We have now been "on our own" again for a whole week. I was originally worried about not having my mother here, as she ran our whole house for the 3+ months she was here, but as it turns out, it was quite invigorating to feel a bit of independence again! We still had help from many friends and neighbors, so I guess we were never truly on our own, but a majority of the time, I needed to be in charge with the kids and the household. It was really another step back to normalcy for our family. And, though I was exhausted by the end of the day, I was also energized by the increased responsibilities and the ability I had to actually do what I needed to do. :) I am also grateful mom called almost every day this week, because I very much missed her company.
Thanks to Deanne, Carl and Aaron Smith, Iris Graham, Belinda Jackson, Cami Sanders and all the wonderful friends and neighbors who helped us out this week!
Friday night we had our church campout and it was great! The kids had a blast and Tolan and I spent most of the time running around trying to keep Daven from falling in the river. (Picture this... Tolan with his bad knee and me with my bad eye and balance, running all over the uneven field chasing after a 2-year old. Must have been quite the funny sight!! :) It was a fun chance to renew friendships and enjoy the company of those we love and who have done so much to help and serve us.
Last night we enjoyed another great evening, this time with our close friends, the Rhoads and Gardaniers. Steve and Laura Gardanier were great hosts and we all basked in the stimulating conversations, like parenting techniques, exercise, and of course, arm hair (that's for you, Steve!!). The kids all survived, too, despite the close calls on two trampolines and a very high deck. :) It was truly wonderful to eat, visit and LAUGH with our friends. We left feeling happy and completely normal!
Today I returned to church, attending all of the meetings. Again, I was worried that it would wear me out, but I found the opposite to be true. I was so uplifted by the Spirit of Christ that was there, and by all the dear friends and neighbors who surround us. We continued to feel blessed and loved by the Lord. May each of you also feel His light in your lives! Much love to all!
Sunday, August 2, 2009
Friday, July 31, 2009
Taking a Sick Day
Our family has been battling a bit of illness on and off for the last several days. Two of the kids got sick on our vacation to Montana last week, and the rest of us hoped to avoid it...but I started feeling sick on Wednesday evening and was very sick all morning yesterday with horrible cramping in my stomach and generally feeling lousy. A sweet friend and neighbor, Kathy Wade, came to my rescue later in the morning and brought over some OTC medicine to help relieve an upset stomach. That provided some much needed relief and I was able to at least function the rest of the day.
Yesterday while I was under the weather, Lindi and Casen had a playdate at a friend's house and their mom, Shannon Cox, was an angel and picked up a load of laundry to do while the kids played. I still can't get over all the angels and love that surrounds us each day! Thank you!
Wednesday afternoon (before the sickness set in), the kids and I all piled in my Cami Sanders' van and went to Morgan to go swimming. It was one of the first real summer activities I have been able to do with the kids, so it was great! Everyone had a blast. A big thanks to the Sanders for letting us invade! :)
Last night one of my Young Women from church came over to visit and we stayed outside for more than 2 hours, just talking. I can't wait to start getting involved with the YW again. They are great girls and great examples to me! Luv ya, Brittnie!
Today I am feeling better, so we are planning to go camping tonight for a church activity. We are all counting on it being a great adventure with lots of fun! I am sure it will all work out!
Great weekend fun to all. And, as always, much love for the continued love and support!
Yesterday while I was under the weather, Lindi and Casen had a playdate at a friend's house and their mom, Shannon Cox, was an angel and picked up a load of laundry to do while the kids played. I still can't get over all the angels and love that surrounds us each day! Thank you!
Wednesday afternoon (before the sickness set in), the kids and I all piled in my Cami Sanders' van and went to Morgan to go swimming. It was one of the first real summer activities I have been able to do with the kids, so it was great! Everyone had a blast. A big thanks to the Sanders for letting us invade! :)
Last night one of my Young Women from church came over to visit and we stayed outside for more than 2 hours, just talking. I can't wait to start getting involved with the YW again. They are great girls and great examples to me! Luv ya, Brittnie!
Today I am feeling better, so we are planning to go camping tonight for a church activity. We are all counting on it being a great adventure with lots of fun! I am sure it will all work out!
Great weekend fun to all. And, as always, much love for the continued love and support!
Wednesday, July 29, 2009
Hot Head and Sleepy Head
After a long talk with my doctor, I think we figured out why I have not been sleeping. One medication I have been on has the side effect of extreme drowsiness. I have been taking this at night, every night since my surgery. Now they are slowing weaning me off the drug (halfing my dose every two weeks) which is likely causing my sleeplessness, as my body has become used to the sleep aid. Ahh, answers are good. So, now I am temporarily on OTC sleep aids (Nyquil, Benadryl, etc) to help my body sleep until my system can get regulated and off all my medications. So, for the last 2 nights, I have slept, not perfectly, but I have slept! Hooray. Sleep is a wonderful thing!
In talking to some friends, I realized that many people do not know about the titanium plate in my head, that I mentioned in the last post. During my surgeries a 3x2 inch portion of my skull had been removed, and in order to put that back in place, a titanium plate was placed on top of the skull and 4 titanium screws were screwed into my head on the corners of the plate to hold the skull in place. The plate and screws are a permanent part of my body now (though I should go "off" in metal detectors at the airport, I am told).
