I can hardly believe that another month has passed us by. I hope that everyone had a wonderful holiday season and had an opportunity to spend some quality time with friends and family. The holidays continue to be difficult for us, but it was better than last year and I suspect that it will continue to get better each year.
The last month has been a difficult one for us. Right after Christmas, Judi seemed to lose all of her energy almost over night. She went from being "wide open," to barely being able to stay awake. All she wanted to do was sleep. She also started to bob her head up and down almost constantly while she was awake. This was really a type of muscle tremor and she couldn't control it unless she focused directly on it. This eliminated any hope of doing neurofeedback with her due to the impact that the head motion has on the signal transmitted to the computer. She also started to rub her head constantly and started to run a low grade fever. There are no words to describe the feeling I had in the pit of my stomach at this time. These were exactly the same symptoms I saw when the infection surfaced in Judi's head the last time and it was almost exactly the same length of time since surgery (one day difference). I won't go into all the details of what it took to finally get her CT scan done, but there were no indications of infection or other issues going on in her head. I believe that was the first time I had relaxed since this started. This obviously left us with the task of trying to figure out what was causing the problem.
I would have to write an epistle to describe the ordeal this last month has been navigating the medical and insurance systems. We have ran numerous blood tests and although we have yet to find out what the issue is, we do know what it isn't. There are no indications of thyroid, diabetes or vitamin deficiencies (all of these were high probabilities based on her symptoms). My struggle now is where do we go from here. It is so hard to get feedback from Judi to help figure out what is really going on and the Drs say they have checked everything that would cause her symptoms. It is highly possible that it is a mental issue or just another one of those phases that she has to work through. The impending move may be contributing to the issue, but I would not have expected it to happen in such a step fashion if this was the case. I will most likely have them switch her back to the old medication to see if the new medication may actually be the issue. We shall see. She has been doing a bit better over the last week, but is still way off the norm.
We closed on the condo and it looks really great. We have a few things left to get done on the punch list and then we will start the painful process of moving. The long pole in the moving schedule now is getting caretaker coverage for Judi worked out. Now that Jessica will no longer be there to cover for me until Judi's caretaker gets there in the morning, a significant change will need to take place. Judi seems to really like the condo and I am looking forward to getting her a fresh start as well. Our new neighbors are extremely nice and have already offered to help in any way they can. Once we get all moved in, we will have to do some type of get together so that everyone can see the new digs and have an opportunity to see Judi again.
The move will mark a huge turning point for our little family. Jessica has essentially put her life on hold for the last three years to help her Mom and me through this ordeal. It is time for her to get on with her own life and see what the world has to offer her. She has had to mature way beyond her years and I can't begin to describe how proud I am of the woman she has become. Although I don't write about it often (it is not my place), this has been extremely hard on Jessica. I see the hurt in her eyes when she sees her Mom struggle and the longing to do the things that most Moms and daughters get to do. I will continue to remind everyone not to take those things for granted, they are more special than you realize. Thank you Jess for being who you are!!!!
Moving onward. I did get in touch with the speech specialist that worked with Gabby Giffords. She reviewed Judi's case and unfortunately Judi's type of injury is not really her specialty area. She specializes in left lobe injuries. She did provide me some names of people that she felt could help Judi if anyone could and allowed me to use her name to get through all the traditional impediments that slow down contact. Unfortunately, they are all left of the Mississippi. The top recommendation is at the Mayo Clinic, so Judi and I will be heading that way once we get the move done and our lives slow a bit.
Pool therapy continues to go well and Judi really looks forward to that time. I believe the social interaction is as beneficial as the physical results. I am looking hard at whether to continue the neurofeedback (NF) training. We have not trained in the last month due to the issues I described above and there have been no negative issues. In reality, I think she has been doing better without it. That is not because the NF is causing a problem, it is because I am able to do other things with her during the time that would typically be consumed by NF. I think it made a huge difference early on, but it seems to have reached a plateau. This is obviously a difficult decision because I want to give her every opportunity to recover. If I could find someone that is reasonably computer savvy to do it during the day, that would be a win-win.
I guess that hits the big stuff. I will be asking for help to move when that time comes. Many of you have volunteered and I am very grateful. I also need to thank Angela Macintosh for staying with Judi while I worked through all the condo closing issues. A huge thank you also goes out to Ginger Dickert for keeping my refrigerator full of awesome vittles. I am truly humbled by the continued support from so many. Please keep us in your prayers as we start yet another phase of our lives. As I am sure you have figured out, I have decided to keep using the blog until we get moved to the condo and then look at the switch to facebook.
Steve
Saturday, February 4, 2012
Saturday, December 24, 2011
Merry Christmas
As you can see, Judi continues to get stronger and appears to grow more aware on a daily basis. We were able to complete the transition from her previous anti-seizure medication to a new drug that has fewer side effects (long and short term). There was a definite improvement in her awareness directly associated with this change.
Judi continues to enjoy the water therapy and it seems to be helping her muscle development and strength a great deal. The massage therapist continues to make significant progress with her as well. She not only works with Judi, but shows me the things I can do to work with her at home. We continue to stand her in her frame at home and the 5'9" hugs continue at every opportunity. The neuro feedback training continues although it was slowed down a bit when we transitioned to the new drug. I am on a new therapy mission though. After all of the recent doctor appointments and tests, it is still a mystery why Judi isn't talking. I am trying to find a language specialist and potentially a music therapist that specializes in brain injuries. I have never felt like traditional speech therapy met Judi's needs. I am looking for someone that can help her more with the mechanics of learning to speak again. There are many of them out there, I just have to find someone that is close enough to be able to get her to enough sessions to be effective. Music therapy has also shown results with people with brain injuries as well since it utilizes a different set of pathways in many cases than traditional speech. The key component gets them to hum and sing tunes they are familiar with using various techniques. This was one of the techniques used to help Gabby Giffords relearn how to talk. Again, the difficulty will be to find someone that is close enough to be effective. If any of you know of someone, please let me know.
