If you are unable to attend the open house to wish Shannon a "Happy Birthday", please feel free to send her a note through the blog or facebook. It hopefully will be a day that will bring lots of happiness into her life.
We have had several people ask how Annika is doing. Thank you for caring. She is doing well. She tolerated the pain well, she is eating well even though she is missing 3 teeth, and healing nicely. We will soon start the process for another bridge.
No, there is still no word from the insurance company. They tell us we should know something by Monday. We are hoping that the fight will be over and not just the beginning of another appeal.
Fast Sunday is coming up. Anyone who would like to join us by including Shannon in their fast would be awesome. I think we will be focusing on the things that are going to be so needed for her to go to school. Those areas include; a major reduction in her cognitive fatigue, her physical endurance, her balance, a reduction in impulsivity, and emotional stability. Shannon is such a goal oriented, determined young woman. This without a doubt is the hardest thing she has ever dealt with and may be the hardest in her lifetime. She can get frustrated and discouraged but she still continues to amaze me. With her birthday coming, it is just one more reminder of how blessed we are to still have her with us. Thank you all again for your faith and prayers.
Pheobe
May decade
May through the years
Friday, July 30, 2010
Thursday, July 29, 2010
Birthday Time
We wanted to give a quick update and also extend an invitation to a birthday celebration/open house that we are having on Shannon's birthday this coming Monday, August 2nd. This is Shannon's 17th Birthday--one that almost three months ago we weren't sure we would see. We have wanted to do something that would allow us to say a personal "Thank You" to the wonderful people who have supported us with their faith, prayers and encouragement. The open house will be an informal affair at our home and will last from 6-9pm on Monday August 2nd. We know it is Family Home Evening night but hope that the time will not interfere with plans you may have for your families. So if you can, stop by and wish Shannon a Happy Birthday!
This week has been a really good week. Shannon is making much progress. Her stamina and endurance are a lot better and her abilities continue to expand. For the most part she has been upbeat and has maintained the positive attitude that Pheobe mentioned in her last post. On Tuesday we went to see Dr. Walker, the neurosurgeon that performed the initial surgery and then the bone flap replacement surgery. He was really pleased with how well Shannon is doing. She had hoped that he would give her the "go-ahead" for rollerblading but suggested to her that she continue to work on some things before she takes that step. Although very disappointed, she still gave him a big hug as the appointment came to a close. He has truly been one of God's miracles in our lives over the past 12 weeks. Yesterday morning, Shannon had the opportunity to attend the Provo Temple with a group of Young Women from the ward. It was great to see her doing something she enjoyed so much before her accident.
One of the things that Shannon has a difficult time understanding is why people think she is so amazing. When we go to church or to some activity, so many people want to come up and talk to her. Little children who have been praying for her for weeks want to come and meet her, some for the first time. It is really touching to see. Shannon doesn't see what the big deal is--why people continue to be so interested in her and her progress. It makes me realize that the most heroic acts are those that are born of just doing what you can in the circumstances you are in. We rarely go off seeking for opportunities to do heroic things. We are faced with challenges and we do our best to slog through, despite our weaknesses and our fears. And we never do it alone. We have people all around us to reach out and serve, support and sustain us. We continue to be the recipients of so many acts of kindness. Thank you so much for the meals, the weeding, the lawn care, the visits, the phone calls, the concern and the faith and prayers. We are eternally grateful to you all for the blessing you are in our lives and the strength you give us to keep plodding along on our journey. And we are especially grateful for the joy and happiness you bring into Shannon's life through your thoughtfulness and your concern.
Udell
This week has been a really good week. Shannon is making much progress. Her stamina and endurance are a lot better and her abilities continue to expand. For the most part she has been upbeat and has maintained the positive attitude that Pheobe mentioned in her last post. On Tuesday we went to see Dr. Walker, the neurosurgeon that performed the initial surgery and then the bone flap replacement surgery. He was really pleased with how well Shannon is doing. She had hoped that he would give her the "go-ahead" for rollerblading but suggested to her that she continue to work on some things before she takes that step. Although very disappointed, she still gave him a big hug as the appointment came to a close. He has truly been one of God's miracles in our lives over the past 12 weeks. Yesterday morning, Shannon had the opportunity to attend the Provo Temple with a group of Young Women from the ward. It was great to see her doing something she enjoyed so much before her accident.
One of the things that Shannon has a difficult time understanding is why people think she is so amazing. When we go to church or to some activity, so many people want to come up and talk to her. Little children who have been praying for her for weeks want to come and meet her, some for the first time. It is really touching to see. Shannon doesn't see what the big deal is--why people continue to be so interested in her and her progress. It makes me realize that the most heroic acts are those that are born of just doing what you can in the circumstances you are in. We rarely go off seeking for opportunities to do heroic things. We are faced with challenges and we do our best to slog through, despite our weaknesses and our fears. And we never do it alone. We have people all around us to reach out and serve, support and sustain us. We continue to be the recipients of so many acts of kindness. Thank you so much for the meals, the weeding, the lawn care, the visits, the phone calls, the concern and the faith and prayers. We are eternally grateful to you all for the blessing you are in our lives and the strength you give us to keep plodding along on our journey. And we are especially grateful for the joy and happiness you bring into Shannon's life through your thoughtfulness and your concern.
Udell
Monday, July 26, 2010
Tender Mercies
We have had such a great day that I had to take time to write in the blog tonight. My heart is filled with such gratitude for a loving Father in Heaven. We may be seeing a light at the end of the tunnel.
Yesterday, Sunday, Shannon attended Tonya's Sunday School class where one of her favorite people was teaching. He used Shannon as an example and told her things she needs to be doing--I guess anyway. I wasn't in the room but reports are that with great love, he helped Shannon understand how important it was to have a good attitude. I am sure there was much more said, but that seemed to be the essence. Later that evening that same wonderful man gave her another priesthood blessing assisted by her Dad. The blessing was filled with great love for Shannon and also spoke of the help that surrounds her from both sides of the veil. It was a beautiful blessing.
The effects of that teacher and the blessing....well, Shannon woke this morning at 5 am unable to sleep. She finally came in to our room about 5:30 am to snuggle. We ended up talking about important eternal things and the love that we share. It was very tender. At 6, she wanted breakfast, came downstairs and got her own breakfast! After Udell had asked her a couple of times if she wanted to go for a walk to get some physical therapy in, she finally agreed! She wanted us both to go so this morning at 7 am we were out walking the neighborhood. After about 17 minutes, we stopped in at her grandmother's and got her out of bed just to say good morning. We rested there about 20-25 minutes. Then we started walking again. We probably walked another 30-35 minutes. And that wasn't enough for her. She headed to the basement and got on the treadmill, did some balance exercises, and did a few free weights!!! Two hours of a physical workout!
