Thank you for sharing the journey with us.
Monday, March 1, 2010
Three Year Anniversary!
It was 3 years ago today that Taylor's "life changing event" happened. He has recovered in ways that we really wondered, in the early days, if it was even possible. Taylor is tough as nails and with his determination, wonderful medical care and God's grace, he survived what is often a very tragic outcome.
Thank you for sharing the journey with us.
Thank you for sharing the journey with us.
Sunday, October 25, 2009
Close Call
Taylor was in a traffic crash Friday night that could have been scarier than it was. Fortunately, no one was hurt.
I was out of state, so didn't find out about it until I got home last night. I guess everyone thought I'd panic.
Taylor was at a friend's house and went to the store to buy snacks for their Friday Night Watch Movies At Home event. The brake lights in his car went out, so he drove a friend's car. He was only a couple of blocks from the friend's home when he stopped at a 4 way intersection. He saw a car approaching from the left, and he said it appeared the guy was slowing, so after his stop Taylor began through the intersection.
He said he looked to his left and saw the guy was not going to stop, so he floored it trying to get out of the way of the other driver. He didn't make it. The other car struck the car he was driving behind the driver's door, which caused the car to spin 180 degrees. He wasn't hurt but said he's a little sore from the seatbelt.
When his mother got there, she said he was pretty shaken up. I think we all have done a little "what if?" in our minds after that. We knew that, eventually, he was likely to get in another car crash. We all have had them. We were just hoping it wouldn't have been this soon.
But, maybe since one has happened, the odds of another one happening anytime soon is really really low.
I was out of state, so didn't find out about it until I got home last night. I guess everyone thought I'd panic.
Taylor was at a friend's house and went to the store to buy snacks for their Friday Night Watch Movies At Home event. The brake lights in his car went out, so he drove a friend's car. He was only a couple of blocks from the friend's home when he stopped at a 4 way intersection. He saw a car approaching from the left, and he said it appeared the guy was slowing, so after his stop Taylor began through the intersection.
He said he looked to his left and saw the guy was not going to stop, so he floored it trying to get out of the way of the other driver. He didn't make it. The other car struck the car he was driving behind the driver's door, which caused the car to spin 180 degrees. He wasn't hurt but said he's a little sore from the seatbelt.
When his mother got there, she said he was pretty shaken up. I think we all have done a little "what if?" in our minds after that. We knew that, eventually, he was likely to get in another car crash. We all have had them. We were just hoping it wouldn't have been this soon.
But, maybe since one has happened, the odds of another one happening anytime soon is really really low.
Saturday, September 5, 2009
23 years
Today is Taylor's 23rd birthday. It sure is nice to say "is" and not "would have been".
He is still working the muscle to help create the smile, but he hasn't quite mastered triggering it automatically. The Surgeon said some patients reported that they deliberately triggered the smile (gritting their back teeth while smiling) so often that it now is just something that happens automatically without them even thinking about it.
We've been reminding Taylor to do that, but at his age he probably sees it as nagging. Oh well. He now has a more even smile than he's had in 2.5 years, so that's really all that matters.
He returns to Johns Hopkins either later this month or early next month for a Doctor's visit to check his progress.
He is still working the muscle to help create the smile, but he hasn't quite mastered triggering it automatically. The Surgeon said some patients reported that they deliberately triggered the smile (gritting their back teeth while smiling) so often that it now is just something that happens automatically without them even thinking about it.
We've been reminding Taylor to do that, but at his age he probably sees it as nagging. Oh well. He now has a more even smile than he's had in 2.5 years, so that's really all that matters.
He returns to Johns Hopkins either later this month or early next month for a Doctor's visit to check his progress.
Sunday, August 9, 2009
FINR revisited
12:15pm
Last Thursday, a client called to see if I could immediately serve 2 Subpoenas in Hardee county. She told me that the individuals were aware the Subpoenas were coming and were testifying on behalf of the firms client. When she asked if I knew where the Florida Institute for Neurologic Rehabilitation was, I said "Yea....I've been there a few times" and told her I went every day for 3 months while Taylor was there.
Taylor has often talked about going back to FINR to visit with those who cared for him and made him work hard in rehabilitation, but wasn't able to go when we tried one time last year. He said he almost feels some sort of guilt by having recovered so well when others didn't. He said he has "terrible memories" at FINR. Even though the staff was great and that is where he was able to physically recover, it was a very tough 3 month fight.
When Taylor got to FINR, he had to be transported in an ambulance. He had lost 40 pound in the hospital and was down to a gaunt 118 pounds. He had a catheter, feeding tube and trach. He wasn't able to walk, talk, eat or even sit up on his own. He was dealing with his hearing loss and didn't yet have glasses for his double vision. He had to be lifted out of bed by a crane type of device with a sling he sat in. It was not a good time for him.
Last week when I traveled to FINR I stayed for a couple of hours visiting with those that worked with and cared for Taylor. I told Taylor I was going and he said "Be sure and tell Donna, Tina, Anita, Lilliana, Sara, Kim, Amy....just tell everybody I said "hi". There really are some wonderful people that work at a job that has to be very difficult at times.