The strange thing is that when I stand out in the sun, my head literally starts to heat up, like the plate is conducting the heat! Crazy! I don't know if the opposite will be true in the winter, but I may soon get better at predicting the weather! :) The plate still feels very strange and foreign to me. Every time I brush my hair or attempt to lay on my right side, I am quickly reminded about it. If I tap on the plate, I can "hear" it, though Tolan assures me he cannot hear it, nor can he feel the difference between my skull and my plate. Boy, oh boy, I sure can!
So, add to my list of knicknames: Hot head and metal head, in addition to my already established names, fat head and air head. :) Have a fabulous day! Much love!
In talking to some friends, I realized that many people do not know about the titanium plate in my head, that I mentioned in the last post. During my surgeries a 3x2 inch portion of my skull had been removed, and in order to put that back in place, a titanium plate was placed on top of the skull and 4 titanium screws were screwed into my head on the corners of the plate to hold the skull in place. The plate and screws are a permanent part of my body now (though I should go "off" in metal detectors at the airport, I am told).
The strange thing is that when I stand out in the sun, my head literally starts to heat up, like the plate is conducting the heat! Crazy! I don't know if the opposite will be true in the winter, but I may soon get better at predicting the weather! :) The plate still feels very strange and foreign to me. Every time I brush my hair or attempt to lay on my right side, I am quickly reminded about it. If I tap on the plate, I can "hear" it, though Tolan assures me he cannot hear it, nor can he feel the difference between my skull and my plate. Boy, oh boy, I sure can!
So, add to my list of knicknames: Hot head and metal head, in addition to my already established names, fat head and air head. :) Have a fabulous day! Much love!
Monday, July 27, 2009
Vacation, Updates and Being a Day Maker
We had a wonderful little jaunt to Hebgen Lake, Montana for the weekend. Tolan's parents were there with us (I don't think we could have made it "on our own") and we had a great time relaxing, enjoying the lake and spending time together! Tolan and I were both careful not to overdo it, so I stayed off the boat completely, and he stayed on the boat, but not on the water. The kids loved the boat and being pulled in the tube, though they did have a scary episode when the tube got detached from the boat and Lindi got dumped out in the middle of the lake. Trenden jumped in the water to try and pull them back to the boat. Thank heavens they were all wearing life jackets! A nice break for our family in one of our favorite places on Earth!
My family on the dock at the lake.
The kids eating ice cream at Mooseberrys in West Yellowstone.
All of us sitting around the campfire outside the cabin. The kids loved roasting marshmallows and making smores!
Grandma Brown, Tolan and Daven on the dock, relaxing!
Grandpa Brown helping Trenden and Casen learn to use the sling to shoot rocks across the lake.
Progress: So a bit of good news today! I was looking in the mirror at my smile and I tried to move the right side of my mouth...and it worked! Not a lot, only a very small bit, but I was able to move the corner of my mouth about 1/4 of an inch! That is the first time I have been able to control it at all since before my 1st surgery! Hooray! Also, my eye is still not great, but if I stay indoors and keep it protected, I can read again! I re-read Harry Potter #7 at the cabin this weekend and was able to focus enough to see the words. There were times my sight was too blurry, so I covered up my right eye and used my left, but again this is progress. The first reading I have been able to do in months!
Setbacks: I could hardly call life normal if there weren't setbacks along with the progress. :) I have not been sleeping lately, and I can't quite figure out what is going on. For several days now, I have laid in bed all night without any rest at all, until the very early (4-5am) morning hours when I finally drift off. In the hospital, my doctors recommended that I see a neurologist for my restless limbs and sleeping issues, and I think now that I will have no choice. So, I called my doctor today to see if I can get a recommendation for a neurologist and some sleeping aids to get me through until I can have an appointment. I really believe my lack of sleep is slowing my recovery process. My body is so exhausted, yet I cannot get the rest I need (at night or in the day...just can't go to sleep at all right now). So, if we can get this taken care of, things will be much better (and I will be less grouchy with my kids and husband).
Neutral: So this could be progress or a setback...depending on how you look at it! When trying to fall asleep last night, I laid on my right side and was able to get comfy after the initial pain of putting pressure on my scars and titanium plate in my head. However, after about 1/2 hour, I had terrible pressure and pain in my head, so I had to quickly change positions. The docs say I will get used to the plate in my head, but it still feels so foreign to me, hard to imagine I will ever get used to it. Still, I did rest on my right side for a few minutes...progress??!!
I spent over an hour on the phone with the insurance company this morning, going through stacks of bills. (Everyone can relate to that, I am sure!) It was a frustrating process, but I dealt with some very friendly people, and that made a huge difference. In the end, a manager actually said she would take all my paperwork and put together a spreadsheet with the insurance info on it, so I would know exactly which bills to pay and for how much. Wow! What a nice little blessing for me right now. No more mass confusion with the bills. A friendly, considerate employee made all the difference. Shelly at EBMS was a "day maker" for me today. Rather than making it more difficult for me, she made my day with her attitude and helpfulness!
So, the take away for the day: It doesn't matter what you do, you can always be of service and make someone's day brighter! So, be a day maker for someone today!
My family on the dock at the lake.
The kids eating ice cream at Mooseberrys in West Yellowstone.
All of us sitting around the campfire outside the cabin. The kids loved roasting marshmallows and making smores!
Grandma Brown, Tolan and Daven on the dock, relaxing!
Grandpa Brown helping Trenden and Casen learn to use the sling to shoot rocks across the lake.
