Saturday, August 28, 2010

Back In School

Pheobe felt that I should make an entry this week since 1) I haven't written for quite a while and 2) I was here this week while she was in Seattle. (We thought a new grandson was on his way last weekend, but he decided to hang out in a more comfortable environment for a few more days. Pheobe spent several days there and got home early this morning.)

But the big news is that Shannon started her Senior year of High School last Wednesday. She is taking a full load of classes--2 AP Math classes (Calculus BC, Statistics), AP Biology, AP Psychology, Drama, English, Debate and Seminary. She and I went and talked to the assistant principal on Monday and got a 504 accommodation plan in place which will help her perform well in her classes as she continues to recover from her TBI. I spent time talking to her teachers and they are all really supportive--in fact one of her teachers suffered a TBI in a car accident a few years ago and has a personal understanding of all this. For the most part, things have gone well this week. We will be interested to see how things go as the workload of classes gets into full swing. She met with the psychologist again on Wednesday. He showed Shannon the scans of her brain as he taught her about brain injuries and the process of recovery. She seemed to enjoy that and has a good rapport with him. We continue to see improvement in mood stabilization and increased stamina. She was more tired after school on Thursday than she had been on Wednesday. I don't know if that was a cumulative affect or if it was because the classes on Thursday were more challenging.

Some time in the past few weeks Shannon decided that she wanted to volunteer at the American Fork Hospital--she really wants to be able to work with children who have suffered brain injuries. She had filled out the applications, submitted them and had an interview last week. Wednesday, they called to offer her a volunteer position. So she will be working at the hospital once a week on Monday afternoons. She seems pretty excited about that.

We are at the stage where there is more time between significant milestones. We are finding again and again that for many things there are no concrete answers--just lots of questions. Some answers come with time, which can be pretty frustrating for Shannon and for us. We appreciate you continued concern for us and for your support and help as we walk down this path together. Thanks so much!!

Saturday, August 21, 2010

Thursday we met with Dr. Giles, the last time Shannon met her, it wasn't very pleasant. However, this time was much better. This is the doctor who prescribes the medications for Shannon. She was very pleased at the progress Shannon is making.
We also met with a pediatric psychologist that will be helping Shannon with some of the challenging adjustments she is still facing. We were all very impressed with him and his knowledge about brain injuries. It is always such a great feeling to leave a doctor's office and feel like they really know what they are doing for you! So much of medicine is a guessing game because we are all so different.
We have had two meetings with the school. We had such hope that this would be easy to get the help needed but as with all education people, they are spread too thin. We are still at some what of a stalemate with Shannon as she believes she will be totally fine at school all day. And with her determination, she just might very well show us that we are underestimating her will power!! Her balance is still a bit of a concern...especially when there is a lot going on around her and when she is tired. With the amount of concentration that is needed for all the classes she is taken, we are concerned about how tired she will be as well. But as we have said many times before, time will tell and we will just have to wait and have patience and trust in Shannon and the Lord.
Someone mentioned Shannon's restrictions and so I thought I should update everyone there. As Shannon has continued to progress and make wise choices, the more of her "freedoms" (rather privledges) have been given back to her. There are some that will not ever be because they should have been restricted long before the accident. But yes, Shannon can go out with friends, she has full access to her computer so long as it is being used in the family room/ kitchen. She has her phone for the most part but not for use in her bedroom! HOWEVER now the phone is not in working order so she still can't call. Dad is working to get that taken care of as well. But all in all, for the most part, Shannon has complied with the restrictions to the point and has progressed far enough that we believe she can handle the types of challenges that may come with the phone and computer.

Tuesday, August 17, 2010

Where did it go?