Before I left, one of the Administrators asked me to speak to a Mother of an 18 year old who had recently come to FINR. He was "car surfing" when he fell to the ground from the roof of a moving vehicle. His name is Tyler - very close to Taylor - and the staff there had mentioned previously that he reminded them of Taylor. Watching the physical therapists working with Tyler reminded me so much of the first week Taylor was there - unable to sit up on his own and having to be strapped in a wheel chair so we wouldn't fall out. I remember how excited I was when Taylor, unable to use his right arm or leg, would propel himself down the hall in his wheelchair, using his left foot to pull himself along. Tyler's mom told me her son was in a coma when he came to FINR, and the hospital Doctors told her he would probably have to live in a nursing home the rest of his life. Then, in the past couple of weeks he awakened and called his mother's name. So, to see him following directions as the staff had him try walking with a chest-high walking support device was really, really exciting to watch. It's hard to tell, and it's anyone's guess, how much Tyler will get back but by the looks of things and the improvement he's already had he'll definitely only get better.
As I looked around the room at all of the new faces and realized that there were so many other patients that had come and gone in the 2 years since Taylor was there, I felt an overwhelming sadness. It's just heartbreaking to see people who were fine one minute, and their lives and the lives of their families forever changed.
Not that I really needed one, but it was a reminder for me of the things that matter and the things that don't. There are a few people I'd like to be able to take to FINR so they would realize how trivial some of their "problems" really are compared to others.
Last Thursday, a client called to see if I could immediately serve 2 Subpoenas in Hardee county. She told me that the individuals were aware the Subpoenas were coming and were testifying on behalf of the firms client. When she asked if I knew where the Florida Institute for Neurologic Rehabilitation was, I said "Yea....I've been there a few times" and told her I went every day for 3 months while Taylor was there.
Taylor has often talked about going back to FINR to visit with those who cared for him and made him work hard in rehabilitation, but wasn't able to go when we tried one time last year. He said he almost feels some sort of guilt by having recovered so well when others didn't. He said he has "terrible memories" at FINR. Even though the staff was great and that is where he was able to physically recover, it was a very tough 3 month fight.
When Taylor got to FINR, he had to be transported in an ambulance. He had lost 40 pound in the hospital and was down to a gaunt 118 pounds. He had a catheter, feeding tube and trach. He wasn't able to walk, talk, eat or even sit up on his own. He was dealing with his hearing loss and didn't yet have glasses for his double vision. He had to be lifted out of bed by a crane type of device with a sling he sat in. It was not a good time for him.
Last week when I traveled to FINR I stayed for a couple of hours visiting with those that worked with and cared for Taylor. I told Taylor I was going and he said "Be sure and tell Donna, Tina, Anita, Lilliana, Sara, Kim, Amy....just tell everybody I said "hi". There really are some wonderful people that work at a job that has to be very difficult at times.
Before I left, one of the Administrators asked me to speak to a Mother of an 18 year old who had recently come to FINR. He was "car surfing" when he fell to the ground from the roof of a moving vehicle. His name is Tyler - very close to Taylor - and the staff there had mentioned previously that he reminded them of Taylor. Watching the physical therapists working with Tyler reminded me so much of the first week Taylor was there - unable to sit up on his own and having to be strapped in a wheel chair so we wouldn't fall out. I remember how excited I was when Taylor, unable to use his right arm or leg, would propel himself down the hall in his wheelchair, using his left foot to pull himself along. Tyler's mom told me her son was in a coma when he came to FINR, and the hospital Doctors told her he would probably have to live in a nursing home the rest of his life. Then, in the past couple of weeks he awakened and called his mother's name. So, to see him following directions as the staff had him try walking with a chest-high walking support device was really, really exciting to watch. It's hard to tell, and it's anyone's guess, how much Tyler will get back but by the looks of things and the improvement he's already had he'll definitely only get better.
As I looked around the room at all of the new faces and realized that there were so many other patients that had come and gone in the 2 years since Taylor was there, I felt an overwhelming sadness. It's just heartbreaking to see people who were fine one minute, and their lives and the lives of their families forever changed.
Not that I really needed one, but it was a reminder for me of the things that matter and the things that don't. There are a few people I'd like to be able to take to FINR so they would realize how trivial some of their "problems" really are compared to others.
Saturday, July 25, 2009
Smiling improves
9:52 am
Taylor continues to exercise the transplanted muscle and the smile is getting a little bigger. Most probably wouldn't consider what he's able to do as a "real" smile, but for us it's the best we've seen in over 2 years so we'll take it.
As far as we know now, that was the last surgery. He's opted to skip the eye surgery for now, since he's developed nearsightedness so even if the double vision was corrected surgically, he'd still have to wear glasses unless he did the lasik procedure.
In a few months, he'll return to Johns Hopkins for a follow up with the Doctor but after that he should be all finished with Doctors that treated him for accident related injuries.
Taylor continues to exercise the transplanted muscle and the smile is getting a little bigger. Most probably wouldn't consider what he's able to do as a "real" smile, but for us it's the best we've seen in over 2 years so we'll take it.
As far as we know now, that was the last surgery. He's opted to skip the eye surgery for now, since he's developed nearsightedness so even if the double vision was corrected surgically, he'd still have to wear glasses unless he did the lasik procedure.
In a few months, he'll return to Johns Hopkins for a follow up with the Doctor but after that he should be all finished with Doctors that treated him for accident related injuries.
Friday, July 3, 2009
The Official Smile
6:30am
Yesterday we saw what can be described as the first "official" smile. Before the muscle made the corner of Taylor's mouth quiver just a little bit. You had to stand close and really pay attention, but you could see movement.
He's been flexing the muscle daily in order to strengthen it and to help train his brain to clench his teeth when he wants to smile so it will become automatic.
Yesterday his mother, sister and I were in his room shortly after he woke up. I asked him to try to smile, and when he did it was MUCH better than before. It wasn't a full, regular smile but maybe about 1/4 of what he had before on the left side, but it was enough to make everyone cry.