We did sign the contract on the condo. It is being finished as we speak and we should close around the middle of January. I am excited and a bit sad as well. I am happy to be moving forward and provide Judi with an improved quality of life, but there are many Wilkerson memories associated with our existing home. We have not decided whether to sell our existing home or to rent it until the economy gets a bit better. I have lots of volunteers to help us move and I plan to take them up on the offer. More to follow on the condo when we get it closer to being finished.
I wanted to let everyone know that we will most likely stop the blog after the first of the year and go to a facebook page instead. Facebook seems to be a little more user friendly for shorter entries than the blog. This will let us make comments quickly when they seem appropriate as opposed to sort of "saving up" for a blog entry. I still want to make the information available since I know a lot of people are still following the blog. I will have to learn how to use facebook (never used it before), but Jess is an expert and she says I am trainable! I'll give everyone the scoop once we have it set up.
Merry Christmas
Steve, Judi and Jess
Monday, November 14, 2011
Treadin' Water
Lots of things to update on since the last post. As you can see we finally got Judi enrolled in the Adaptive Aquatics program and she loves it. I am not sure which aspect she enjoys the most: working in the pool, hanging out with others or the fact that the water is about 90 degrees. I can only imagine how good that must feel on her muscles after all she has gone through. Probably the biggest news from this activity is that we have been able to get her to consistently "cycle" with BOTH legs in the water. I have been impressed with what the team is able to do. They put a small wrap around float on her left thigh and then an ankle weight on her left ankle. What this does is keep her knee bent. It takes much less energy to move a muscle/limb in the water and "wah-la" she started pumping it the first time she tried after we showed her how. She almost started crying when she realized what she was doing. I of course was totally composed and shouting "I told you that you could do it!"Those of you that know our Judi well know how
quickly she likes to be the expert on everything she attempts and would not be surprised to see her go from holding on for dear life the first week to a big "thumbs up" just a week later (not the greatest picture but I was on the move). The lady working with her here is also a nurse so they hit it off big time.Judi continues to get physically an mentally stronger. She enjoys free standing with me holding her up more and more. It is nice to get a 5'9" hug again. At first she could only do it for a few seconds, but now tolerates a minute or so before her legs start to give out. Her muscle tone is coming back in her legs as well and she is slowly but surely losing the "chicken legs." She is also working with a very talented massage therapist to help loosen her muscles in addition to the water therapy. We have seen a significant improvement in her head/neck from these efforts.
We have had multiple Dr's appointments over the last few weeks. These were primarily 6 month follow ups since her surgery in April. Her brain injury specialist left Walton in the spring and went to the Shepherd Center in Atlanta. We decided to stay with him and they agreed to keep Judi as a patient. It is an awesome facility and her check up went very well. He was impressed with her progress and validated for us that she was not missing any new therapies that would apply to her injury that might be available there and not at Walton. Her neurosurgeon appointment and associated CT scan went well. Her brain continues to reposition itself in her skull and everything looks fine. He too commented on how well she was doing and I thought he would fall out when she reached up and shook his hand when he came in her room. He was also amazed when she was able to work simple math problems. Her neurologist appointment and new EEG also went well. The EEG still shows a lot of slowing of the brain function where the majority of her damage was, but it has lessened significantly since the last EEG. Not sure if this is neurofeedback, healing, tough as nails Judi or all of the above. We will continue all of them! We also are trying to change her anti seizure medication. The medication she is on has a lot of potential side effects and there is a new drug I have been researching for a while that would seem to be perfect for her with much less likelihood of side effects. It should also be a lot less "mind numbing" than her current medication. Unfortunately all of them have a bit of this effect (that's how they prevent the seizures ).
I did finally get her out to the bowling alley to see her old pals on the bowling team. Thanx to Deborah Turner for helping me get that worked out. All of the ladies were awesome to her and she clearly enjoyed the outing. I will definitely take her back soon. She was lit up all night after that trip. I think it does her a tremendous amount of good to get out of the house and back into environments that bring back good memories.
One of her younger sisters (Kelly) from up north also flew in and spent a long weekend with us. It was awesome to see her again and it was obvious that it did both of them good. I enjoyed getting to talk about the "old days" and it brought back some wonderful memories. As we have gone on this journey, it has become more and more clear how important it is to spend time with family and enjoy every minute that you can. You never know what the next day will bring.
We also had Judi evaluated for what I call a "gaze computer." I think the proper description is speech generation device. It is basically a computer that picks of the position of the users eyes to control selections on the screen that generate phrases, words, requests based on what the user selects. Judi did well with it, but I noticed that she reached for the boxes as well and I believe she may be able to use the touch screen version which is a little less sensitive (and therefore less prone to mistakes). We are evaluating the best path to take since the systems are very expensive and we want to keep the pressure on her to talk. We are a little afraid that if she gets comfortable using this device to communicate, she may stop trying as hard to talk. More to follow on this later.
Good news on the caretaker front. The new caretaker has finally started letting her hair down and I think she is going to be a very good fit. She takes her job very seriously and the two of them are starting to bond pretty well. She is a little high maintenance, but as long as she is good to and for Judi, I can handle it.
I guess one last piece of news that will have a big impact on us as well. We are close to signing a contract on a condo/town home. It is actually a place we looked at before Judi got hurt, so I know she likes them. It is almost 1900 ft2 and is all on one floor with a fully open floor plan. We are negotiating what it will cost to have some modifications made that make it fully accessible for Judi (roll in shower, wheelchair accessible sink, etc.) and everything looks favorable. I just can't keep up everything with our current home and it is more than we need today. Having all of the maintenance (grounds, exterior, etc.) covered is very appealing to me now that time is such a precious commodity. I think the new neighborhood will be good for Judi to meet some new friends that only know her for who she is today. I know many of her previous friends tell me they find it difficult to see Judi as she is today because they remember the "old Judi" so they don't come around. I personally think that is a cop out, but that is a decision that each person makes for themselves. As the old saying goes, the right thing and the hard thing are often the same.
