Monday, July 12, 2010

Finally -- A New Update

I have been gently reminded twice just today that I haven't updated the blog and people want to know how Shannon is really doing! I promise it has been at the top of my list for at least 4 days. When we get up in the mornings we think we are going to have so much time set aside to do the blog and then well.....I guess its easiest to say, "Life happens!" But that doesn't mean we don't want to keep the blog updated. This journey is far from over and we are learning some hard lessons and finding even more gratitude for friends and family.
People who come to see Shannon or haven't seen her in a while all marvel at how great she looks. I imagine there may be a number of you out there that have not seen her since her accident. So first, I thought I would try to give you an idea of what someone who came to visit would see. Shannon really likes her spot on the couch but in the last few days she has even been getting up some of the time to answer the door when someone comes. Regardless who comes, they are generally greeted with a smile, a hug and often quite a bit of excitement. She loves company! Shannon lost over 10% of her weight in the hospital and has only gained about 5 pounds back, weighing in yesterday at 94.4 I believe it was. So you would see a skinny little thing but she looks very healthy! Her hair has grown back a lot which really surprises most people and when they comment on it, Shannon scowls and whines that she doesn't like her short hair. Many people think she is quite adorable in short hair. When she had her second surgery, they shaved only 1 1/2" like a racing stripe following path of the first surgery. The hair, which was not shaved then, is now almost long enough to cover the scar and the area that was shaved is coming in fast. Her eyes, which have been unnaturally dilated have returned to nearly normal. She still can't see long distances and her reading vision still struggles but they continue to improve. We have a eye doctor's appointment this week so we will see what they think of the progress.
Shannon loves to visit with people and really enjoys having her friends around. They talk about everything from past experiences to what will be happening at the high school come this fall. She carries on a full conversation. On occasion, I get them to play a game with her to work on more therapy. She can give most of them a run for their money with Othello, Blink and Tutti Fruitti. Games that most people don't know so she gets to practice telling people how to play which engages great organization skills in speaking. For the most part though, if you were to come just to visit, if Shannon isn't tired, and you didn't know her real well, you wouldn't have a clue that she is still struggling through some tough challenges. It is amazing to us so we can totally understand when guests tell us that they are blown away by how good she looks. But if she is tired, she makes many more mistakes in her speech, and the ability to stay on topic worsens and it is more about her than anyone or anything. But then none of us perform as well when we are tired!
Shannon is getting out more and more. A very good friend has come back for a visit and her friends were all getting together to have a party for him. They hadn't told her about the party because they figured she wouldn't be able to handle it. Well, with all the miracles that continue in Shannon's life, you probably guessed that she went to the party with her dad as her date and did extremely well interacting with her friends. Dad, of course wouldn't let her stay as late as she would have wanted but she still had a great time being included and being there with so many of her very good friends. They are indeed, very good friends as they continue to support her and accept her with her limitations.
So I have talked about all that she can do....where is she at on the recovery scale? Well, her balance has improved immensely but we still stay close by. In the house, except for the stairs, we often are 10 feet away from her when she wants to go somewhere. When she gets tired however....all precautions are back in full force for we see how much more unstable she is on her feet. She continues to work on organization, planning, and executing every day decisions with the help of the therapists. Without them, she probably wouldn't do much! They work on challenges that make Shannon really concentrate to see how long she can stay on task. Last week we were lucky to get 10-15 minutes from her. Today she remained focus for nearly 40 minutes!! The PT has her walking and now she is working out with the weights for strength training. A good friend has offered her pool and Shannon has worked out there once and we need to go more often. These are all the somewhat tangible things that we see making great progress.
Another step in the progress is not so fun. One of the stages that those with traumatic brain injuries (TBIs) go through is anger. As you think about it, that would be a pretty obvious stage to go through. Who wouldn't be angry if they woke up one morning and they had not only lost the last 8 weeks of their life but realized that the rest of their life is going to be affected by what they are dealing with! So it is a good stage to hit for, as the therapist said today, "she needs to get angry enough that she will really decide to do something about it on her own." So it is necessary but the tough part is that the anger is directed at Mom, Dad and sister Kate. We are the bad guys. I guess all parents get to be the bad guys a lot. But we have not had this kind of an attitude with Shannon ever before. We don't know if it is just part of the TBI or part of a personality change or just being an ornery teenager. But it certainly wasn't in her character before so we are hoping that