It's apparent that this procedure creates resistance so the strong side doesn't pull the paralyzed side toward the center of the mouth. And the flexing of the muscle helps tighten the paralyzed side to help create the smile.
Hopefully, in another month or two he'll have a full smile similar to some of the other patients who have had this procedure. You can see their before and after pictures here. Taylor's paralysis is most like the woman on the top left and the man beneath her.
Yesterday we saw what can be described as the first "official" smile. Before the muscle made the corner of Taylor's mouth quiver just a little bit. You had to stand close and really pay attention, but you could see movement.
He's been flexing the muscle daily in order to strengthen it and to help train his brain to clench his teeth when he wants to smile so it will become automatic.
Yesterday his mother, sister and I were in his room shortly after he woke up. I asked him to try to smile, and when he did it was MUCH better than before. It wasn't a full, regular smile but maybe about 1/4 of what he had before on the left side, but it was enough to make everyone cry.
It's apparent that this procedure creates resistance so the strong side doesn't pull the paralyzed side toward the center of the mouth. And the flexing of the muscle helps tighten the paralyzed side to help create the smile.
Hopefully, in another month or two he'll have a full smile similar to some of the other patients who have had this procedure. You can see their before and after pictures here. Taylor's paralysis is most like the woman on the top left and the man beneath her.
Sunday, June 21, 2009
The Muscle Moves - a little bit
10:45 PM
The muscle that will create the smile is definitely responding when Taylor clenches his teeth, but just not much. In fact, I'm not sure it can even be measured, but it's definitely moving a little bit.
He still has some swelling on the left side of his head and the area where the muscle was moved in is still swollen.
I took some photos and emailed them on Friday to the Surgeon that did the operation so he can see how the swelling is doing. Next week, I'll video Taylor as he tries to smile so we can find out if he's progressing the way he should be.
The Dr. said it would take a couple of months before the full effect of the muscle is known, but it's only been a couple of weeks so I guess we shouldn't get nervous just yet. All the other operations have worked, so no reason this one isn't going to.
The muscle that will create the smile is definitely responding when Taylor clenches his teeth, but just not much. In fact, I'm not sure it can even be measured, but it's definitely moving a little bit.
He still has some swelling on the left side of his head and the area where the muscle was moved in is still swollen.
I took some photos and emailed them on Friday to the Surgeon that did the operation so he can see how the swelling is doing. Next week, I'll video Taylor as he tries to smile so we can find out if he's progressing the way he should be.
The Dr. said it would take a couple of months before the full effect of the muscle is known, but it's only been a couple of weeks so I guess we shouldn't get nervous just yet. All the other operations have worked, so no reason this one isn't going to.
Sunday, June 7, 2009
Taylor Comes Home Today
9:00 am
Taylor comes home today after being gone for 2 weeks - the longest since the 5 months he was gone from home after the wreck.
The pain has slowly gotten better and he's expecting to be off the pain killers in the next day or so. The swelling has gone down a lot, but he's still "puffy" and will be for months.
The swelling of his inside cheek has prevented him from chewing. He had to put gauze between his teeth and cheek to keep him from biting it, and it's gotten very sore. He's been on a mostly liquid diet since the surgery, so he's looking forward to eating real food.
Last week he went to the Doctor to get the stitches out and for a follow up. The Doctor called the surgery "text book" and said they decided to leave the Gortex band that was installed in his cheek by Shands, and tie the transplanted muscle to the Gortex. He said they thought it would work better to do that rather than remove the band.
He had Taylor flex the muscle, and his mother said it did pull the paralyzed side back a little. It didn't create a smile, but the Doctor said it will in time. Taylor will have to practice triggering the muscle by putting his back teeth together and clenching his jaw. As the swelling goes down and the muscle gets stronger, it will pull the corner of his mouth back more.
The Doctor told us initially that the muscle will pull the corner back about 3/8". At first that didn't sound like much. But, when you look at his mouth in the normal resting position and measure back 3/8", you realize that it doesn't take much to create a smile.
Taylor is really ready to come home. It's been a tough 2 weeks for him and his mother. They stayed for a week with Suzie's cousin, the Robert Claiborne family in Baltimore, then after he felt better they stayed with Suzie's friend Amy Goyer in Alexandria, VA, just outside of Washington, DC. During the last week, Taylor wanted to go to a couple of places in Washington, but never felt like going.
He'll probably hang around the house for another week or so, then he'll be relaxing for the summer. He decided to not take any classes this summer, since he had the surgery scheduled and next month is his mother's annual family reunion in Tennessee.
Taylor comes home today after being gone for 2 weeks - the longest since the 5 months he was gone from home after the wreck.
The pain has slowly gotten better and he's expecting to be off the pain killers in the next day or so. The swelling has gone down a lot, but he's still "puffy" and will be for months.
The swelling of his inside cheek has prevented him from chewing. He had to put gauze between his teeth and cheek to keep him from biting it, and it's gotten very sore. He's been on a mostly liquid diet since the surgery, so he's looking forward to eating real food.
Last week he went to the Doctor to get the stitches out and for a follow up. The Doctor called the surgery "text book" and said they decided to leave the Gortex band that was installed in his cheek by Shands, and tie the transplanted muscle to the Gortex. He said they thought it would work better to do that rather than remove the band.
He had Taylor flex the muscle, and his mother said it did pull the paralyzed side back a little. It didn't create a smile, but the Doctor said it will in time. Taylor will have to practice triggering the muscle by putting his back teeth together and clenching his jaw. As the swelling goes down and the muscle gets stronger, it will pull the corner of his mouth back more.