Well, I think that is most of the big stuff for the last few weeks. Please keep us in your prayers - we both need them. I will admit I am struggling harder and harder to juggle everything these days. The better Judi gets, the more attention she needs and unfortunately work has an increased demand as well. I am struggling to get everything done there as well. Hopefully we will reach a point soon where I can slow down a little and catch up. So if you can, say a little extra prayer, we would appreciate it. Stop by and see us if you get a chance.
God Bless,
Steve
Sunday, October 9, 2011
Rolling Along
Greetings to all!
It has been a while since I posted last, but there really have been no major changes since then. I thought you might enjoy my smilin' gal sporting her new crop of hair. I can't believe she doesn't have a head full of gray ones after all she has been through (I have enough for both of us).
Judi continues to grow physically stronger every day, but she is still unable to control her left side. Everything remains functional (reflexes, stimulus, etc.) so we continue to work at it in hopes that her brain will recognize them again and regain control.
We are moving towards one more relatively minor surgery (if there is such a thing) on her right thumb. The ligament that controls the upper joint in her right thumb was damaged in the accident which prevents her from straightening out her thumb (some of you may recall that this was the only cut she had as a result of the accident). The upper section of her thumb stays tucked down and it has become a significant impediment to her as she has progressed through rehab. We have a couple of options. One is to remove a ligament from another finger or toe and reconnect it there. That is a big surgery and requires extensive rehab. The orthopaedist, occupational therapists and I all agree that this is really not a good option for Judi in her current condition. The other option is to fuse the joint so that the upper section remains in a fixed position. Studies indicate that the upper section remains in a slightly bent position 90% of the time. We had a splint on her thumb for several weeks that had it in the same position it would be fused in and it made a big difference for her. She will have pins in her thumb for 6-8 weeks while the bones fuse and then she should be good to go. I am sure it will be an interesting holiday period, but this should really increase her dexterity.
Speech remains about the same. Very vocal, but still not quit able to put the words together. Occupational and physical therapy remain the same as well. She is being discharged from Outpatient Therapy at the end of this month. I hate that, but the therapists indicate that there is nothing they are doing now that takes a skilled therapist to perform. As much as I hate to admit it, I agree with that assessment. It does not mean she isn't doing well, it only means that we can do everything they are doing at home. She has the opportunity to go back at any time when this position changes. We can certainly do the therapy that she needs, but she loses one thing that I believe is every bit as important (if not more so) and that is the social interaction. She loves to be in the middle of conversations and enjoys interacting with others. I need to get her out of the house and interfacing with others as much as possible.
I am just going to say this from the heart and hope that everyone understands. There are a lot of you out there that are following the blog and care a great deal for Judi. I know it is hard for you to see her in the condition she is in. I also know that everyone's lives are getting busier and busier, but Judi needs your help to continue getting better. If you can just come by and see her for a few minutes, do it. If you can invite her to a little get together, let us know and her caretaker or I can come with her to take care of any needs she has. If she can come to bowling one evening and not create a big distraction, please let me know. I believe that it is one of these interactions that will ultimately cause her to come back to us. Judi has helped a lot of people over the years and now she needs your help. You might be surprised at her ability to interact.
I think that hits all the big stuff. I'll update as any significant changes occur. I ask that you continue to pray for us as we start down yet a new path in Judi's recovery. Thanx for everything!
Steve
e-mail: swilk@knology.net
cell: 706-830-8973
It has been a while since I posted last, but there really have been no major changes since then. I thought you might enjoy my smilin' gal sporting her new crop of hair. I can't believe she doesn't have a head full of gray ones after all she has been through (I have enough for both of us).
Judi continues to grow physically stronger every day, but she is still unable to control her left side. Everything remains functional (reflexes, stimulus, etc.) so we continue to work at it in hopes that her brain will recognize them again and regain control.
We are moving towards one more relatively minor surgery (if there is such a thing) on her right thumb. The ligament that controls the upper joint in her right thumb was damaged in the accident which prevents her from straightening out her thumb (some of you may recall that this was the only cut she had as a result of the accident). The upper section of her thumb stays tucked down and it has become a significant impediment to her as she has progressed through rehab. We have a couple of options. One is to remove a ligament from another finger or toe and reconnect it there. That is a big surgery and requires extensive rehab. The orthopaedist, occupational therapists and I all agree that this is really not a good option for Judi in her current condition. The other option is to fuse the joint so that the upper section remains in a fixed position. Studies indicate that the upper section remains in a slightly bent position 90% of the time. We had a splint on her thumb for several weeks that had it in the same position it would be fused in and it made a big difference for her. She will have pins in her thumb for 6-8 weeks while the bones fuse and then she should be good to go. I am sure it will be an interesting holiday period, but this should really increase her dexterity.
Speech remains about the same. Very vocal, but still not quit able to put the words together. Occupational and physical therapy remain the same as well. She is being discharged from Outpatient Therapy at the end of this month. I hate that, but the therapists indicate that there is nothing they are doing now that takes a skilled therapist to perform. As much as I hate to admit it, I agree with that assessment. It does not mean she isn't doing well, it only means that we can do everything they are doing at home. She has the opportunity to go back at any time when this position changes. We can certainly do the therapy that she needs, but she loses one thing that I believe is every bit as important (if not more so) and that is the social interaction. She loves to be in the middle of conversations and enjoys interacting with others. I need to get her out of the house and interfacing with others as much as possible.