We assumed that it was because she was proving to us that she was at a level 9 in the TBI scale that we use. At that level, she should be able to sustain 2 hours of activity without getting tired. Well, she was tired today, but she did it.
But not only that, Shannon did incredible in both her speech and OT therapies today. She worked hard and just kept herself going even though she was tired.
And the icing on the cake....she was pretty much pleasant the entire day!! At our extended family activity tonight she told her aunt that she had learned things at church that had helped her change her attitude. It was obvious today that something had changed.
It has been an amazing day and I know that it was because Father in Heaven heard all of our prayers and just made things work out. I am sure He knows our limits, He allows us to be stretched beyond what we think are our limits maybe to show us we can do more than we think we can.
I also have to add tonight once again that there are so many people around us that listen to the Spirit and heed what they are prompted to do. Over and over and over, someone will call right at the right moment and will make all the difference in the world to Shannon's moods. We are so grateful for the love of so many. It is so hard to imagine! And we are forever grateful to all of you who continue to make a difference in our lives. Thank you. Let's pray that we will have another day like today and that they will just continue to improve more and more.
Pheobe
Yesterday, Sunday, Shannon attended Tonya's Sunday School class where one of her favorite people was teaching. He used Shannon as an example and told her things she needs to be doing--I guess anyway. I wasn't in the room but reports are that with great love, he helped Shannon understand how important it was to have a good attitude. I am sure there was much more said, but that seemed to be the essence. Later that evening that same wonderful man gave her another priesthood blessing assisted by her Dad. The blessing was filled with great love for Shannon and also spoke of the help that surrounds her from both sides of the veil. It was a beautiful blessing.
The effects of that teacher and the blessing....well, Shannon woke this morning at 5 am unable to sleep. She finally came in to our room about 5:30 am to snuggle. We ended up talking about important eternal things and the love that we share. It was very tender. At 6, she wanted breakfast, came downstairs and got her own breakfast! After Udell had asked her a couple of times if she wanted to go for a walk to get some physical therapy in, she finally agreed! She wanted us both to go so this morning at 7 am we were out walking the neighborhood. After about 17 minutes, we stopped in at her grandmother's and got her out of bed just to say good morning. We rested there about 20-25 minutes. Then we started walking again. We probably walked another 30-35 minutes. And that wasn't enough for her. She headed to the basement and got on the treadmill, did some balance exercises, and did a few free weights!!! Two hours of a physical workout!
We assumed that it was because she was proving to us that she was at a level 9 in the TBI scale that we use. At that level, she should be able to sustain 2 hours of activity without getting tired. Well, she was tired today, but she did it.
But not only that, Shannon did incredible in both her speech and OT therapies today. She worked hard and just kept herself going even though she was tired.
And the icing on the cake....she was pretty much pleasant the entire day!! At our extended family activity tonight she told her aunt that she had learned things at church that had helped her change her attitude. It was obvious today that something had changed.
It has been an amazing day and I know that it was because Father in Heaven heard all of our prayers and just made things work out. I am sure He knows our limits, He allows us to be stretched beyond what we think are our limits maybe to show us we can do more than we think we can.
I also have to add tonight once again that there are so many people around us that listen to the Spirit and heed what they are prompted to do. Over and over and over, someone will call right at the right moment and will make all the difference in the world to Shannon's moods. We are so grateful for the love of so many. It is so hard to imagine! And we are forever grateful to all of you who continue to make a difference in our lives. Thank you. Let's pray that we will have another day like today and that they will just continue to improve more and more.
Pheobe
Thursday, July 22, 2010
Another Doc appt
Today brought a doctor appointment that at least Udell and I were anxiously waiting for. Today we saw the Pediatric Psychiatrist. She is the one that deals with the anxiety and depression meds. We NEEDED a change. The anxieties that Shannon has dealt with, have really diminished to next to nothing. But the depression has increased being manifested in many ways but especially through anger and frustration. Shannon's moods can change on a dime! She is able to stay focused enough when with friends or most company, she is able to be happy and in control. She will make it well known that she hates her hair and Primary Childrens Hospital and most of the doctors and nurses. Her anger is evident when she tells anyone about what she can't do, such as rollerblading and driving. When we went to see the doctor today, she was upset about most any subject that was talked about. I am always impressed at how professionals that work with these kinds of situations can stay so "unruffled" even after multiple verbal attacks. To Shannon, she is still the Shannon she remembers--everything that she can remember doing before, she believes she still can do. However, the things that are really hard, she just won't do saying she can, but won't prove it either. I think we would all feel the same way...the last time you remember, you were doing all these things just fine and now people are telling you that you can't do them. It just doesn't make sense. No wonder that she is so angry. And since it is her parents, therapists, doctors and nurses trying to get her to do the things she thinks she can still do, and won't let her do the things she loves like rollerblading, the anger is directed at all of us. It is very typical of TBI patients, to not accept/recognize their deficits for quite a while. So the changes to the meds were made but as with all mental health types of medications, it will take a while before we see the best results.
Because having her phone and computer was so important to Shannon and because she was willing to use them appropriately, we decided that would be a good thing, even if she did face natural consequences from saying things in a way that might be offensive. She has restrictions on them and so she has lost the privilege of using the phone for a couple of days. She also has seen some of the natural consequences although I am not sure the significance of those consequences is evident to her at this time. But she has been down right mean to a couple of people on the phone and they weren't very happy about it. But one good thing is that she doesn't get mad about her phone and her computer anymore because she has them at her discretion.
It is really a struggle as Shannon's parents. We are definitely caught in the middle. We have doctors and therapists telling us how cautious we must be and the things we shouldn't allow Shannon to do yet. And then we have some friends that see her who think because she looks fine and seems to do fine, that she shouldn't have the limitations. And we witness both sides...a good example of that is Shannon's balance. It definitely does better some days than others. Some days we can see it change from bad to good just depending on what's going on. There are some things that although Shannon could possible do them, there is a risk being taken not knowing if she has the ability to really catch herself if she started to fall. Today I was with Shannon walking through Gateway, waiting for Udell to have my phone fixed. She was walking so unbalanced that I told her that if a cop stopped her because he thought she might have been drinking, I was just going to keep on walking! She didn't think that was too funny--especially since she thought she was walking straight as an arrow!
The doctors are so concerned for many reasons. First, once you have had a TBI, you are 3 times more likely to get another one and the recovery results are significantly less than the first time. Once you have had a 2nd TBI, you are 10 times more likely to have another brain injury. Those aren't very good odds. The brain is still healing and will be for a very long time. The fluids around the brain have not totally settled, leaving the brain more mobile and easier to injure. The doctors have reason to be concerned. Yet, we need Shannon to work towards independence as much as possible. We have given her a lot more freedom around the house but are still very cautious when we go out.