Progress: So a bit of good news today! I was looking in the mirror at my smile and I tried to move the right side of my mouth...and it worked! Not a lot, only a very small bit, but I was able to move the corner of my mouth about 1/4 of an inch! That is the first time I have been able to control it at all since before my 1st surgery! Hooray! Also, my eye is still not great, but if I stay indoors and keep it protected, I can read again! I re-read Harry Potter #7 at the cabin this weekend and was able to focus enough to see the words. There were times my sight was too blurry, so I covered up my right eye and used my left, but again this is progress. The first reading I have been able to do in months!
Setbacks: I could hardly call life normal if there weren't setbacks along with the progress. :) I have not been sleeping lately, and I can't quite figure out what is going on. For several days now, I have laid in bed all night without any rest at all, until the very early (4-5am) morning hours when I finally drift off. In the hospital, my doctors recommended that I see a neurologist for my restless limbs and sleeping issues, and I think now that I will have no choice. So, I called my doctor today to see if I can get a recommendation for a neurologist and some sleeping aids to get me through until I can have an appointment. I really believe my lack of sleep is slowing my recovery process. My body is so exhausted, yet I cannot get the rest I need (at night or in the day...just can't go to sleep at all right now). So, if we can get this taken care of, things will be much better (and I will be less grouchy with my kids and husband).
Neutral: So this could be progress or a setback...depending on how you look at it! When trying to fall asleep last night, I laid on my right side and was able to get comfy after the initial pain of putting pressure on my scars and titanium plate in my head. However, after about 1/2 hour, I had terrible pressure and pain in my head, so I had to quickly change positions. The docs say I will get used to the plate in my head, but it still feels so foreign to me, hard to imagine I will ever get used to it. Still, I did rest on my right side for a few minutes...progress??!!
I spent over an hour on the phone with the insurance company this morning, going through stacks of bills. (Everyone can relate to that, I am sure!) It was a frustrating process, but I dealt with some very friendly people, and that made a huge difference. In the end, a manager actually said she would take all my paperwork and put together a spreadsheet with the insurance info on it, so I would know exactly which bills to pay and for how much. Wow! What a nice little blessing for me right now. No more mass confusion with the bills. A friendly, considerate employee made all the difference. Shelly at EBMS was a "day maker" for me today. Rather than making it more difficult for me, she made my day with her attitude and helpfulness!
So, the take away for the day: It doesn't matter what you do, you can always be of service and make someone's day brighter! So, be a day maker for someone today!
Thursday, July 23, 2009
A Mother's Love, Updates and Healthcare Contest
Last night my mom officially "moved out" of our home. She has been living with us since April 13, just 3 days after I was diagnosed with a brain tumor. When she could, she would go home on the weekends to her house in Orem to recover from running the household and taking care of my kids. Then, every Sunday evening she returned and started all over again. During my hospital stay, she took her weekends "off" and spent them at the hospital with me. For 3 1/2 months she has taken care of everything in our home and shielded me from anything that would push me too hard, wear me out too much or cause me pain. My mother's love and selflessness has always amazed me, but never more than when she came to our rescue over and over again during this family crisis. I love you, Mom!
I don't know how I could ever repay what she has done, but we did try to do a little something for her before she left. The kids and I decorated the house while she was at the store, so we could surprise her. (You should have seen me attempt to blow up balloons! I am sure that was a sight...I ended up spitting all over the place and turned the job over to Lindi and Trenden! Too funny!) We put decorative giant flowers all over the walls, made a sign and had neighbors, family and friends sign cards for her. Still, nothing could be enough to express our love and thanks! We will miss you!
My mom with my kids. We love you, Grandma!
Mom, Daven and I on our last day together at my house.
One of Mom's "days off" with me at the hospital. She never ceases to amaze me!
Tolan went to the physical therapist this morning for his 1-week post-op from knee surgery. He found out that the recovery from torn cartilage (vs a torn miniscus which was the original diagnosis) is much longer. Instead of 2-6 weeks, he is looking at about 12 weeks before he is back to "normal". He was told to ride a stationary bike everyday to help with the recovery, but he should expect to be sore for some time. He also found out that his knee problems will never "go away" or get better, all the fixes are only temporary. The doc said if he takes really good care of his knee, it may last him up to 20 years, but at some point in time, sooner or later, he will have to have a knee replacement. Hmm, let's just hope it is later rather than sooner! For now, he is bruised and stil swollen, but doing pretty well.
Today our little family is going with Tolan's parents to Hebgen Lake, Montana, one of our favorite spots in the world. This will be our first vacation of the summer, (even though we were supposed to have gone to California and Hawaii already) so we are looking forward to the weekend get away! Something "normal" and fun for all of us! So, no posts for a few days.
While I am away, keep adding up the figures for your best guess for the Cost of Healthcare in America Contest! I posted this on July 9, so find the post and give us your best guess for the total cost of my brain tumor diagnosis and removal process! The person who comes the closest gets a fabulous prize. (So far I have a $25 gift card to IKEA for the winner, but I will try to find more fun items, too.) I still don't know the answer, as the bills keep coming, so we will keep the "contest" open for several more weeks, until we are fairly sure we have an accurate accounting. Much more fun than stewing over bills!
Happy 24th of July (Utah's pioneer "birthday") and have a great weekend. Thanks to Anna and Carrie for bringing dinner and the wonderful chat. Love to all, especially MOM (Grandma Orgill), my family and my Savior.