I am just going to say this from the heart and hope that everyone understands. There are a lot of you out there that are following the blog and care a great deal for Judi. I know it is hard for you to see her in the condition she is in. I also know that everyone's lives are getting busier and busier, but Judi needs your help to continue getting better. If you can just come by and see her for a few minutes, do it. If you can invite her to a little get together, let us know and her caretaker or I can come with her to take care of any needs she has. If she can come to bowling one evening and not create a big distraction, please let me know. I believe that it is one of these interactions that will ultimately cause her to come back to us. Judi has helped a lot of people over the years and now she needs your help. You might be surprised at her ability to interact.
We did have one major issue to deal with over the last few weeks. Judi's caretaker who has been with us since she came home from the hospital had to leave due to medical issues. She has a new caretaker who is very technically capable, but her personality is not quite as bubbly as her predecessor. It looks like Judi and her are warming up to each other pretty well. This is another strain on that social interaction piece I mentioned before. I have been spending a lot of time bringing her up to speed on the little things that make a difference in Judi's day to day living.
I think that hits all the big stuff. I'll update as any significant changes occur. I ask that you continue to pray for us as we start down yet a new path in Judi's recovery. Thanx for everything!
Steve
e-mail: swilk@knology.net
cell: 706-830-8973
Monday, September 12, 2011
Day by Day
I believe that Judi has started to reconcile the anger she has been carrying for a while. She still has days when you can tell she is mad at the world, but they are becoming less frequent. She also tries hard to control her negative attitude when it is pointed out to her. We often have some interesting discussions when she lets the "alien" out. It is interesting to note that she is normally very receptive to communicating with her signs when we discuss this topic. It is my hope that she will get more and more control as she continues to improve. Again, all of these things are very common for people suffering a traumatic brain injury.
One of the biggest news items since the last post was a visit from Judi's dad and older sister over the Labor Day weekend. When her dad walked in, it was the second largest display of emotion I have seen from Judi since the accident. She was so excited when he came in that I thought for sure she was going to break down and cry. She also reached out and gave him and her sister a big hug. I was praying the whole time that she would talk to him, but she never quite got it out. It was a good visit and I think it did everyone some good. The emotional display is a VERY good sign since it involves multiple brain functions at multiple levels to process this level of emotional response. In case you were wondering, the biggest display of emotion was when I brought her home for the first time after the accident.
Rehab continues to go well and she is showing improvement in all areas. The largest improvement continues to be in the physical therapy arena. She is getting significantly stronger and it is good to see the muscle growth/tone in her legs continue to improve. When I transfer her between locations, she usually wants to stand for a short period of time with me supporting her. She has started to put her arm around my waist and I give her a big hug while we stand there. I can't describe how good it is to see her standing tall with her head held up and a beautiful smile on her face. We continue to hold out hope that she will recover use of her left leg soon. Occupational therapy continues at about the same pace as before. Some days she is totally into it, others she just really has little interest. On the off days we continue to focus on restoring the range of motion on the right side and stretching the left side. Speech therapy is a bit hit or miss lately. We are integrating the IPad into those sessions as well as at home. She is starting to write her name and some simple words periodically. It is still not on a regular basis, but she is getting better and better at it. One of the issues I am trying to resolve is whether her vision is impacting her or not. Before the accident, she needed reading glasses to read and do close up tasks (keyboard use, starting IVs, etc.). I put her glasses on her sometimes when she is doing work on the IPad or other media where she would probably have needed them in the past, but I can't tell if they are really helping or not. She will take them off when they seem to bother her. She is still trying hard to talk and I will continue to say it is just a matter of time before she is able to master that skill again.
She is a very "BUSY" lady again. I mentioned this once before, but she gets on a roll some days and is incapable of being still or not touching/messing with anything within her reach. Again, this is a good sign that her inquisitiveness is growing stronger, but it keeps me on my toes. I encourage her to experiment and it has helped her continue to gain confidence in doing things on her own. She will drink out of her cup on her own and is doing a pretty good job eating on her own as well. I have been feeding her a bit more than usual because we have been slowly moving her diet back to a more coarse texture to encourage her to chew. She is starting to use her tongue to move food to her teeth and this is exactly what we are looking for. I feed her to make sure she doesn't get too much going at one time and choke. When she feeds herself, her mission appears to be "get as much on a spoon as possible." I will mention that she doesn't like to be fed (wants to do it herself) unless you explain to her why you are ding it. Again, some good signs.
Neuro feedback (NF) continues to be my focus at home. We are actively training her on all of the key sites in the brain with the exception of the pre-frontal lobe (right above your eyes). I have seen an improvement in her awareness and activity level as we opened the door on the new sites. Once she has been stable here for a while, we'll give the pre-frontal lobes another try. Every time we tried to train here in the past, she ultimately had a seizure within 24 hrs. There is obviously a lot of improvement that can be made here, but we want to do it without increasing the risk of seizures too much. We will probably do another full EEG soon to see how it compares to the baseline that was done right after she came home from the hospital. It may provide some insight on the training strategy going forward.
We do have a massage therapist working with her now and I believe that will provide a lot of relief for her in specific areas that rehab doesn't focus on due to the global issues they are addressing. The first focus area is her neck in the area of rotating her head side to side. She does well with the up and down, but still has difficulty rotating her head. We also have her signed up for an aquatic therapy program at the YMCA which she will start in the next couple of weeks. The main issue there is integrating the schedules for all the activities. I am taking her to an orthopaedic specialist tomorrow to look at her right hand thumb. She is unable to get full range of motion on that thumb and it is starting to have a significant impact on her ability to perform tasks with that hand. I had it looked at while she was in the hospital and the surgeons assured me then that it would not require surgery to correct. A fact few probably know is that the knuckle on her thumb was the only cut she had on her body from the accident. Getting this corrected will go a long way in her recovery.