Yesterday, I got an insight into some of the challenges yet ahead. The therapist asked Shannon to read from her ACT prep book and answer some of the questions. Her purpose in this was not to say that Shannon didn't know the material but rather to see what her attention level was and the amount of endurance she has in cognitive learning. Shannon started to read and read just 3 or 4 minutes and then slammed the book down, saying she already knew all that stuff so why should she have to be doing what they were doing. We talked and talked with her to no avail so we shifted gears and suggested we read a novel; again the purpose was to see about endurance and attention. With several stops and many cues to keep going, Shannon refused to go further after about 7-8 minutes. The therapist asked her questions about the story and Shannon could only answer a couple of them. She was angry and very upset. The therapist pointed out to me that every time they have done something that is very hard for Shannon, that she can't stick with it for very long. It is just too hard still. It will still come, but it looks like it is going to be slower than we had thought. It breaks our hearts because we know that Shannon knew all these things and that she used to be able to do them. The brain just takes a much longer time to heal than a broken arm or even a broken femur!
We have been told that the middle part of the recovery from a TBI was the worst. That was hard to imagine when we were sitting in the PICU watching the numbers and praying that they wouldn't go too high. That was certainly stressful, but I have to say that the middle part, is much more stressful.
On Friday last week, we got word from Regence Blue Cross that they were not going to cover any more therapies as inpatient. Basically they were saying that they felt that Shannon was capable of doing all her therapies on an outpatient basis. That would mean traveling to Salt Lake every day, doing therapies there and then traveling home. Shannon hasn't made the ride to Salt Lake yet without falling asleep in the car and being very tired when she gets there. She has such a long way to go and all the medical doctors are saying that the therapies are medically necessary. So we immediately started the appeals process as well as contacted the Utah Insurance Commission is hopes that they could help us. The critical issue here is that the window of best opportunity for recovery is now and it needs to be the intense therapy the doctors have prescribed. They have expediated the appeal and hence, it would probably be about 14 days where normally it takes 4-6 weeks. I can't understand Regence thinking...maybe it is just because they don't want to pay because they certainly aren't looking at the best interest of the patient. (Outpatient therapy is only covered up to $1500 a year.) It's just crazy....and very stressful to have to deal with all of that when we need to be focusing on Shannon and her recovery. Can I just say..."stupid insurance!"
Gratefully, we continue to have such great support from ward members, friends and family. True, there are not as many around as in the beginning, but those most dear to us have never left our side nor have they stopped praying for us. Those prayers are what sustain us the most. We know that one day we will be able to look back on this experience and recognize all that we have learned from it. We know that although Shannon can't imagine it now at this point, but she too, will one day look back and realize how much she gained from the experience. It's keeping that in mind and the eternal perspective that is difficult when the day to day challenges keep facing us. It helps us when we look back and remember all the miracles that have taken places and all the people that Shannon has influenced along the way. There's that most important word AGAIN...
remember!! Just got to do it...it will keep us going!
Pheobe
Because having her phone and computer was so important to Shannon and because she was willing to use them appropriately, we decided that would be a good thing, even if she did face natural consequences from saying things in a way that might be offensive. She has restrictions on them and so she has lost the privilege of using the phone for a couple of days. She also has seen some of the natural consequences although I am not sure the significance of those consequences is evident to her at this time. But she has been down right mean to a couple of people on the phone and they weren't very happy about it. But one good thing is that she doesn't get mad about her phone and her computer anymore because she has them at her discretion.
It is really a struggle as Shannon's parents. We are definitely caught in the middle. We have doctors and therapists telling us how cautious we must be and the things we shouldn't allow Shannon to do yet. And then we have some friends that see her who think because she looks fine and seems to do fine, that she shouldn't have the limitations. And we witness both sides...a good example of that is Shannon's balance. It definitely does better some days than others. Some days we can see it change from bad to good just depending on what's going on. There are some things that although Shannon could possible do them, there is a risk being taken not knowing if she has the ability to really catch herself if she started to fall. Today I was with Shannon walking through Gateway, waiting for Udell to have my phone fixed. She was walking so unbalanced that I told her that if a cop stopped her because he thought she might have been drinking, I was just going to keep on walking! She didn't think that was too funny--especially since she thought she was walking straight as an arrow!
The doctors are so concerned for many reasons. First, once you have had a TBI, you are 3 times more likely to get another one and the recovery results are significantly less than the first time. Once you have had a 2nd TBI, you are 10 times more likely to have another brain injury. Those aren't very good odds. The brain is still healing and will be for a very long time. The fluids around the brain have not totally settled, leaving the brain more mobile and easier to injure. The doctors have reason to be concerned. Yet, we need Shannon to work towards independence as much as possible. We have given her a lot more freedom around the house but are still very cautious when we go out.
Yesterday, I got an insight into some of the challenges yet ahead. The therapist asked Shannon to read from her ACT prep book and answer some of the questions. Her purpose in this was not to say that Shannon didn't know the material but rather to see what her attention level was and the amount of endurance she has in cognitive learning. Shannon started to read and read just 3 or 4 minutes and then slammed the book down, saying she already knew all that stuff so why should she have to be doing what they were doing. We talked and talked with her to no avail so we shifted gears and suggested we read a novel; again the purpose was to see about endurance and attention. With several stops and many cues to keep going, Shannon refused to go further after about 7-8 minutes. The therapist asked her questions about the story and Shannon could only answer a couple of them. She was angry and very upset. The therapist pointed out to me that every time they have done something that is very hard for Shannon, that she can't stick with it for very long. It is just too hard still. It will still come, but it looks like it is going to be slower than we had thought. It breaks our hearts because we know that Shannon knew all these things and that she used to be able to do them. The brain just takes a much longer time to heal than a broken arm or even a broken femur!
We have been told that the middle part of the recovery from a TBI was the worst. That was hard to imagine when we were sitting in the PICU watching the numbers and praying that they wouldn't go too high. That was certainly stressful, but I have to say that the middle part, is much more stressful.