I went to find what I had written last about the insurance, knowing I had written about the 2nd appeal and I couldn't find the entry. In going back again today, I found where it was supposed to be! The entry on Thursday 8-6-10, near the end, I say there is always good news and bad news. I had written a very lengthy explanation of the bad news and I think I decided it was too much so I deleted it thinking I would rewrite it and then never did. Since it took me so long to write it in the first place, I totally forgot that I had deleted it! It all just goes to prove that my brain is mush!
The "bad news" was the details about the 2nd insurance denial. I gave a lot of details but today I will really only give just a few. First, obviously it was denied. We had the opportunity of "presenting" (only 10 minutes) to the 3 person committee by teleconference. We even had Dr. SuchNeibar on the line and gave her input. They didn't say a word until the end and with the first question out of the doctor's (from the committee) mouth, it was obvious he had already made up his mind before we even got on the phone. I truly do not believe that they had read all the documentation that we had sent. As you recall, one of the main medical issues was that Shannon's condition causes her to fatigue to the point that a trip to SLC to therapists would make the therapy sessions very ineffective. The doctor actually even recognized that by asking why the hospital didn't have a place for us to stay that was closer to the hospital! Ya, he asked that! Then he said, knowing that we are paying out of pocket for the current therapies, "why don't the parents just use that money for a hotel closer to the therapists?" He truly wanted to totally displace the family so Shannon wouldn't have to deal with the fatigue issues. Doesn't that admit that they know she can't travel to therapy? Then we get the denial letter and it says that her CURRENT conditions do not warrant more therapy! Well, first, she has made a lot of progress which is due to the fact that we have paid out of pocket for her therapies that they should be paying for this entire last month! She still needs the therapy, but not as much so she has remained in therapy. And we were appealing the denial of the services back 4 weeks ago. This, by the way for anyone who might want to know, is Regence BlueCross BlueShield. You can obviously tell that I get pretty steamed about the whole issue. I believe much of it is because we are private pay individuals without a big business client to back us up. We are easy for big BlueCross BlueShield to refuse to pay. We have been told that because they have the big bucks that we would not have a chance if we took them to court. Again, the little guy... We have 180 days to file our last appeal. This appeal goes to an outside group that is not supposed to be biased by BlueCross BlueShield. But they are paid by them and one of the voting members of the last appeal committee is the one that delivers all the documentation to the outside group. Somehow that doesn't give me a lot of confidence that it will be unbiased. So when we have taken a long enough break from the stress of dealing with the insurance, we will file the last appeal and see if it has all been for not.
Gratefully, we have had good therapists that have continued on with Shannon with us paying them. Continuity is so important. They have really taken Shannon a long ways. We are grateful for their efforts and their tolerance with all the challenges that they have faced!
With the update on the insurance, which was supposed to be posted a week ago, I will end this post and finish the one I started last night.

Monday, August 16, 2010

All good news!

Thank you all for your comments! There were very helpful during a time that the support was needed. Once again the Lord provides a way to let us know that His angels are watching over us!

Tonight I wanted to give a couple of updates. First, we went to the eye doctor last week. That was a very positive experience. The doctor looked in her eyes and remarked how great the corneas looked! As you recall, the last time her vision was 20/70 and 20/80 but it has improved to 20/40 and 20/50! He expects it to just continue improving although it may seem slow. He suggested she sit in the front of the classroom and use reading glasses only if she wanted to. Then he didn't want to see us back for 4 months!! Good News! We love the good news!! She does still struggle with her eyesight and squints one eye a lot but she does get by very well.

