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