We had a great day today - we took Anthony to church for the first time, and then had a picnic lunch at the beach with Grandpa Kim, Grandma Lynda, Aunt Colby, Uncle Mike, and Cousin Lucas. I think this is the first photo of the three of us where I am not in a wheelchair or a hospital bed. Yeah for that!
Sunday, June 28, 2009
Tears
September 22
September 22nd is the last day of summer, and I WILL be walking before then. I have also committed to running a half marathon next year (November 2010) and anyone who is up for it can run with me! Thank God I am already healed!
Friday, June 26, 2009
One in a Million
Well today I spent a lovely 1.75 hours in a tube getting an MRI. After that I met with my neurosurgeon to go over the results. It was a long day at the hospital...
There are no parts of the tumor left, and there is no regrowth of the tumor - great news! There is a 15% chance that a tumor would regrow in the same spot, so I'll go in for regular MRIs to keep up on it. Based on the size of the tumor, it was probably growing for 5-10 years before it was caught. This is unusual for someone my age as most meningioma tumors occur in people in their 40s/50s.
Dr. Balousek said I have myelomalatia, a thinning of the spinal cord, just in the spot where the tumor was. The cord above and below the tumor looks great - he was very surprised by this (I of course am not because I know that Jesus is at work in my body!). He expected that the cord below the injury line would have shriveled up and died by now because of the lack of blood flow. The cord looks the same as when he left it there in surgery - it hasn't gotten any thinner, but it hasn't regenerated either. Please pray that my spinal cord will regenerate! He said the process could takes months or years if it ever happens, and he said he be surprised if anyone told me that I'd be out of this wheelchair one day. I'm a one in a million case he said, and no one has any idea what's going to happen with me.
So I didn't really feel positive or negative about the meeting today. It was basically exactly as I expected. It had to be this way so that when I start walking again it won't be because of medicine or man - it will be a miracle! I can't wait for my follow up appointment in six months when I walk in his door and shock the heck out of him!
There are no parts of the tumor left, and there is no regrowth of the tumor - great news! There is a 15% chance that a tumor would regrow in the same spot, so I'll go in for regular MRIs to keep up on it. Based on the size of the tumor, it was probably growing for 5-10 years before it was caught. This is unusual for someone my age as most meningioma tumors occur in people in their 40s/50s.
Dr. Balousek said I have myelomalatia, a thinning of the spinal cord, just in the spot where the tumor was. The cord above and below the tumor looks great - he was very surprised by this (I of course am not because I know that Jesus is at work in my body!). He expected that the cord below the injury line would have shriveled up and died by now because of the lack of blood flow. The cord looks the same as when he left it there in surgery - it hasn't gotten any thinner, but it hasn't regenerated either. Please pray that my spinal cord will regenerate! He said the process could takes months or years if it ever happens, and he said he be surprised if anyone told me that I'd be out of this wheelchair one day. I'm a one in a million case he said, and no one has any idea what's going to happen with me.
So I didn't really feel positive or negative about the meeting today. It was basically exactly as I expected. It had to be this way so that when I start walking again it won't be because of medicine or man - it will be a miracle! I can't wait for my follow up appointment in six months when I walk in his door and shock the heck out of him!
Airplane
Anthony loves spending time with his dad in the evenings. He is starting to talk like crazy, and it's so cute!
Progress at PT
Yesterday was a productive day at PT - they really worked me out, I was exhausted by the time the two hours was up.
I started out on the FES bike. They hook up these different wires to my legs that basically shock my muscles to get them to fire to pedal the bike. It's pretty cool as I'm sitting there watching my legs doing all this work, riding the bike, though I can't feel it at all. The stimulation can be anywhere from 0-100%, and once they got up to about 30% my legs just took off - the PT wasn't able to slow them down to the pace she wanted them to go, because my legs were ready to work! She said this is a good sign that my muscles are in good shape, and that the neuro connection is still there. Some people can get 100% stim and still never pedal because that connection is lost.
Next I went to the standing machine and did my cardio workout there. It was tougher than ususal because I'd just done the cardio on the bike, and already had the blood pumping through my legs. So I was having some blood pressure issues and had to take it easy there.