More good news is that Shannon seems to be much calmer with fewer incidents of anger or sadness. We have had several very good days in the last week. Yesterday all 3 therapists commented on how well she was doing and how her attitude made all the difference. She about wore me out though! Yesterday I went with her and her physical therapist on a walk for 70 minutes!! It had a pretty good clip most of the way. We made a few brief stops; Grandma's and 2 of the YW leaders homes. But I was tired when we returned. An hour and a half later, Shannon was involved in OT and then Speech, one right after the other. Immediately, after that we went to the AF hospital because Shannon had an interview for a volunteer position she herself had applied for! She would be awesome and it would be a great place for her to give back to the community. We hope that the fact that she is a senior and is still in recovery won't stop them from letting her serve there. After the interview, we met Shannon's sister for a quick ice cream, went back home and a bunch of kids came to go swimming with Shannon. At 6:30 pm, she finally slowed down! It was a very long day and today it shows in that she is more tired than usual but she is still doing all that she needs to be doing. She is truly a fighter!
Another little miracle to tell you all about! We went to the dentist for the first time since the accident. Shannon went for 6-7 weeks with out a toothbrush in her mouth and habits are hard to re-establish. So her teeth have been very neglected. The dentist found a tooth that must have been injured in the accident and had since broke plus he found two very small cavities in the back of her mouth. They are all simple enough that he can fix them in one appointment. He was amazed and said himself that it was a miracle that there were not more problems with her teeth! So another miracle to add to the list. It surely is a very long list of tiny miracles that we continue to experience in the process of our "big" miracle!

Wednesday, August 11, 2010

My Rebuttal

This is Shannon: So just to inform you all…. I may still have some vision problems- which then leads to some balance issues. As for discouragement, I’m pretty sure that’s pretty darn self-explanatory, I mean hey, when you can’t do all the things you could before, discouragement plays a pretty big role. As for depression however, I do not see that as an issue at all. The only things that could contribute to depression are my horrible dreams every night or some of my discouragement. Other than that though, I believe there is nothing wrong with my depression state. Take it from someone who has actually lived in the body everyone seems to be talking about. Fatigue, that’s only a little bit of cognitive fatigue, which really doesn’t count because the only time my parents ever see effects of that are when my therapists are trying to make me do something I don’t want to do! I mean hey, it’s not like it’s because of fatigue or anything, it’s just dumb in my mind. As for the impulsivity, wish I didn’t even have to go there. Because it freaking sucks how much my parents think I’m impulsive even though I’m really not. At all. The only recent thing I’ve done “impulsively” was leave my grandma’s house to walk home without telling my mom. But that was not impulsive because we had been there forever so I was just ready to go home, completely understandable. And I didn’t tell my mom because a) she already knew and b) because I was afraid she wouldn’t let me walk home. The other thing they’ve said I’ve done impulsively is that I did this worksheet without reading all the directions first. But the problem with that is that each direction told you to do something! So after I did it, then I’d read the next one, but pretty soon, I realized I had messed it up. LAME!!!
Other than that, I agree with the rest of the things my mommy already put. But I also must add that I did get a phone call from Brian Regan on my birthday!!!!! And it was freaking awesome. I know my mom has already posted that, but it’s always something to cheer me up! :) I didn’t believe him saying it was actually him but eventually I did. It was so crazy, man!

Tuesday, August 10, 2010

Patience Requires Time--Lots of it!