I think that pretty much covers where we are today. I am doing everything I can to stimulate that fire in Judi and so far, she continues to get better on multiple fronts. Several of you have indicated that I look tired these days and that you are concerned. I greatly appreciate the concern and kind words (and yes I am tired). I am working on some additional help to allow me some additional down time. Judi is at a point where she needs the extra attention and I am going to do my best to give her the best chance possible to recover. Once she gets over the "hump," hopefully she will need less full time attention and things will slow back down. Feel free to come and see us. Judi loves company and it is always good to see old friends.
One of the biggest news items since the last post was a visit from Judi's dad and older sister over the Labor Day weekend. When her dad walked in, it was the second largest display of emotion I have seen from Judi since the accident. She was so excited when he came in that I thought for sure she was going to break down and cry. She also reached out and gave him and her sister a big hug. I was praying the whole time that she would talk to him, but she never quite got it out. It was a good visit and I think it did everyone some good. The emotional display is a VERY good sign since it involves multiple brain functions at multiple levels to process this level of emotional response. In case you were wondering, the biggest display of emotion was when I brought her home for the first time after the accident.
Rehab continues to go well and she is showing improvement in all areas. The largest improvement continues to be in the physical therapy arena. She is getting significantly stronger and it is good to see the muscle growth/tone in her legs continue to improve. When I transfer her between locations, she usually wants to stand for a short period of time with me supporting her. She has started to put her arm around my waist and I give her a big hug while we stand there. I can't describe how good it is to see her standing tall with her head held up and a beautiful smile on her face. We continue to hold out hope that she will recover use of her left leg soon. Occupational therapy continues at about the same pace as before. Some days she is totally into it, others she just really has little interest. On the off days we continue to focus on restoring the range of motion on the right side and stretching the left side. Speech therapy is a bit hit or miss lately. We are integrating the IPad into those sessions as well as at home. She is starting to write her name and some simple words periodically. It is still not on a regular basis, but she is getting better and better at it. One of the issues I am trying to resolve is whether her vision is impacting her or not. Before the accident, she needed reading glasses to read and do close up tasks (keyboard use, starting IVs, etc.). I put her glasses on her sometimes when she is doing work on the IPad or other media where she would probably have needed them in the past, but I can't tell if they are really helping or not. She will take them off when they seem to bother her. She is still trying hard to talk and I will continue to say it is just a matter of time before she is able to master that skill again.
She is a very "BUSY" lady again. I mentioned this once before, but she gets on a roll some days and is incapable of being still or not touching/messing with anything within her reach. Again, this is a good sign that her inquisitiveness is growing stronger, but it keeps me on my toes. I encourage her to experiment and it has helped her continue to gain confidence in doing things on her own. She will drink out of her cup on her own and is doing a pretty good job eating on her own as well. I have been feeding her a bit more than usual because we have been slowly moving her diet back to a more coarse texture to encourage her to chew. She is starting to use her tongue to move food to her teeth and this is exactly what we are looking for. I feed her to make sure she doesn't get too much going at one time and choke. When she feeds herself, her mission appears to be "get as much on a spoon as possible." I will mention that she doesn't like to be fed (wants to do it herself) unless you explain to her why you are ding it. Again, some good signs.
Neuro feedback (NF) continues to be my focus at home. We are actively training her on all of the key sites in the brain with the exception of the pre-frontal lobe (right above your eyes). I have seen an improvement in her awareness and activity level as we opened the door on the new sites. Once she has been stable here for a while, we'll give the pre-frontal lobes another try. Every time we tried to train here in the past, she ultimately had a seizure within 24 hrs. There is obviously a lot of improvement that can be made here, but we want to do it without increasing the risk of seizures too much. We will probably do another full EEG soon to see how it compares to the baseline that was done right after she came home from the hospital. It may provide some insight on the training strategy going forward.
We do have a massage therapist working with her now and I believe that will provide a lot of relief for her in specific areas that rehab doesn't focus on due to the global issues they are addressing. The first focus area is her neck in the area of rotating her head side to side. She does well with the up and down, but still has difficulty rotating her head. We also have her signed up for an aquatic therapy program at the YMCA which she will start in the next couple of weeks. The main issue there is integrating the schedules for all the activities. I am taking her to an orthopaedic specialist tomorrow to look at her right hand thumb. She is unable to get full range of motion on that thumb and it is starting to have a significant impact on her ability to perform tasks with that hand. I had it looked at while she was in the hospital and the surgeons assured me then that it would not require surgery to correct. A fact few probably know is that the knuckle on her thumb was the only cut she had on her body from the accident. Getting this corrected will go a long way in her recovery.
I think that pretty much covers where we are today. I am doing everything I can to stimulate that fire in Judi and so far, she continues to get better on multiple fronts. Several of you have indicated that I look tired these days and that you are concerned. I greatly appreciate the concern and kind words (and yes I am tired). I am working on some additional help to allow me some additional down time. Judi is at a point where she needs the extra attention and I am going to do my best to give her the best chance possible to recover. Once she gets over the "hump," hopefully she will need less full time attention and things will slow back down. Feel free to come and see us. Judi loves company and it is always good to see old friends.
Steve
One last thing, please take a few minutes to remember the anniversary of 9/11 and all of the brave lives that were lost that day. Those of you that know me well, know that the red/white/blue runs strong in these veins and I will never forget the day our country was attacked by a group of cowards. Please don't forget the innocent men, women and children that lost their lives that day and the hundreds of heroes that died saving countless others.
Monday, August 8, 2011
Angry Girl??
