Merry Christmas

WOW, Christmas Eve is here already! A lot has happened over the last few weeks, so I'll do a quick update for now and provide more detail after the first of the year.

Judi continues to try very hard to talk. It is tough to watch her struggle with this because I know it must be driving her crazy not to be able to do one of her favorite things! We did get the swallow study done that utilizes a camera and all went well there. It did let us see her vocal cords and their response and there were no abnormalities identified. We'll just keep working with her coordination of all the activities necessary to make words and wait for her to figure it out. We did identify as well that her current liquid/food consistency is correct for her current condition until she gets better control of her swallow/tongue. I mention the talking and eating together since I believe the issues overlap here.

I am working hard to keep a balanced rehab program for her at home. She still gets tired easily and many of the activities need to catch her when she is the most alert. I have developed a schedule (that shouldn't surprise those of you that know me) that tries to integrate all the Judi activities and fun time as well. As expected there isn't enough time to do everything I would like to do, so we do the best we can while protecting the "us" time which seems to help both of us.

We did get the botox treatments done and they seemed to have helped a great deal. We will have to keep working with the arm and see how much extension she retains. I am also doing a fair amount of e-stim on her arm as well. I keep looking for some sign of restored control, but so far there has been no change.

We did have a setback that I am still worried about. Judi had a seizure about two weeks ago right out of the blue. Prior to this, I have always been able to link her seizure activity to some medical condition or stimulation to her mental state. As far as I can tell, none of these were significant contributors this time. She only had one seizure which was also different from her previous pattern. I was at work but was able to talk her through it over the phone with her caretaker's help. She was very frightened this time after it was all over which is just another indicator that her awareness level remains high. We obviously did not change her seizure medication dose at her neurologist appointment. We did a full range of tests to ensure she did not have any infections that may have lowered her seizure sensitivity level. Everything came back negative. She is periodically spiking a low grade fever which is what worries me since there is no infection driving it. My suspicion is she may have had a bit of a cold/bug that may have caused the temperature spikes. Not sure, but they are over now.

Her neurosurgeon had to cancel her appointment next week so I am not sure when that will be rescheduled. That will also reschedule the CT scan so I'll have to wait a little longer to begin working the prosthesis issue.

As I sit here watching Judi sleep, the reality of how much our world has changed came crashing down on me. I am not sure where God will take us this year, but I have never been as emotionally torn as I am today. Knowing that there is at least one major surgery facing us this year already has me on edge. There is no such thing as "minor" brain surgery! It was exactly this type of "routine" surgery where Judi lost her best friend a couple of years ago when all indications were that she would make a full recovery. On the flip side, the surgery should be the last and put Judi in a position to begin her recovery along the track she was going before the surgery this year. I have always tried to focus on the future and learn from the past. I just can't seem to get the two reconciled quite yet. So if you see me walking around in a fog, don't hesitate to jerk me back to reality.

Here's what I do know. I am blessed in more ways than I could ever describe here. Judi is better this year than last and I have faith that trend will continue. Jessica continues to be the most amazing young woman I have ever known and the impact she is having on young lives as a school teacher will probably never be known. I do know it will be huge. I have been able to spend time with my brother and his wife and they have become an integral part of helping Judi (and me) get better. I have been blessed and truly humbled by all of your thoughts and prayers. I have found support and hearts of gold in some surprising places along the way. Thank you so much for everything.

Merry Christmas to all of you and I pray that you have an opportunity to spend time with those you love and/or hold special.

Steve

Happy Holidays!

I hope that everyone had a happy Thanksgiving and that you had an opportunity to share some fun times with those who are special to you. The holidays are difficult for me and I try to stay positive to the maximum extent possible. I truly have much to be thankful for, but the wonderful memories of the past always come flooding back in. We will certainly make new memories, but I often find myself with tears in my eyes when I see how Judi is today and remember the ball of energy she was during the holiday season. Having my brother and his wife with us for Thanksgiving was definitely a treat and we had a great meal and enjoyed just hanging out together.

Judi is still trying hard to tell me something. She is becoming more and more vocal, but can't seem to get her tongue and lips coordinated to make the sounds into words. We'll keep working here.

We did go to the Manheim Steamroller concert and Judi had a great time there. She stayed tuned in for the entire concert and her right foot didn't stop the whole time. When her neck got tired, she pulled my hand under her chin to help hold up her head so I know she was tuned in. When I asked her later if she enjoyed the music, she quickly signed yes. It was great to see her smile and just re-enforced the fact that she is still in there.

Judi was discharged from outpatient therapy due to lack of participation/progress as anticipated in the last post. One side of me understands this, but the other side sees it as the system condemning Judi to never walking, talking or functioning again by saying "we're done with you." I suspect everyone already knows that I will never let that happen. We'll just have to pick up the therapy at home to the best of our ability until we can get her back to the point where she can go back to therapy. She finished the last of the antibiotic treatments last week (after 3.5 months) and I can tell she already feels better. She is starting to feed herself periodically and if she repeats her previous pattern, she will get better and better as she recognizes the independence it brings.

We have several doctor appointments over the next few weeks and I hope to get a lot of information/results from them. She is scheduled for a swallow study on Monday to see if we can identify any issues and to determine the types of foods/liquids she can tolerate. This study is different from the ones that were done previously using a fluoroscope and watching as food treated with barium moved through her system. This one uses a camera that is threaded through her nose and can look directly at what is going on in her throat. I am sure I will have my hands full during that test. She will get botox again in her left arm in an attempt to reduce the contractions there. We have done this before with limited success, but maybe this one will be the charm. She will also get her first CT scan since leaving the hospital and I need all of you to pray that it will be clear of any issues. If all is well, we will be able to start the work necessary to get her prosthesis designed and built. We also have a neurologist appointment and I am looking to have her anti-seizure medication dose reduced. The NF and supplements I have her on should allow us to reduce them with little risk of seizure, but we will have to do this slow and methodically to make sure she is not at risk. The reduction in medication may increase her energy level as well.

Judi is still struggling to keep her head up on a routine basis. It comes and goes, but I believe it is more mental than physical and we just have to get her to "want" to keep her head up. I keep encouraging her here, but I often get the "stink eye" when I nag her too much. We have to watch this because it can become a physical issue if it goes on too long.

Time continues to be our most precious commodity. My problem continues to be that I have more "to do list" than I have time to get it done. This leaves me with a constant feeling lately of being overwhelmed. Those of you that know me, know it takes a lot to make me feel that way. I just want to make sure that I do everything humanly possibly to give Judi a chance to recover. I mention this because I continue to need your help. It has been a year and a half since Judi's accident and I know that she is not as prominent in your thoughts as she used to be. That's perfectly normal and expected. I think all of us know that it will take a miracle for Judi to return to us. I for one believe in miracles and have already witnessed a few in my lifetime. I also believe in the power of prayer. That's where I need your help the most. Please make an extra effort to remember Judi in your prayers as we enter the holiday season. If you get a few minutes to come by and see her, do that as well. You just might be the one who makes the difference. I still have the feeling that she is desperately trying to cross over and come back to us and all she needs is that one thing to help her break through.


Thanx again for everything,
Steve

PS - Just for the record: I ain't heard no fat lady singing!

Let It Go

Sorry for the long gap since the last post. We didn't have Internet for about a week while our house was torn apart to replace the hardwood floors (again) and then my faithful laptop began to slowly bite the bullet. The power supply overheats and randomly shuts down in the middle of activities. I am using Judi's laptop for now and have finally learned to navigate around Windows Vista (I know why everyone hates it now).

Judi is getting a little better in some areas and losing a little ground in others. I am firmly convinced she is desperately trying to tell me something. She is working so hard to get the words to come out and she is very close. Her awareness level continues to be very high, but she continues to struggle with the input/output aspect. I suspect it is driving her crazy inside that her body is not doing what she is working so hard to tell it to do.