I was reviewing the blog looking for a comment from someone early on and came across the entry that talked about "miraculous doesn't mean instanteously". Oh my, how true that is!! How grateful I am for all the little miracles along the way that keep us from forgetting the BIG MIRACLE of a full recovery. I thought I would share a couple of the most recent little miracles for they have not ceased, we just aren't paying as much attention as we should.
Sunday, Shannon was asked to talk to the children in Primary. It was a difficult task considering Shanon hasn't been in front of a group yet. But she was asked to come to both Junior and Senior Primaries and talk to them about miracles still happen today. She talked about how the Brother of Jared had to do something himself before he got the miracle of the Lord touching the stones and causing them to give light to the barges. He had to make the plan and then find the rocks and then the Lord gave him the miracle. She then told the children that they had caused a miracle by doing something--by their fasting and praying for her because she was alive and there. All the doctors did not think she would live and yet she was standing in front of them. It was very sweet and very tender for me as her Mom to listen to. The tender mercies from this experiences--first, she was asked and second, she had to recognize herself that the fact that she is alive is a miracle. As she left the senior Primary, the Primary President said to the children, "There is your modern day miracle." She felt that internally as she was leaving without a doubt.
The question people are asking us all the time now is, "is Shannon going to go back to school?". The answer is absolutely. She is adamant that she can handle all 4 AP classes as well as debate and 2 other classes. We, of little faith, are concerned that it will be too difficult; not because of the academics but because of her cognitive fatigue. Her attention has gotten a lot better but still lacks some but mostly because of the fatigue. We are concerned about her balance walking down the halls of the high school with 2500 other students but hope that the next two weeks will make a significant difference to her balance. We are concerned and plan to be very involved--more than ever before, but we believe in Shannon. Even now at times when the fatigue gets to her, she can become focused just to prove it to us! She is a very determined girl!
So the next tender mercy I want recorded follows. Yesterday I began the process of finding out who I needed to talk to in order to get any supports we might need for Shannon. I had been told that each school district had their own TBI team. So i called the school district, and after being transferred only twice I ended up with one of the team member. I had actually been given her name before but I had lost it and so it was only by chance that I got her. We talked for a while but she couldn't help me a great deal without Shannon's records and because there was another team member that was over the secondary schools. But in the conversation, she did tell me that to get a different school counselor (whih I knew we would need), I would need to talk to the assistant principal over that department. So I called the school and was put in touch with the right assistant principal. The great tender mercy...he totally understands TBIs for his wife had a severe TBI just 3 years ago. I could have cried--to know that there is someone in authority at the school who "gets it" will make everything a little bit easier. I asked him questions about his wife and if she had dealt with some of the things that Shannon is dealing with and he said yes each time. He knows! That alone gave us peace and reaffirmed the knowledge that the Lord has a plan and it is interwoven with people's lives so that the right people are in the right places at the right time for the support that is needed for His children. It is amazing and I am once again so grateful to God for letting me know that He is there.
I think I mentioned that Shannon has begun to put a schedule into place each day. She was always excellent at planning before and making lists of what needed to be done when there was a lot to do. She is doing well at that and it is making a difference. She has more control and she is more productive each day. She has been positive with her therapists and we are cutting back on the amount of time that the therapists are here. She is scheduling activities throughout the day that they have recommended that she work on. She gets help from us when she needs it. This has also been good because the number of visitors have dwindled as would be expected. She certainly misses having people come. FYI--we don't really schedule when people come anymore, first because there aren't that many and second, because she is able to handle most any situation. Late afternoons and evenings are always best but now she even has some days where she is able to see people in the mornings. So call to see if we are here but you are welcome any time to visit. I don't know how many people are even reading the blog anymore but at least we are recording some things that will make a great history for Shannon.
We are still dealing with lots of challenges; eye sight, balance, depression, discouragement, impulsivity, and fatigue. I talked with the education specialist at Primary Childrens' today and she reminded me again that Shannon's injury was a very serious injury and it takes a very very long time for recovery. She is amazed at all Shannon is doing. So we need to remember that when things seem to be going so slowly and be grateful for where we are!