it eventually will work its way through. It isn't very fun. Even in her conversation with friends and therapists, she is getting more anger in her voice over certain topics. The tough part is that she has lost most of the independence that she once had. Her anger to mom and dad is concerning her cell phone, computer, car keys, and an old boyfriend. Every doctor and therapist and every book we read tell us we are doing the right thing but it sure is hard. She is limited on the phone and computer because we want her to keep the friends she has! I think I mentioned that the doctor (and it is even in one of the books as well), said that Shannon will be lucky to have any of the same friends 6 months from now. That is because as she goes through these stages, most friends get offended and don't wait around, they move on. They don't recognize the changes that are happening in the individual as being from the TBI and so they take things personally. People with TBIs can be pretty blunt and even mean at times and not even think that they are. But Shannon does have some pretty amazing friends that as we teach them about brain injuries, most of them totally understand and continue to support her. So the phone and computer are limited so that we can monitor what she is writing, saying, texting, etc. And along with that, she doesn't have the time to spend texting and being on facebook like she once did. We try and find time every day for her to use her phone and check her facebook but many days go by without the time to even open the computer. If you understand the TBI, this all makes sense and it is truly what is best for the individual but it certainly does not seem that way in the person's mind. For example, Shannon thinks she should be able to just go jump in the car and drive! Part of the reasons that she can't do that: her impulsivity, her reaction time, her attention span, her vision, her perseveration, and to top that it's the law! If you have had a TBI, by law, you must take a special driving test (written and road) and pass it to make your drivers' license valid again. Even so, because things aren't necessarily rational to her right now, she thinks she should still be able to drive.
So right now Shannon is often mad at us and can turn on a dime with how she is feeling (another great TBI trait).
I should add that her sister Kate, is targeted too. She wants Kate to be here all the time when she isn't working. Kate does have a life! And so although she sees Shannon on the weekends and occasionally on a week day, it isn't enough for her. On this past Friday and Saturday, nearly every 15 minutes Shannon was asking for the phone to call Kate. Kate understands so we let her call. (But if you ask Shannon, we don't let her ever use the phone! :)) So Kate has a voicemail box full of Shannon telling her that she needs to get over here to our house right NOW! And it is not said very nicely. It is again, all part of the TBI. It certainly is easy to understand why, in so many cases, people with TBI's lose their friends.
Sometimes we hesitate to tell you the toughest parts of the recovery. That above doesn't paint a pretty picture of Shannon but I hope that you will all remember that that is not our Shannon....that is caused by the TBI and with our collective faith in the blessings given to Shannon, she will fully recover from these challenges too.
Last night we experienced another tender mercy from our Father in Heaven. Shannon's anger really comes out in the evenings. It had been a long day and we weren't too excited about dealing with mood swings or anger. It was getting late but not late enough for bed. The phone rang. It was a favorite adult friend of Shannon's and she wanted to come over with her family to see Shan. Shortly after they arrived, 2 other very good friends arrived. The evening was spent in good conversation and watching an Othello match between some of them and Shannon! Shannon, for the most part, was calm, nice and appropriate and we didn't have to deal with the long bedtime ordeal! After that, she was happy to just go to bed and go to sleep. It was so nice and so needed! :)
Shannon attended church for the first time yesterday as well. We all went to her Dad's BYU ward because he was being released as the Bishop of the ward. She did great and even bore a very short testimony. But the amazing thing is the number of people who came up to her in tears and told her how grateful they were to SEE HER! It was very touching and reminded us once again of this great miracle that we are still watching and are grateful for the Lord who is fortunately in charge!!


  1. Thank you for the wonderful update--the good as well as the hard. It helps us to understand so much better what all of you are going through in your different ways and gives up specific things to pray for. I know from personal experience how hard it is to be patient for your body to heal and to regain strength, energy and ability. Shannon, just keep fighting and stay determined to get back what you have temporarily lost. I know it is hard and frustrating, but like Grandma Lulie told us--you can't go around it, over it, or under it. You just have to go through it. You have so many, many people who love you so much and pray earnestly for you every day. Try to hang on to that lifeline as you fight your way through some of these hard things. At a future day you will look back on all this and say, "Wow! that was really tough, but here I am now!" Even though our medical situations are different, I tell you that with confidence--I've had that experience before. It didn't happen quickly, but it did happen. I love you all!

  2. It was good to see you recently Shannon. You look great-I really do like your short hair, it's spunky! I think of you and pray for you often. Have a blessed day.

    Smiles, Julie