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

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.

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

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.

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.

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

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

Picking Up Speed

Wow. It has been a very busy few weeks. I will start with a very simple statement: Judi is doing fantastic!

In just a few short weeks she has come back to essentially the same point she was when we had to go back to surgery in the summer and remove her bone flap. She has become a very "busy" lady. She wants to touch and explore everything (and I encourage her).

She is doing great in therapy and all of the therapists are impressed with where she is today. I would have to say that today's session was the absolute best I have ever seen. She was waving to everyone and laughing at her crazy husband. It was a bit contagious to the therapists as I watched them get drawn to her as well. I think it does every one's heart good to see someone in Judi's condition have a day like she had today. We had planned to put her in the walking harness today, but the right therapist was not available. We'll give her a try next week. She is doing great standing in the standing frame and is starting to hold her head up as she is standing and pumping the glider frame. Holding her head up while standing is a significant milestone since it takes a great deal of muscle control and concentration. I expect her to continue to get stronger and we'll keep working her left side to see if we can get it activated again. I still remain hopeful that she will recover control there as her brain continues to recover functions. She is doing a fair amount of work with the iPad as well. The speech therapists use them for some of their activities and I bought one for us for our birthday this year that I had been working with her on as well. We are using the same applications and she is starting to trace letters, work some simple puzzles and have some fun as well. this will become more and more useful as she continues to improve.

She is starting to feed her self again. It is still a pretty ugly sight since she is still working hard on the eye/hand coordination. I know it means a lot to her to be able to do this for herself. You can see the look of determination in her eyes and the sense of accomplishment when you tell her she is doing a great job.

She is trying very hard to speak now. I am fairly convinced she has said a few words, but they were so soft I couldn't be certain. It won't be long.

She has become a hugger and a kisser again. Hopefully this is not "too much information" as Jessica puts it. If I am close to her, she needs to be holding my hand touching in some manner. When I sit her in her recliner or chair, she always reaches out and gives me a hug (I can't put in words what that does for me). She loves to get kisses especially when you are giving her some positive reinforcement for something she has done well. She also loves to snuggle up at night. I think she is tricking me by acting like her legs are bothering her so I'll wrap her up at times. She has that little Judi smile on her face like she got what she wanted. There are a lot of psychological positions on what this means out there, but I think she just needs to know that I still love her regardless of her condition. She gets a chuckle when I tell her I work for hugs. I will admit I usually leave with a happy tear or two in my eyes after one of these interactions.

She is also trying to help with everything she can related to her personal care. She lifts her leg and slips it in her pants to get dressed. She pushes her foot into her shoes. She tries to help pull her shirt over her head. She desperately wants to brush her own teeth (probably because it feels weird to have someone else doing that "to" you.

It also more and more evident that she fully understands what is going on around her. She is responding more and more to conversational items and loves to be included in any discussions going on around her. I still believe the major issue is to get the input/output portion of her brain activated again. I'll keep focusing attention here and try to figure out a way to eliminate the gap.

I continually have to watch the balance of pushing her to do new tasks while not letting her get frustrated because she can't do it yet. I have continued to talk a lot to her and explain what is going on. She is continuing to get better at responding with hand signals to let me know she understands. I think this is also helping her to try new things since she understands what might be preventing her from doing it and that I understand it will take time and that I'll help her no matter what. I have been fortunate to have some of my trainer skills to draw on here.

Well, I think that brings you up to speed on where we are. Please don't stop praying for us. I am convinced that the prayers from so many around the world have made the biggest impact on Judi's recovery. I can tell you for sure that they are what keep me going on those days when I wonder how I can possibly make it one more minute. Come by and see Judi if you can. She loves hanging out with the girls especially.

Steve

Roller Coaster

Before getting to the post, I thought you might like to see the gorgeous lady I am married to. As you can see, she is still smiling and sporting her new "round head!" You'll have to forgive my poor skills at inserting and sizing photos into the blog.

It looks like we have finally ignited that "spark" back in our gal. I think it took a broad range of items from different sources to get her excited again. She finally started holding her head up again and received positive feedback from every person around her. She was constantly hit with "you look great" or "they did a great job" or something along these lines. I rolled her in front of the big mirror at the barber shop and she scoped out her new look from every angle. She had her appointment with her rehab Dr and we were successful in getting her back into outpatient rehab in all three areas (physical, occupational and speech)!!!! She received multiple complements from the staff there as well. She also had an appointment with her urologist and the nurses and Drs alike had nothing but positive feedback for her. It is worth mentioning that she held her head up for essentially all of these interactions (this is better than she had done in the past). She also started to hold her head up most of the time while riding in the van and began to take active interest in the sights around her. I reminded her of where we were and why we used to go there in the past and she seemed to take it all in. I think the biggest push to get her back on track was when I took her to the first outpatient therapy session for her evaluation. You would have thought she was a hero returning from the great war. Everyone called to her and welcomed her back. They all came over and told her how great she looked and how excited they were to have her back. You could almost see the "glow" begin as she realized that she could indeed do this. When we sat her on the mat to see how her core strength was doing, she held her head high for the entire time (she has never done that before). She also did a great job with all the exercises and the therapists were impressed. She is also starting to interact more and has resumed reaching out with her right arm/hand. While that sounds like a small thing, it is a huge step. One key task she has resumed is giving me big hugs and holding my shoulder when I transfer her back and forth. She is also helping during transfers by pushing up hard with her right leg as she moves through the standing position. So lots of good news there.