I finished the workout with time on the mat, where my instructor taught me how to get on all fours (hands and knees). Try doing that without the use of your legs - the things we never think about! When I was on all fours I would go into the cat position (arched back, stomach tucked in, tailbone tucked in). I do pretty well with my core because that has been coming back over the last several months, and yesterday I was able to tuck my tail under, which requires me to use my glutes. I could only hold it for 3 seconds or so, but that means that my glutes are coming back!
Overall it was an exciting day of PT and I was thrilled with my progress. When Jared picked me up I was so proud to show him how I could get up on all fours and tuck my tail - I'm like a five year old kid now!
I started out on the FES bike. They hook up these different wires to my legs that basically shock my muscles to get them to fire to pedal the bike. It's pretty cool as I'm sitting there watching my legs doing all this work, riding the bike, though I can't feel it at all. The stimulation can be anywhere from 0-100%, and once they got up to about 30% my legs just took off - the PT wasn't able to slow them down to the pace she wanted them to go, because my legs were ready to work! She said this is a good sign that my muscles are in good shape, and that the neuro connection is still there. Some people can get 100% stim and still never pedal because that connection is lost.
Next I went to the standing machine and did my cardio workout there. It was tougher than ususal because I'd just done the cardio on the bike, and already had the blood pumping through my legs. So I was having some blood pressure issues and had to take it easy there.
I finished the workout with time on the mat, where my instructor taught me how to get on all fours (hands and knees). Try doing that without the use of your legs - the things we never think about! When I was on all fours I would go into the cat position (arched back, stomach tucked in, tailbone tucked in). I do pretty well with my core because that has been coming back over the last several months, and yesterday I was able to tuck my tail under, which requires me to use my glutes. I could only hold it for 3 seconds or so, but that means that my glutes are coming back!
Overall it was an exciting day of PT and I was thrilled with my progress. When Jared picked me up I was so proud to show him how I could get up on all fours and tuck my tail - I'm like a five year old kid now!
Sunday, June 21, 2009
Father's Day
Friday, June 19, 2009
Beard Respect
Thursday, June 18, 2009
Friends
My best girlfriends from college all came to visit today; we haven't all been together since my wedding last year, so it was great to have the five of us in one place! Babies and all....there were four kids - Anthony, 3 months; Ella, 1 year; Sean, 1 year; and JT, 2 years. What a zoo! The girls brought lunch and worked hard to stick to my anti-inflammatory diet - so sweet!! It was so fun to see them all!
You can see in the pictures of the four kids how things got progressively worse. JT tried to comfort the babies, but Sean didn't like that idea at all.
Laura left the room for a few minutes and we were instructed to not let Sean play with the baby doll. So what did we do? We gave him the doll and took pictures for his dad to see!
Roma & Anthony
Wednesday, June 17, 2009
Sensation
So excited to share with you that I have had the return of some sensation in my legs! From about my knee to my hip I can feel deep touching now. I can't feel soft touching on the skin, but if you were to press hard on my legs I can feel it. Thank you, Jesus, my body is continuing to make progress!
Tuesday, June 16, 2009
Project Walk
Yesterday was my first day at Pushing Boundaries, a program that was based on the work done at Project Walk. There are less than 20 facilities like this in the country, and I am so fortunate to be near one!
Here is interesting information on recovery the first year after injury using this type of system.
http://www.projectwalk.org/program/firstyear.htm
My first day went great. I was up in a standing machine that works similar to an elipitical, no blood pressure problems, and able to get some cardio exercise for the first time in months. It felt so great! The evaluation went well and my trainer said I was strong and had a lot of potential because I have done so much already as far as transfers, strengthening, etc. I am excited to be able to participate in this type of a program and am looking forward to working with them over the next several months.
Here is interesting information on recovery the first year after injury using this type of system.
http://www.projectwalk.org/program/firstyear.htm
My first day went great. I was up in a standing machine that works similar to an elipitical, no blood pressure problems, and able to get some cardio exercise for the first time in months. It felt so great! The evaluation went well and my trainer said I was strong and had a lot of potential because I have done so much already as far as transfers, strengthening, etc. I am excited to be able to participate in this type of a program and am looking forward to working with them over the next several months.
Saturday, June 13, 2009
Friday, June 12, 2009
Christ the Healer
I started reading Christ the Healer by FF Bosworth, which is a fantastic book on what the Bible teaches about healing. I've always had faith and I've always known that Jesus would heal me, but this book is awesome. It's given me new revelations and understanding about healing. If you are in need of any sort of physical healing you have to read this book.
