Just a quick note.
Judi is back home and trying to catch up on some rest. We will be doing IV antibiotics for the next 4 weeks and then to oral for another four weeks or so. I'll do a full update over the weekend, but wanted everyone to know.
Steve
Wednesday, April 18, 2012
Sunday, April 15, 2012
Happy Birthday Judi!
Today is Judi's birthday and this was certainly not where we planned to celebrate #53. We had planned to be in our new "digs" and make her first beach trip this week for her big day.
We have decided to delay celebrating her birthday until we get her home and stronger. I wish I aged as well as she has. She's like a fine wine that only gets better with age!!
HAPPY BIRTHDAY baby!!
We have decided to delay celebrating her birthday until we get her home and stronger. I wish I aged as well as she has. She's like a fine wine that only gets better with age!!
HAPPY BIRTHDAY baby!!
Friday, April 13, 2012
Surgery Update
Just a quick update.
Judi is back from surgery and the surgeons indicated everything went fine. They did find a suspect area on the prosthesis that may have been some infection. They took cultures and we will have to see what, if anything, grows out. This will determine the antibiotic treatment she will receive when she leaves the hospital. It also means we will be in the hospital for another week or so as we wait on the cultures and get her ready if she needs to take IV antibiotics.
Now we wait and see how she does mentally as she comes out of the anesthesia and gets her bearings. I will also have to get her to accept the fact that once again she has an abnormal appearance and not get self conscious about it. We will also have to make sure she recognizes the risk she has there and to treat it with care (no scratching, rubbing, etc.).
Keep praying for her. This journey is just beginning.
Steve
Judi is back from surgery and the surgeons indicated everything went fine. They did find a suspect area on the prosthesis that may have been some infection. They took cultures and we will have to see what, if anything, grows out. This will determine the antibiotic treatment she will receive when she leaves the hospital. It also means we will be in the hospital for another week or so as we wait on the cultures and get her ready if she needs to take IV antibiotics.
Now we wait and see how she does mentally as she comes out of the anesthesia and gets her bearings. I will also have to get her to accept the fact that once again she has an abnormal appearance and not get self conscious about it. We will also have to make sure she recognizes the risk she has there and to treat it with care (no scratching, rubbing, etc.).
Keep praying for her. This journey is just beginning.
Steve
I Can't Believe It Is Happening Again
Happy Easter everyone!
I was holding off on my next post until we reached the one year anniversary since Judi's last surgery. That date was April 5. Unfortunately, our world has been turned upside down again and I had to put Judi back into the hospital on April 4. So what I had planned as an upbeat picture of where we were heading in the coming years, is going to be the start of yet another road block on the road to Judi's recovery. I will do my best not to become negative, but I would be untruthful if I said I was anything but devastated by the recent turn of events. I have actually written and re-written this blog entry a couple of times since I started it on Easter Sunday. You'll see what I mean a little later.
Last week I noticed that the appearance of Judi's incision had started to change. It appeared that it was being "sucked in" to her head. The incision has changed appearance in the past, but each time it raises my sensitivity level to monitor for additional changes. I also noticed a significant change in her behavior. There were a lot of weather changes occurring during this time and changes in barometric pressure often impact people's behavior that have undergone surgeries similar to Judi. Both of these are also warning signs that something could be changing in her head (a shunt problem being one of them), so I was on the alert. I spoke with her neurosurgeon on Monday and he arranged for her to get a CT scan the first thing Tuesday to see what was going on.
As soon as the neurosurgeon saw the CT scan, I was called to get Judi to the hospital and admitted right away. The CT did not show any issues with the shunt or infections, but did identify some air between the outer layer of the skin and the prosthesis that is currently in her head. This was very bad news. The presence of air indicates one of two things: 1)a large infection exists somewhere, or 2)a breach exists in her head that is allowing fluid to leak out and air to leak in. They immediately started her on several IV antibiotics as a precaution while we worked to figure out what was going on. Infections that are large enough to create these air pockets are usually very visible on a CT and the patients are usually very sick. Based on this and the negative results from all of the infection tests/scans, we don't believe this is the issue. The general concensus is that with the degrading state of the incision, it is most likely breached and is allowing some fuid to drain and air to enter the cavity left behind.
So why is air bad? The air itself is not the problem. The problem is that if air has entered her system through a breach, bacteria has as well. The bacteria can result in an infection if not dealt with. I won't go into a discussion on what could happen if infection gets into her brain, but it would be a very bad thing. The antibiotics will hopefully kill any bacteria that it reaches, which brings us to the complication. The prosthesis is not living tissue so there is no blood circulating through it or around it in some areas. Since the blood flow is what gets the antibiotics to the bacteria, there is a high probability that bacteria could have contaminated the prosthesis from the leak and the antibiotics will be ineffective in killing it.
