Here is a link to keep up to date on Joey, the man we mentioned earlier that was in the chemical explosion last Tuesday night. Stay on your knees for them....
http://www.caringbridge.org/visit/josephwilliams
Tuesday, September 30, 2008
Tuesday
Time for another update...
My hubby is here and Mom is home safely!
I'll try to update in the order events have occured.
First, Mom has met a sweet family here while walking the halls. Their son (28 years old), Joey, received 3rd degree burns to 95% of his body at the Pasadena Petrochemical plant explosion. When he arrived at the hospital, they said he might survive about five hours. The fire was last Tuesday. He's still here with us!! Praise the Lord!
They give me about 10-15 minutes twice a day that I'm allowed to go for a walk and leave the Epilepsy unit. Yesterday we used one of the walks to go meet the family. Wow!! So unbelievable. I'm tearing up as I type this. When we got off the elevator, the entire family was in tears. They told us that his lungs were collapsing and they didn't expect him to make it. After that, his mother took my hand, and the hands of her pastors that were there, and then selflessly asked the pastors to pray for me. Whoa! Her son is clinging to life and she's asking for prayers to be lifted on my behalf. What a humbling moment.
B and I went to check on him today and (drum roll......)
He is doing very well. They put him on a new machine for his lungs and he is doing much better. The docs said that they believe he knocked on Heaven's door about three different times yesterday, but Heaven isn't quite ready for him. So, please pray for Joey; his mother & father, Debbie & Joe; his brother, Sean; his wife, Brandy; and three kiddos.
After that, Mom and I went for a walk outside. Though I have a window in my room, it doesn't quite compare to fresh air. Here we are outside!!! You can see the little bag that I have attached to me at all times with all of the EEG cords and what not...
On his way in, he passed the infamous Red Duke, Aggie Class of '50.
More info on Dr. Duke.
Anyway, he's a trauma surgeon here and is known for walking the halls with his dog, and he actually lives on site. So, B passes him in the hall and stops to say, "Howdy, my name is B Fox, Fightin' Texas Aggie, Class of '02." Dr. Duke turns to B and says, "Nice to meet you and those are some nice britches son." Sorry I don't have a pic of B in his "nice britches," but they were a pair of super colorful plaid shorts.
So, then B gets to the room, I get my hugs, and our friend, Z, got here (Dr. S as I referred to her in the last post). It was fun to get to see her again. She is such a sweet encourager and points us right back to the Lord and His plan and will in all of this.
Today is B's Mom's b-day. So, we started the day with calling to sing Happy Birthday to her. They were trying to repair the sinks in my room and so the singing didn't actually happen, but we got to wish her a Happy Birthday!
This morning, the doc came in and said he doesn't really think the steroids are working. As we were discussing that, I had a seizure...point made. Due to the location, they are beginning to believe that surgery is way too risky of an option. So, I had my last steroid dose today and he's going to do some IV anti-seizure meds tomorrow. Then, he wants to try a couple of weeks at a time on other anti-seizure meds. He said that since I have so many seizures, he thinks the trials can be quick because we will know if it's working very soon. He also told us that the Cleveland Clinic is best known for their specialty of focal epilepsy, whereas, Mayo is a bit more specialized in General Epilepsy. So, I believe we are going to postpone our appt. with Mayo.
However, on that same topic, we mentioned that Dr. Luders would be here next week from Cleveland and that they would present my case. Then, B threw out the idea that I could meet with him. Dr. K jumped on the idea and is going to try to get it scheduled for me to meet face to face with Dr. Luders next Thursday. Dr. Luders is not credentialed here and so any advice he gives me isn't considered the advice of the hospital, but it allows him the opportunity to meet me face to face after seeing my case report and then give them more ideas to pursue. So, we are praising the Lord for that opportunity, as well.
Finally, if any of you are in the Houston area, we would love to see smiling faces. Since I can only leave for about 15 minutes twice a day, it gets a little boring up here. I would typically read, but that seems to cause more seizures.
Thank you all for your prayers!! We are ready for answers!!!
My hubby is here and Mom is home safely!
I'll try to update in the order events have occured.
First, Mom has met a sweet family here while walking the halls. Their son (28 years old), Joey, received 3rd degree burns to 95% of his body at the Pasadena Petrochemical plant explosion. When he arrived at the hospital, they said he might survive about five hours. The fire was last Tuesday. He's still here with us!! Praise the Lord!