Her memory of past events is clearly getting better. I gauge this by asking her questions when she is "tuned in." She is excited about hockey coming back to Augusta and wants to go to a game soon. I am also trying to get tickets for the Manheim Steamroller concert next month (she loved their Christmas tunes).

Judi's energy level has definitely decreased and her attention span has shortened significantly as well. I suspect that the missing bone flap combined with the long term antibiotic use are the key culprits here. We have another month of antibiotics to go and they won't consider the prosthetic surgery for at least six months after the antibiotics are finished. The weather (barometric pressure) really gives her head a fit as well.

Judi has essentially shut down when it comes to therapy. Again, I think the bone flap is a primary contributor here. That combined with the fact she has to wear the helmet while she is there has made that a negative experience for her. As I had feared, they are going to discharge her from therapy the middle of next month due to a lack of progress/participation. I am told that some people do better after a break from rehab and that perhaps after the prosthesis surgery is done she could benefit from further therapy. They also tactfully told me that people in her age group typically have recovered the majority of what they will recover by this time. I don't want anyone to take away from this that I am accepting this. Those of you that know me also know that I will NEVER give up as long as the good Lord gives me the tools to keep going. We'll pick up the therapy slack at home to the best of our ability and keep her strong in preparation for the next surgery.

Swallowing continues to get better and she is eating well. She still won't feed herself, but we'll keep nudging her along here. She has difficulty "initiating" most actions since the surgery. If you ask her a question, most of the time you have to lift her arm before she will respond with signs. This one has been extremely difficult for me to take because she was doing so well before the surgery. Since there were no issues in the surgery, I am expecting all of this to return once we have the prosthesis back in place.

The head continues to be my nemesis. Some days she will hold it up pretty well and others, she'll keep it down most of the day. This makes it very difficult to work with her on most activities (writing, item identification, etc.). As I said before, I can't restrain her head like I did before to help train her neck muscles due to the shape of the remaining bone in her head. I'll keep working hard here because the benefits are so great. If anyone has any ideas or experience here, I would appreciate the input.

We are continuing neuro feedback (NF) hot and heavy. She seems to respond well here and perhaps that will be the difference in success and failure in the long term. We continue to make our trips to NC at a reduced frequency due to the fact we are focusing on the stabilizing sites only. Once we start changing them, we'll increase the frequency of the trips.

I think that pretty well covers where we are today. Many of you know that I love music of all types and listen every time I get a chance. Judi used to get a kick out of the range of music I listened to. It is not uncommon for me to listen to Pink Floyd and Garth Brooks in the same sitting. I have become a huge fan of the Zac Brown band of late and often think his tunes are telling my life story. One of his recent tunes "Let It Go" hits very close to home these days. If you haven't heard it, give it a listen.



One portion of the refrain runs like this:

Save your strength for the things you can change.

Forget the ones you can't.

You gotta let 'em go.

I'll leave it up to you to apply those words to your own lives and would tell you that it is very good advice. I'll also admit that it is easier to say than to put in practice. I know that things happen for a reason and I learned long ago that I am not in control of where this journey will ultimately end. I also know that I made a vow 30 years ago to Judi and God that I would "love, honor, protect, cherish her in sickness and in health until death do us part." I mention it here because I still need your help and prayers to make it through this challenge. Judi loves to see old friends so don't hesitate to stop by if you have a chance even if it is only for a few minutes. I know in my heart that Judi is going to make a significant recovery beyond where she is today, but she won't be able to do it without our help.

Steve

Pickin' Up Speed

It has been a busy few weeks (seems like they all are these days)!

The stitches were removed from her incision and it has completely healed. I watched that like a hawk to ensure we didn't get any additional issues and that it closed as soon as possible. Her hair is growing fast and is very thick. Judi always wanted thicker hair - I'll remind her one day that she picked a difficult way to get there.

We have completed the IV antibiotics and now she is on an 8 week dose of oral antibiotics to make absolutely sure that there is no infection remaining. Getting the catheter (PIC) removed from her arm turned out to be quite the circus. I'll spare you the details, but we ultimately had to take her to Augusta Vascular Center to get it removed. It did not dawn on me at the time, but this is the center where many of Judi's co-workers from her Radiology Intervention days at University Hospital had gone to work. I understand that they had a good reunion and I am sure it was good medicine for Judi. I think it is always a little difficult for others to know if Judi truly recognizes them or not, but I believe that she does because I always see a change in her behavior after these types of encounters. Judi's awareness level is very keen, it is her input/output ability that she is struggling with. I continue to believe that one of these encounters will be what pulls Judi across the gap just out of the blue one day. I encourage you to come and visit when you can even if it is just a few minutes. I know that inside she probably feels a little isolated and those of you that know Judi also know that she loves to be in the middle of everything!

We have resumed neurofeedback (NF) training at home and we made our first trip back to NC last week. We have decided to limit the training to what I call the "stabilizing sites" for the next few weeks while Judi continues to regain her energy following the surgery. She is starting to engage more, but is still far from where she was before the surgery.

Judi is starting to hold her head up for longer periods of time. It is clear though that she does it when she wants to. When she wants to withdraw, she will drop her head and act like she is asleep. I can usually tell when she is "playing possum" or just plain tuckered out. We'll keep working here since it is so critical for her longer term well being.

Judi's swallowing has improved significantly and she is moving from pureed to courser ground foods. Thanx to Rebecca and Joel Cantrell for the awesome baked ziti and homemade cheesecake (both are on Judi's list of favorites). Judi enjoyed both a great deal (Jess and I too!). We are still struggling to get Judi to feed herself, but as long as she is eating well we can take our time here.

Rehab is going OK. We are still having issues with energy level and desire to engage/participate, but it is getting a little better each trip. She is standing again in the standing frame at rehab and at home as well. This is probably the most important physical activity for her since it engages so many muscles and holds the best potential for restoring use of her left leg long term. I am hoping that completion of the IV antibiotics will restore some of her energy.

Please continue to keep us in your prayers. Judi and I both are drawing heavily on the strength they bring us. I'll be straight up with all of you and let you know that I don't think I could make it without the strength that seems to come when I close my eyes and ask God to help me make it one more day. We suffered a setback with the infection, but after all we have been through this is just a bump in the road.

Steve

Deja Vu

Judi continues to fight her way back, but the recovery is very different for her this time. Her awareness level has become one of the key factors in her ability to bounce back. Right now, it is working against her I think. Most of you know that Judi was a Neuro ICU nurse for many years and clearly understands how serious her current condition is. She is struggling in many areas and it appears that at least part of it is due to her unwillingness/inability to engage in the difficult tasks. I am sure that the fact she knows she has another surgery looming in the near future is fueling this. Please don't interpret this as a criticism of Judi, just a reality that any of us would have to deal with in her situation. I read a book that was written by a neurologist that had a severe stroke and ultimately recovered (took eight years). Her description of her mental state describes exactly where I think Judi is today. She was keenly aware of everything around her, but couldn't communicate with those around her. Her frustration level drove her to do many things that impacted her recovery (positive and negative). I can only imagine what is going through my girl's head today.

She has reverted back to letting her head hang down most of the time. She does hold it up periodically, but for short periods of time. As you know, this was a battle that took us almost a year to win before this last surgery. It has once again become my key focus area. It was such a positive impact for her the last time and hopefully it will be again.

She is having a great deal of difficulty with swallowing again as well. This one really worries me because it is more than likely an artifact of the surgery and not something she is currently controlling. She was just starting to transition to food that she had to chew with her teeth before the surgery, now we are struggling with pureed foods. I'll keep working with her and hopefully this will recover as well. It takes a great deal of patience to work through this and I'll admit I am having to dig deep to find the energy to do this again with the knowledge that we will most likely have to do it again after the next surgery.