The plan was to treat her with antibiotics through the weekend and take her to surgery early the following week and remove the prosthesis. I can only describe this as a heart breaking turn of events for us. Many of you remember what happened to Judi when we had to remove the bone flap back in 2010 due to the infection that developed under the flap. Judi degraded quickly and after about 2 months she had regressed to essentially the same level as when I first brought her home. When we installed the prosthesis in April of last year, she started gaining ground almost immediately. A large number of people in Judi's condition exhibit this response. They don't know why, only that it is a real condition and of course Wilkerson luck would put Judi in that category. Judi has never recovered to the same level that she had reached when we had to remove the bone flap. Unfortunately, this often occurs as well and in all likelihood (from a medical stand point) she will not recover as much when her head is repaired the next time.
We had come to grips with what we had to do and then all of a sudden the incision started to heal. The options started to change then and I thought all of our prayers had been answered. We had actually developed a plan to discharge her to a wound management group and I had convinced them to include hyperbaric oxygen therapy as well. I was starting to think we might be OK. I won't go into all the details, but the night before we were going to discharge her, the incision started to degrade in a different area. My heart sank when I saw it. You could actually see the plastic prosthesis through the incision. A subsequent CT scan showed that even more air had entered her head indicating that there was still a breach. This eliminated any possibility of leaving the prosthesis in. The risk is just too high that an infection will occur.
So here we are (Friday the 13th), waiting for her to go to surgery. She was scheduled for yesterday, but emergency cases and higher priority cases pushed her off the schedule. This is one of the bad things about MCG, but I try to remember we did the same to someone when Judi was brought in almost three years ago. I'll keep everyone up to date as we work through this. The standard protocol is 2-3 months of antibiotics (depends on cultures) and a period of 6-12 months before going back in. We obviously have to do something different the next time. She has had problems twice now with things that are not living (bone flap and prosthesis). There is a graft that is done that takes rib bones and tissue to build her a living structure and is closed by a muscle flap that is also connected to a blood supply. This is a BIG surgery, but something like this will most likely be the next option. I will be taking her to some plastic surgery specialty centers to understand what options there are. With all the work being done with our returning troops, there may be some more options that are less invasive for Judi. I obviously want to get some other opinions anyway to make sure she is getting the best possible opportunity to recover. If she starts to lose ground like she did last time, I'll work with them on what the right schedule is forger "total" health and well being.
We had planned to make our final move to the condo over the long Easter weekend, but we spent it here instead. I am not sure when we will do it now. We will have to see how Judi does and adjust as necessary. I had planned to take Judi on her first beach trip since her injury this weekend for her birthday (April 15), but we'll just wait a little longer. We are still going to try and get to Facebook to make it a little easier to get out some quick updates. I'll make sure everyone knows when we are getting close. Please keep Judi in your prayers. We need every one of them. A special thanx to my SRR co-workers that have been lifting us up in prayer. I continue to be humbled and amazed at the support we have received. Those prayers will be what lets her come back against the medical odds I mentioned above. I never could get my computer to connect using the MCG system, so I had to use my IPad to make the entry. There are several limitations(no spell check for one) using this as an input device instead of a computer. Hopefully I didn't make too many mistakes.
Steve
I was holding off on my next post until we reached the one year anniversary since Judi's last surgery. That date was April 5. Unfortunately, our world has been turned upside down again and I had to put Judi back into the hospital on April 4. So what I had planned as an upbeat picture of where we were heading in the coming years, is going to be the start of yet another road block on the road to Judi's recovery. I will do my best not to become negative, but I would be untruthful if I said I was anything but devastated by the recent turn of events. I have actually written and re-written this blog entry a couple of times since I started it on Easter Sunday. You'll see what I mean a little later.
Last week I noticed that the appearance of Judi's incision had started to change. It appeared that it was being "sucked in" to her head. The incision has changed appearance in the past, but each time it raises my sensitivity level to monitor for additional changes. I also noticed a significant change in her behavior. There were a lot of weather changes occurring during this time and changes in barometric pressure often impact people's behavior that have undergone surgeries similar to Judi. Both of these are also warning signs that something could be changing in her head (a shunt problem being one of them), so I was on the alert. I spoke with her neurosurgeon on Monday and he arranged for her to get a CT scan the first thing Tuesday to see what was going on.