They give me about 10-15 minutes twice a day that I'm allowed to go for a walk and leave the Epilepsy unit. Yesterday we used one of the walks to go meet the family. Wow!! So unbelievable. I'm tearing up as I type this. When we got off the elevator, the entire family was in tears. They told us that his lungs were collapsing and they didn't expect him to make it. After that, his mother took my hand, and the hands of her pastors that were there, and then selflessly asked the pastors to pray for me. Whoa! Her son is clinging to life and she's asking for prayers to be lifted on my behalf. What a humbling moment.
B and I went to check on him today and (drum roll......)
He is doing very well. They put him on a new machine for his lungs and he is doing much better. The docs said that they believe he knocked on Heaven's door about three different times yesterday, but Heaven isn't quite ready for him. So, please pray for Joey; his mother & father, Debbie & Joe; his brother, Sean; his wife, Brandy; and three kiddos.
After that, Mom and I went for a walk outside. Though I have a window in my room, it doesn't quite compare to fresh air. Here we are outside!!! You can see the little bag that I have attached to me at all times with all of the EEG cords and what not...
Then, my hubby arrived.
On his way in, he passed the infamous Red Duke, Aggie Class of '50.
More info on Dr. Duke.
Anyway, he's a trauma surgeon here and is known for walking the halls with his dog, and he actually lives on site. So, B passes him in the hall and stops to say, "Howdy, my name is B Fox, Fightin' Texas Aggie, Class of '02." Dr. Duke turns to B and says, "Nice to meet you and those are some nice britches son." Sorry I don't have a pic of B in his "nice britches," but they were a pair of super colorful plaid shorts.
So, then B gets to the room, I get my hugs, and our friend, Z, got here (Dr. S as I referred to her in the last post). It was fun to get to see her again. She is such a sweet encourager and points us right back to the Lord and His plan and will in all of this.
Today is B's Mom's b-day. So, we started the day with calling to sing Happy Birthday to her. They were trying to repair the sinks in my room and so the singing didn't actually happen, but we got to wish her a Happy Birthday!
This morning, the doc came in and said he doesn't really think the steroids are working. As we were discussing that, I had a seizure...point made. Due to the location, they are beginning to believe that surgery is way too risky of an option. So, I had my last steroid dose today and he's going to do some IV anti-seizure meds tomorrow. Then, he wants to try a couple of weeks at a time on other anti-seizure meds. He said that since I have so many seizures, he thinks the trials can be quick because we will know if it's working very soon. He also told us that the Cleveland Clinic is best known for their specialty of focal epilepsy, whereas, Mayo is a bit more specialized in General Epilepsy. So, I believe we are going to postpone our appt. with Mayo.
However, on that same topic, we mentioned that Dr. Luders would be here next week from Cleveland and that they would present my case. Then, B threw out the idea that I could meet with him. Dr. K jumped on the idea and is going to try to get it scheduled for me to meet face to face with Dr. Luders next Thursday. Dr. Luders is not credentialed here and so any advice he gives me isn't considered the advice of the hospital, but it allows him the opportunity to meet me face to face after seeing my case report and then give them more ideas to pursue. So, we are praising the Lord for that opportunity, as well.
Finally, if any of you are in the Houston area, we would love to see smiling faces. Since I can only leave for about 15 minutes twice a day, it gets a little boring up here. I would typically read, but that seems to cause more seizures.
Thank you all for your prayers!! We are ready for answers!!!
Monday, September 29, 2008
Angels Among Us
This weekend has been interesting. Mom has been wonderful (like we expected anything different). She has been at my side at all times. Due to the EEG leads, I can only walk so far (can't leave my room without being unhooked from the machine, which they don't like). So, poor Mom has blisters all over her feet from walking the halls of the hospital to take care of me and go get things for me. Also, we thought we were only going to be here through last Friday. So, we didn't pack enough. Therefore, Mom hand washed all of my clothes Sunday.
As things stand for now, they want to keep me for quite a bit longer than originally intended, possibly through the end of the week. I still had two seizures Sunday, despite being on the third day of the steroids. So, they are going to add two more days to see if we are more likely to get results. If so, they would lean in the direction that this is Hashimoto's Encephalopathy (a.k.a. Steroid-Responsive Encephalopathy Associated with Autoimmune Thyroiditis-SREAT). When the doc came in today, he said he doesn't know if they believe this could be the answer b/c we should have seen more obvious improvement at this point. However, we still need to play it all by ear incase it does work. If it does, how long would I go without a seizure under the current treatment? Would I need to occasionally add steroids to keep them under control? Would I need to have the IgG injections? All up in the air.