Friday, August 6, 2010

Thursday 8-6-10

It’s past time to update the blog. There are just some days that are so difficult and/or so busy that even thinking about writing on the blog doesn’t come to mind.
Shannon’s birthday party and open house was a great success. Thanks to all who came, emailed, called, stopped by. It was a great day! I was quite concerned because Shannon got up in a pretty down mood. We had canceled all therapies because it was her birthday. So she had a lot of time to just do her thing and it probably wasn’t the best for her. But we continue to enjoy tender mercies. About 1:45 in the afternoon Nephi knocked on the door. As you may recall, this is the man that fell from our roof back in February and made a miraculous recovery from a brain injury as well as many other injuries. He was stopping by just to wish Shannon a Happy Birthday since they couldn’t come that evening. This was the first time that Shannon has ever actually met him. She was pleased to see him and for the next 45 minutes they talked about the similarities and the differences of their TBIs. It was really awesome and it picked Shannon’s spirits up a lot before her friends came for the party. Thank you Nephi!!
People began to arrive and we began watching the clock for we knew what was going to happen at 3:00 pm. The phone rang; Udell answered it, and then told Shannon it was for her. She wanted to know who it was and Udell just said it was for her and she would have to find out. I ran for my camera and got it going about the time she said “hello”. For the next minute or so she just kept saying things like, “really?” “You are kidding me”, “who are you?” “No, really?” She wouldn’t believe the caller when he said that he was BRIAN REGAN! Her favorite comedian that she and her dad quote all the time and have helped her through some tough times. Shannon’s sister-in-law, Kim’s sister, Erika, got the idea that it would be cool for Shannon to meet this guy she quotes so much. She got the ball rolling and then turned it over to Kim. Kim must have made a number of calls and sent several emails getting it all set up! Shannon was thrilled. She talked with him for maybe 10 minutes. He told her that he had read her blog and that she was a real inspiration to many people. He told her that he would like to meet her and that if she was ever in a city where he was performing, he would get tickets for her, her family and some friends to come to his show so he could meet her. As the conversation was coming to a close, Brian said, “well, you take care” and she said, “You take luck!” which happens to be one of Brian’s jokes. She loved pulling that one on him! Throughout the rest of the day, she would tell anyone who wanted to hear who she got to talk to that day! It was a great birthday present. Thank you Brian, Kim and Erika!!
That made the difference! The rest of the day was a pretty happy day for Shannon. She was exhausted by the end of the day but she was also very happy. It turned out not to be such a big deal for us either for I had good friends and family that stepped in and really lightened the load. How grateful I am for good friends and family.
So as most of the blog entries go now that we are home, there is always some good news and also plenty of not so good news. Tuesday, Shannon had an appointment with Dr. SuchNeibar. We went up early and delivered the remaining cookies from the night before to nurses and therapists in the hospital that had been there for Shannon. We did find Dr. Maloney this time. She was so excited to show him how well she was doing and I think he was pleased about seeing her. We also got to see our favorite PICU nurse that related so well to Shannon. I guess not many people go back that have been saved in the PICU so they don’t ever get to see that fabulous work that they accomplished saving lives! We have tried to do that each time we go to the hospital for that reason. We even were able to catch Shannon’s favorite therapist that we have always missed in the past. So that was all great. Then it was time for the doctor appointment.
It was the last appointment of the day and the doctor was busy doing many other things. This is a teaching hospital so we spent some time with a resident before actually visiting with the doctor. We had left a message that we wanted to talk to Dr. SuchNeibar without Shannon there. She gets so upset when we talk about things that she is still struggling with because she doesn’t think she is. The doctor wanted Shannon’s hearing tested so we talked to the doc while her hearing was tested. (Her hearing is perfect!) We told her about the challenging mood swings, that she doesn’t see her deficits and the on- going depression. We told her also where we thought that Shannon was at in her progression. Those kinds of things never sit well with Shannon because she thinks she is fine. In the course of the appointment, Shannon learned that we were still giving her the adderall. She had been refusing to take it before we saw Dr. Giles 2 weeks ago. Dr. Giles told her she had to take it so we thought that Shannon was on board again for taking it. The adderall was in the daily pill containers and so we just gave her what was there. We assumed she remembered what the pill looked like so she knew she was getting it. But evidently not…when we reported the meds she was taking and included adderall, she was furious with us. The rest of the appointment was mostly about her being mad about something. The doctor again told her that rollerblading as well as driving was not in the picture for a while. That made her even madder. When she is upset she doesn’t hear anything else that is said. Even so, the doctor talked in great detail to Shannon about how critical it is that we protect her head right now and how important it was to take all the medications from the doctors. It was not a pleasant experience with the doctor as Shannon was so mad at her and she was being pretty ornery. We were at the hospital for over 4 ½ hours! But everything else physically is doing fine. We thought again that we had made it through another barrier but the first day home, she refused her adderall again. What can you do?? I won’t hold her down and force her to take it. So we are beginning to see the effects of no adderall; she is more tired and her other meds aren’t working as well.