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