The Doctor told us initially that the muscle will pull the corner back about 3/8". At first that didn't sound like much. But, when you look at his mouth in the normal resting position and measure back 3/8", you realize that it doesn't take much to create a smile.
Taylor is really ready to come home. It's been a tough 2 weeks for him and his mother. They stayed for a week with Suzie's cousin, the Robert Claiborne family in Baltimore, then after he felt better they stayed with Suzie's friend Amy Goyer in Alexandria, VA, just outside of Washington, DC. During the last week, Taylor wanted to go to a couple of places in Washington, but never felt like going.
He'll probably hang around the house for another week or so, then he'll be relaxing for the summer. He decided to not take any classes this summer, since he had the surgery scheduled and next month is his mother's annual family reunion in Tennessee.
Sunday, May 31, 2009
Swelling and Pain
8:10 am
Swelling and pain - and Taylor has a LOT of both.
He was kept in the hospital an extra day until he could control the pain with the medications the hospital sent home with him. The Dilaudid caused itching that about ran him crazy, especially since he couldn't scratch his face. He only slept for 2 hours at a time and was miserable. He was switched to Morphine an Oxycodone, then finally just the Oxycodone. They had to tweek the milligrams and time between pills before hitting on the right combination to keep the pain controllable. His left eye is swollen shut, and the entire left side of his face is huge, and there is even swelling on the right side.
He went with his mother yesterday to the pharmacy to get out some, but didn't last long. His head began to hurt so he went back to the Claiborne's home. Tomorrow they'll move down to Alexandria, VA to stay with Suzie's friend for the next week.
The Dr. said Taylor should wait at least 2 weeks before attemtping to smile, so that all the internal work has time to heal enough to give it a whirl.
Swelling and pain - and Taylor has a LOT of both.
He was kept in the hospital an extra day until he could control the pain with the medications the hospital sent home with him. The Dilaudid caused itching that about ran him crazy, especially since he couldn't scratch his face. He only slept for 2 hours at a time and was miserable. He was switched to Morphine an Oxycodone, then finally just the Oxycodone. They had to tweek the milligrams and time between pills before hitting on the right combination to keep the pain controllable. His left eye is swollen shut, and the entire left side of his face is huge, and there is even swelling on the right side.
He went with his mother yesterday to the pharmacy to get out some, but didn't last long. His head began to hurt so he went back to the Claiborne's home. Tomorrow they'll move down to Alexandria, VA to stay with Suzie's friend for the next week.
The Dr. said Taylor should wait at least 2 weeks before attemtping to smile, so that all the internal work has time to heal enough to give it a whirl.
Wednesday, May 27, 2009
Surgery Done! Let the smiling begin
6:15 am
The surgery went well yesterday. Originally scheduled for 8 - 9 hours, it was completed in about 7. Taylor was in a lot of pain last night, even after being given Dilaudid. His mother said he was starting to bruise beneath the eyes and his face was swelling. If the procedure he had done at Shands last year is any indication, the swelling will be significant. The Dr. said it could take up to 9 months for all of the swelling from the muscle transplant to go away.
He spent the night in ICU last night and if all went well he'll be released this afternoon. Suzie's cousin, Robert Claiborne, lives in Baltimore so they'll be staying with him until this weekend. They plan to stay next week with Suzie's friend, Amy Goyer, in Alexandria, VA. It's about an hour from Johns Hopkins so should anything come up they won't be far away.
Given the pain and soreness, it will probably be a while before Taylor will want to try to flex the muscle that will create the smile on the paralyzed side of his face.
This is very likely the end of a long, often very bumpy, road that Taylor has traveled. Unless he decides at a later time to do the eye surgery, this should be the last accident related medical procedure.
The surgery went well yesterday. Originally scheduled for 8 - 9 hours, it was completed in about 7. Taylor was in a lot of pain last night, even after being given Dilaudid. His mother said he was starting to bruise beneath the eyes and his face was swelling. If the procedure he had done at Shands last year is any indication, the swelling will be significant. The Dr. said it could take up to 9 months for all of the swelling from the muscle transplant to go away.
He spent the night in ICU last night and if all went well he'll be released this afternoon. Suzie's cousin, Robert Claiborne, lives in Baltimore so they'll be staying with him until this weekend. They plan to stay next week with Suzie's friend, Amy Goyer, in Alexandria, VA. It's about an hour from Johns Hopkins so should anything come up they won't be far away.
Given the pain and soreness, it will probably be a while before Taylor will want to try to flex the muscle that will create the smile on the paralyzed side of his face.
This is very likely the end of a long, often very bumpy, road that Taylor has traveled. Unless he decides at a later time to do the eye surgery, this should be the last accident related medical procedure.
Tuesday, May 26, 2009
Today is THE day
8:00 am
Taylor's surgery was moved up to 9:30 am. I just spoke to him and he was getting ready to go back to the staff can get everything ready.
Taylor and Suzie are staying at the home of Suzie's cousin, Robert Claiborne, who lives in Baltimore. This coming weekend, they'll head to Alexandria, VA to stay with a friend of Suzie's. The Doctor wants Taylor to stay nearby for a while in the event there are any complications afterwards.
Robert's daughter, Eleanor, is staying with Taylor and Suzie all day today. Suzie will definitely enjoy having someone with her all day. Taylor will be in ICU tonight and Suzie will stay overnight with him.
He should be able to leave the hospital some time tomorrow and head to the Claiborne's to begin the healing process. The Doctor said it may take up to 9 months for all of the swelling to go away.
Please keep Taylor in your prayers today.