I don't know how I could ever repay what she has done, but we did try to do a little something for her before she left. The kids and I decorated the house while she was at the store, so we could surprise her. (You should have seen me attempt to blow up balloons! I am sure that was a sight...I ended up spitting all over the place and turned the job over to Lindi and Trenden! Too funny!) We put decorative giant flowers all over the walls, made a sign and had neighbors, family and friends sign cards for her. Still, nothing could be enough to express our love and thanks! We will miss you!
My mom with my kids. We love you, Grandma!
Mom, Daven and I on our last day together at my house.
One of Mom's "days off" with me at the hospital. She never ceases to amaze me!
Tolan went to the physical therapist this morning for his 1-week post-op from knee surgery. He found out that the recovery from torn cartilage (vs a torn miniscus which was the original diagnosis) is much longer. Instead of 2-6 weeks, he is looking at about 12 weeks before he is back to "normal". He was told to ride a stationary bike everyday to help with the recovery, but he should expect to be sore for some time. He also found out that his knee problems will never "go away" or get better, all the fixes are only temporary. The doc said if he takes really good care of his knee, it may last him up to 20 years, but at some point in time, sooner or later, he will have to have a knee replacement. Hmm, let's just hope it is later rather than sooner! For now, he is bruised and stil swollen, but doing pretty well.
Today our little family is going with Tolan's parents to Hebgen Lake, Montana, one of our favorite spots in the world. This will be our first vacation of the summer, (even though we were supposed to have gone to California and Hawaii already) so we are looking forward to the weekend get away! Something "normal" and fun for all of us! So, no posts for a few days.
While I am away, keep adding up the figures for your best guess for the Cost of Healthcare in America Contest! I posted this on July 9, so find the post and give us your best guess for the total cost of my brain tumor diagnosis and removal process! The person who comes the closest gets a fabulous prize. (So far I have a $25 gift card to IKEA for the winner, but I will try to find more fun items, too.) I still don't know the answer, as the bills keep coming, so we will keep the "contest" open for several more weeks, until we are fairly sure we have an accurate accounting. Much more fun than stewing over bills!
Happy 24th of July (Utah's pioneer "birthday") and have a great weekend. Thanks to Anna and Carrie for bringing dinner and the wonderful chat. Love to all, especially MOM (Grandma Orgill), my family and my Savior.
Wednesday, July 22, 2009
Doctor's Update and Kids Growing Up
Yesterday was one of my most active days yet, which felt wonderful, but had me completely hammered by the end of the day. In the morning I went to the viewing for Tom Dee, a great philanthropist and wonderful man. I was grateful to have the opportunity to meet up with many of my dear friends at the viewing. Joey Hansen, my former boss and mentor, saw me in the parking lot and that started the round of reunions. I visited with Tim Dee (Tom's son) who is one of the kindest, most humble, amazing men I have ever known. I also saw old friends from the McKay-Dee Foundation Board and my cherished friend, Noellee Shaw. I still cannot get over how much my emotions take over whenever I see my friends and family members. Everything and everyone means more now. Every experience is elevated for me...like seeing things through the eyes of a child, all of life is new and wonderful.
Yesterday afternoon I had another follow-up doctor's visit in Salt Lake. Today my "chauffer" was our good friend, Holly Bailey. She is such a joy to be with and I thoroughly enjoyed our car visit. :) Tolan's knee is doing better (though he keeps overdoing it, too!), so he drove to work, left early and met me at the doctor's office. Dr. Shelton saw me in the hall and immediately exclaimed, "Jodi! You look a million times better than the last time I saw you!" This was the start of another good appointment. Dr. Shelton said my hearing has improved a bit and if it continues to improve, I may qualify for a hearing aid, to help me hear out of my right ear again!
Dr. Shelton also said that what my ear is going through now is normal, as my body adjusts with the changing conditions of my ear. I go from feeling plugged to hearing an echo in my ear (really annoying) to feeling like I am listening through a seashell all in a given day. Disconcerting as it may be, he said it is normal and will eventually settle down.
He also told us that my balance issues are not just the result of my bad eye, but also my bad ear, as the inner ear helps control balance. I knew this, but hadn't thought about it, just assuming my problems were because I couldn't see. So, the good news is, in time, my body will learn to compensate and the left ear will take over control of my balance. But, for now, I still have to learn how to deal with my ear/eye/balance issues on my own, until my body can adjust.
Dr. Shelton said the facial nerves repair themselves from the bottom up (meaning the bottom of the face). This is why my mouth has improved so much, but my eye and forehead have seen no improvement. They will be the last to get better. Good info to have.
At the office we also ran into Dr. Orlandi, who performed the surgery to seal my ehustation tube. He also mentioned how much better I looked than in the hospital, which is a good thing, since I looked half dead by the end of my 34 day stay! It was a good report and it helped brighten my spirits. I still have daily things to deal with, but so far, all my doctors are sure things will continue to get better! Plus, Tolan and I had some wonderful "alone time" in the car on the ride home. I am so grateful for him and his support and it was great just to sit and visit together!
Yesterday I also got to visit on the phone with my 2nd mom and dear friend, Carol Liptrot. She is always a "pick me up" and helps me get through my trials. In the evening I visited with some family members, Martin Merx (Tolan's cousin) and Celia Brown (Tolan's aunt) and her family. I love these impromptu gatherings and they remind me how important family is!