I know the title is a bit different than what you usually hear from me, but I believe that I have a very angry woman on my hands these days. It is difficult to know for sure due to the communication gap that exists, but all of her actions and body language are those of a lady that is ticked off at the world. I am told this is not an uncommon phase for people to go through during their recovery. The theory is that as Judi's awareness increases, the reality of her situation is becoming clearer and she is angry that this has happened to her. I have to admit that I can't blame her (I have already gone through it myself). I just hope that I survive it!! Those of you that knew Judi well will understand why I say that. I can also assure you with absolute certainty that the "old Judi" still resides inside that pretty head. Once she has made up her mind she is not going to do something, the battle of wills begins and it is all I can do to maintain my cool at times. It is difficult to give all that you have and maintain a positive attitude when it is a battle at every step. Hopefully it will be short lived and we can continue moving forward.
Outpatient therapy continues to go reasonably well. She is getting significantly stronger physically. She stands almost every day either at home or at Walton and usually holds her head up the entire time (huge accomplishment). She is lifting weights with her right leg and we continue to do everything we can to stimulate the left leg to get it to respond. She is able to activate the muscles in her left every once in a while, but nothing that is repeatable. When we transfer her to/from her wheelchair she pushes up and essentially stands on her own as you move her to the appropriate location. That helps her confidence and muscle tone as well. I have had her stand for short periods like that with my arms around her waist and that always brings a smile to two faces! Working hard on building her core muscles and balance by sitting on the edge of the mat. She has gone up to a minute sitting by herself without any external support (sounds small, but REALLY big improvement). OT goes reasonably well. Attitude has a lot to do with this area of therapy and right now we are struggling a bit. On those days when she has her fanny on her shoulders, they do a lot of stretching exercises which help her great deal. Her reaching and eye/hand coordination are getting better and she does well when she wants to. Speech therapy is always hit or miss depending on her energy level and the attitude for the day. A couple of Fridays back she had the best ST session I believe she has ever had. She was using all her signs, answering questions about the past and cognitive scenarios and making sounds left and right trying to talk. Last Friday she didn't want to participate hardly at all. We did have some success using the IPad. I was able to get her to do some simple subtraction and answer them correctly. If you put all that together, Judi is continuing to do very well when she doesn't let the attitude get in the way. She is clearly very alert behind the input/output issues. I try to put myself in her shoes when she tries my patience and most of the time I can deal with it. There are times though that I have to sit and talk with her about her behavior and most of the time she responds reasonably well (for Judi).
NF has consumed the majority of our free time lately. We have made several trips to NC and have started training her daily on sights that should start to "wake her up" and stimulate the speech center as well. This "awakening" may also be fueling some of the attitude as Judi's frustration level with not being able to communicate gets higher. She doesn't like the electrodes on her head, so I have to sit with her through the entire session or she will pull at least one of them off. I used to be able to do a little multi-tasking while she was training so my discretionary time has become even shorter.
She is doing an OK job at eating these days. For some reason, she starts out great and then about half way through her meal, she starts going to sleep and stops dead in her tracks. She will usually eat if I feed her then, but she is done doing it for herself at that point. She is not really sleeping because as soon as I put everything away, the head pops up and she is focused on whatever is on TV (that's when I try to get her NF in). I don't try to force her to eat and if she doesn't get enough, I give her some supplemental feeding through her PEG tube. I always hate to do that because I want to get rid of that darn thing one of these days, but for now it gives us a very convenient backup for eating and for her medications.
The heat has been tough on her and I have not been able to get her outside as much as I like to. Hopefully we will get some relief soon and we can continue to explore new things. I plan to take her to the bowling alley sometime in the next few weeks. I was talking to the physical therapist last week and he indicated that they had a stand that they sit in the lane where she can aim the ball and then push it off. I have to talk to the bowling alley to see what it takes to use that. I think Judi would have a blast doing that since she enjoyed bowling so much. She told me last week that she would like to do that and told the therapist she was a good bowler when asked. I know some of her bowling buddies follow the blog so please let me know if you have any insight here.
I think that pretty much sums up where we are today. Sorry for the long time between posts, but I must admit I am pretty much strung out these days. The better Judi gets, the more attention she needs and I plan to do everything I can to keep her moving in the right direction. I hope that need will peak and then start to go the other way as she becomes able to do more for herself. I have got to figure out a way to get a little more rest than I am getting these days though. My body is telling me it is tired. I am hoping to get a CNA or two right out of school to help me some on the weekends and potentially in the evenings so I can catch up (and slow down) a bit. Using an agency for that just becomes cost prohibitive in a hurry. If any of you know of someone with that type of background looking to work some, please let me know. Jess is doing all she can to help, but with school starting back she will be wide open there as well.
I appreciate the continued thoughts and prayers from everyone. We are living proof of the power of prayer. I would ask that you include a couple other families in your prayers as well this week. Please include Dwain and Brenda Mcmullin and Bill, Lexi and Haley Van Pelt. Both families continue to set the example for the rest of us to follow for maintaining their faith in the shadow of adversity. It was great to see that smiling face of Haley's last week at rehab. Feel free to stop by and see us if you get the chance. Don't let the talk of Judi's attitude scare you away. You might just be the medicine she needs.
Steve
Outpatient therapy continues to go reasonably well. She is getting significantly stronger physically. She stands almost every day either at home or at Walton and usually holds her head up the entire time (huge accomplishment). She is lifting weights with her right leg and we continue to do everything we can to stimulate the left leg to get it to respond. She is able to activate the muscles in her left every once in a while, but nothing that is repeatable. When we transfer her to/from her wheelchair she pushes up and essentially stands on her own as you move her to the appropriate location. That helps her confidence and muscle tone as well. I have had her stand for short periods like that with my arms around her waist and that always brings a smile to two faces! Working hard on building her core muscles and balance by sitting on the edge of the mat. She has gone up to a minute sitting by herself without any external support (sounds small, but REALLY big improvement). OT goes reasonably well. Attitude has a lot to do with this area of therapy and right now we are struggling a bit. On those days when she has her fanny on her shoulders, they do a lot of stretching exercises which help her great deal. Her reaching and eye/hand coordination are getting better and she does well when she wants to. Speech therapy is always hit or miss depending on her energy level and the attitude for the day. A couple of Fridays back she had the best ST session I believe she has ever had. She was using all her signs, answering questions about the past and cognitive scenarios and making sounds left and right trying to talk. Last Friday she didn't want to participate hardly at all. We did have some success using the IPad. I was able to get her to do some simple subtraction and answer them correctly. If you put all that together, Judi is continuing to do very well when she doesn't let the attitude get in the way. She is clearly very alert behind the input/output issues. I try to put myself in her shoes when she tries my patience and most of the time I can deal with it. There are times though that I have to sit and talk with her about her behavior and most of the time she responds reasonably well (for Judi).