Taylor's surgery was moved up to 9:30 am. I just spoke to him and he was getting ready to go back to the staff can get everything ready.
Taylor and Suzie are staying at the home of Suzie's cousin, Robert Claiborne, who lives in Baltimore. This coming weekend, they'll head to Alexandria, VA to stay with a friend of Suzie's. The Doctor wants Taylor to stay nearby for a while in the event there are any complications afterwards.
Robert's daughter, Eleanor, is staying with Taylor and Suzie all day today. Suzie will definitely enjoy having someone with her all day. Taylor will be in ICU tonight and Suzie will stay overnight with him.
He should be able to leave the hospital some time tomorrow and head to the Claiborne's to begin the healing process. The Doctor said it may take up to 9 months for all of the swelling to go away.
Please keep Taylor in your prayers today.
Friday, May 8, 2009
The Countdown Begins
7:21am
This week Taylor received insurance approval for the facial reanimation surgery at John Hopkins Hospital in Baltimore, MD. He'll be the 31st person to get the procedure done there.
Taylor and his Mother will fly to Baltimore on Friday, May 22nd and the surgery begins at 10:30am on Tuesday, May 26th. He will be in surgery for 8 hours and just about every area of his face will be cut on - eyebrow, upper eyelid, lower eyelid, nose and cheek. The Surgeon said he may have to remove the Gortex band that was installed by Shands last year, so if that happens, he'll also be cut on the upper lip, lower lip and "smile crease" to the side of the corner of the mouth.
He'll stay in the hospital overnight, and remain in the Baltimore area for 2 weeks so they can monitor for infection, remove stitches, etc. The pain and swelling will certainly be worse than it was after the procedure at Shands last year, and that was pretty bad. He was in a lot of pain for about 5 days after the surgery and his face was swollen for over a month.
But, Taylor misses his smile - we all do. He's ready to endure the pain to get his smile back, even if it's only a partial smile. We want it back too.
He also realizes there is a chance that he may go through all of this and it may not work, or the results may not be what he had hoped, but he wants to take that chance. The previous 30 procedures have been successes, and based on Taylor's track record in recovery, he will be Success No. 31.
We now start the countdown - 18 days to go.
Saturday, April 11, 2009
No Eye Surgery - For Now, Anyway
11:02pm
Taylor met with the eye Surgeon on Friday.
After some testing and measuring, she is changing his eyeglass prescription again to further align his eyes. She has determined that he has developed some nearsightedness so will add to the prescription to help straighten that out as well.
Because Taylor will have to wear glasses for the nearsightedness, he's not certain he wants to take the change on eye surgery right now. The surgery is about 80% successful, but won't do a thing to clear up him being nearsighted. Since he'll have to wear glasses to resolve that, going through surgery only to have to continue wearing glasses isn't something he wants to take a chance on right now.
He can do the surgery any time in the future, but for now he doesn't see (no pun intended!) a huge advantage.
Before knowing about the nearsighted thing, he had planned to do that surgery in May and the facial reanimation the first week of June. On the way back from Tampa, we called Johns Hopkins to move the June surgery up to May 26th.
So, we're all counting the days until we can again see him smile like he did before March 1, 2007.
After some testing and measuring, she is changing his eyeglass prescription again to further align his eyes. She has determined that he has developed some nearsightedness so will add to the prescription to help straighten that out as well.
Because Taylor will have to wear glasses for the nearsightedness, he's not certain he wants to take the change on eye surgery right now. The surgery is about 80% successful, but won't do a thing to clear up him being nearsighted. Since he'll have to wear glasses to resolve that, going through surgery only to have to continue wearing glasses isn't something he wants to take a chance on right now.
He can do the surgery any time in the future, but for now he doesn't see (no pun intended!) a huge advantage.
Before knowing about the nearsighted thing, he had planned to do that surgery in May and the facial reanimation the first week of June. On the way back from Tampa, we called Johns Hopkins to move the June surgery up to May 26th.
So, we're all counting the days until we can again see him smile like he did before March 1, 2007.
Tuesday, March 24, 2009
Surgery Set For June
3:10pm
The Baltimore trip was a success! Taylor met with Dr. Byrne yesterday in Baltimore. He has approved doing surgery, and we'll get it scheduled sometime in June - pending approval from the insurance company.
In addition to the surgery to help restore his smile, the Doctor will do some additional tweaking to help with facial symmetry. Taylor's left lower eyelid will be lifted so that the eye opening is the same size. This will also help protect his eye some. His inability to squint his eye really aggravates him sometime. Over the weekend in Washington, it was pretty cold and windy on Saturday. Because he can't squint his eye, the constant wind blowing really irritated it. The left eyebrow will also be lifted. As he ages, he'll have to get more procedures to keep pace with the right side.
The surgery is expected to take about 7 hours. Taylor will be in the hospital overnight and will stay in Baltimore for a week. There will be a lot of swelling, and there 1 in 15 chance for infection, based on the 30 previous procedures that have been done. Fortunately, his mother has a cousin in Baltimore so he'll have a comfortable place to recover instead of being in a hotel room for a week.
Taylor has an appointment on April 10th with the eye surgeon in Tampa. Hopefully, he'll find out if the new eyeglass lense he's using has aligned his left eye. If so, then surgery will likely happen this summer.
The Baltimore trip was a success! Taylor met with Dr. Byrne yesterday in Baltimore. He has approved doing surgery, and we'll get it scheduled sometime in June - pending approval from the insurance company.