If that doesn't work, they are going to start playing with my meds on Wednesday and see if we can get any relief. We have seen that I tend to respond to IV meds rather than oral meds. So, after we see Wednesday's results, they are going to consider that route and see what happens. They can't send me home on IV meds and so they might have to find a way for me to get injections of the meds if that is the only way my body will absorb the meds to get seizure control. They just all keep repeating how rare of a presentation this is...
My nurse on Sunday, E, was wonderful. When he came in Sunday morning, he wanted to know every last detail about my seizure the night before and the ones I had that day and how they were different from any previous seizures. He was so thorough and caring. He's from Scotland and so we have fun talking to him and trying to understand certain parts of his accent! We also got to see pics of his precious son who is such a little cutie!
The doctor that I saw the first time I was here, Dr. S, stopped by Sunday night. He spent about an hour in here explaining to Mom and I what they think is going on...it's all a guess to them right now was the gist. Anyway, they want to hit the Encephalopathy path first. If no response, they will move on to other choices. He said they all spent a bunch of time Friday discussing/arguing my case. It's just a very rare presentation and has them stumped. He also said that Hans Luders, director of the Epilepsy Unit at the Cleveland Clinic, will be here next week. They plan to discuss my case with him, as well, and see if he can add any insight.
They are beginning to believe more and more that these are originating in the insula which to a large degree removes the ability to do surgery. It would be too risky because it's so deep in the brain and would require a lot of digging and could cause major issues with language and vital motor functions. They are also seeing the seizures on both sides of the brain which would make surgery difficult. They need to see if they are actually starting on both sides or starting on one and just progressing to one or the other. So, they want to go back and review the MEG from Wednesday and Friday and see if they can find anything that gives them more direction.
The Endo team should be back today to do an ultrasound of my thyroid and check on the Diabetes Insipidus stuff.
B will be here around noon today. Mom has been trying to get moved in to her new house and I've put a nice kink in that. So, hopefully, she'll be able to accomplish some packing and moving once she gets home. She has been such a blessing this last week. I'll miss her when she's gone.
It will be nice to have my hubby here. It's amazing how the two really do become one. It just doesn't feel right without him here.
Finally, this is a picture of one of the angels here at the hospital. This is Irma, she not only cleans my room, but refreshes my soul. We met her the last time we were here and she was adorable. When Mom and I arrived on Wednesday, we saw here the minute we got off the elevator. She said that the Lord had brought my name to her heart on her way to work that morning and she had been praying for me.
Today, she asked her supervisor if she could come in and clean my room (even though it wasn't on her list of rooms for the day). After she cleaned the room, she prayed with us. I think she does an amazing job speaking English. However, she wanted to pray in Spanish and she made the point that the Lord understands her perfectly. Though I only understood parts of her prayer, I could just see the Lord sitting there understanding her every word and realized that just because I don't understand it, doesn't mean HE doesn't. He knows exactly what is going on with my body, even though the docs are stumped. There were moments in her prayer that I understood what she was saying and others when I didn't at all. There are many times in walking this road that I've seen (or felt like I understood) His plan and other times when I didn't at all. Today's prayer time with Irma, was a reminder to me that HE truly does see the whole picture and understand every bit of it, whether I do or don't. She also said that she and some of her friends were going to meet tonight at 8pm to pray for me and she wanted us to pray, too. She said for us to get as many people as we could praying at 8pm tonight.
As things stand for now, they want to keep me for quite a bit longer than originally intended, possibly through the end of the week. I still had two seizures Sunday, despite being on the third day of the steroids. So, they are going to add two more days to see if we are more likely to get results. If so, they would lean in the direction that this is Hashimoto's Encephalopathy (a.k.a. Steroid-Responsive Encephalopathy Associated with Autoimmune Thyroiditis-SREAT). When the doc came in today, he said he doesn't know if they believe this could be the answer b/c we should have seen more obvious improvement at this point. However, we still need to play it all by ear incase it does work. If it does, how long would I go without a seizure under the current treatment? Would I need to occasionally add steroids to keep them under control? Would I need to have the IgG injections? All up in the air.