We went back to rehab therapy for the first time since the surgery on Friday. It didn't go very well. Judi just didn't engage in any of the sessions. I am unsure how much of this is due to the hospital stay, the antibiotics that continue or the missing bone flap. Hopefully it is predominately the first two and she will get back in the groove soon. They were already talking about the potential to discontinue therapy while she recovers further from the surgery. I got them to agree that we needed at least a month before making that type of decision. This would allow her to recover from the surgery and get off the IV antibiotics before deciding. If it is indeed due to the missing bone flap, it won't change a lot if it follows her previous history. Once again, we had just got her up in the "walking machine" the Monday I had to take her to the emergency room. I can't tell you how many hours went into getting her to that point.

We are working with her therapist for neuro feedback (NF) training to see what we can do with her bone flap missing. I am praying that this will be her "ace in the hole" for this recovery. I have already seen a tremendous impact of the therapy and hopefully (I have used that word a lot) it can help her deal with the situation and come out on top.

I know this entry seems to be overly negative, but it is what it is. I try to keep perspective and realize that it could have been a lot worse. Cognitively, she is where she was before the surgery and that is a huge success. She did not lose any muscle function as a result of this surgery. She has healed well and seems to be getting stronger day by day. She still likes to dance in her wheel chair (I take her hand and we whirl around the room). She still smiles when I kiss her and tell her how much I love her. She still melts my heart when she reaches up and gives me a hug. She always seems to know when I need one and helps me find the energy to keep on going. Rest assured that I am more committed than ever to doing whatever it takes to get Judi the best recovery she can get. The challenge will just be different this time. I have never walked away from a challenge in my life and I'll do everything I can not to let Judi down. As they say, I ain't heard no fat lady singing and if I do, I'll just stuff something in her mouth!

I feel like I need to revisit a topic I mentioned a long time ago in a blog entry and many of you have heard me talk about it since then. Please take time to stop and "smell the roses." You just never know how long you have with those you love and care for. A good friend and co-worker lost his wife this week after a tough battle with cancer. His name is Charles Lampley and he loved his wife Rhonda with all his heart. A couple months ago, we had a long talk about all the challenges that God had placed in front of us in the previous year and this topic came up near the end of our talk. Please take a moment to keep Charles and his family in your prayers as they face this difficult time and take stock of what is truly important in your lives as well. It just might surprise you that what you "thought" was important and what is "truly" important are very different and you didn't know it.

Thanx as always for the thoughts and prayers. Feel free to come and see Judi when you can. The visits always do her good and challenge her to find those memories that are tucked away inside.

Steve

Home Again

Just a quick update for now. It has been a long week and I have to get some sleep.

Judi came home today and is doing very well. One of the samples taken under the bone flap did finally grow out a "bug." It took almost a week before it surfaced so we have spent the last couple of days determining the best course of action to ensure the infection is cleared up once and for all. An interesting item is that the overall belief of the team is that the infection was there when the bone flap was inserted last year and just took a while to surface.

She will be on IV antibiotics for the next four weeks followed by eight weeks of an oral antibiotic. The IV schedule is a killer. One of the doses is at 2AM and it takes about an hour to go in which will make for some long nights for the next month. Hopefully we can get on a twice a day schedule vs. the current three a day schedule once the levels stabilize. Thanx to my sister -in-law (Karin) for stepping up and helping me with the 10AM dose. There is some issue with business licenses that prevent Judi's caretaker from administering the antibiotic.

Judi seems to be at about the same place mentally as she was before the surgery. I was really worried about this since she showed significant losses following the last surgery that took a long time to recover. She has been very tired and hopefully that is just a result of the entire hospital stay and not a longer term problem. She has been cleared to go back to outpatient rehab and we'll just have to watch her head like a hawk. Her Dr. did make a decision not to have her wear a helmet due to a concern with some edges of the skull having the potential to damage the skin if it was repeatedly rubbed. We will have to be very very careful.

I'll provide more detail and some addition info when I have more time. Just wanted to let everyone know she was home and doing well. Thanx for all the thoughts and prayers - we surely need them.

Steve

Surgery Follow Up

Well, another one is in the books. Judi had surgery Wednesday afternoon and we had to remove the bone flap that was created during the craniotomy procedure last year. I can't describe how disappointed I am that we had to do this, but it is what it is and we'll move on.

When Judi's bone flap was re-inserted, there were three areas where some bone loss occurred. This is not uncommon. The most pronounced spot was just about in the top middle of her head and was about the size of a quarter. We had noticed that the skin in these areas pulled inward over time as opposed to growing across these areas which is what normally occurs. Her neurosurgeon could not explain why this was happening and had not seen it before (good old Wilkerson luck at work again). We had been watching these areas for quite some time to monitor for any indication of skin breakdown since this was essentially the only barrier between the outside world and the dura matter which surrounds the brain. The area on the top of her head was the culprit.

The surgery was very successful and it appears that we caught it right at the start. All of the dura matter was still intact and showed no signs of degradation or infection. Several samples were taken to determine what type of infection (if any) was present in the areas surrounding the brain. So far everything has been negative which is excellent news. This is not only important for the right side of her head, but also indicates that there is likely no infection that would get to her shunt (installed on the left side) which would require removal/replacement. The fact that there is also no indication of infection in her blood stream alleviates the concern over the hardware that is in her back becoming infected as well. If it gets infected, it could require removal/replacement as well. So if you wondered why this is such an emergency for Judi, this should give you a good picture of why.

The neurosurgeon did identify a very thick layer of scar tissue under her bone flap when he removed it. It is typical to have some, but this was much more than normal. Some of you may know that Judi's brain had never returned to the normal position on the right side after all of the surgeries were done. There is a possibility that this was the cause. So if there was any silver lining, this was probably it. The surgeon also identified what caused the skin to appear "pulled in" across these areas. For some reason, her skin adhered to the edges and cracks where the bone flap and existing skull mated up up. It was just a matter of time before the skin pulled apart in one of these areas.

Sooooo, where are we today. The bandage was changed this AM and the incision looked great. She is very tired and comes and goes pretty frequently from sleeping to awake. She is moving everything she moved before she had the surgery (very good news - last time it was a couple weeks before it came back). I also got her to smile and laugh today so I know she is getting better. I think the key difference for her this time is that her awareness level is VERY high. I can't say this any other way - this time she was VERY scared. I could see it in her eyes and I did everything I could think of to re-assure her (including not letting her know I was scared too). If no infection surfaces, she will be able to go home Mon/Tues time frame. She'll be able to go back to outpatient therapy, but will have to wear the dreaded helmet again. She'll get IV antibiotics for 4-6 weeks as a precaution and if all goes well, we'll be back in 3-6 months to have the prosthesis installed (yep, another surgery). Not sure yet how this will impact her ability to get neurofeedback therapy.

Thanx to everyone for the support and prayers as we have gone through this latest bump in the road. Judi had a lot of momentum going before this last surgery and I pray that she will be able to continue improving when we get her back home. We could sure use your prayers to keep the healing and recovery process moving in a positive direction. I'll try and do a better job of keeping the blog up to date, but time has become a difficult commodity to come by these days. I had been working on a new entry for a couple of weeks before all of this happened. I usually don't have time to sit down at the computer until the very last thing of the day and often wake up in the same place I started (must be gettin' old).

Steve

Hi all! Dad has been up to his ears in the business of day to day life, so I'm going to give you a quick update.

Mom was readmitted to the hospital Monday night over concerns about a spot on her head where the bone flap is recessed. There are signs of infection which is a cause for concern because it can infect the bone, as well as the membrane and tissue underneath.