On Friday last week, we got word from Regence Blue Cross that they were not going to cover any more therapies as inpatient. Basically they were saying that they felt that Shannon was capable of doing all her therapies on an outpatient basis. That would mean traveling to Salt Lake every day, doing therapies there and then traveling home. Shannon hasn't made the ride to Salt Lake yet without falling asleep in the car and being very tired when she gets there. She has such a long way to go and all the medical doctors are saying that the therapies are medically necessary. So we immediately started the appeals process as well as contacted the Utah Insurance Commission is hopes that they could help us. The critical issue here is that the window of best opportunity for recovery is now and it needs to be the intense therapy the doctors have prescribed. They have expediated the appeal and hence, it would probably be about 14 days where normally it takes 4-6 weeks. I can't understand Regence thinking...maybe it is just because they don't want to pay because they certainly aren't looking at the best interest of the patient. (Outpatient therapy is only covered up to $1500 a year.) It's just crazy....and very stressful to have to deal with all of that when we need to be focusing on Shannon and her recovery. Can I just say..."stupid insurance!"
Gratefully, we continue to have such great support from ward members, friends and family. True, there are not as many around as in the beginning, but those most dear to us have never left our side nor have they stopped praying for us. Those prayers are what sustain us the most. We know that one day we will be able to look back on this experience and recognize all that we have learned from it. We know that although Shannon can't imagine it now at this point, but she too, will one day look back and realize how much she gained from the experience. It's keeping that in mind and the eternal perspective that is difficult when the day to day challenges keep facing us. It helps us when we look back and remember all the miracles that have taken places and all the people that Shannon has influenced along the way. There's that most important word AGAIN...
remember!! Just got to do it...it will keep us going!
Pheobe
Monday, July 19, 2010
Shannon #2
Dear readers, this is Shannon. I am supposed to update the blog on my own every once in a while now. So, that’s what I’m doing right now. First of all, I have a mullet- kind of. And it freaking rocks! But anyway, I tried to blow dry my hair today to get rid of the itch from my gel, but that did not work. At all. I think my head will just always itch. But ya, I also went to church today. First time back in my own ward… but they just had to welcome me back at the pulpit, to the entire ward! Wow, that’s not embarrassing at all! Anyway, I think I’m progressing even slower than before so prayers are always greatly appreciated.
Thursday, July 15, 2010
Good news and bad news
Yesterday was the first of a string of weekly doctor appointments. It started with the eye doctor. I don't know if we have posted how much Shannon repeatedly expressed her "hatred" of the hospital, most all the doctors and most all the nurses. It was a topic that there was lots of preserveration on. She swore she would never return to that hospital and if the doctors wanted to see her, they would have to come here. So we had quite a bit of concern how all these doctor appointments were going to go. We had told Shannon that the eye doctor was at the Moran Eye Clinic. But when we got 1/2 mile away from the hospital we clarified that it was the Moran Eye Clinic but it was on the 3rd floor of Primary Childrens Hospital. We explained that she was on the 2nd floor and we wouldn't go there. When we promised that to her, she was willing to go. We were smart enough however, to go in the south end of the hospital which is opposite of where she went in and out of. So we made it to the eye appointment.
The eye doctor was pleased with how her eyes were looking. The cornea in her right eye, he said looked fantastic! The left eye did not have any signs of abrasions left although it did show signs of dryness. So we are to continue with the drops and ointment 4 times a day and taping the left eye shut every night in order to keep it very moist for the time being. We are to return in a month....the week after we have completed the first round of doctor visits!
Afte the appointment Udell asked Shannon if she wanted to see if Dr. Maloney was in his office. His office is on the 3rd floor but towards the other end of the building. She actually said yes! He wasn't in his office so we left him and note and thought we were leaving. But Shannon said, let's see if Dr. Walker is in. His office is on the 1st floor. So we started in that direction and Udell casually said, "do you want to just check and see if Whitney is working today?" To our great surprise, she said yes so long as we promised not to put her in one of "those rooms" again! We gladly promised that--we don't want to go back there either! So we went to the second floor right across from her old room and she (fortunately) found that Whitney was working. She gave her a big hug and talked to her for a few minutes. Several other nurses and therapists that knew her said hi and told her how good she looked and were so glad she had stopped by. Then we checked on Dr. Walker and of course, he wasn't in his office either. So we headed for home.
The drive up to Salt Lake and back is exhausting for Shannon. She slept most of the way up there and most of the way back. We wondered how in the world the insurance company could ever think that she could commute and have effective therapies at this stage of the game! Yes, we still have to fight with them. Some say that it is going to always be a weekly deal. I wonder if they have a clue what kind of stress they are adding to the family because they won't follow the medical doctors instructions for therapy??
The next part of the day was part of the bad news. We had a case conference where all the therapists and clinic coordinator get together with us and review the past goals and set new goals. Because we had to talk about Shannon's deficits, she couldn't deal with it. It wasn't handled by the coordinator as well as it could have been for Shannon didn't really understand what the purpose was for. She got pretty upset and mad. She really has not yet come to the point where she can accept her deficits. She still thinks she should be able to go rollerblading and go for a drive in the car. The rollerblading is a real big challenge because she says she can rollerblade better than she can walk. It's hard to see her get so upset and yet, we see the wisdom in the doctor saying no rollerblading. We see it when she goes to get in the car and dives in head first instead of getting in as we all do. We see it when she is walking, bends over to pull up her sock and falls over. We see it when she gets so tired so easily and needs more sleep. We see it in her impulsivity when she jumps out of her chair so fast that it nearly tips her over. We see it demands that people come visit at a certain time on a certain day. We see it when she hugs people too much and for too long. We see it when she gets angry over someone not being here when she thinks they should be. We see it when she is continuously scratching everywhere, especially on her head. We see it when she makes inappropriate comments in mixed company. We see it as she tries to manipulate us and we see it when she lies to us. We see it when she refuses to eat. And it all comes for the TBI. These things are not Shannon. These are all part of the symptoms of a TBI that is in the recovery process. Not one doctor, nurse, therapist, not anyone that has worked with people with TBIs have ever given us a timeline. The answer is always, "I don't know, it is different for every person." So I think that this is all part of the lesson that we are to learn; patience. What did we say in the beginning?? Miraculous doesn't mean instanteously. We continue to see miracles along the way and they help to sustain us when we remember to rely on them. Now that Shan is at home, many of the readers of this blog have lost interest and that's ok because ultimately, the blog is for our own history. But for those that are still with us, as Shannon says, "don't stop praying for me cause I still need it!"
We are finding that just because you are in the middle of a trial doesn't make you exempt from more trials. We have had some interesting challenges while Shannon was in the hospital like the boiler going out, the AC not working and needing to buy a new unit, the siding on the house blowing off, etc. Today we had an added challenge that is much more difficult than any of those. We got a call around 3 pm today that Annika, our 28 year old daughter with Rett Syndrome had fallen and they were taken her to the emergency room. So far we have 4 stitches in her chin, 5 stitches on the outside of her lip and 5-6 stitches on the inside of her mouth, one tooth completely broken out and the other front top tooth is shot. Her jaw is broken although not displaced and she has a bunch of abrasions. They took a CT scan, xray of her elbow, chest and consulted with an oral surgeon. They had to sedate her for the stitches because it was impossible to numb her mouth because of her disabilities. They gave her antibiotics through an IV and have left the IV in because we are to go to the oral surgeon tomorrow at noon without her having eaten anything for 8 hours. So it sounds like the surgeon may very well do something about the jaw and/or the teeth tomorrow. So as if you haven't already prayed for our family enough, we are asking for more prayers again.