My little Casen, the 4-year old, also had a surprise for me. He begged me to walk over to the neighbor's house and watch him jump on the tramp. So, I went over and was shocked to see him do a back flip on the trampoline!! WOW! And, my little Daven learned how to climb out of his crib by himself! Trenden earned an advancement in Cub Scouts and Lindi sewed (by herself) a project for Grandma Orgill. Clearly my kids are growing up right before my eyes...I am grateful I am here to see it!
Thanks again for all the prayers and positive vibes after my hard day earlier this week. Much love and thanks to Belinda...again! You are an angel, saint and dear friend.
Tonight my mom leaves for Orem, then will travel back to Hawaii in the coming days. Trying not to think about it yet... can't explain how much she will be missed.
We continue to be appreciative of all the help for me, Tolan and the family. We are all getting better and learning to adjust. Love to all.
Yesterday afternoon I had another follow-up doctor's visit in Salt Lake. Today my "chauffer" was our good friend, Holly Bailey. She is such a joy to be with and I thoroughly enjoyed our car visit. :) Tolan's knee is doing better (though he keeps overdoing it, too!), so he drove to work, left early and met me at the doctor's office. Dr. Shelton saw me in the hall and immediately exclaimed, "Jodi! You look a million times better than the last time I saw you!" This was the start of another good appointment. Dr. Shelton said my hearing has improved a bit and if it continues to improve, I may qualify for a hearing aid, to help me hear out of my right ear again!
Dr. Shelton also said that what my ear is going through now is normal, as my body adjusts with the changing conditions of my ear. I go from feeling plugged to hearing an echo in my ear (really annoying) to feeling like I am listening through a seashell all in a given day. Disconcerting as it may be, he said it is normal and will eventually settle down.
He also told us that my balance issues are not just the result of my bad eye, but also my bad ear, as the inner ear helps control balance. I knew this, but hadn't thought about it, just assuming my problems were because I couldn't see. So, the good news is, in time, my body will learn to compensate and the left ear will take over control of my balance. But, for now, I still have to learn how to deal with my ear/eye/balance issues on my own, until my body can adjust.
Dr. Shelton said the facial nerves repair themselves from the bottom up (meaning the bottom of the face). This is why my mouth has improved so much, but my eye and forehead have seen no improvement. They will be the last to get better. Good info to have.
At the office we also ran into Dr. Orlandi, who performed the surgery to seal my ehustation tube. He also mentioned how much better I looked than in the hospital, which is a good thing, since I looked half dead by the end of my 34 day stay! It was a good report and it helped brighten my spirits. I still have daily things to deal with, but so far, all my doctors are sure things will continue to get better! Plus, Tolan and I had some wonderful "alone time" in the car on the ride home. I am so grateful for him and his support and it was great just to sit and visit together!
Yesterday I also got to visit on the phone with my 2nd mom and dear friend, Carol Liptrot. She is always a "pick me up" and helps me get through my trials. In the evening I visited with some family members, Martin Merx (Tolan's cousin) and Celia Brown (Tolan's aunt) and her family. I love these impromptu gatherings and they remind me how important family is!
My little Casen, the 4-year old, also had a surprise for me. He begged me to walk over to the neighbor's house and watch him jump on the tramp. So, I went over and was shocked to see him do a back flip on the trampoline!! WOW! And, my little Daven learned how to climb out of his crib by himself! Trenden earned an advancement in Cub Scouts and Lindi sewed (by herself) a project for Grandma Orgill. Clearly my kids are growing up right before my eyes...I am grateful I am here to see it!
Thanks again for all the prayers and positive vibes after my hard day earlier this week. Much love and thanks to Belinda...again! You are an angel, saint and dear friend.
Tonight my mom leaves for Orem, then will travel back to Hawaii in the coming days. Trying not to think about it yet... can't explain how much she will be missed.
We continue to be appreciative of all the help for me, Tolan and the family. We are all getting better and learning to adjust. Love to all.
Monday, July 20, 2009
I Am A Work in Progress
Today my blog title is one I "lifted" from a friend's blog, http://jasonslifeisgood.blogspot.com/. It is very fitting for me to use today and I hope he doesn't mind the plagiarism. I call Jason a friend, though I've never met him, only read of his trials and challenges on his blog. We have some things in common, but this man has endured much more than I ever have, and despite his difficult days, he pushes on.
Yesterday and today have been a bit difficult for me and the title of the post sums up the reasons why. Every day I know that I am blessed to have been part of many miracles, but like every one else, I still struggle with daily challenges. Right now, most of my challenges are related to the tumor and/or the surgery and all the side effects. At times I feel like I cannot be justified in having a bad day, knowing full well that my life is a blessing because I am still here. But, Jason summed it up when he said "I am a work in progress", helping me realize that my life is still not perfect, even if I have experienced a miracle.
I know this is hard for some people to hear. They would prefer to hear my standard "I am doing better and making progress every day" report. And so, this is what I often give. And, on most days I do have that attitude myself. However, my whole life is in a state of change and this is challenging for me. My home, routines, schedules and abilties are all being changed and challenged. My physical impairments, though improving, still cause me daily problems.