She will undergo surgery (again!) this afternoon to fix this issue. There is a small chance that they will not have to do anything major, and a plastic surgeon will simply fill in the area. It's more likely, however, that the bone flap that was originally removed just after the accident and replaced last August will have to come out again and be discarded. After a period of healing, a prosthetic flap will be made and inserted.

We are frustrated and saddened. If the flap has to come out it means another big surgery, and she will have to be without it for about six months. This means she will need the helmet, and extra caution pretty much 24/7, as she will have a portion of her brain only protected by skin. We're not sure, but this will probably mean putting a stop to the neurofeedback for a while as well, which is frustrating because it seemed to be showing some improvement.

In any case, we are just trying to take it in stride. At the beginning, we were told there was a chance this would happen, and Wilkerson luck seems to be showing itself again! But we'll keep our fingers crossed and see this through.

We will update again later to let you know how everything went. Thanks as always for your care and concern.

Hot! Hot! Hot!

Seems like it went from cold to hot in a hurry this year. I have had to watch Judi's skin closely when we go outside for any length of time to ensure she doesn't get sunburned. She has always burned easy, but she is really pale after all the time inside over the last year.

I'll go ahead and admit that last week was one of the toughest I have had in a while. July 2 was our 30th wedding anniversary. Judi and I had planned to go to Alaska this year for a 2 week trip to celebrate. She has always wanted to go and I told her that we would just delay the trip until she was a bit stronger. She seemed to understand and I pray that I will be able to take her some day. I did take her to the Mall for the first time since the accident and she seemed to take it all in and enjoyed the environment. I also hooked her up with a Starbucks Iced Coffee which she thoroughly enjoyed. For supper she had Lobster Ravioli from Macaroni Grill and ricotta cheese cake (a couple of her favorites). After I got over the tears that night, I gave thanks to God for being able to share a wonderful day with the love of my life and prayed hard for those that are not as fortunate as I am.

We also celebrated Jessica's 27th birthday on the 4th of July. I can hardly believe that our "little girl" is all grown up and taking the world by storm. I don't know what I would have done without her help and support this year. I know this has been terribly difficult for her, but she has always stepped up to support me at every step along the way. I'm awfully proud to be called Jess' Dad!

Judi is holding her head up as a matter of routine now! She does her best to hold it up all of the time, but the muscles are just not strong enough yet. She is also looking around at the things going on around her and is absorbing it like a sponge. When we had to use a restraint to hold her head up, she was forced to focus on what was directly in front of her. Now she can easily look side to side and see what is going on around her. I also believe she is reading signs. I have asked her a lot of questions when we are out and about as well as driving and she is clearly comprehending pieces of the data.

Now that Judi is holding her head up, we are planning to put her in the full body harness and get her on the treadmill next week. The system will support her body weight while she starts to take steps. There is a fairly good chance that her natural instincts will kick in and and she will start to walk. It is obviously a LONG haul to get her strong enough then to carry her own body weight, but that is a winners problem from my perspective. I have also shifted our electrical stimulation efforts from her neck to the left arm/leg which should also aid in this effort.

We have started the NF training at home (YEAH) and she is doing great with it. We have to go back to NC every week until we are sure she is stable with he sites we are training on. They are open on Saturday until 11 AM, so we are currently planning to drive up at the crack of dawn on Saturday, do her therapy and then drive back. If Judi can tolerate it, this will be the best option for us overall. She won't miss any of her traditional therapy sessions (speech, occupational and physical) that run on a Mon-Fri schedule. I won't have to take time off from work (I still have a very difficult job and it is what is paying the bills). It is also a huge effort to pack up and take everything that is necessary for an overnight trip. If we need to though, we'll go up on Friday night to make the Saturday morning sessions.

Come and see her if you can. It is good medicine for her and possibly for you as well. Thanx Ang for the goodies that came with the visit, the entire Wilkerson family enjoyed them. I continue to look for things to expose her to that may stimulate her memories, so if any of you have ideas don't hesitate to let me know. Please continue to keep us in your prayers. I am more convinced than ever that Judi can make a full recovery if we continue to be in her corner and help her along the way.

God bless,
Steve

Roller Coaster

Holy cow! I didn't realize it had been nearly a month since the last post. That probably is an indicator of the pace at which our lives are going these days. Lots of new news.

Judi is finally starting to hold her head up. It is still for brief periods, but the more she holds it up, the stronger she gets. We have focused a lot of energy here using multiple therapies. This will significantly improve Judi's quality of life.

A couple weeks ago Judi made another significant cognitive step. Jess was working with her on her marker board and asked her to write her name. Judi promptly did just that. Jess came running in to tell me. We then drew a picture of a cat and asked Judi what it was, she quickly wrote the word "cat!" I almost fell out. The next day at therapy we wrote several words on index cards and had Judi identify the object that we had written down; she got them all right. This tells us a LOT of things: she can read, she can process the information and she can convert it into actions (all are cognitive skills). What a gal!!!! I keep telling everyone she is in there just trying to get out.

We can hold a reasonable conversation using her "yes/no" signals. We are also teaching her some basic sign language (she does her name, Jess', mine, when she is hungry, etc.). These are all huge steps for her. It still takes a lot out of her, but we know that she is capable.

Neuro-feedback (NF) is clearly helping in all of these areas, but it is only a piece of the effort. I have spent almost two weeks of the last month in NC getting NF training for her. Last Tuesday was one of the best days I have had in a very long time. She was animated, smiling, laughing, signing to us with confidence and I had a chance to see the fire that Judi always had come to the surface. She also wolfed down two huge pieces of quiche for supper that night (one of her faves). Unfortunately, Wednesday morning was one of the worst days I have had in a long time. Judi had a series of seizures that morning and I ultimately had to take her to the hospital in an ambulance. Needless to say, I was crushed. The local hospital there did a great job and performed all the appropriate testing (a couple needed a little prodding, but as you all know, when it comes to Judi I don't take chances). She did have a urinary tract infection and that was probably the key culprit for lowering the seizure sensitivity level. Her seizure med level was also on the low end since it occurred just before she would get her morning dose. This is also one of the things you have to watch with NF as the brain becomes more aware and active. She recovered fine, but it was a big setback for us. We know that Judi has a lot of recovery left in her (I am still holding out for a full one) based on what we have seen. I am going up next week for additional training and we will be doing some of the foundation training at home after that. They have a home unit that they rent out once we have identified the correct training frequency. We know we have that now. So I will be doing the foundation training at home (I haven't figured out how to fit that in yet) and then taking her once a week or so to train in the problem areas where it needs a professional to monitor.

We are also trying to get her medications sorted out to the appropriate levels. As her brain "wakes up" due to NF and some of the supplements we are giving her, she can actually become over medicated by taking the medicines she has been taking for a while. This has been a real balancing act for me. As you can imagine, doctors don't want to depart from the accepted treatment plan due to the liability that comes along with that. It usually boils down to me accepting the risk after understanding all the issues associated with each of the paths. I have faith that God will show me the way (he has so far) and I refuse to let Judi miss the opportunity to recover because we stayed within the traditional guidelines.

Judi's original caregiver is also returning to work for us tomorrow (YEAH!!!). Her sister is much better and she wanted to return. We were able to get her replacement another position as well. This is a huge relief for me and I am sure Judi will be happy to see her again.

PLEASE keep praying for us. Come and see her if you have a chance. Let me know if there are things going on that might spark that return to us and I'll get her there. One of the things that often happens about this time in the recovery of a brain injured patient is acceptance that what you have is what you are going to get. Judi has already shown us that she is a fighter and we have to be in her corner to help her along the way. Don't forget her. I am telling all of you that she can still make a full recovery, but she can't do it alone.

Thanx for all the help so far!
Steve

Never, Never, Never Give Up!