I think I will take an aspirin and go to bed.
Pheobe
The eye doctor was pleased with how her eyes were looking. The cornea in her right eye, he said looked fantastic! The left eye did not have any signs of abrasions left although it did show signs of dryness. So we are to continue with the drops and ointment 4 times a day and taping the left eye shut every night in order to keep it very moist for the time being. We are to return in a month....the week after we have completed the first round of doctor visits!
Afte the appointment Udell asked Shannon if she wanted to see if Dr. Maloney was in his office. His office is on the 3rd floor but towards the other end of the building. She actually said yes! He wasn't in his office so we left him and note and thought we were leaving. But Shannon said, let's see if Dr. Walker is in. His office is on the 1st floor. So we started in that direction and Udell casually said, "do you want to just check and see if Whitney is working today?" To our great surprise, she said yes so long as we promised not to put her in one of "those rooms" again! We gladly promised that--we don't want to go back there either! So we went to the second floor right across from her old room and she (fortunately) found that Whitney was working. She gave her a big hug and talked to her for a few minutes. Several other nurses and therapists that knew her said hi and told her how good she looked and were so glad she had stopped by. Then we checked on Dr. Walker and of course, he wasn't in his office either. So we headed for home.
The drive up to Salt Lake and back is exhausting for Shannon. She slept most of the way up there and most of the way back. We wondered how in the world the insurance company could ever think that she could commute and have effective therapies at this stage of the game! Yes, we still have to fight with them. Some say that it is going to always be a weekly deal. I wonder if they have a clue what kind of stress they are adding to the family because they won't follow the medical doctors instructions for therapy??
The next part of the day was part of the bad news. We had a case conference where all the therapists and clinic coordinator get together with us and review the past goals and set new goals. Because we had to talk about Shannon's deficits, she couldn't deal with it. It wasn't handled by the coordinator as well as it could have been for Shannon didn't really understand what the purpose was for. She got pretty upset and mad. She really has not yet come to the point where she can accept her deficits. She still thinks she should be able to go rollerblading and go for a drive in the car. The rollerblading is a real big challenge because she says she can rollerblade better than she can walk. It's hard to see her get so upset and yet, we see the wisdom in the doctor saying no rollerblading. We see it when she goes to get in the car and dives in head first instead of getting in as we all do. We see it when she is walking, bends over to pull up her sock and falls over. We see it when she gets so tired so easily and needs more sleep. We see it in her impulsivity when she jumps out of her chair so fast that it nearly tips her over. We see it demands that people come visit at a certain time on a certain day. We see it when she hugs people too much and for too long. We see it when she gets angry over someone not being here when she thinks they should be. We see it when she is continuously scratching everywhere, especially on her head. We see it when she makes inappropriate comments in mixed company. We see it as she tries to manipulate us and we see it when she lies to us. We see it when she refuses to eat. And it all comes for the TBI. These things are not Shannon. These are all part of the symptoms of a TBI that is in the recovery process. Not one doctor, nurse, therapist, not anyone that has worked with people with TBIs have ever given us a timeline. The answer is always, "I don't know, it is different for every person." So I think that this is all part of the lesson that we are to learn; patience. What did we say in the beginning?? Miraculous doesn't mean instanteously. We continue to see miracles along the way and they help to sustain us when we remember to rely on them. Now that Shan is at home, many of the readers of this blog have lost interest and that's ok because ultimately, the blog is for our own history. But for those that are still with us, as Shannon says, "don't stop praying for me cause I still need it!"
We are finding that just because you are in the middle of a trial doesn't make you exempt from more trials. We have had some interesting challenges while Shannon was in the hospital like the boiler going out, the AC not working and needing to buy a new unit, the siding on the house blowing off, etc. Today we had an added challenge that is much more difficult than any of those. We got a call around 3 pm today that Annika, our 28 year old daughter with Rett Syndrome had fallen and they were taken her to the emergency room. So far we have 4 stitches in her chin, 5 stitches on the outside of her lip and 5-6 stitches on the inside of her mouth, one tooth completely broken out and the other front top tooth is shot. Her jaw is broken although not displaced and she has a bunch of abrasions. They took a CT scan, xray of her elbow, chest and consulted with an oral surgeon. They had to sedate her for the stitches because it was impossible to numb her mouth because of her disabilities. They gave her antibiotics through an IV and have left the IV in because we are to go to the oral surgeon tomorrow at noon without her having eaten anything for 8 hours. So it sounds like the surgeon may very well do something about the jaw and/or the teeth tomorrow. So as if you haven't already prayed for our family enough, we are asking for more prayers again.
I think I will take an aspirin and go to bed.
Pheobe
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!!
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!!
Wednesday, July 7, 2010
Yet another miracle!
Well, there you have it folks! Shannon's first posting of her own. As part of her therapy this morning, she wanted to get on the blog to read your comments and the speech therapist told her she should post her own and practice keyboarding! And so she did. Short and sweet.
Yes, we are going to try and keep the blog going for a time. When we feel that Shannon is fully recovered, (which we believe she will be)then we will put the blog to bed! In the meantime, we just keep trying to find the time to write. It will be a great history for Shannon one day.
When we left the hospital one week ago today, the rehab doctor said, "Stay low and go slow". They told us not to give Shannon too much stimulation at any given time without starting low and going slow! They felt strongly that she was going to need some time to adjust to her surrounds and certainly to crowds. However, miracles still continue to happen with Shannon. Monday afternoon, she decided that she really wanted to go to the Extended Blackham Family 4th of July party. There is always a BIG crowd there with quite a number of children. We had decided previously not to take Shannon because of that. But she felt like she wanted to go. The party is in the backyard so we decided that Shan could sit in the family room and a few people at a time could come say hello to her; that way it shouldn't be too overwhelming. Well, I am sure you remember us talking about all the children that are praying for Shannon? Part of those children belong to this family. Repeatedly we had people telling us that their little 2 year old or 5 year old or many other ages are praying morning, noon and night for Shannon. This group of children was no exception and so when they heard that Shannon was in the family room, they all came rushing in. Shannon grinned ear to ear and called them all by name, held a nearly newborn baby, ask the kids relevant questions and answered their questions. She didn't get anxious or overly tired. She interacted with the children so that they could know that their prayers have been answered and that she is still in need of their prayers. I would get overly stimulated if I had that many kids coming at me at once! Shannon, because of her TBI was supposed but didn't! Miraculous!