I honestly cannot see about 50% of the time because of my "bad" eye. The slightest bit of wind or air in my eye and it is painful, blurry and goopy for hours. My ear is in a constant "plugged" state and causes me to miss out on many parts of the conversations going on around me; it feels like my head is in a cloud and I am missing what goes on all around me. I still get headaches every day and they usually get worse as the day progresses. For the last 2 days, I have woken up with headaches, which is a bad sign for the rest of the day. My paralysis is improving but still causing problems with my mouth and skin. As some of you know, I also have PLMD, Periodic limb movement disorder (essentially Restless legs syndrome only with all my limbs, not just my legs). This is also a neurologic disorder that we were all hoping would be connected to the tumor, and therefore gone with the surgery, but no such luck. So, I don't sleep well because of my crazy limbs. Without sleep, all of life seems harder. On most days, I can handle any one of these inconviences, but at times, when they all kick in at once, it can be a challenge for me to deal with.
When I get discouraged because of these challenges, I have to remember that I am still here, a huge blessing considering I was on my deathbed six weeks ago. I guess what I am saying with all this rambling is that I must remember that my life and my physical abilities are all still a "Work in Progress", even though miracles have already happened. I need to be patient with myself, and ask that you be patient with me, as I continue to struggle with all the nuances that are now part of my life. Not every day will be perfect, but it is normal to cry or get discouraged, as long as we all keep plugging along, realizing tomorrow will be another day to try again.
Yesterday and today have been a bit difficult for me and the title of the post sums up the reasons why. Every day I know that I am blessed to have been part of many miracles, but like every one else, I still struggle with daily challenges. Right now, most of my challenges are related to the tumor and/or the surgery and all the side effects. At times I feel like I cannot be justified in having a bad day, knowing full well that my life is a blessing because I am still here. But, Jason summed it up when he said "I am a work in progress", helping me realize that my life is still not perfect, even if I have experienced a miracle.
I know this is hard for some people to hear. They would prefer to hear my standard "I am doing better and making progress every day" report. And so, this is what I often give. And, on most days I do have that attitude myself. However, my whole life is in a state of change and this is challenging for me. My home, routines, schedules and abilties are all being changed and challenged. My physical impairments, though improving, still cause me daily problems.
I honestly cannot see about 50% of the time because of my "bad" eye. The slightest bit of wind or air in my eye and it is painful, blurry and goopy for hours. My ear is in a constant "plugged" state and causes me to miss out on many parts of the conversations going on around me; it feels like my head is in a cloud and I am missing what goes on all around me. I still get headaches every day and they usually get worse as the day progresses. For the last 2 days, I have woken up with headaches, which is a bad sign for the rest of the day. My paralysis is improving but still causing problems with my mouth and skin. As some of you know, I also have PLMD, Periodic limb movement disorder (essentially Restless legs syndrome only with all my limbs, not just my legs). This is also a neurologic disorder that we were all hoping would be connected to the tumor, and therefore gone with the surgery, but no such luck. So, I don't sleep well because of my crazy limbs. Without sleep, all of life seems harder. On most days, I can handle any one of these inconviences, but at times, when they all kick in at once, it can be a challenge for me to deal with.
When I get discouraged because of these challenges, I have to remember that I am still here, a huge blessing considering I was on my deathbed six weeks ago. I guess what I am saying with all this rambling is that I must remember that my life and my physical abilities are all still a "Work in Progress", even though miracles have already happened. I need to be patient with myself, and ask that you be patient with me, as I continue to struggle with all the nuances that are now part of my life. Not every day will be perfect, but it is normal to cry or get discouraged, as long as we all keep plugging along, realizing tomorrow will be another day to try again.
Friday, July 17, 2009
Public Outings, Progess Updates & No Regrets
As promised, I am posting a few pics of Tolan and his recovery process. We are all grateful that his recovery is going so well. This afternoon he came back home and will finish out his recovery here. He is still iced and elevated and has much more movement in his knee today. Good sign! He is getting tired of laying around, but sure did enjoy the quiet time at his parent's house! That is all gone now that he is home!
My mom leaves in just a few days, so we are trying to make the most of these last days, while not overdoing it and wearing me out. Today we were very brave and had a big "public outing". We went to the Ogden Farmers Market. Personally, I love these types of events, where the community comes together and it feels like the whole town is there and interacting with each other. I had the wonderful opportunity to meet up with some very dear friends, Amy Wicks and Craig Bielik, while we were there. These "reunions" are so good for me. I can't express how much more my relationships mean to me now. My good friend Jodi Carlson told me months ago that this experience would change every relationship I have and she was right. How can I not love you all more, now that you have prayed for me, helped my family and kept us going? You are all cherished and loved more than ever before!
I continue to make progress each day. My eye is still having issues, I have good days and bad. I still wake up with it sealed shut every morning and the implant has not yet dropped into place. The wind is especially bad for my eye, and I have to "take cover" quickly if the weather turns on me, but it is getting slowly better. My facial paralysis is improving, I am regaining some tone in my face, which is a good sign! My hearing is also a little better. I can hear some noises out of my right ear, only about 15% of what I hear out of my left, but still, it is something! My skin is still "struggling" without the proper signals to regulate oil production, but it's really not too bad overall. My biggest challenge is that I am starting to feel more normal, so I tend to do more than I should because I think I feel OK. This is honestly a real struggle for me. And, when I do too much, I end up worse, with lots of pressure in my head, headaches and I am forced to stop. It turns out that movies aren't good either. I've tried twice now, and both times came out far worse than when I entered. Someday I will figure out a good balance.
