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