As soon as the neurosurgeon saw the CT scan, I was called to get Judi to the hospital and admitted right away. The CT did not show any issues with the shunt or infections, but did identify some air between the outer layer of the skin and the prosthesis that is currently in her head. This was very bad news. The presence of air indicates one of two things: 1)a large infection exists somewhere, or 2)a breach exists in her head that is allowing fluid to leak out and air to leak in. They immediately started her on several IV antibiotics as a precaution while we worked to figure out what was going on. Infections that are large enough to create these air pockets are usually very visible on a CT and the patients are usually very sick. Based on this and the negative results from all of the infection tests/scans, we don't believe this is the issue. The general concensus is that with the degrading state of the incision, it is most likely breached and is allowing some fuid to drain and air to enter the cavity left behind.
So why is air bad? The air itself is not the problem. The problem is that if air has entered her system through a breach, bacteria has as well. The bacteria can result in an infection if not dealt with. I won't go into a discussion on what could happen if infection gets into her brain, but it would be a very bad thing. The antibiotics will hopefully kill any bacteria that it reaches, which brings us to the complication. The prosthesis is not living tissue so there is no blood circulating through it or around it in some areas. Since the blood flow is what gets the antibiotics to the bacteria, there is a high probability that bacteria could have contaminated the prosthesis from the leak and the antibiotics will be ineffective in killing it.
The plan was to treat her with antibiotics through the weekend and take her to surgery early the following week and remove the prosthesis. I can only describe this as a heart breaking turn of events for us. Many of you remember what happened to Judi when we had to remove the bone flap back in 2010 due to the infection that developed under the flap. Judi degraded quickly and after about 2 months she had regressed to essentially the same level as when I first brought her home. When we installed the prosthesis in April of last year, she started gaining ground almost immediately. A large number of people in Judi's condition exhibit this response. They don't know why, only that it is a real condition and of course Wilkerson luck would put Judi in that category. Judi has never recovered to the same level that she had reached when we had to remove the bone flap. Unfortunately, this often occurs as well and in all likelihood (from a medical stand point) she will not recover as much when her head is repaired the next time.
We had come to grips with what we had to do and then all of a sudden the incision started to heal. The options started to change then and I thought all of our prayers had been answered. We had actually developed a plan to discharge her to a wound management group and I had convinced them to include hyperbaric oxygen therapy as well. I was starting to think we might be OK. I won't go into all the details, but the night before we were going to discharge her, the incision started to degrade in a different area. My heart sank when I saw it. You could actually see the plastic prosthesis through the incision. A subsequent CT scan showed that even more air had entered her head indicating that there was still a breach. This eliminated any possibility of leaving the prosthesis in. The risk is just too high that an infection will occur.
So here we are (Friday the 13th), waiting for her to go to surgery. She was scheduled for yesterday, but emergency cases and higher priority cases pushed her off the schedule. This is one of the bad things about MCG, but I try to remember we did the same to someone when Judi was brought in almost three years ago. I'll keep everyone up to date as we work through this. The standard protocol is 2-3 months of antibiotics (depends on cultures) and a period of 6-12 months before going back in. We obviously have to do something different the next time. She has had problems twice now with things that are not living (bone flap and prosthesis). There is a graft that is done that takes rib bones and tissue to build her a living structure and is closed by a muscle flap that is also connected to a blood supply. This is a BIG surgery, but something like this will most likely be the next option. I will be taking her to some plastic surgery specialty centers to understand what options there are. With all the work being done with our returning troops, there may be some more options that are less invasive for Judi. I obviously want to get some other opinions anyway to make sure she is getting the best possible opportunity to recover. If she starts to lose ground like she did last time, I'll work with them on what the right schedule is forger "total" health and well being.
We had planned to make our final move to the condo over the long Easter weekend, but we spent it here instead. I am not sure when we will do it now. We will have to see how Judi does and adjust as necessary. I had planned to take Judi on her first beach trip since her injury this weekend for her birthday (April 15), but we'll just wait a little longer. We are still going to try and get to Facebook to make it a little easier to get out some quick updates. I'll make sure everyone knows when we are getting close. Please keep Judi in your prayers. We need every one of them. A special thanx to my SRR co-workers that have been lifting us up in prayer. I continue to be humbled and amazed at the support we have received. Those prayers will be what lets her come back against the medical odds I mentioned above. I never could get my computer to connect using the MCG system, so I had to use my IPad to make the entry. There are several limitations(no spell check for one) using this as an input device instead of a computer. Hopefully I didn't make too many mistakes.
Steve
Saturday, February 4, 2012
A Tough Month
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
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, 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
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