I am being weaned off my last medication from my hospital stay. I am on Keppra, an anti-seizure medication that is mandatory after brain surgery, because the body can be very susceptible to seizures after they open up your head and play around inside. :) The medication has many side effects, so I am anxious to get off (I will slowly decrease the meds until I am completely off in about another month). My side effects have mainly been the coordination of my hands. I can hardly write (typing is much easier) because I cannot form the letters when I write. I also found out that I can't apply nail polish either, apparently that takes more coordination than I thought. So, I will be glad to get this functioning back again. :)
Yesterday my neighbor Kim and I were talking and she brought up something that I have thought about a lot recently. She has been out of town for a while and felt badly that they haven't been around to help me. But, I have realized that life is too short and precious to spend time feeling guilty about such things. We all do the best we can do, we have good intentions, yet we all still fall short. And, that's OK! In fact, it is part of God's plan, that's why we have a Savior! So, please do not feel guilty or waste time thinking about all you didn't get done today or any day. Instead, thank God each night for what you did accomplish, who you were able to touch and all the family and loved ones who surround you. Carpe Diem and No Regrets!
My mom leaves in just a few days, so we are trying to make the most of these last days, while not overdoing it and wearing me out. Today we were very brave and had a big "public outing". We went to the Ogden Farmers Market. Personally, I love these types of events, where the community comes together and it feels like the whole town is there and interacting with each other. I had the wonderful opportunity to meet up with some very dear friends, Amy Wicks and Craig Bielik, while we were there. These "reunions" are so good for me. I can't express how much more my relationships mean to me now. My good friend Jodi Carlson told me months ago that this experience would change every relationship I have and she was right. How can I not love you all more, now that you have prayed for me, helped my family and kept us going? You are all cherished and loved more than ever before!
I continue to make progress each day. My eye is still having issues, I have good days and bad. I still wake up with it sealed shut every morning and the implant has not yet dropped into place. The wind is especially bad for my eye, and I have to "take cover" quickly if the weather turns on me, but it is getting slowly better. My facial paralysis is improving, I am regaining some tone in my face, which is a good sign! My hearing is also a little better. I can hear some noises out of my right ear, only about 15% of what I hear out of my left, but still, it is something! My skin is still "struggling" without the proper signals to regulate oil production, but it's really not too bad overall. My biggest challenge is that I am starting to feel more normal, so I tend to do more than I should because I think I feel OK. This is honestly a real struggle for me. And, when I do too much, I end up worse, with lots of pressure in my head, headaches and I am forced to stop. It turns out that movies aren't good either. I've tried twice now, and both times came out far worse than when I entered. Someday I will figure out a good balance.
I am being weaned off my last medication from my hospital stay. I am on Keppra, an anti-seizure medication that is mandatory after brain surgery, because the body can be very susceptible to seizures after they open up your head and play around inside. :) The medication has many side effects, so I am anxious to get off (I will slowly decrease the meds until I am completely off in about another month). My side effects have mainly been the coordination of my hands. I can hardly write (typing is much easier) because I cannot form the letters when I write. I also found out that I can't apply nail polish either, apparently that takes more coordination than I thought. So, I will be glad to get this functioning back again. :)
Yesterday my neighbor Kim and I were talking and she brought up something that I have thought about a lot recently. She has been out of town for a while and felt badly that they haven't been around to help me. But, I have realized that life is too short and precious to spend time feeling guilty about such things. We all do the best we can do, we have good intentions, yet we all still fall short. And, that's OK! In fact, it is part of God's plan, that's why we have a Savior! So, please do not feel guilty or waste time thinking about all you didn't get done today or any day. Instead, thank God each night for what you did accomplish, who you were able to touch and all the family and loved ones who surround you. Carpe Diem and No Regrets!
Prayers of Thanksgiving, Sympathy and Love
There are so many thoughts going through my mind right now, but I will try not to let all of them filter onto the blog so this doesn't end up being too long. A few updates:
* Tolan is doing well with his recovery. I got to see him today and we took lunch over to him. He was grateful for the yummy Maddox meal. :) His knee is quite swollen, but he is being faithful with keeping it elevated and iced. They changed the bandages this morning and it was very bloody (a bit gross, I heard) and it is still bleeding, but the bleeding has slowed. The "ice" machine is pretty neat. It looks like a beverage cooler, but it has a two-way tube that allows the warm water to flow out of the knee wrap and back into the cooler, and the cold, ice water to flow into the wrap. Pretty fancy. We are going back to visit Tolan this evening and I will get some pics of him to post this weekend. I thought he was pretty coherent after the surgery yesterday, but I guess he wasn't as awake as I thought, since he doesn't remember even talking to me on the phone! :) Thanks again for all the prayers and love.
* We are trying to do "normal" things every day and fun things with the family so we can all feel like we have had a summer (even though I missed all of spring and much of summer). So, we continue to picnic (with friends and family -- see pics!), go for drives, play outside and go on short walks. With my sister in town, my other family members came for a visit and we set up our waterslide and let the kids play...so fun I think this re-integration into life is good for me, but it is still hard to get it just right every day. We had a nice time with my sister, Kristi, in town from Hawaii. We don't see each other very often and being separated during such family crises can be hard. I have now had the chance to see all my siblings except my brother Michael. Hopefully I can give him a big hug sometime in the coming months (preferably in Hawaii!!). More props to my mom, who continues to be amazing at our home. I walked in the living room to find she and Daven had created a giant fort out of chairs and blankets. Daven was inside squealing with delight and playing with his Grandma. Simply amazing!
Grandma Orgill and Daven's fort in the living room!
Daven inside his fort (with his "dino" and blanket)!!
Kristi, Mom and I during Kristi's visit here from Hawaii. (This is my most "normal" smile yet! Getting less crooked every day!)