Winston Churchill sure had it right. Some of you may have noticed that Jessica, Judi and I are wearing silver necklaces with a round pendant on them. The pendant has these words engraved on it and we use it as a reminder on those tough days. A lot has transpired since my last post so I will try and update everyone to where we are today. Now that school has ended for the year, I will try and have the real writer in the family (Jess) update the blog more frequently.

We have jumped into the world of neurofeedback (NF) with both feet. The quantitative EEG (QEEG) provided a lot of insight into the current state of Judi's brain. I could go into a lot of technical discussion here (I have become much more knowledgeable of the brain than I ever wanted to be), but here are the basic facts: 1) the right side of her brain showed abnormal power levels at low frequencies, 2) above the low frequencies, ALL sections of her brain showed normal power and 3) there were a significant number of connectivity issues between the right and left side of her brain. The key take away is that all sections of her brain are functional (evidenced by normal power above low frequencies). This would indicate that Judi is a great candidate for NF to correct/improve the issues she has. We have made significant progress in modifying her brain waves at the low frequencies, but have not seen any significant changes physically yet. I could list a bunch of little things that have changed, but we are looking for some major changes soon. The logistics of getting her to the EEG Centre are taking a toll on us. It is about a three hour drive one way to get her there and we are working hard to get her to the point where we can do the training at home. We need to make sure we have the training protocol "dialed in" before we do that. Remember that we are impacting her brain waves by this training and if you can do good, you can also do harm.

Physical therapy continues to go well and Judi is getting stronger every day. The most critical issue is still her neck and her ability to hold her head up on her on. We are performing electrical stimulation on her neck muscles and her left side arm/leg at home. Although it consumes a considerable amount of our home time, it is clearly having a positive impact. Once we have the neck issue corrected, we will be ready to get her on the treadmill (supported obviously) and start working on walking.

Speech continues to show very slow improvement. She is very vocal in her sleep and is obviously trying to put words together. I am positive that it is just a matter of time. NF could help this issue as well.

Her cognition continues to improve. She is VERY aware of what is going on around her and understands even subtle issues. I am sure she is struggling to come back to us and I am sure knowing Judi the way I do, she is very frustrated as well. Again, this is a primary focus of the NF program.

We are in the process of recovering from the loss of the caregiver that has been with us since Judi came home from the hospital. Due to the need to care for a family member, she had to resign from her position. This was a huge setback for me. She did an awesome job and I trusted her to care for Judi with the same tenacity and compassion as I do. We have found a replacement that I believe will do an equally good job, but it will take several months to bring her to the point that Judi gets the same care/therapy she had been receiving. I am currently gapping that effort as she comes up to speed.

I think that is all the big stuff for now. Please continue to remember us in your prayers. I encourage you to come and see her if you are so inclined. She enjoys visitors and I am sure that it means more to her than any of us realize to see friendly faces and revisit memories associated with them. I am also sure she is glad to see/hear someone other than me.

Steve

One Year Later

Have you ever completed a questionnaire that asked you the following question?

“Where do you see yourself in five years?”

What a ridiculous question! With all the uncontrollable factors at play in our lives, the whims and fancies that change our directions every minute of every day, who could possibly give an answer to that question? I can certainly tell you that five years ago, or a year and a month ago, I could not have even come close to predicting where I am now.

One year ago, our lives were changed forever. A split second saw the end of a chapter in our lives and began a new one whose ending we could not even begin to guess. In the space of an hour on April 26, 2009, I went from worrying about finding a job for the new school year to wondering if someone was about to walk out of the trauma unit doors and begin a conversation with “I’m very sorry.”

At that moment, and in the days that followed, the thought of ‘a year from now’ did not even begin to enter my mind. As those early days passed, we thought in days, and weeks. We wanted to see IV drips stopped in so many days, or tubes pulled in this many weeks. A year was so far away that surely all of this would be finished by then.

But this has turned into a longer chapter than we had originally imagined. At the beginning, we could not even imagine how long it would take, and how slow the progress would be.Each day we look for the signs that Mom continues to get better. Some days it’s easy to be optimistic, and some days that glass is just half empty. But by little steps and inches, she gets better.

In some ways, it’s like what I imagine having a baby must be like. (Hear me out on this one.) You look for milestones – that first laugh, the first smile, the first words. In a way, Mom has been reborn. She is learning to do everything again. The first time she laughed, it was cause for celebration. Now she laughs and smiles with us every day. The first time she was able to do “Yes/No” responses, it was cause for celebration. Now she can answer questions to help make sure she gets what she needs at any given time. Everyone who sees her from the medical perspective sees phenomenal progress and improvement. We are always looking forward, pushing her gently but surely toward toward another step.

This is not the story we wanted to live, but one year ago we learned that sometimes life just doesn’t go according to plan. But we have come so far in one year; where will we be one year from now?

Blazing New Ground

A lot has gone on in the last couple of weeks. It is hard for me to believe that it has been almost a year since this journey began. I'll try and do a special blog entry on or near the anniversary of Judi's injury (April 26) to give everyone a clear picture of where we are today and what the near future holds (as I know it today).

Judi had her 3 month follow up with her neurosurgeon last week and a CT scan of her head. Everything looked good and her shunt is performing well as evidenced by the size of the ventricles in the brain. The only real concern we have associated with the multiple head surgeries are two small areas on her head where she has divots (my term) in her skull where bone has not filled in. It is not uncommon for this to occur, but the shunt causes skin to be pulled into these areas tighter than would occur under normal conditions. This establishes the conditions for skin breakdown to occur. If any significant skin break down occurs in these areas it could result in fluid leakage from her brain and that is a medical emergency for her. I have been watching these areas like a hawk from day one and we don't believe this will be a problem in the long haul.

We began neurofeedback therapy last week as well. Judi handled the three hour trip well. Thank goodness for the DVD player in the van!! She slept for about half the ride and watched videos for the other half. I was able to get a lot of insight on what is going on with Judi's brain function during the evaluation activities and the first feedback session. During the feedback session, there is a real time localized EEG running that monitors her brain's response to the video input. We were able to quickly identify the frequency where Judi's brain is exhibiting "slowing." The neurofeedback process essentially identifies these frequencies and then begins to exercise the brain to improve response in this range. This is where I struggle a bit with what is reality and what is just a good sales pitch. The line being that neurofeedback is an ideal therapy for this type of brain issue. The exact mechanism by which neurofeedback works is a bit "fuzzy" at best and my engineering thought process struggles a lot with a lack of direct "cause and effect" data. There is a lot of evidence that the process can produce significant improvement, so we are going to continue for a while and monitor Judi's response. If it works, I don't care what the true mechanism is. I'll keep you updated as we get more exposure to the process.

Last weekend Judi got her first real haircut since her accident. She thoroughly enjoyed the experience and it was great to see her relax and smile as they shampooed her hair and pampered her. I asked her who did a better shampoo job, the girls or me - she busted me and immediately pointed to the girls!!!! We all had a big laugh and it was a very positive experience for all of us. I plan to get her to the manicure/pedicure next. She always loved this in the past and was always her treat for herself. I asked her if she was interested and she smiled and signaled yes.

We have a neurologist appointment this Friday for followup as well. I have already talked with the Dr and the plan is to evaluate where we should keep Judi on the anti-seizure medication. As you may recall, we had placed her on the medication to see if she was having some low level seizures that we were not seeing external symptoms of. I have not seen any positive change that would be attributed to this potential issue and the reality is that the drug has a slowing effect on the brain (that's how the seizures are controlled). Judi has shown significant cognitive improvement over the last couple of weeks and I would like to eliminate the impact of the drug to see if she improves more. Unfortunately, seizures often occur when anti-seizure medication dose levels are changed. We'll have to be ready.