If that doesn't work, they are going to start playing with my meds on Wednesday and see if we can get any relief. We have seen that I tend to respond to IV meds rather than oral meds. So, after we see Wednesday's results, they are going to consider that route and see what happens. They can't send me home on IV meds and so they might have to find a way for me to get injections of the meds if that is the only way my body will absorb the meds to get seizure control. They just all keep repeating how rare of a presentation this is...
My nurse on Sunday, E, was wonderful. When he came in Sunday morning, he wanted to know every last detail about my seizure the night before and the ones I had that day and how they were different from any previous seizures. He was so thorough and caring. He's from Scotland and so we have fun talking to him and trying to understand certain parts of his accent! We also got to see pics of his precious son who is such a little cutie!
The doctor that I saw the first time I was here, Dr. S, stopped by Sunday night. He spent about an hour in here explaining to Mom and I what they think is going on...it's all a guess to them right now was the gist. Anyway, they want to hit the Encephalopathy path first. If no response, they will move on to other choices. He said they all spent a bunch of time Friday discussing/arguing my case. It's just a very rare presentation and has them stumped. He also said that Hans Luders, director of the Epilepsy Unit at the Cleveland Clinic, will be here next week. They plan to discuss my case with him, as well, and see if he can add any insight.
They are beginning to believe more and more that these are originating in the insula which to a large degree removes the ability to do surgery. It would be too risky because it's so deep in the brain and would require a lot of digging and could cause major issues with language and vital motor functions. They are also seeing the seizures on both sides of the brain which would make surgery difficult. They need to see if they are actually starting on both sides or starting on one and just progressing to one or the other. So, they want to go back and review the MEG from Wednesday and Friday and see if they can find anything that gives them more direction.
The Endo team should be back today to do an ultrasound of my thyroid and check on the Diabetes Insipidus stuff.
B will be here around noon today. Mom has been trying to get moved in to her new house and I've put a nice kink in that. So, hopefully, she'll be able to accomplish some packing and moving once she gets home. She has been such a blessing this last week. I'll miss her when she's gone.
It will be nice to have my hubby here. It's amazing how the two really do become one. It just doesn't feel right without him here.
Finally, this is a picture of one of the angels here at the hospital. This is Irma, she not only cleans my room, but refreshes my soul. We met her the last time we were here and she was adorable. When Mom and I arrived on Wednesday, we saw here the minute we got off the elevator. She said that the Lord had brought my name to her heart on her way to work that morning and she had been praying for me.
Today, she asked her supervisor if she could come in and clean my room (even though it wasn't on her list of rooms for the day). After she cleaned the room, she prayed with us. I think she does an amazing job speaking English. However, she wanted to pray in Spanish and she made the point that the Lord understands her perfectly. Though I only understood parts of her prayer, I could just see the Lord sitting there understanding her every word and realized that just because I don't understand it, doesn't mean HE doesn't. He knows exactly what is going on with my body, even though the docs are stumped. There were moments in her prayer that I understood what she was saying and others when I didn't at all. There are many times in walking this road that I've seen (or felt like I understood) His plan and other times when I didn't at all. Today's prayer time with Irma, was a reminder to me that HE truly does see the whole picture and understand every bit of it, whether I do or don't. She also said that she and some of her friends were going to meet tonight at 8pm to pray for me and she wanted us to pray, too. She said for us to get as many people as we could praying at 8pm tonight.
"Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven."
Matthew 18:19
Saturday, September 27, 2008
I wonder, as I wander!!
Sorry we haven't updated. Yesterday was a rough day for me. Thursday was a fun day, though. Our friend, Dr. S, came by and spent some good time with us. Then, A came and brought her sweet kiddos.
Here is a pic of all of us. That's Mom hiding in the back there.
A's oldest has become quite the photographer and likes taking pics with my camera each time we see her.
Here is a pic of her sister, S.
This is Mom and baby J.
So, it was wonderful to have sweet visitors. Sadly, A's kids have become used to me having seizures and aren't the least bit scared of them. I had one as they were about to leave. The doc and all of his students were out at the nurses' station and came running in the room to capture it. The oldest was snuggling in the bed with me and she carefully crawled out of the bed and got in the stroller. S, the middle one, got in her stroller and J was already attached to Momma. They all sweetly left so the doc could do what he needed to do...
