We walked to a shelter and I asked him to eat slowly, giving him the entire hamburger. I was so proud of him as he did eat slowly. He also conversed with me a little. Asking for more french fries, or what was in the bag, etc.  I asked if he would like to shave after lunch and received a "yes".  He shaved himself a little and then allowed me to finish shaving and even trim his mustache & hair.  Mike was always meticulous about his personal appearance and it is hard to see him so scruffy. He just won't do it on his own and won't let anyone else help him either. The NR staff tries, but it is very difficult to shave a moving target. This was the first time he let me do it since he's been at NR. I asked him to try to shave every morning after his shower and he said he would, but we've had that conversation before.

Shaving at the park.

After enjoying the park for a while, he wanted to go shopping. He needed a few things from the grocery store and did well while we were there except repeating over and over that he didn't need toothpaste. He and the LST headed back to NR and I headed back to the farm. Departures are just easier if I don't say anything about leaving.

Back at the farm, I'm trying to get into a routine.  After time with the Lord and breakfast, I am spending 2-3 hours in my room making phone calls, searching the internet, e-mailing, paying bills, filling out papers, etc.  I'd much rather be out working in the yard, but I have to research and make plans for the long-term. I've never enjoyed research and am tired of dealing with all of this, but it's not going away. I figured if I spend a few hours a day it won't overwhelm me and I'll chip away at the process. Had a real breakthrough yesterday when I found my old budget sheets from 2009-2011. I needed some information from these in applying for Medicaid. That was a huge weight off of my mind. I celebrated by spending the afternoon pulling up old flowers and weeds and planting pansies and mums!  Daddy always has some project going that I can usually help with in some way, I help Coley feed the calves occasionally, and help Mom with housework and meals some also. Some way or other, the rest of the day gets filled up with no problem.

We had the Guardian hearing on Wednesday, but I'll save that for another post.  I've had some things on my mind and so that night I made a recording on my phone. It's 22 minutes long so I'll try to condense it when I write it here.

I want to leave you with the lyrics to "How Deep the Father's Love for Us" written by Stuart Townend - Wonderful words and a beautiful melody that has been running through my head for several days.

Lyrics:

How deep the Father's love for us, How vast beyond all measure That He should give His only Son To make a wretch His treasure How great the pain of searing loss, The Father turns His face away As wounds which mar the chosen One, Bring many sons to glory Behold the Man upon a cross, My sin upon His shoulders Ashamed I hear my mocking voice, Call out among the scoffers It was my sin that left Him there Until it was accomplished His dying breath has brought me life I know that it is finished I will not boast in anything No gifts, no power, no wisdom But I will boast in Jesus Christ His death and resurrection Why should I gain from His reward? I cannot give an answer But this I know with all my heart His wounds have paid my ransom (REPEAT)

http://www.youtube.com/watch?v=YV2zMZ-nZ7k   Listen to the song.
http://www.youtube.com/watch?v=BdVQNyQmdM4  The story behind the writing of this song.

Mike's Birthday

Mike's birthday was August 26. On August 31, Mike's Mom, his brother's family (Mark, Jenney, Maggie, Sam), Keegan, Amy and I all met in Blacksburg at the municipal park (aka Caboose Park) to celebrate Mike. Two of the staff members at Neuro-Restorative brought Mike out to the park once we were all set up. At first Mike just walked around in the shelter not saying anything. I fixed him a plate of food and eventually he sat down, but the answer to every question was "no". He would push his plate away, but if we put food on his fork he would open his mouth and eat it. After eating, the group went over to the caboose and swings.  He enjoyed getting up on the caboose, turning the brake wheel, and saying "woo, woo". While cute, it is also heartbreaking because at 57 years old he is so child-like. Later he got on a large plastic chair swing and they said he had a huge smile on his face.  I had gone back to the pavilion so missed that. Even though he never called anyone by name, it was obvious that he enjoyed the day. Whether it was because we seemed familiar or just because it was outside with lots of people, we'll never know.

When asked if he was ready to open gifts, he said "no". We waited a while and then tried again - "no". So I opened them and gave them to him. Hugh and Tracey sent him a pair of shorts that are OSU colors and he wanted to immediately put them on, so we just pulled them up over his other shorts. Mom R. gave him an OSU t-shirt and socks and I threw in a VT football - I mean he is in Blacksburg after all! Mark & Jenney gave him a bag of paper, pens, markers, etc. and he received fun cards. Later, my cousin, Keleigh, who is a photographer on the side, came to take some pictures for us. About that time, it started to thunder and the clouds were rolling in. We were able to get some photos, but Mike was becoming increasingly concerned about the approaching storm and wanted to leave. So the staff and Mike headed back to NR, we took a few more pictures, and then packed up our picnic. Mark and family headed back to Ohio and the rest of us headed to our hotel. These are my amateur pics, will post the professional ones when I get them.