Quote of the Week
"When did our lives of tanning on the apartment roof get so complicated?"
Thanks to my college roommate and one of my best friends for this one....Laura and I met in the dorms our freshman year and she has been entertaining me ever since.
Thanks to my college roommate and one of my best friends for this one....Laura and I met in the dorms our freshman year and she has been entertaining me ever since.
Song of the Week
This week the song Praise You in This Storm by Casting Crowns has really been on my heart.
"Praise You In This Storm"
I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
As the thunder rolls I barely hear
Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You
But as the thunder rolls
I barely hear You whisper through the rain"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
"Praise You In This Storm"
I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining
As the thunder rolls I barely hear
Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm
I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You
But as the thunder rolls
I barely hear You whisper through the rain"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
What I have learned this week....
That I am still the same person I was before my tumor, and life can continue on. It's okay to have fun and to enjoy the things that I used to enjoy. I can still do anything that I want to do, just in a different way. One of my friends who visited this week reminded me of this. I am still the same person. Just shorter.
That I am in love with two men at one time. My son who fills each day with so much joy and so many smiles, and my husband who loves me more than anything. The moment Dr. Vossler came in and told me about the tumor I was okay. But when I looked at my husband is when it really became real. The look on his face in that moment was so much worse than the news the doctor had given me. Jared lost it, and it makes me cry every time I think about that moment. The thought that he might lose me was the worst thing in the world to him - oh how I am thankful for this man.
That I have the most wonderful friends and family surrounding me. My friends are willing to do anything and everything for me. They don't treat me any differently because I'm in a wheelchair, and they aren't embarrased to be out in public with me, which is something I certainly worried about in the beginning. To them I am the same person. My friends water my flowers because they know that I love them. They watch Anthony so I don't have to worry about him while I'm being selfish and focusing on myself in physical therapy. They call and email and send cards. They drive me around when I can't drive myself. They laugh with me and cry with me. How did I get so lucky to have these people in my life?
That I have to keep hoping. Hope and faith will guide me until I start walking again. It feels like it's been an eternity since my surgery, but it's only been about three months. It's still so early in the grand scheme of things. Hope, hope, hope.
That worship music can change my entire day, and keep me in a positive attitude no matter what is going on that day.
That God answers my prayers quickly and he knows the cries of my heart.
And that Wes on the Bachelor is a creep - she really needs to get rid of that guy! What is she thinking?
That I am in love with two men at one time. My son who fills each day with so much joy and so many smiles, and my husband who loves me more than anything. The moment Dr. Vossler came in and told me about the tumor I was okay. But when I looked at my husband is when it really became real. The look on his face in that moment was so much worse than the news the doctor had given me. Jared lost it, and it makes me cry every time I think about that moment. The thought that he might lose me was the worst thing in the world to him - oh how I am thankful for this man.
That I have the most wonderful friends and family surrounding me. My friends are willing to do anything and everything for me. They don't treat me any differently because I'm in a wheelchair, and they aren't embarrased to be out in public with me, which is something I certainly worried about in the beginning. To them I am the same person. My friends water my flowers because they know that I love them. They watch Anthony so I don't have to worry about him while I'm being selfish and focusing on myself in physical therapy. They call and email and send cards. They drive me around when I can't drive myself. They laugh with me and cry with me. How did I get so lucky to have these people in my life?
That I have to keep hoping. Hope and faith will guide me until I start walking again. It feels like it's been an eternity since my surgery, but it's only been about three months. It's still so early in the grand scheme of things. Hope, hope, hope.
That worship music can change my entire day, and keep me in a positive attitude no matter what is going on that day.
That God answers my prayers quickly and he knows the cries of my heart.
And that Wes on the Bachelor is a creep - she really needs to get rid of that guy! What is she thinking?
A few pictures from this week...
My Old Man
Well Jared went in a couple of weeks ago and had the Berkely done to get an idea of how healthy he is. No surprise, his cholesterol is higher than it should be. Dr. Reedy says he can thank Kim for that - he has all the genetic markings that show he is at risk for high cholesterol. So at the age of 29, Jared has started what will probably be a lifetime of taking Crestor to lower his cholesterol, as diet and exercise unfortunately will not work. We joke that the last year we have aged about 50 years. I'm now in a wheelchair, and Jared is on meds that men older than him usually take! In addition to the Crestor he's on a couple of other vitamin/supplements too. I bought him this pill case yesterday and he was thrilled - another sign he is getting old!