NF has consumed the majority of our free time lately. We have made several trips to NC and have started training her daily on sights that should start to "wake her up" and stimulate the speech center as well. This "awakening" may also be fueling some of the attitude as Judi's frustration level with not being able to communicate gets higher. She doesn't like the electrodes on her head, so I have to sit with her through the entire session or she will pull at least one of them off. I used to be able to do a little multi-tasking while she was training so my discretionary time has become even shorter.
She is doing an OK job at eating these days. For some reason, she starts out great and then about half way through her meal, she starts going to sleep and stops dead in her tracks. She will usually eat if I feed her then, but she is done doing it for herself at that point. She is not really sleeping because as soon as I put everything away, the head pops up and she is focused on whatever is on TV (that's when I try to get her NF in). I don't try to force her to eat and if she doesn't get enough, I give her some supplemental feeding through her PEG tube. I always hate to do that because I want to get rid of that darn thing one of these days, but for now it gives us a very convenient backup for eating and for her medications.
The heat has been tough on her and I have not been able to get her outside as much as I like to. Hopefully we will get some relief soon and we can continue to explore new things. I plan to take her to the bowling alley sometime in the next few weeks. I was talking to the physical therapist last week and he indicated that they had a stand that they sit in the lane where she can aim the ball and then push it off. I have to talk to the bowling alley to see what it takes to use that. I think Judi would have a blast doing that since she enjoyed bowling so much. She told me last week that she would like to do that and told the therapist she was a good bowler when asked. I know some of her bowling buddies follow the blog so please let me know if you have any insight here.
I think that pretty much sums up where we are today. Sorry for the long time between posts, but I must admit I am pretty much strung out these days. The better Judi gets, the more attention she needs and I plan to do everything I can to keep her moving in the right direction. I hope that need will peak and then start to go the other way as she becomes able to do more for herself. I have got to figure out a way to get a little more rest than I am getting these days though. My body is telling me it is tired. I am hoping to get a CNA or two right out of school to help me some on the weekends and potentially in the evenings so I can catch up (and slow down) a bit. Using an agency for that just becomes cost prohibitive in a hurry. If any of you know of someone with that type of background looking to work some, please let me know. Jess is doing all she can to help, but with school starting back she will be wide open there as well.
I appreciate the continued thoughts and prayers from everyone. We are living proof of the power of prayer. I would ask that you include a couple other families in your prayers as well this week. Please include Dwain and Brenda Mcmullin and Bill, Lexi and Haley Van Pelt. Both families continue to set the example for the rest of us to follow for maintaining their faith in the shadow of adversity. It was great to see that smiling face of Haley's last week at rehab. Feel free to stop by and see us if you get the chance. Don't let the talk of Judi's attitude scare you away. You might just be the medicine she needs.
Steve
Monday, July 11, 2011
Has it been that long?
I know it has been a long time between posts, but the reality is that not much has changed since the last post. I am getting busier and busier every day. I think I mentioned in a previous post that the better Judi gets, the more time I have to spend with her to keep her going and meet her needs. Not getting much sleep these days, but hopefully we'll be over the hump before too much longer.
We did celebrate our 31st wedding anniversary on July 2 and it was a much better one than last year. It was still a very difficult day for me, but I continue to do my best to maintain the attitude that each next year will be better than the last. I am still very thankful for my time with Judi and we do our best to take advantage of the time God has given us together.
Judi continues to do well in therapy. We have started standing her up without the use of the standing frame when the male Physical Therapist works with her and I am there. We support her on both sides and let her stand. She really seems to enjoy being able to do this, but it takes a lot out of her and she only lasts a short period of time. As you can imagine, this puts a significant load on all her muscles and joints and is great exercise to try and reactivate her left leg. We did get her up in the walking harness today (11/13) and she really seemed to enjoy it. She kept her head up and tried to take a step, but the left leg still did not respond. We'll keep working this and hopefully it will come to her.
She continues to work with the iPad and even wrote my name a couple of weeks ago. There are a lot of applications that interest her and she has always been interested in technology.
Continuing to feed herself and the eye/hand coordination is getting better. She will brush her teeth sometimes, but has to be in the right mood. We have to watch her close here to ensure that the toothbrush doesn't get too far back and that she doesn't chew on it. We also use some swabs with a mouth wash on it to help clean her teeth and she really likes to do that herself. These are all good signs and we continue to encourage her to do anything she can for herself.
She is definitely saying a few words every now and then. I believe she is almost there and the words that come out are those that are a reflex where she doesn't have to think much about them. I can't wait until she can put it all together here since it opens so many new doors for her.
Her awareness continues to improve and her ability to interact is improving as well. She is starting to use sign language again. We had made a lot of progress before the infection and she is just starting to pick that up again. It is good to see her thinking about what she wants to say and then converting it to the appropriate sign. This is also indicative of an improving comprehension of tasks and concepts. She has also started reaching out for stuff in the grocery store and looking hard at the packages. I think she is trying to read them and it stimulates memories for her. She also loves to open the freezer doors to see how the doors work and what might be inside. As you can imagine, it takes me a lot longer at the store these days, but if it helps her learn, I'll take whatever time it takes.