In the last 2 days, I have had 2 more medical people, one doctor and one nurse, tell me that there is no way that she should be alive and even if she were, she shouldn't be able to do all the things she is doing. As awesome as the medical field is, the don't always realize the power of God!
Shannon's therapy this morning went very well. She walked all the way around our neighborhood block which is really quite a ways. She came back and went to Snoasis for a snow cone. Nice therapy, huh? :) But then later she worked hard with the Speech therapist and that was where she was able to work hard enough to post in her blog. She had company until dinner time and then she wanted to go to Young Womens! So I went to YW's with her. Everyone there was so excited to see her and she couldn't have been more excited to see them! She had lots of hugs to give and stories to tell! We had less anxieties today. I think it helped to keep her so busy!
We continue our fight with the insurance company. We are hoping that Friday is not our last day of therapy paid by the insurance. It is pretty scary for we know she still has need of several weeks of therapy! Shannon still has a hard time walking and needs someone close by all the time to assist as needed. She has issues with her social skills in that she can be too sarcastic at times and pretty demanding most of the time! :)
Last, I will tell you that she was one excited girl when her boss from Snoasis, where she worked before, came by with an icee with cream, her paycheck and $20 worth of Snoasis coupons! She has told everyone she sees about how much money she made and how wonderful her boss was to bring her the coupons! And her favorite phrase of the day...of the week, or maybe even the month....COOL BEANS MAN!! She is one funny girl.
Thanks for all your friendship and ongoing prayers. We still have a ways to go to bring Shannon back around to where she was!
Yes, we are going to try and keep the blog going for a time. When we feel that Shannon is fully recovered, (which we believe she will be)then we will put the blog to bed! In the meantime, we just keep trying to find the time to write. It will be a great history for Shannon one day.
When we left the hospital one week ago today, the rehab doctor said, "Stay low and go slow". They told us not to give Shannon too much stimulation at any given time without starting low and going slow! They felt strongly that she was going to need some time to adjust to her surrounds and certainly to crowds. However, miracles still continue to happen with Shannon. Monday afternoon, she decided that she really wanted to go to the Extended Blackham Family 4th of July party. There is always a BIG crowd there with quite a number of children. We had decided previously not to take Shannon because of that. But she felt like she wanted to go. The party is in the backyard so we decided that Shan could sit in the family room and a few people at a time could come say hello to her; that way it shouldn't be too overwhelming. Well, I am sure you remember us talking about all the children that are praying for Shannon? Part of those children belong to this family. Repeatedly we had people telling us that their little 2 year old or 5 year old or many other ages are praying morning, noon and night for Shannon. This group of children was no exception and so when they heard that Shannon was in the family room, they all came rushing in. Shannon grinned ear to ear and called them all by name, held a nearly newborn baby, ask the kids relevant questions and answered their questions. She didn't get anxious or overly tired. She interacted with the children so that they could know that their prayers have been answered and that she is still in need of their prayers. I would get overly stimulated if I had that many kids coming at me at once! Shannon, because of her TBI was supposed but didn't! Miraculous!
In the last 2 days, I have had 2 more medical people, one doctor and one nurse, tell me that there is no way that she should be alive and even if she were, she shouldn't be able to do all the things she is doing. As awesome as the medical field is, the don't always realize the power of God!
Shannon's therapy this morning went very well. She walked all the way around our neighborhood block which is really quite a ways. She came back and went to Snoasis for a snow cone. Nice therapy, huh? :) But then later she worked hard with the Speech therapist and that was where she was able to work hard enough to post in her blog. She had company until dinner time and then she wanted to go to Young Womens! So I went to YW's with her. Everyone there was so excited to see her and she couldn't have been more excited to see them! She had lots of hugs to give and stories to tell! We had less anxieties today. I think it helped to keep her so busy!
We continue our fight with the insurance company. We are hoping that Friday is not our last day of therapy paid by the insurance. It is pretty scary for we know she still has need of several weeks of therapy! Shannon still has a hard time walking and needs someone close by all the time to assist as needed. She has issues with her social skills in that she can be too sarcastic at times and pretty demanding most of the time! :)
Last, I will tell you that she was one excited girl when her boss from Snoasis, where she worked before, came by with an icee with cream, her paycheck and $20 worth of Snoasis coupons! She has told everyone she sees about how much money she made and how wonderful her boss was to bring her the coupons! And her favorite phrase of the day...of the week, or maybe even the month....COOL BEANS MAN!! She is one funny girl.
Thanks for all your friendship and ongoing prayers. We still have a ways to go to bring Shannon back around to where she was!
It's Shannon
hey guys it's actually shannon! I wanted to let you know that although i'm home, i still need those prayers! :) thanks :)
Monday, July 5, 2010
Hard things
Monday, July 5th
Certainly a different 4th of July weekend for us... Shannon is still struggling with the reality that all of this is not a nightmare. She focuses more on what she can't do and the fact that she dislikes Primary Childrens Hospital than what she needs to do to get better. One of the phases of brain injury patients is a period of time for anger. We were so pleased that in the hospital she hadn't seemed to have to deal with the anger. Dealing with so many that have gone through the "grieving process" I should have known that it is best for people to go through all the stages. There are two things that brighten her day always...visitors and Brian Regan. (Brian Regan is a comedian that we were introduced to recently and he has become a family favorite. Udell and Shannon will start in on one of his dialogues and laughter becomes an absolute!) How grateful we are that we were introduced to him, Kathie!
In our efforts to help Shannon through these tough times, Udell was talking to her about her Grandma who passed away a couple of years ago. Because of a family project, we ended up recording many quotes that belong to her. It was such a blessing to remember back to Grandma's strong testimony and love of the gospel. It was good to remember that she had suffered hard things. She died of leukemia even after several rounds of chemotherapy. We thought you might like to hear some of the ones that helped Shannon for a while that day.
"I hope my friends and family will be able to stand on my shoulders when they have to face hard things and know that we can do things that are hard."
"I know that after the trial of our faith come the blessings. If prayers don't seem to be answered,just wait patiently knowing that He loves you, hears you and will never leave you."
"I am grateful that I had the sense to not follow the whims of the day and choose false values. I think our children need to know that today."
"I always wanted my children to believe that I was deeply committed to the gospel, that they could always follow me--there was safety in that."
And the last one seem to be the most poignant for us:
"As Mom contemplated the treatments that she might undergo, (meaning the chemo) the pain and the suffering that that might cause, she indicated that she was willing to go through whatever it took if it would help any member of her family strengthen their faith and come closer to Christ."