Thursday, June 11, 2009
New PT
Next week I start PT at Pushing Boundaries.
http://www.pushing-boundaries.com/
Pushing Boundaries is "controversial" according to my doctor, because there is no scientific research that it works/doesn't work. My PT at the U, Whitney, thought I should give it a try, however. PB focuses on exercising my legs using electric stim bikes, weight bearing treadmills, etc. It makes perfect sense - if you don't use something for three months, do you really expect it to work perfectly again? Hopefully my legs will start to remember some of the patterns and movements and start the nerves sending signals. 26% of their clients are walking on their own now.
Visiting the place gave me a lot of hope for my recovery. It's so hard sometimes to keep the hope when from one day to the next I'm not seeing huge changes, but I have to remember that this is going to be a long process, and it's not likely I'll just wake up one morning with the ability to walk again. Though God certainly has the power and will to do that, and man would that be nice!
PB is a pretty intense program, and it's going to take a lot of physical work on my part. It's also a big time committment for my friends and family who are going to help by driving me there and watching Anthony. But I know it will be worth it when I start to take steps on my own again.
http://www.pushing-boundaries.com/
Pushing Boundaries is "controversial" according to my doctor, because there is no scientific research that it works/doesn't work. My PT at the U, Whitney, thought I should give it a try, however. PB focuses on exercising my legs using electric stim bikes, weight bearing treadmills, etc. It makes perfect sense - if you don't use something for three months, do you really expect it to work perfectly again? Hopefully my legs will start to remember some of the patterns and movements and start the nerves sending signals. 26% of their clients are walking on their own now.
Visiting the place gave me a lot of hope for my recovery. It's so hard sometimes to keep the hope when from one day to the next I'm not seeing huge changes, but I have to remember that this is going to be a long process, and it's not likely I'll just wake up one morning with the ability to walk again. Though God certainly has the power and will to do that, and man would that be nice!
PB is a pretty intense program, and it's going to take a lot of physical work on my part. It's also a big time committment for my friends and family who are going to help by driving me there and watching Anthony. But I know it will be worth it when I start to take steps on my own again.
Sunday, June 7, 2009
I love sweat!
This week in Seattle has been HOT!! It averaged 80 inside our house most days - we don't have AC. Nights would cool off to about 73. I was complaining to my PT about sweating so much and asked her how people in wheelchairs cool off. She looked at me strangely for a second, and then said that I shouldn't be sweating below my line of injury. Well I definitely am! She said that is a good sign. Never thought I'd be happy to sweat.
Tuesday, June 2, 2009
Doctor's Appointment
Yesterday I met with Dr. Reyes, my spinal cord rehab doctor. Last time I saw her was when I was inpatient at the UW, so I was excited to see her again and tell her about the things that have changed with me. As expected, she didn't have anything new to say about my prognosis. She said the reason they have such a hard time with my particular situation is that they rarely see someone with a spinal cord tumor. Most spinal cord injuries are some sort of accident and they can do a better job at predicting how someone with an accident will recover. But because the tumor was pressing on my spine for so long they don't know what to expect.
I did discover while I was there that I have problems with tendons in my right wrist. My wrist has been hurting for just over a week. Apparently it's a pretty commong problem with new moms. They said if I weren't in a wheelchair they'd put me in a splint, but because my hands are everything for me right now they can't do that. So instead I'm getting a more flexible brace and ibuprofen to reduce the inflammation. If that doesn't help I'll go back in for a cortisone shot.
Next week I meet with Dr. Balousek, the neurosurgeon who removed my tumor, and he'll send me for an MRI to see how my spine looks now.
I did discover while I was there that I have problems with tendons in my right wrist. My wrist has been hurting for just over a week. Apparently it's a pretty commong problem with new moms. They said if I weren't in a wheelchair they'd put me in a splint, but because my hands are everything for me right now they can't do that. So instead I'm getting a more flexible brace and ibuprofen to reduce the inflammation. If that doesn't help I'll go back in for a cortisone shot.
Next week I meet with Dr. Balousek, the neurosurgeon who removed my tumor, and he'll send me for an MRI to see how my spine looks now.
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