In addition to the surgery to help restore his smile, the Doctor will do some additional tweaking to help with facial symmetry. Taylor's left lower eyelid will be lifted so that the eye opening is the same size. This will also help protect his eye some. His inability to squint his eye really aggravates him sometime. Over the weekend in Washington, it was pretty cold and windy on Saturday. Because he can't squint his eye, the constant wind blowing really irritated it. The left eyebrow will also be lifted. As he ages, he'll have to get more procedures to keep pace with the right side.
The surgery is expected to take about 7 hours. Taylor will be in the hospital overnight and will stay in Baltimore for a week. There will be a lot of swelling, and there 1 in 15 chance for infection, based on the 30 previous procedures that have been done. Fortunately, his mother has a cousin in Baltimore so he'll have a comfortable place to recover instead of being in a hotel room for a week.
Taylor has an appointment on April 10th with the eye surgeon in Tampa. Hopefully, he'll find out if the new eyeglass lense he's using has aligned his left eye. If so, then surgery will likely happen this summer.
Thursday, March 12, 2009
Baltimore Bound!
4:15 pm
It's set up. Taylor has an appointment on Monday, March 23rd to see the Doctor at John Hopkins. The Doctor will likely make a final determination then about the surgery.
We found some stupid cheap tickets on Allegiant Air that will allow all of us to go. Flights are only on Monday and Friday, so we'll go up Friday and hang out in Washington DC until his appointment Monday afternoon.
This is one of the big moments. If they do the surgery and if it's as successful as the others have been, this trip puts him 1 step closer to getting his smile back.
Monday, March 9, 2009
Johns Hopkins Tentatively Approves Surgery!!!
11:00 PM
The last option is the one we had heard about from the Doctor at Shands in Gainesville. The surgery is a couple of hours and he'd be in the hospital overnight. The smile is about 1/2 the size of that created with the leg muscle, but it's a lot less invasive. Once completed, the results are immediate. The smile won't be automatic. He will have to learn how to "train" the muscle to smile by gritting his back teeth together, which will trigger the muscle to activate the paralyzed side of his mouth. Initially, when he deliberately wants to smile, he'll have to remember to trigger the muscle. But the Doctor said over time the brain will eventually know that when it's time to smile it will signal him to grit his back teeth and cause him to smile.
Last night we learned that Taylor appears to be a good candidate for the facial reanimation surgery.
While I was driving back from Tampa, Suzie was at home and Taylor at a friend's house, the Surgeon conferenced us all together and explained the 3 options available.
One involves cross matching nerves from the unaffected side of his face to the paralyzed side. But, since testing at Shands showed the nerves on the paralyzed side are essentially dead, that procedure isn't an option. The second one is to harvest a muscle from the leg and attach it to nerves and tendons in the face. Although it tends to create a bigger smile, it takes up to a year for it to start working. Because of the size of the muscle, there would likely be a bulge in his cheek. His hospital stay would be about a week, and it's about an 8 hour surgery.
The last option is the one we had heard about from the Doctor at Shands in Gainesville. The surgery is a couple of hours and he'd be in the hospital overnight. The smile is about 1/2 the size of that created with the leg muscle, but it's a lot less invasive. Once completed, the results are immediate. The smile won't be automatic. He will have to learn how to "train" the muscle to smile by gritting his back teeth together, which will trigger the muscle to activate the paralyzed side of his mouth. Initially, when he deliberately wants to smile, he'll have to remember to trigger the muscle. But the Doctor said over time the brain will eventually know that when it's time to smile it will signal him to grit his back teeth and cause him to smile.
He said most patients choose the third option, and all have been very pleased with the results. There have been no bad outcomes, and all have worked. Only two patients have had any complications, and they've done about 30 of the procedures so far.
This Doctor reminded us what the Doctor in Shands told us - that Taylor will have other surgical procedures in the years ahead as he ages. The biggest concern will be just below his eye. That will begin to droop causing his eye to dry out while sleeping that can lead to scratching of the cornea of the eye. For the rest of his life, he will continue to see a Surgeon who will monitor changes in his facial tone in order to make adjustments.
We don't know the insurance future with regard to those procedures. On his birthday later this year, he'll no longer be on our insurance policy. When he gets his own policy and they find out what happens, there may be some real issues getting him insured. For now, we're concentrating on getting everything done while the insurance holds out.
If he gets the final approval from Johns Hopkins, he'll be in a very small fraternity of people with facial paralysis who have been given back the ability to smile. We've really missed seeing Taylor's full smile and pray that he'll get the final approval for the surgery and it will be a success.
Taylor will have to go to Baltimore to be examined in person before they make a final decision, but so far it looks really good for him. He's very excited about the prospect of getting back some of the smile that he's lost.
Saturday, March 7, 2009
More vision testing
6:45 am
The eye surgeon did some additional testing yesterday and everything looks good for the surgery. We're waiting on the delivery of the plastic that will be added to one of his glass lenses to tweak the prescription to see if his eyes can be lined up with glasses. If so, the Dr. will do the surgery.
For some reason, his vision is no longer 20/20. The Dr. said it was peculiar that his testing would be so different 2 weeks apart but thought maybe they just hadn't adjusted after some of the other testing he did prior to the vision test.
We've still not heard from Johns Hopkins yet but I sent and email early this morning to see if I can find out if Taylor's case has been reviewed yet.
For some reason, his vision is no longer 20/20. The Dr. said it was peculiar that his testing would be so different 2 weeks apart but thought maybe they just hadn't adjusted after some of the other testing he did prior to the vision test.
We've still not heard from Johns Hopkins yet but I sent and email early this morning to see if I can find out if Taylor's case has been reviewed yet.