Tomorrow (4/15) is Judi's birthday. I have been picking on her for a couple of weeks about getting old and she always gets a laugh out of it. I will admit that it will be a bit of a struggle for me to remain positive as we celebrate her birthday. Judi turned 50 last year and we had a lot of fun celebrating it. I have a lot of very vivid and fun memories of where we were last year at this time. We made a lot of plans for the coming year and out years as well. We had finally reached a point in our personal and professional lives to "stop and smell the roses" as they say. Little did I know that in less than two weeks our lives would be drastically changed forever. So as Judi turns 51, we have a whole new life ahead of us with many new and unique experiences and challenges. I wonder what next year will bring?

Thanx again for the prayers and continued support.
Steve

Time Flies??

I can hardly believe it has been almost three weeks since my last post. It seems that I continue to run out of day before I run out of things that need to be done.

Judi continues to improve with her "yes/no" responses. We have settled on using the hand signals and she grows more and more responsive with the signals each day. We still have to prompt her to answer the majority of the time, but she answers confidently when she understands the question. I have slowly but surely shifted into teaching her things that she appears not to understand. This is a slow process because I want to make sure she comprehends the topic(s) as opposed to simply answering the questions. This is a key area for us and hopefully she will continue to improve.

The BOTOX injections in her left arm/hand are showing positive results, but we have a LONG way to go there. She is trying to control them, but the response is minimal and sluggish at best. We will keep working hard on them and I have to remind myself that the right side was in a similar condition not too long ago.

Judi's legs continue to get stronger every day. We have been working hard in therapy and at home to strengthen these muscles and reactivate the nerves in the left leg using weight bearing activities. The only thing that is keeping us from putting her on the treadmill (with her body supported by harness) is her head position. We are still struggling in a big way to get her to hold her head up. We seem to make a little progress here and then lose it all again. We will keep working here, but I am afraid we are in for a long and frustrating journey.

Her first neurofeedback session is scheduled for April 6th. I am excited about the possibilities and hope that some new doors can be opened for her as a result of the sessions. I am concerned about the toll that the trip will take on her (it is about a three hour drive), but we'll adapt as we see how she responds. I had the passenger seat in the van modified to swivel so that we can transfer her from her wheelchair to the seat. Hopefully this will be more comfortable for her, but I am not sure she will be able to sit there safely with the current limited control of her head. We'll figure it out.

I guess that's the big stuff. I think it is important to make one key point to everyone that has followed Judi's recovery along the way: after almost a year, JUDI IS STILL GETTING BETTER! It is slow progress, but we are clearly still making progress. I have done countless hours of research on brain injuries and the one common theme is that people will usually continue to recover as long as they are receiving therapy. Much of this data has unfortunately been gathered by monitoring the troops that are returning from the wars that have similar injuries. The old school of thought was that after 18 months a person that had suffered this type of injury would have recovered about all that they were going to. The recovery obviously slows over time and what usually happens is that the support system just accepts where they are and the person no longer gets better. I will admit that I can see how this would happen. There are days when I am so tired I am not sure how I can keep pumping energy into Judi. I can't tell you how many times I have held her close, closed my eyes and asked God to give me the strength to make it just one more day. He always seems to answer. I am convinced that it is your prayers for Judi and me that are making this happen. Easter is just around the corner. Many miracles occurred leading up to, during and after this time in our Christian history. Perhaps there is another miracle in the making for Judi. Please remember us in your prayers and know that I will keep on working with her until the day I leave this earth.

Happy Easter and thank you all for your support,
Steve

Busy Busy

Believe it or not, we are getting busier and busier. We have a lot of activities in progress and Judi continues to get better each day. This will be a quick update with more details to follow as we get closure on some of these activities.

I think the biggest news is that Judi is clearly starting to consistently work with us on yes/no responses. We have been working hard here and we are finally getting her to provide responses to very simple questions using cards (red-no, green-yes) or fingers (two-yes, one-no). We try to string these in multiple linked questions to ensure that she is not just guessing. She is definitely understanding, but still a long way to go. This one is VERY big for us. This clearly marks a step to a new level and I am very excited that we can finally start to communicate with her.

BOTOX injections for her left arm/hand are scheduled for next Monday. We hope to see significant results from this treatment.

Judi continues to be very vocal and we continue to push hard in this area. Any day now I expect her to make the break through and start talking to us.

I have decided to have Judi undergo some neurofeedback therapy sessions. I have been researching this for a while. I have talked with several therapists and people that have utilized the therapy as well to aid in making this decision. It is very hard to describe the process, but it is basically a mapping of the brain with subsequent "training" of the brain utilizing external inputs and electrical feedback to the brain to reinforce positive responses. Although the primary success has been in the area of ADHD/behavioral recovery, there have also been significant successes with traumatic brain injuries as well. As I have mentioned before, I am convinced Judi is fully aware of her surroundings and that there is a specific gap that exists that we must figure a way around for her to fully recover. Based on my research, there is a real chance this therapy could succeed and it cannot hurt her. Unfortunately it is still considered experimental so insurance doesn't cover it and availability is limited. One of the best in the country is located in North Carolina so we will be making that trek on a frequent basis for a while.

That's pretty much it for the update. I try to keep the blog focused on Judi's status, but I need some help if possible from the team. As I indicated above, we are getting busier and busier every day. As Judi continues to recover, she requires more and more one-on-one attention. That combined with the pending out of state therapy is making it impossible for me to get all of the things done around the house that needs to be done. I am looking for someone to come in and clean the house on a regular basis. If any of you could recommend someone, I would greatly appreciate it. Several of you have volunteered to do it, although I greatly appreciate the offer, I can't impose on you at that level. I am also looking for a pool of three or four people that I can train to sit with Judi for a few hours at a time. Again, many of you have volunteered here as well. While I encourage any of you that are interested to come and "hang out" with Judi, I am trying to protect the line between caretaker and friend as much as possible. I am sure that with a little thought all of you can understand why that will be important when my girl recovers. If you could recommend someone, I would greatly appreciate it. I obviously would rather have someone that is recommended by people that care for Judi than trying to interview them and determine their trustworthiness. If you don't have it, my e-mail is swilk@knology.net.

Thank all of so much and keep praying for us. It IS making a difference!

Steve

It's the Little Things

Wow, what a gorgeous weekend! I hope everyone got out for a little while and enjoyed the beautiful weather. Judi and I spent some quality time outside both days. She is over the "crud" and feeling great. On Saturday, we did some shopping and then had some lunch outside and just enjoyed the atmosphere. On Sunday, we spent the morning just sitting outside hanging out with each other and listening to some of our favorite tunes. I talked to her a lot and she seemed to soak all of it in. It is awfully good medicine for me to hear her laugh and see her clearly enjoy herself. The new room is working great for her and she enjoys letting the sun shine in. I think it greatly reduces the "cabin fever" for both of us.


Judi continues to show significant progress physically. She is steadily regaining control of her left leg, but there is still a very long way to go. We had her evaluated for BOTOX injections in her left hand and arm last week to relieve the contractions she has experienced there. The results indicated these are very good candidates and that she should get some significant relief. I am still very concerned about where we are on this arm, but we will continue to pursue all available options to restore it to maximum functionality. Neck strength continues to improve as well. She now has her very own recliner and is enjoying it a great deal. I was able to find her one that fits her almost perfectly and I think it is already aiding in maintaining a better posture for her. We are also changing her wheel chair to a different model that will aid in her back and head positioning. The new chair will also position her legs differently which we hope will minimize her desire to push against the foot plates. We are continuing to experiment with medications and massages to give her some relief from the muscle spasms in her legs. We are having some success and hopefully we can whip this thing soon.

Speech continues to be a focus area. Not much new to share here, but we still believe it is just a matter of time. I continue to spend the majority of our free time during the evening in this area. She is very vocal, but still unable to get everything to line up. If there is anything Judi will fight to recover, it will be her ability to talk!