We know that there are many people who have been blessed and have gained more faith because of what Shannon is going through. Knowing the depth of Shannon's love, devotion and compassion, I am sure that she agreed in our premortal life to go through this horrible experience so others' faith could grow. We are so grateful to have her as our daughter!
Pheobe
Certainly a different 4th of July weekend for us... Shannon is still struggling with the reality that all of this is not a nightmare. She focuses more on what she can't do and the fact that she dislikes Primary Childrens Hospital than what she needs to do to get better. One of the phases of brain injury patients is a period of time for anger. We were so pleased that in the hospital she hadn't seemed to have to deal with the anger. Dealing with so many that have gone through the "grieving process" I should have known that it is best for people to go through all the stages. There are two things that brighten her day always...visitors and Brian Regan. (Brian Regan is a comedian that we were introduced to recently and he has become a family favorite. Udell and Shannon will start in on one of his dialogues and laughter becomes an absolute!) How grateful we are that we were introduced to him, Kathie!
In our efforts to help Shannon through these tough times, Udell was talking to her about her Grandma who passed away a couple of years ago. Because of a family project, we ended up recording many quotes that belong to her. It was such a blessing to remember back to Grandma's strong testimony and love of the gospel. It was good to remember that she had suffered hard things. She died of leukemia even after several rounds of chemotherapy. We thought you might like to hear some of the ones that helped Shannon for a while that day.
"I hope my friends and family will be able to stand on my shoulders when they have to face hard things and know that we can do things that are hard."
"I know that after the trial of our faith come the blessings. If prayers don't seem to be answered,just wait patiently knowing that He loves you, hears you and will never leave you."
"I am grateful that I had the sense to not follow the whims of the day and choose false values. I think our children need to know that today."
"I always wanted my children to believe that I was deeply committed to the gospel, that they could always follow me--there was safety in that."
And the last one seem to be the most poignant for us:
"As Mom contemplated the treatments that she might undergo, (meaning the chemo) the pain and the suffering that that might cause, she indicated that she was willing to go through whatever it took if it would help any member of her family strengthen their faith and come closer to Christ."
We know that there are many people who have been blessed and have gained more faith because of what Shannon is going through. Knowing the depth of Shannon's love, devotion and compassion, I am sure that she agreed in our premortal life to go through this horrible experience so others' faith could grow. We are so grateful to have her as our daughter!
Pheobe
Saturday, July 3, 2010
First day of Home therapy
Friday was a full day. I think I mentioned that we got one week of therapy approved from the insurance company. They are working with them to change that but in the meantime we are pushing forward.
We met with the Clinical coordinator for nearly 2 hours, talking through the program and having Shannon be assessed again. Shan was really tired but she did fine for the assessment and verified again that therapy help is still needed. Less than an hour after she had left, the Speech therapist came. She worked with Shannon for almost an hour and 25 minutes. She was doing her assessment but at the same time challeging Shannon to do more. Shannon was totally exhausted by the time she finished. We thought she would get a 1/2 hour rest before the Occupational therapist came. But no, the therapist arrived early because it was easier to find our house than she had thought so they got started earlier. Shannon wasn't very good at what she needed to be working on probably because of her fatigue. She had a short rest after the therapist left before she had company. Company always cheers her up.
Shannon went to great lengthens to tell the therapists that she hated the hospital and was never going back there. (She forgets that her follow up appointments are all at the hospital.) She also told the therapists that she called her therapists at the hospital "physical terrorists" or "OT terrorists". One of the doctors told her to call them that....of course, it wasn't a rehab doc! We hope that one day and we are sure she will, Shannon will realize what a blessing the hospital and all of the staff there what a difference they made in her recovery.
Shannon continues to struggle through this hard adjustment stage. The reality that she is unable to do many of the things that she used to do, is really tough on her.
Our fast this week will be focused on Shannon being able to accept the things that she cannot change, to have courage for the things that she can change, and the ability to know the difference. We all continue to need the prayers of our family, friends, loved ones and all who have been affected by this sweet young woman who is struggling, trying to deal with an accident that has truly changed her entire life. We appreciate all of your prayers and thoughtfulness.
Pheobe
We met with the Clinical coordinator for nearly 2 hours, talking through the program and having Shannon be assessed again. Shan was really tired but she did fine for the assessment and verified again that therapy help is still needed. Less than an hour after she had left, the Speech therapist came. She worked with Shannon for almost an hour and 25 minutes. She was doing her assessment but at the same time challeging Shannon to do more. Shannon was totally exhausted by the time she finished. We thought she would get a 1/2 hour rest before the Occupational therapist came. But no, the therapist arrived early because it was easier to find our house than she had thought so they got started earlier. Shannon wasn't very good at what she needed to be working on probably because of her fatigue. She had a short rest after the therapist left before she had company. Company always cheers her up.
Shannon went to great lengthens to tell the therapists that she hated the hospital and was never going back there. (She forgets that her follow up appointments are all at the hospital.) She also told the therapists that she called her therapists at the hospital "physical terrorists" or "OT terrorists". One of the doctors told her to call them that....of course, it wasn't a rehab doc! We hope that one day and we are sure she will, Shannon will realize what a blessing the hospital and all of the staff there what a difference they made in her recovery.
Shannon continues to struggle through this hard adjustment stage. The reality that she is unable to do many of the things that she used to do, is really tough on her.
Our fast this week will be focused on Shannon being able to accept the things that she cannot change, to have courage for the things that she can change, and the ability to know the difference. We all continue to need the prayers of our family, friends, loved ones and all who have been affected by this sweet young woman who is struggling, trying to deal with an accident that has truly changed her entire life. We appreciate all of your prayers and thoughtfulness.
Pheobe
Thursday, July 1, 2010
The First full day at home
It's one of those days when you think back to the morning, and think it couldn't possibly be the same day. It seems so long ago since we started the day!
Reality hit home for Shannon this morning when she woke up. She had been hoping that when she slept in her own bed that she would wake up the next morning and the nightmare would be over. It wasn't over. It was a rough start to the day. We gathered as a little family, (since only 4 of us still live here) and had our morning scriptures. We sang a song which we don't normally do and then we read from the New Era, the message from President Monson to the youth. Somehow, listening to the words of a living prophet calms the soul. We were ready to start the day!
Udell took Shannon for a walk outside for a little physical therapy. Getting out was really good for her. Afterwards, she took a nice warm bath in her OWN TUB and she thought that was pretty great! She put gel in her hair to "spike" it and she thought that was kind of fun. When she got dressed, she picked out clothes that didn't look like PJ's! She even put on her "skinny" jeans that are now too big. That's hard to believe since she is such a tiny little thing anyway. She even put on earrings! She looked terrific!!!