Sunday, March 1, 2009
The Second Anniversary
2:14 PM
Today is the second anniversary of Taylor's accident. It will pass without too much fanfare, but the past two years will certainly be on our minds all day.
There is an awful lot we've all learned in the past 2 year.s We learned that miracles DO happen. There were several instances where if things had gone the other way, the outcome would likely be very different - in a really bad way. If Connell Waldron hadn't caught a glimpse of the reflector on Taylor's car, he'd have no reason to stop and find Taylor on the side of the road. Other cars had passed without seeing Taylor's wrecked car. Initially, the helicopter pilot reported the fog was too bad for him to fly. Had he not decided 10 minutes later to make a run for it, the delay in getting Taylor to the hospital by ambulance may have changed the outcome. There are two examples that happened just in the first 30 minutes.
There are several other potential "life or death" situations that came up and each time it went in Taylor's favor. We have no doubt that these events weren't a series of odd coincidences, but that God had responded to the many prayers said for Taylor by friends and family all around the country. He was on prayer lists at churches in places we had never heard of.
Also tying for one of the top spots on the "Things We Learned" list are those in the medical profession who cared for Taylor. They not only kept him alive and helped him get better, but they comforted us and gave us hope at times when we were really scared of what the next hour may bring. They took care of Taylor like he was their own. They are people that you hope you never have to deal with professionally, but once you spend as much time with them as we did you recognize what amazing people they all are.
We learned what a huge difference friends can make at a time like that. We had friends that put parts of their lives on hold to help guide us through the nightmare we were living. Just having friends with us was a huge comfort. And, we REALLY needed comforting. During the critical times, everything would have been so much harder for us had our friends not been there to do all they did. Both our friends and Taylor's friends taught us a valuable lesson about friendship, and how important it is to be there at a time like that. So many did so much for us. We hope nothing ever happens to any of our friends families like what we experienced, but if it does we've learned just what to do to help make their lives a little more comfortable.
One of the more depressing things we learned is what happens to some patients who are in the situation Taylor was in. We heard stories from Nurses about patients - including children - who are hospitalized with life threatening injuries but the parents were not bedside. They'd check in after work sometimes, but there were days when they didn't do that. There was one man at the brain injury rehabilitation center where Taylor lived for 3 months who suffered a brain injury after being the victim of a crime. It wasn't long before I noticed this man never had any visitors. The Nurse told me he was from Miami, had a wife and kids, but no one had been to see him in the 10 months he had been there. It was apparent that this man would not likely be able to live on his own again, and will probably spend the rest of his life in a facility of some sort. How sad that all it took was an injury for his family to abandon him.
Taylor's mother and I have been in professions for the past 30+ years that caused us to meet other parents who lost a child or had one critically injured. We talked on occasion about those families, how how incredibly difficult it must have been for them. We had no idea until March 1, 2007 just how difficult it really is. It was much worse than I ever imagined. But, at least we got to bring Taylor home and many were not as fortunate.
It has, of course, been the most difficult for Taylor. I know he'd like his hearing and vision back to the way it was, to be able to throw a ball or run around the block. Although he doesn't say so, the facial paralysis certainly bothers him. But through it all he has shown determination and strength beyond anything I've ever seen before. He has accepted that the upcoming surgeries may not work, and there may not be any more improvements. He's ok with that. He said he doesn't worry about those things because "There is nothing I can do to change it".
The past 2 years have changed all of us in a lot of ways. Taylor has recognized he was given a second chance and he's taking advantage of it. School is now his top priority and his GPA proves it. He got about as close to death as one can get and still make it back in good shape.
While we realize that today could be the last day on earth for any member of our family, it's much more of a reality to us than it was before. So it's particularly painful for us to hear of families that have troubles, where kids are "kicked out" of their homes or tensions develop to the point that some family members don't speak to one another. Had they been along with us for the past 2 years, they'd quickly realize that there is nothing - or should be nothing - so important that it should ever interfere with family. And, they'd probably realize just how petty the issues that caused the problem really are. This event has certainly created even a stronger bond in our family.
There are several other potential "life or death" situations that came up and each time it went in Taylor's favor. We have no doubt that these events weren't a series of odd coincidences, but that God had responded to the many prayers said for Taylor by friends and family all around the country. He was on prayer lists at churches in places we had never heard of.
Also tying for one of the top spots on the "Things We Learned" list are those in the medical profession who cared for Taylor. They not only kept him alive and helped him get better, but they comforted us and gave us hope at times when we were really scared of what the next hour may bring. They took care of Taylor like he was their own. They are people that you hope you never have to deal with professionally, but once you spend as much time with them as we did you recognize what amazing people they all are.
We learned what a huge difference friends can make at a time like that. We had friends that put parts of their lives on hold to help guide us through the nightmare we were living. Just having friends with us was a huge comfort. And, we REALLY needed comforting. During the critical times, everything would have been so much harder for us had our friends not been there to do all they did. Both our friends and Taylor's friends taught us a valuable lesson about friendship, and how important it is to be there at a time like that. So many did so much for us. We hope nothing ever happens to any of our friends families like what we experienced, but if it does we've learned just what to do to help make their lives a little more comfortable.
One of the more depressing things we learned is what happens to some patients who are in the situation Taylor was in. We heard stories from Nurses about patients - including children - who are hospitalized with life threatening injuries but the parents were not bedside. They'd check in after work sometimes, but there were days when they didn't do that. There was one man at the brain injury rehabilitation center where Taylor lived for 3 months who suffered a brain injury after being the victim of a crime. It wasn't long before I noticed this man never had any visitors. The Nurse told me he was from Miami, had a wife and kids, but no one had been to see him in the 10 months he had been there. It was apparent that this man would not likely be able to live on his own again, and will probably spend the rest of his life in a facility of some sort. How sad that all it took was an injury for his family to abandon him.