Mentally her recovery continues at a slow pace, but she is clearly getting better. She is doing fine on the new anti-seizure medication. We will have to keep a close eye on her blood chemistry since this medication has some potential side effects in this area, but so far so good. I am also trying to expose her to more visitors now that she has reached a point where she understands and hopefully recognizes them. The goal being to stimulate her brain activity and cause her to keep trying to put all of the pieces together. I am unsure whether it will help, but I am sure it will not hurt. What I have discovered about brain injuries is that it is very much a trial and error process to see what works. What works for one person, may be totally ineffective for another. Just let me know if you would like to come and visit.

On a different note, I had someone innocently tell me last week how sorry they were that Judi and I were having to go through this and how sad they were that our lives had been ruined. I could write an epistle around both of these comments, but I'll keep it to a few lines since most of you already know how I feel about this. I obviously wish this had never happened, but it did. I wish it had been me instead of Judi, but it wasn't. Our lives have certainly been changed forever, but they have not been ruined. We will move forward and find new things to share together and grow stronger as a result of it. As the title of this post says, it's the little things that are important. I continue to take refuge in the belief that God has a purpose here and that we will be enriched in the long run. I will admit that this is the only thing that keeps me moving on some of the more difficult days. I will also admit that each day of late seems to test my faith and resolve. I only mention it so that each of you will know how important your prayers are to us.

Thank you all again,

Steve

Slow and Steady

Our girl continues to fight the good fight and I continue to do my best to knock the obstacles out of her way. She has made significant physical recovery over the last few weeks and shows continuous; albeit slow, mental gains as well.

Judi continues to grow stronger physically on all fronts.

She is beginning to recover significant strength in her neck and holds her head up for longer and longer periods of time. I know she is tired of hearing me tell her to hold her head up and I am afraid I am going to rub off her eyebrows with the constant "help" in holding up her head. I know that she understands that I am only trying to help, but she still puts the "stink eye" on me at times when she just wants to be left alone. I am confident we will win this battle, but it is going to be a long process.

Her left side continues to grow stronger at a fairly significant pace. She is regaining control of the motion in her left leg and when standing is very comfortable carrying weight on it as well. The more weight bearing activities we can do with her, the more control the brain recovers of the leg. I think all of us are becoming more and more confident that she will be able to walk again based on the response we see. Her left arm is going to require a lot of work, but she is starting to regain control of it as well. The issue here is the significant loss of muscle that has occurred during the time since her accident. We remain positive here as well, but there are sure to be some challenges in front of us.

We are trying to restore her back strength as well. I believe this is going to be our major physical challenge once we get the neck restored. One of the things we are doing to restore her normal posture is to get her out of the wheelchair as much as possible. This also has a lot of psychological impacts as well. She has taken ownership of my recliner and we try to get her in it anytime we can. She spends several hours each day sitting in it as opposed to sitting in a wheelchair and it is clearly making a difference. I came home the other day and she looked like the "Queen of Sheba" sitting there in my chair. When I gave her a hug and kiss she wrapped her hand around my head and gave me a big hug back. I'll admit that tears of joy have been few and far between of late, but I can't describe how impactive these seemingly simple things are on my ability to keep on going.

Speech therapy continues to show slow results. Judi has all the physical pieces, but is still struggling to execute everything in the proper sequence to clearly form words. We are focusing a lot of our effort in this area. We continue to believe it will just time and there is nothing that indicates she won't ultimately succeed.

Her awareness level continues to improve. She enjoys watching TV (especially America's Funniest Home Videos) and looking at magazines while you read to her. I can't tell if she is trying to read it as well. We will continue to try and have her write and respond to words that we write down. It is difficult to tell if she understands or not, but we continue to expose her to it. Writing still eludes her, but I can't tell if it is an eye/hand coordination issue, mental limitation or a combination of the two. Her yes/no responses are improving. She has periods where she will actively participate and is usually 100% then. These are still very limited windows and the majority of the time she just won't commit one way or the other. We continue to work with her and reinforce that there are no wrong answers. This is still a very significant improvement from where she was just a month ago and indicates that she has the ability.

The leg continues to cause both of us a great deal of issues. I have figured out how to minimize the duration of the attacks and she is fighting hard to control them as well. We are exploring several treatment strategies. As always, the complicating factor is not implementing a strategy that impacts the brain stimulation we are trying so hard to promote. More to follow as our direction becomes clear.

As I mentioned in the last post, we started Judi on an anti-seizure medication to see if it would improve her mental status. The first medication kicked her butt and I had to take her off of it. We have subsequently started her on a different medication and she seems to be tolerating it well. We will have to monitor her response once the medicine level builds up to the appropriate levels in her system. The EEG results were abnormal in some areas on the right side of her brain (which we expected) and showed nothing abnormal on the left side. EEGs are "hit and miss" as far as seizure activity goes. None was detected while she was being monitored, but that is only a 30 minute snapshot. At least now we have a baseline to monitor her against.

My biggest problem right now is that Judi has caught the "crud" that is going around. She was spiking a pretty high fever for a couple of days, but that seems to be under control. Now we are dealing with the congestion, cough and (I suspect) sore throat. These would typically be relatively easy to manage, but in her condition each presents a challenge of its own.

Please keep us in your prayers as we take on these new challenges. Judi loves to have visitors and if anyone would like to drop by we would be tickled to have you. She has a busy schedule, but we can always work around it. Just drop me an e-mail (swilk@knology.net) or give us a call (706) 855-6940 if you would like to see her.

Steve

FYI

I had several folks ask me about the title on the last post. Most had figured it out, but had never heard the song. The line is from a song by Rodney Atkins named "If You're Going Through Hell" and I latched on to it this year since it just described exactly how I felt. When I hear it, I turn it up very loud and and sing along (it is a scary thing) and usually end up with tears in my eyes as I renew my resolve to win this battle. I suspect many of you can relate as well. The chorus/refrain is what I hammer on hard!

These are the lyrics:

Well you know those times
When you feel like there's a sign there on your back
Says I don't mind if ya kick me
Seems like everybody has
Things go from bad to worse
You'd think they can't get worse than that
And then they do

You step off the straight and narrow
And you don't know where you are
Use the needle of your compass
To sew up your broken heart
Ask directions from a genie
In a bottle of Jim Beam
And she lies to you
That's when you learn the truth

If you're going through hell
Keep on going, don't slow down
If you're scared, don't show it
You might get out
Before the devil even knows you're there

Well I been deep down in that darkness
I been down to my last match
Felt a hundred different demons
Breathing fire down my back
And I knew that if I stumbled
I'd fall right into the trap that they were laying, yeah

But the good news
Is there's angels everywhere out on the street
Holding out a hand to pull you back up on your feet
The one's that you've been dragging for so long
You're on your knees
You might as well be praying
Guess what I'm saying

If your going through hell
Keep on going, don't slow down
If you're scared don't show it
You might get out
Before the devil even knows you're there

Yeah, If you're going through hell
Keep on moving, face that fire
Walk right through it
You might get out
Before the devil even knows you're there

If you're going through hell
Keep on going, don't slow down
If you're scared don't show it
You might get out
Before the devil even knows you're there

Yeah, If you're going through hell
Keep on moving, face that fire
Walk right through it
You might get out
Before the devil even knows you're there
Yeah, you might get out
Before the devil even knows you're there.

I have told many of you that I looked into some very dark places this year. It was only my faith and the continued support and prayers from you that gave me the strength to keep going. Never ever under estimate the power of prayer!

Steve

You Might Get Out Before the Devil Even Knows You're There

It has been an interesting few weeks to say the least. Therapy continues to be intense and productive.