Because of Shannon's impulsivity (she says and does things she really doesn't mean) and because it is so hard for her to see to text on her phone, we have limited the use of her cell phone to 15 minutes, 2 to 3 times a day with supervision. She types the text, we tell her if it sounds ok and tell her what she needs to correct so it is understandable. She sent 2 texts today that her impulsivity got away with her that I didn't get to correct but fortunately, they went to friends who really understand. So if you would like to send her a text, she will get them now but won't be able to carry on a conversation through texting for very long.
Shannon loves and needs visitors so we hope we haven't made it sound like she can't have visitors. Yes, please do come but please let us know when you want to come so we can have you come when she doesn't have other company, she isn't in therapy, nor is she taking a nap! She just turns into all smiles when someone comes to see her.
So after the 15 minutes with her cellphone, Shannon and I did some other therapy together. Much of her therapy is really quite fun. She did a mosaic design, wrote a letter and we played "Phase 10" for a while. She was extra pleased to see her Grandma Mc and a few other friends and neighbors today. It just seemed that there was so much packed into this day and yet, I didn't feel like I got anything done! (Well, I guess I did..I did what was most important and that was to be sure that Shannon had someone with her all the time.)
No, we did not have any professional therapists today. And of course, it is not as easy getting things set up as they kept promising us it would be. They felt very certain that our insurance company would approve "Rehab without Walls" to take over the intense therapy that Shannon still needs. Well, after waiting for several days, they got word back this morning that she was approved.....for ONE WEEK! And that week happens to have a holiday in it which means 4 days of therapy. The insurance company medical director felt like, after a week, that Shannon would be able to switch to out patient therapy, driving 2 hours each day for a 1 hour session 2 times a week for each therapy. There is no way that she has the stamina for that and she needs much more intense therapy than that still for a while. So it seems that we have more challenges ahead besides the TBI itself.
I, myself, enjoy hearing the perspective of my good husband when he writes the blog. I had also thought about the 7 weeks since the accident and the many miracles we have seen along the way. I appreciated the comment from Kathy that said God had blessed this family a million times! We certainly feel like His hand as been constantly involved throughout this process. We are at a new crossroad now and I asked Udell what he thought the Lord would have us do with the many offers of help from friends, family, neighbors, etc. It is always so much easier to be the "giver" than to be the "receiver". But with the millions of blessings we have received from Father in Heaven, we just want to do what He wants us to do. We wonder if there are other things that Shannon is supposed to still do in making a difference in other people's lives, are their other people she needs to touch, or lessons that we need to learn or maybe opportunities given to others. It is hard to know especially when the natural man just wants to retreat inside and try to handle things on his own. It has given me much to contemplate. My prayer is that the Lord will show His will to us that we might somehow be instruments in His hands. If, in His design, He might be to use Shannon to touch others, we want to help make that happen. I know she is willing and wants to do His will as well. Now the trick is to find out what His will is!!
Pheobe
Reality hit home for Shannon this morning when she woke up. She had been hoping that when she slept in her own bed that she would wake up the next morning and the nightmare would be over. It wasn't over. It was a rough start to the day. We gathered as a little family, (since only 4 of us still live here) and had our morning scriptures. We sang a song which we don't normally do and then we read from the New Era, the message from President Monson to the youth. Somehow, listening to the words of a living prophet calms the soul. We were ready to start the day!
Udell took Shannon for a walk outside for a little physical therapy. Getting out was really good for her. Afterwards, she took a nice warm bath in her OWN TUB and she thought that was pretty great! She put gel in her hair to "spike" it and she thought that was kind of fun. When she got dressed, she picked out clothes that didn't look like PJ's! She even put on her "skinny" jeans that are now too big. That's hard to believe since she is such a tiny little thing anyway. She even put on earrings! She looked terrific!!!
Because of Shannon's impulsivity (she says and does things she really doesn't mean) and because it is so hard for her to see to text on her phone, we have limited the use of her cell phone to 15 minutes, 2 to 3 times a day with supervision. She types the text, we tell her if it sounds ok and tell her what she needs to correct so it is understandable. She sent 2 texts today that her impulsivity got away with her that I didn't get to correct but fortunately, they went to friends who really understand. So if you would like to send her a text, she will get them now but won't be able to carry on a conversation through texting for very long.
Shannon loves and needs visitors so we hope we haven't made it sound like she can't have visitors. Yes, please do come but please let us know when you want to come so we can have you come when she doesn't have other company, she isn't in therapy, nor is she taking a nap! She just turns into all smiles when someone comes to see her.
So after the 15 minutes with her cellphone, Shannon and I did some other therapy together. Much of her therapy is really quite fun. She did a mosaic design, wrote a letter and we played "Phase 10" for a while. She was extra pleased to see her Grandma Mc and a few other friends and neighbors today. It just seemed that there was so much packed into this day and yet, I didn't feel like I got anything done! (Well, I guess I did..I did what was most important and that was to be sure that Shannon had someone with her all the time.)
No, we did not have any professional therapists today. And of course, it is not as easy getting things set up as they kept promising us it would be. They felt very certain that our insurance company would approve "Rehab without Walls" to take over the intense therapy that Shannon still needs. Well, after waiting for several days, they got word back this morning that she was approved.....for ONE WEEK! And that week happens to have a holiday in it which means 4 days of therapy. The insurance company medical director felt like, after a week, that Shannon would be able to switch to out patient therapy, driving 2 hours each day for a 1 hour session 2 times a week for each therapy. There is no way that she has the stamina for that and she needs much more intense therapy than that still for a while. So it seems that we have more challenges ahead besides the TBI itself.
I, myself, enjoy hearing the perspective of my good husband when he writes the blog. I had also thought about the 7 weeks since the accident and the many miracles we have seen along the way. I appreciated the comment from Kathy that said God had blessed this family a million times! We certainly feel like His hand as been constantly involved throughout this process. We are at a new crossroad now and I asked Udell what he thought the Lord would have us do with the many offers of help from friends, family, neighbors, etc. It is always so much easier to be the "giver" than to be the "receiver". But with the millions of blessings we have received from Father in Heaven, we just want to do what He wants us to do. We wonder if there are other things that Shannon is supposed to still do in making a difference in other people's lives, are their other people she needs to touch, or lessons that we need to learn or maybe opportunities given to others. It is hard to know especially when the natural man just wants to retreat inside and try to handle things on his own. It has given me much to contemplate. My prayer is that the Lord will show His will to us that we might somehow be instruments in His hands. If, in His design, He might be to use Shannon to touch others, we want to help make that happen. I know she is willing and wants to do His will as well. Now the trick is to find out what His will is!!
Pheobe
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