Mike really enjoyed the caboose at the park.
Woo! Woo!

Mom R. and Amy enjoying the day.

Mike with his new OSU-colors shorts on
and tossing his new VT football with Keegan.

A beautiful, hot day to celebrate Mike's birthday.

Mom R., Keegan, Amy and I had a light supper in downtown Blacksburg at The Cellar Restaurant. Was such a nice evening after the thunder storm and we enjoyed sitting outside watching all the Hokie fans go by. Amy is having to be a bit careful about what she eats now, since it doesn't all agree with the baby. That's right!  Mike and I are going to be grandparents in April 2014! So exciting! She is doing well, just keeps crackers or dry cereal handy. Please keep them in your prayers. Here is a link to Keegan's blog telling about all the changes in their lives.

http://youareyoutruerthantrue.blogspot.com/2013/09/changes.html

When I told Mike he was going to be a grandfather, it didn't seem to register. Then a few minutes later he said "I'm a proud parent." :-)

Keegan and Amy left early Sunday morning headed to Raleigh to their previous church and a wedding that afternoon. Mom and I had breakfast and then went to see Mike. It was not one of his good days. We had some chaos at the very start where Mike grabbed a staff member and would not let go. This caused two other residents to get upset, and Mike fell. He was OK. I'm sure the staff member probably still has a bruise. We finally got outside to take a walk with him repeating a strange phrase. I started to sing hymns and encouraged him to sing with me. Thankfully he did join in and we sang several hymns as we walked.  Such a precious time. It was lunchtime when we returned and Mom R and I wanted to get on the road headed to Ohio. Mike became very clinging with me. He pushed his Mom away and grabbed me. I stayed with him so he would eat. It's hard to know if he really knew who I was or if he was just clinging to me because I had been with him. One day when I was there he kept grabbing a staff member named Mike, and saying "I choose you." He has a very strong grip and we have to pry his fingers off. He had grabbed and squeezed my right hand so hard, that it ached for the rest of the day. I had to sneak away a while later and have no idea what the staff had to deal with once I was gone.  The other Mike was there with him so he probably settled on down. Mike is very good with him.

I am still in Ohio.  It has been a real blessing to meet some of the folks here who have been supporting Mom R. and us through prayers and encouragement. Always nice to put a face with a name. Is hard to believe it has been almost 2 years since I've been in Ohio. Mom R. has moved and now I can picture her in her new place also. We've taken care of some errands for her, enjoyed eating out, movies (at home), meals with Mark's family, watching Sam play football & Maggie play field hockey, and I'm getting some of my paperwork done, as well. As a family, we met concerning the next steps for Mike and it helps me so much to have their wisdom, support, ideas and encouragement. 

Here are some specific prayer points:

1.  It is currently 11:00 a.m. and the Guardian Ad Litem should be arriving in Blacksburg to speak with Mike and the staff there at any minute. The Guardianship hearing has been set for September 18 in Richmond Circuit Court. God's will be done.

2. Mike is scheduled for an MRI this Wednesday at 9:30 a.m. Was supposed to be last week, but he was too agitated. They will give him a Xanax prior this time and hope that will be enough to calm him and help him be still. I'm trying not to doubt and be tossed like a wave on the sea. Pray he will be able to lie still and this MRI can be completed.  This is for prognosis, comparison, and the possibility that he has normal pressure hydrocephalus. We are praying that he does, because this is treatable and may help with his gait and incontinence. Please join us in this prayer.

3. I have appealed BCBS's decision to stop coverage when Mike was in Tucker Psych. Pavilion. They did not cover the last two weeks he was there.  Please pray we receive a favorable reply from the appeal.

4. I am starting the search for a long-term facility and need to start the process to get Mike on Medicaid. Please pray for God's leading in all of this and that it will go smoothly without too much frustration and phone tag. Pray the facility is close to home so I can be involved with him and his care more easily and regularly. Pray for God's timing regarding the eventual transition for Mike.

5. Continue to pray for a Miracle of healing in Mike! I pray for Mike's healing all the time and, to be honest, I ask God if that means here on this earth or perfect healing at home with the Lord, I leave that in His hands. It is so hard to think of Mike like this for years to come, but I pray for strength to accept that also, if it is God's will. Then there could be an in-between that many with brain injury live with every day. Only God knows and I will trust Him and believe that He will give us strength for whatever the future holds.