Kristi, Christa and I in front of my house. Christa is a forever friend that we have known since our earliest days in Virginia!
Picnic in the mountains with Kristi, Mom, Tolan and Russ Miller (neighborhood friend).
Two more important things I wanted to share:
* Last night, Tom Dee, (Thomas D. Dee II) passed away. For those of you who know him, you will understand why I am saddened by this event. The Dee family has a long history in Northern Utah (ie, the Dee Hospital and McKay-Dee Hospital) and Tom and his family are some of the most truly generous, kind, and wonderful people I have ever met. His son Tim is someone I have learned so much from and consider a cherished friend. My sympathies and love to all the Dee family. I hope some day to become like they are. They have touched so many lives through their generosity and philanthropy in Northern Utah. Mr. Dee, I will miss you.
* Tolan's uncle, Bill Merx, is in the hospital again. He is having internal bleeding that the docs are having a hard time controlling. Because of previous heart problems, there are limitations on what they can do for him and what medications he can take. Please join us in prayer for Bill and his family. Multiple hospital stays can be very discouraging... pray for positive vibes, good solutions and no more bleeding! Much love and faith to Bill who is enduring this continued trial.
Love to all of you. Thanks for caring, sharing, loving and praying!
* Tolan is doing well with his recovery. I got to see him today and we took lunch over to him. He was grateful for the yummy Maddox meal. :) His knee is quite swollen, but he is being faithful with keeping it elevated and iced. They changed the bandages this morning and it was very bloody (a bit gross, I heard) and it is still bleeding, but the bleeding has slowed. The "ice" machine is pretty neat. It looks like a beverage cooler, but it has a two-way tube that allows the warm water to flow out of the knee wrap and back into the cooler, and the cold, ice water to flow into the wrap. Pretty fancy. We are going back to visit Tolan this evening and I will get some pics of him to post this weekend. I thought he was pretty coherent after the surgery yesterday, but I guess he wasn't as awake as I thought, since he doesn't remember even talking to me on the phone! :) Thanks again for all the prayers and love.
* We are trying to do "normal" things every day and fun things with the family so we can all feel like we have had a summer (even though I missed all of spring and much of summer). So, we continue to picnic (with friends and family -- see pics!), go for drives, play outside and go on short walks. With my sister in town, my other family members came for a visit and we set up our waterslide and let the kids play...so fun I think this re-integration into life is good for me, but it is still hard to get it just right every day. We had a nice time with my sister, Kristi, in town from Hawaii. We don't see each other very often and being separated during such family crises can be hard. I have now had the chance to see all my siblings except my brother Michael. Hopefully I can give him a big hug sometime in the coming months (preferably in Hawaii!!). More props to my mom, who continues to be amazing at our home. I walked in the living room to find she and Daven had created a giant fort out of chairs and blankets. Daven was inside squealing with delight and playing with his Grandma. Simply amazing!
Grandma Orgill and Daven's fort in the living room!
Daven inside his fort (with his "dino" and blanket)!!
Kristi, Mom and I during Kristi's visit here from Hawaii. (This is my most "normal" smile yet! Getting less crooked every day!)
Kristi, Christa and I in front of my house. Christa is a forever friend that we have known since our earliest days in Virginia!
Picnic in the mountains with Kristi, Mom, Tolan and Russ Miller (neighborhood friend).
Two more important things I wanted to share:
* Last night, Tom Dee, (Thomas D. Dee II) passed away. For those of you who know him, you will understand why I am saddened by this event. The Dee family has a long history in Northern Utah (ie, the Dee Hospital and McKay-Dee Hospital) and Tom and his family are some of the most truly generous, kind, and wonderful people I have ever met. His son Tim is someone I have learned so much from and consider a cherished friend. My sympathies and love to all the Dee family. I hope some day to become like they are. They have touched so many lives through their generosity and philanthropy in Northern Utah. Mr. Dee, I will miss you.
* Tolan's uncle, Bill Merx, is in the hospital again. He is having internal bleeding that the docs are having a hard time controlling. Because of previous heart problems, there are limitations on what they can do for him and what medications he can take. Please join us in prayer for Bill and his family. Multiple hospital stays can be very discouraging... pray for positive vibes, good solutions and no more bleeding! Much love and faith to Bill who is enduring this continued trial.
Love to all of you. Thanks for caring, sharing, loving and praying!
Thursday, July 16, 2009
Successful Surgery
Quick update to say thanks for all the prayers for Tolan! He had surgery this morning for what we thought was a torn miniscus in his right knee. It turns out, it was torn cartilage, severe enough that it was "catching" on his bones every time he walked up and down the stairs, exercised, etc. The good news is they were able to cut out the bad sections and "smooth" out the rest, so after his recovery period, he should be just fine.
He was a little groggy after surgery, but amazingly coherent. He is even better now, resting peacefully at his parents' house, with his leg propped up on 4 pillows as he reclines on the couch!
Thanks again for all the prayers and well wishes. We are so dependent on Tolan right now, we are grateful that his surgery went well and anticipate the same for his recovery. Love to all!!
He was a little groggy after surgery, but amazingly coherent. He is even better now, resting peacefully at his parents' house, with his leg propped up on 4 pillows as he reclines on the couch!
Thanks again for all the prayers and well wishes. We are so dependent on Tolan right now, we are grateful that his surgery went well and anticipate the same for his recovery. Love to all!!
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