Unfortunately, we have hit another bump in the road. Last Thursday she had a series of seizures that ultimately put here in respiratory distress and required us to take her to the hospital in an ambulance. These seizures were different than the ones she has had in the past and she just wasn't able to stop them. I was talking to her on the phone from work and most of the time I can get her to pop out of it. Her caretaker indicated she was listening to me and fighting hard, but couldn't quite make it back. We ultimately had to intervene with medication designed to stop the seizures (thank goodness we had planned for this potential scenario). As I was talking the caretaker through managing the seizures, Judi started having difficulty breathing and at that point it became an emergency. I was also worried that her heart rate may be getting sky high as well based on previous experience with these. The EMTs put her on oxygen and by the time they got to her the medication was already starting to take effect and stop the seizures. Her heart rate was not dangerously high and her blood pressure was OK. I met them at the hospital and my wonderful day at the ER began. I could write a novel about that day, but I'll give you the Reader's Digest version. The main goal was to determine what caused the seizures to occur. Typically this is due to an infection or fever of some sort that lowers the threshold for seizures for people that are otherwise controlled (assuming medication levels are correct and hers were). All of these culprits were ruled out. We were obviously concerned about the possibility that something had happened inside her head as well especially since she had gone through the recent surgery to insert the prosthesis. The initial read of the CT scan by the radiologist was reported as a severe bleed in the right side of her head and the neurosurgery group was immediately called in. Judi's surgeon was not there that day. As you can imagine, my world went black with this news and it took everything I had to hold on while the neurosurgeons went over the scan. To my relief, the neurosurgeons determined that the abnormality was most likely thickening of material around the surgical area and not an active bleed. They were also successful in getting her surgeon on the phone and he concurred with that evaluation (he was evidently near a computer where he could review the scan). In actuality, Judi's brain has moved significantly towards the normal position and the air gap has decreased significantly. All in all, the CT scan turned into nothing but good news. After the determination that there was nothing surgical to be concerned with, the onslaught on neurologists began. They looked at every possibility and could not find a smoking gun. The main concern was the number of seizures she had simultaneously without an apparent initiator. I asked them if it was possible that it was just her brain "waking up" and becoming more active and I got the answer I always get from these guys "It is possible, everyone is different." We did raise her medication level to put her higher in the normal range just as insurance. She seems to tolerate this medicine well and it doesn't zonk her out so it should not be a problem. We left that evening and she seems to be doing fine. I told her that we didn't find anything and that the most likely cause was an increase in brain activity. I am not going to let her get frustrated at this point in the game while she is finally gaining some ground.

That was a lot of words, but several of you called me checking on Judi since I left from work pretty abruptly. A few other things of note. Judi's rehab Dr is leaving Walton Rehab and going to Shepherd in Atlanta. It is my intent to have him continue to follow her recovery and this will also allow me to get access to the resources there from a different angle. As many of you know, I have been planning to get Judi evaluated there and at the Kessler Institute (New Jersey) once she got stronger and was recovering well. Both are top rated facilities. Perhaps this is just another one of those doors that God has opened to keep Judi on the path to recovery. And I guess lastly, Judi's caretaker called and told me they had to admit her husband to the hospital and she would not be available to work Monday. And with true Wilkerson luck, her backup was not available. That left me with the option of using someone that had not worked with Judi, or stay home and care for her myself. I am guessing you figured I won't be at work tomorrow. I am training two additional caretakers in the event she has to be out for several days.

One last thing. Several of you were asking me about the prosthesis that was installed in Judi's skull. The picture to the right is the model that they made of Judi's head using the CT scan and computer imaging. The blue piece is the model of the prosthesis that was generated to match her head. As you can see, there was a significant portion of Judi's skull removed (about a third). The dark lines are where the piece fell out (rubber band broke) and I had to glue it back together. It is a single piece and it fits perfect in Judi's head and then is screwed into place to keep it stable. The plastic material is porous and the bone will ultimately grow into the prosthesis and make it even stronger.

Well, I am spent. Hope this brings everyone up to speed. She is doing fine and I believe she is going to step up once more and let that Judi spirit drive her. Please keep praying for us and stop by and see her if you get the chance.

Steve