Then, Dr. S, came back later that night and brought dinner for us. Mom and I had fun catching up with her and she is such an encouragement. I had a seizure while she was here and so she got to do a neuro exam. She said my seizures are very unique in their presentation. I had twelve seizures on Thursday.
Friday was not as fun as I was in testing all day. First, I went back to the MEG to try to capture a seizure. I had one within a few minutes of being in the machine, but he didn't have the machine recording yet. So, they missed it. I laid there another five hours and didn't have one at all. Mom worked to do all the things that have previously triggered seizures. Not a thing. So, they called it a day.
I was supposed to have an Inter-Ictal SPECT that morning, but we found out that you have to be seizure free for six hours before they can do it. It is very rare for me to go six hours without a seizure. So, they were going to cancel the scan. However, I was at about the five hour mark when I left the MEG. So, they decided to send me back down for the SPECT. She gave me the isotope injection and I had a seizure exactly ten minutes later. They say it takes at least ten minutes for it to be absorbed and so the scan might not have worked. After that, I had many more seizures to make the total for the day, NINE.
Dr. K came in later in the day and said that he believes I have one of the most unique presentations he's ever seen and they really aren't sure what is going on with me, but they are concerned because it is "very severe epilepsy." He said that he wants to hold out on surgery because when they went back to review everything, they found that the seizures are occurring on the right and left. We have been told all along that they are only in the left hemisphere. They will typically only attempt surgery if it is on one side of the brain because the other side can make up for the part you've just removed. Thus, surgery becomes very risky in my case and needs to be placed on hold. I didn't want brain surgery. However, it was the first bit of hope that we've felt that these could go away.
They presented my case at the Neuro conference and they all came to the conclusion that we need to rule out Hashimoto's Encephalopathy (say that fast three times-I have yet to be able to say it once without stuttering). Hashimoto's is the thyroid condition I was diagnosed with in 2004. It is an autoimmune (my body attacks itself) condition that attacks the thyroid. Encephalopathy is basically disease of the brain. Here are some links with a little bit of info on Hashimoto's Encephalopathy & Mayo info. Basically, they are saying I could have antibodies that are attacking the neurons in my brain, thus triggering seizures. From what I've read, it appears that there are very few cases diagnosed in the world. One study stated that there are only about thirty reported cases in the world.
The treatment is steroids. Yuck. After finally losing the weight I had gained when I got sick, I don't want it back...yes, I obviously want the seizures gone and my life back. I just don't want to trade it in for different side effects and continuing to feel yucky all the time. They said the dose they are using is very low and it's only for three days. Therefore, I shouldn't experience any real side effects other than possible insomnia and "being mean" when they take me off of it. So, I will apologize now incase I'm mean this next week.
If, after three days of treatments, I do respond to this treatment, they will progress down that route. I asked what the treatment would be and Dr. K didn't want to go there. He said, "we'll cross that bridge when we come to it." From the nurses and others around here, it sounds like the treatment would be low dose steroids and IV IgG injections. Can I say, "I'm ready to feel normal again and get back to normal life." I have had five seizures since starting the meds. So, we'll see.
Yesterday ended with quite a few tears. I just want healing and to feel better. I need to be positive that we are at least thinking "outside of the box." I just want hope that we are on the right path.
We did finally get an endocrine consult and Mom & I were impressed with the Endo team. They are going to run some tests, but want to wait until Monday after we've done the steroid trial.
My sweet friend, Dr. S, was a precious encouragement to me yesterday. She reminded me that Paul had a thorn in his flesh and God's grace is sufficient.
Finally, Dr. K stopped back by today, Saturday, to check in and said that he truly believes my case is one of the most rare he's seen and he's not willing to plan for the future. He just wants to try one thing at a time. We are very impressed with him and his willingness to think outside of the box and look for things no one else has considered.
This is a pic of us today when he stopped by to visit.
They did allow me to go on a walk which was nice. Mom & I wandered through the halls of the hospital. It was just nice to get out of the room and see daylight and breath fresh air.
So, as I say in many posts, if you are still reading (since I tend to type/talk way too much), thank you so much for your love, prayers, and devotion to walking this road with us. I can't do it alone and need my brothers and sisters in the Lord to help us carry this burden as I am so confused right now.