Judi continues to gain the most ground in PT. We have started electrical stimulation therapy on her neck and left leg and it is showing some promising results. Her neck control has improved significantly, but we still have a long way to go before she holds it up continuously. The leg continues to grow stronger day by day. The legs are getting a lot of activity from routine as well as therapy activities. I am more confident than ever that she will be able to walk again in the near future (although it will be a while before the stamina and muscle strength returns). More about the legs later.

In OT space, she is doing better with the tasks they are asking her to do. She has developed an affection for the "reacher." This is the device with a clamp on the end that she activates by squeezing a trigger on the other end (about three feet long). Similar to what is used to pick up trash on the side of the road. She is becoming pretty good with grabbing things she shouldn't and I am sure I will be assaulted at some point when I least expect it. We continue to work on the left arm and it is continuing to improve slowly, but surely.

Speech continues to show improvement as well. We have started using music to get her to relax and maybe sing along to some of her faves. She has hummed to a couple and we still hope to find the secret to opening the flood gates. She has all the individual pieces, but still needs to put them in the right order to carry on a conversation. More on speaking later as well.

Now for the other side.

Judi's right leg is just about to drive both of us nuts! She has developed a need to move and push that leg continuously. She has bent a 3/16th inch piece of steel that makes up the foot plate of her wheel chair as well as the tube that makes up the leg by pushing on it. We often have to remove this extension to prevent her from potentially damaging her knee and/or ankle. When she is in this mode, she is totally consumed by it. If you have ever had a severe muscle cramp, multiply your response by 10 and you are getting close to how she responds. She can't seem to stop it on her own, but I can get her to relax for brief periods of time by holding her very tight and essentially getting her to relax to the point she is nearly asleep. When she is in bed, I have to essentially wrap her in my arms and legs and talk her to sleep. If I move too much, she wakes up and starts all over again. As you can guess, there is little opportunity for me to sleep in this mode and her bed rail and I are developing an intimate relationship. She is trying hard to control it which only adds to her frustration. I am struggling because I am afraid she is hurting and I can't figure out how to get her some relief. So much has changed with her in the last few weeks that it is impossible to connect this to any one thing. I suspect it is a combination of mental and physical reactions as her awareness continues to grow and the therapy continues to stress weak muscles. We are going to move her into different chairs in our home (fixed, recliner, etc.) to see if there is one that makes her comfortable and see if that allows her to sleep. Some of you know that Judi suffered from a pretty severe case of "restless leg syndrome" prior to the accident and there is some concern this may be surfacing again. The main problem is that the medications that are used to treat this condition tend to slow mental activity which is the opposite of what we are trying to accomplish. We will continue to search for the solution and I am sure we will ultimately find it.

Judi also had her first neurologist appointment. We had been waiting until her recovery reached a point where she was actually stable enough to evaluate and treat as appropriate. I walked away from the appointment with mixed feelings, but overall felt we had accomplished a great deal. Judi has had a few minor seizures during her recovery which is very common for people with this type of injury. Due to the limited number and duration of the seizures, we decided not to treat her with an anti-seizure medication up to this point since it also tends to slow the brain activity that we are trying to stimulate. Judi also frequently "zones out" and has a blank stare on her face. If you touch her or talk to her, she will come right back to you. She has done this throughout her recovery after she became alert again. We believe this occurs when she is trying to make a mental connection in response to some new stimulus. We have been assured that these are not seizures due to her response when she is touched or talked to in this state. We refer to this as "Judi Land" when she goes here and we usually just watch her and make sure there are no additional symptoms that emerge. After looking at all of Judi's medical history and discussions with her neurosurgeon, there is just no good reason why she is not talking. The majority of the language function resides on the left side of the brain and Judi has not exhibited any other symptoms of left brain issues. Based on all of the data that we have, the neurologist indicated there is a possibility that she is having low level seizures on the left side of her brain that are not severe enough to show any of the traditional symptoms. This could be the reason she is struggling to talk. Based on all of this, they did convince me to put her on an anti-seizure medication for a limited period of time to see how she responds. We have also scheduled an EEG for early Feb (first available time) to monitor her brain activity which may also provide some valuable information as well. My girl also proved me right once again in the Dr.'s office. During the discussion of her symptoms, I indicated that I felt she was fully aware of what was going on round her and they gave me that "sure she can" look that everyone in my situation learns to identify. When we discussed the side effects of the proposed medications, one of the most common is that they get "edgy" and a bit short tempered (just what I need with the most independent and forceful woman I have ever met). When this came up, I made the comment to please not administer something that sets the anaconda free and Judi busted out laughing. All of the Dr.s and nurses looked at me and I simply responded: I told you she understands. I think there are some new believers.

There was also another first this weekend. The weather was so perfect Monday that I decided to get on my motorcycle and just get away for an hour or so (Judi's caretaker was here so that I could get some errands done). I have always found that this was good medicine when the world started to close in on me. This was the first time I had really set off to just go into "Steve Land" since Judi was injured. I am not sure how it happened, but I found myself on roads that we had ridden together (as doubles or with both bikes). There must have been a lot of irritants in the air that day because I couldn't get my eyes to stop watering and ultimately had to head back home. It did give me some time for some special thanks and prayers as I contemplated how much our world has changed.

Thank you all for your continued support of Judi and our family. Your prayers are the best medicine she can receive and I am sure that we will ride together again very soon. Just FYI, someone asked me how long Judi and and I had been riding together the other day. Our first date together was on a motorcycle and that was almost 31 years ago.

Steve

2010 - A Year of Promise

Happy New Year to everyone!

I hope that Santa was good to everyone and that you had a chance to spend some quality time with family and friends. I have tried to be candid on this blog, so I am just going to say it was a very difficult time for our little family. We got through it and I am looking forward to a better year in 2010. I am doubly blessed to have Judi as my wife and Jessica as my daughter. Once again, I could never have survived this holiday period without Jess' help and love. 'Nuff said.

Therapy is going very well for Judi. She is gaining a LOT of ground physically and continues to slowly recover mentally. We have stopped using the hydraulic lift to move Judi between her wheelchair and other locations. She is able to stand with assistance to transfer now. This has a bit of a snowball effect for her. The more she stands, the stronger she gets and the more her brain "recognizes" that her left side is there. She is clearly regaining control of her left side and we hope it is only a matter of time before her strength is restored there as well. We are concerned about her left arm due to the contraction that she continues to exhibit. I have spent countless hours trying to prevent it and hopefully it will continue to improve.

In OT, the biggest challenge is keeping her interested. Judi gets a little frustrated with the tasks they ask her to perform because she thinks they are silly (my opinion). I have been working with her to perform the same movements concealed as normal activities and she does great. For example, they ask her to reach out and put a peg in the board, I get her to do the same thing asking for a hug. I compare the two and think she is finally warming up to what they are trying to accomplish.

Speech continues to be up and down for us. She is VERY vocal and continues to get stronger and stronger here. The problem is the neck continues to limit her ability to grow. She is a veritable chatterbox when she is laying down, but when she sits up it is more difficult due to the neck muscle interaction. We'll keep working.

Mentally she is still improving as well. The "yes/no" questioning is definitely getting better. I am starting to wonder if it is more an issue of making a choice as opposed to answering correctly. She clearly struggles when presented with a situation where she has to make a choice. I am not sure if she is struggling with "how" to make a choice or the fear of making the "wrong" choice. Those of you that know Judi well, also know the perfectionist she can be and this could be the real issue. We'll continue to work on this and see if we can refine it further. She has turned into an interesting conversationalist when she sleeps. We believe that she is dreaming a lot and that is a VERY good sign. All of these things point to an increase in mental activity. At times she also moves around a lot so I have to keep a close eye on her to ensure she remains safe.

I am looking forward to great things from 2010 and wish great things for each of you as well. I believe that Judi will make a full recovery with our continued support and prayers. Thank you all again and hopefully Judi will tell you herself very soon.

Steve