We are continuing the neurofeedback (NF) and have started training new sites to bring her brain functions back to a stable and active state. We are trying to get to the point where we can focus on the speech center and hopefully that will be enough to help her begin talking again. I desperately need to have a good feedback mechanism from her so that we can focus her therapy as well respond more effectively to her needs. I am always worried that she needs something that I am not aware of because of this gap.
We have definitely entered the defiant stage and some days that girl tests every bit of patience I have! Unfortunately, Judi was able to do that BEFORE the injury so I am in for a rough road I am afraid. This is very common for people recovering from a brain injury and it usually passes. Say an extra prayer for me if you get the opportunity.
We did have a tough day Monday (7/11). Judi had a series of seizures that were fairly significant. Fortunately we have the appropriate drugs to intervene at home and can usually work through them reasonably well. I have become a fairly capable over the phone Dr these days and the use of a speaker phone where I can talk Judi through them helps her a great deal. Seizures still take a great deal of energy out of all of us, but I hope they will diminish as she continues to work through her brain recovery. So far all of her Drs agree that we want to allow her to continue recovering and not try to medicate her to the point where the seizures completely stop. Recognize that the way the anti-seizure meds work is to suppress some of the brain functions which is what we do not want to do. As long as we are able to manage her blood pressure and general functions, the seizures are not really harmful to her other than scaring her a bit (she is getting used to them now I think) and the fact that they drain her energy. There are risks as in most things like this, but I am sure Judi would rather be able to live as normal a life as possible as opposed to being medicated to the point where she is essentially sedated.
I think that is most of the big stuff. Feel free to come and see her. She enjoys the company and I know she gets tired of listening to me all the time. Thanx as always for the thoughts and prayers. Judi has come a long way, but we have a long road left in front of us and I would appreciate your continued prayers.
Steve
We did celebrate our 31st wedding anniversary on July 2 and it was a much better one than last year. It was still a very difficult day for me, but I continue to do my best to maintain the attitude that each next year will be better than the last. I am still very thankful for my time with Judi and we do our best to take advantage of the time God has given us together.
Judi continues to do well in therapy. We have started standing her up without the use of the standing frame when the male Physical Therapist works with her and I am there. We support her on both sides and let her stand. She really seems to enjoy being able to do this, but it takes a lot out of her and she only lasts a short period of time. As you can imagine, this puts a significant load on all her muscles and joints and is great exercise to try and reactivate her left leg. We did get her up in the walking harness today (11/13) and she really seemed to enjoy it. She kept her head up and tried to take a step, but the left leg still did not respond. We'll keep working this and hopefully it will come to her.
She continues to work with the iPad and even wrote my name a couple of weeks ago. There are a lot of applications that interest her and she has always been interested in technology.
Continuing to feed herself and the eye/hand coordination is getting better. She will brush her teeth sometimes, but has to be in the right mood. We have to watch her close here to ensure that the toothbrush doesn't get too far back and that she doesn't chew on it. We also use some swabs with a mouth wash on it to help clean her teeth and she really likes to do that herself. These are all good signs and we continue to encourage her to do anything she can for herself.
She is definitely saying a few words every now and then. I believe she is almost there and the words that come out are those that are a reflex where she doesn't have to think much about them. I can't wait until she can put it all together here since it opens so many new doors for her.
Her awareness continues to improve and her ability to interact is improving as well. She is starting to use sign language again. We had made a lot of progress before the infection and she is just starting to pick that up again. It is good to see her thinking about what she wants to say and then converting it to the appropriate sign. This is also indicative of an improving comprehension of tasks and concepts. She has also started reaching out for stuff in the grocery store and looking hard at the packages. I think she is trying to read them and it stimulates memories for her. She also loves to open the freezer doors to see how the doors work and what might be inside. As you can imagine, it takes me a lot longer at the store these days, but if it helps her learn, I'll take whatever time it takes.
We are continuing the neurofeedback (NF) and have started training new sites to bring her brain functions back to a stable and active state. We are trying to get to the point where we can focus on the speech center and hopefully that will be enough to help her begin talking again. I desperately need to have a good feedback mechanism from her so that we can focus her therapy as well respond more effectively to her needs. I am always worried that she needs something that I am not aware of because of this gap.
We have definitely entered the defiant stage and some days that girl tests every bit of patience I have! Unfortunately, Judi was able to do that BEFORE the injury so I am in for a rough road I am afraid. This is very common for people recovering from a brain injury and it usually passes. Say an extra prayer for me if you get the opportunity.
We did have a tough day Monday (7/11). Judi had a series of seizures that were fairly significant. Fortunately we have the appropriate drugs to intervene at home and can usually work through them reasonably well. I have become a fairly capable over the phone Dr these days and the use of a speaker phone where I can talk Judi through them helps her a great deal. Seizures still take a great deal of energy out of all of us, but I hope they will diminish as she continues to work through her brain recovery. So far all of her Drs agree that we want to allow her to continue recovering and not try to medicate her to the point where the seizures completely stop. Recognize that the way the anti-seizure meds work is to suppress some of the brain functions which is what we do not want to do. As long as we are able to manage her blood pressure and general functions, the seizures are not really harmful to her other than scaring her a bit (she is getting used to them now I think) and the fact that they drain her energy. There are risks as in most things like this, but I am sure Judi would rather be able to live as normal a life as possible as opposed to being medicated to the point where she is essentially sedated.
I think that is most of the big stuff. Feel free to come and see her. She enjoys the company and I know she gets tired of listening to me all the time. Thanx as always for the thoughts and prayers. Judi has come a long way, but we have a long road left in front of us and I would appreciate your continued prayers.
Steve
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