Taylor's mother and I have been in professions for the past 30+ years that caused us to meet other parents who lost a child or had one critically injured. We talked on occasion about those families, how how incredibly difficult it must have been for them. We had no idea until March 1, 2007 just how difficult it really is. It was much worse than I ever imagined. But, at least we got to bring Taylor home and many were not as fortunate.
It has, of course, been the most difficult for Taylor. I know he'd like his hearing and vision back to the way it was, to be able to throw a ball or run around the block. Although he doesn't say so, the facial paralysis certainly bothers him. But through it all he has shown determination and strength beyond anything I've ever seen before. He has accepted that the upcoming surgeries may not work, and there may not be any more improvements. He's ok with that. He said he doesn't worry about those things because "There is nothing I can do to change it".
The past 2 years have changed all of us in a lot of ways. Taylor has recognized he was given a second chance and he's taking advantage of it. School is now his top priority and his GPA proves it. He got about as close to death as one can get and still make it back in good shape.
While we realize that today could be the last day on earth for any member of our family, it's much more of a reality to us than it was before. So it's particularly painful for us to hear of families that have troubles, where kids are "kicked out" of their homes or tensions develop to the point that some family members don't speak to one another. Had they been along with us for the past 2 years, they'd quickly realize that there is nothing - or should be nothing - so important that it should ever interfere with family. And, they'd probably realize just how petty the issues that caused the problem really are. This event has certainly created even a stronger bond in our family.
Friday, February 20, 2009
Eye Surgery Likely Early This Summer
2:13 pm
Taylor met with the eye surgeon in Tampa this morning. She did some testing and concluded that his condition is "traumatic optic atrophy" caused by damage to the 6th nerve. The damage caused the double vision and nystagmus (shaking of the eye).
She said if she can completely correct the double vision with glasses, then surgery will likely fix the problem. This surgery is successful about 80% of the time. Taylor now has to turn his head to the right while continuing to look straight ahead to stop his eyes from shaking. This surgery should clear that up as well.
For now, she is prescribing some thin clear sheets of plastic that will go over one of his glasses lense in order to try and completely correct the double vision. If that works, she'll do the surgery as soon as he gets out of school for summer. If it doesn't work, then the surgery won't help.
During one test today, when he followed a light with a red lense over his left eye, he saw 2 lights. One was white (seen with his right eye) and the other was red. The red was below and to the left of the white, so the Dr. was able to measure the degree of misalignment. The surgery will straighten that out, and then the Dr. will shift both eyes to the right a little. Then, (if I understood the explanation right) when he focuses straight ahead the nystagmus shouldn't be a problem since the brain thinks it's his head shifted to the right, not his eyes that have been realigned.
He heads back to Tampa in a week for some further testing, but for now it looks like surgery in early summer.
Taylor met with the eye surgeon in Tampa this morning. She did some testing and concluded that his condition is "traumatic optic atrophy" caused by damage to the 6th nerve. The damage caused the double vision and nystagmus (shaking of the eye).
She said if she can completely correct the double vision with glasses, then surgery will likely fix the problem. This surgery is successful about 80% of the time. Taylor now has to turn his head to the right while continuing to look straight ahead to stop his eyes from shaking. This surgery should clear that up as well.
For now, she is prescribing some thin clear sheets of plastic that will go over one of his glasses lense in order to try and completely correct the double vision. If that works, she'll do the surgery as soon as he gets out of school for summer. If it doesn't work, then the surgery won't help.
During one test today, when he followed a light with a red lense over his left eye, he saw 2 lights. One was white (seen with his right eye) and the other was red. The red was below and to the left of the white, so the Dr. was able to measure the degree of misalignment. The surgery will straighten that out, and then the Dr. will shift both eyes to the right a little. Then, (if I understood the explanation right) when he focuses straight ahead the nystagmus shouldn't be a problem since the brain thinks it's his head shifted to the right, not his eyes that have been realigned.
He heads back to Tampa in a week for some further testing, but for now it looks like surgery in early summer.
Tuesday, February 17, 2009
Past due bill of a different kind
2:00pm
So, we got a $2,300 bill today for anesthesia. Problem is, it was for the day of Taylor's accident ....March 1, 2007....almost 2 years ago. Nothing like being on top of the billing, huh? But, be a day late in paying a medical bill and they send Vinnie to your house with a baseball bat.
Taylor's appointment with the Neuro-opthamologist for tomorrow has been rescheduled until this Friday, so we should know then if his double vision can be corrected with surgery.
And, Johns Hopkins now has the video of Taylor and we're waiting to hear back from them. Taylor has decided to not take classes this summer and get the facial surgery done if they agree to take his case.
Cross your fingers!
So, we got a $2,300 bill today for anesthesia. Problem is, it was for the day of Taylor's accident ....March 1, 2007....almost 2 years ago. Nothing like being on top of the billing, huh? But, be a day late in paying a medical bill and they send Vinnie to your house with a baseball bat.
Taylor's appointment with the Neuro-opthamologist for tomorrow has been rescheduled until this Friday, so we should know then if his double vision can be corrected with surgery.
And, Johns Hopkins now has the video of Taylor and we're waiting to hear back from them. Taylor has decided to not take classes this summer and get the facial surgery done if they agree to take his case.
Cross your fingers!
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