Here is a pic of all of us. That's Mom hiding in the back there.
A's oldest has become quite the photographer and likes taking pics with my camera each time we see her.
Here is a pic of her sister, S.
This is Mom and baby J.
So, it was wonderful to have sweet visitors. Sadly, A's kids have become used to me having seizures and aren't the least bit scared of them. I had one as they were about to leave. The doc and all of his students were out at the nurses' station and came running in the room to capture it. The oldest was snuggling in the bed with me and she carefully crawled out of the bed and got in the stroller. S, the middle one, got in her stroller and J was already attached to Momma. They all sweetly left so the doc could do what he needed to do...
Then, Dr. S, came back later that night and brought dinner for us. Mom and I had fun catching up with her and she is such an encouragement. I had a seizure while she was here and so she got to do a neuro exam. She said my seizures are very unique in their presentation. I had twelve seizures on Thursday.
Friday was not as fun as I was in testing all day. First, I went back to the MEG to try to capture a seizure. I had one within a few minutes of being in the machine, but he didn't have the machine recording yet. So, they missed it. I laid there another five hours and didn't have one at all. Mom worked to do all the things that have previously triggered seizures. Not a thing. So, they called it a day.
I was supposed to have an Inter-Ictal SPECT that morning, but we found out that you have to be seizure free for six hours before they can do it. It is very rare for me to go six hours without a seizure. So, they were going to cancel the scan. However, I was at about the five hour mark when I left the MEG. So, they decided to send me back down for the SPECT. She gave me the isotope injection and I had a seizure exactly ten minutes later. They say it takes at least ten minutes for it to be absorbed and so the scan might not have worked. After that, I had many more seizures to make the total for the day, NINE.
Dr. K came in later in the day and said that he believes I have one of the most unique presentations he's ever seen and they really aren't sure what is going on with me, but they are concerned because it is "very severe epilepsy." He said that he wants to hold out on surgery because when they went back to review everything, they found that the seizures are occurring on the right and left. We have been told all along that they are only in the left hemisphere. They will typically only attempt surgery if it is on one side of the brain because the other side can make up for the part you've just removed. Thus, surgery becomes very risky in my case and needs to be placed on hold. I didn't want brain surgery. However, it was the first bit of hope that we've felt that these could go away.
They presented my case at the Neuro conference and they all came to the conclusion that we need to rule out Hashimoto's Encephalopathy (say that fast three times-I have yet to be able to say it once without stuttering). Hashimoto's is the thyroid condition I was diagnosed with in 2004. It is an autoimmune (my body attacks itself) condition that attacks the thyroid. Encephalopathy is basically disease of the brain. Here are some links with a little bit of info on Hashimoto's Encephalopathy & Mayo info. Basically, they are saying I could have antibodies that are attacking the neurons in my brain, thus triggering seizures. From what I've read, it appears that there are very few cases diagnosed in the world. One study stated that there are only about thirty reported cases in the world.
The treatment is steroids. Yuck. After finally losing the weight I had gained when I got sick, I don't want it back...yes, I obviously want the seizures gone and my life back. I just don't want to trade it in for different side effects and continuing to feel yucky all the time. They said the dose they are using is very low and it's only for three days. Therefore, I shouldn't experience any real side effects other than possible insomnia and "being mean" when they take me off of it. So, I will apologize now incase I'm mean this next week.
If, after three days of treatments, I do respond to this treatment, they will progress down that route. I asked what the treatment would be and Dr. K didn't want to go there. He said, "we'll cross that bridge when we come to it." From the nurses and others around here, it sounds like the treatment would be low dose steroids and IV IgG injections. Can I say, "I'm ready to feel normal again and get back to normal life." I have had five seizures since starting the meds. So, we'll see.
Yesterday ended with quite a few tears. I just want healing and to feel better. I need to be positive that we are at least thinking "outside of the box." I just want hope that we are on the right path.
We did finally get an endocrine consult and Mom & I were impressed with the Endo team. They are going to run some tests, but want to wait until Monday after we've done the steroid trial.
My sweet friend, Dr. S, was a precious encouragement to me yesterday. She reminded me that Paul had a thorn in his flesh and God's grace is sufficient.
9But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 10That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.I can't say that I'm where Paul was, ready to boast about my weakness and delight in my hardships or persecutions, but I have encouragement through God's Word that it can be done. So, I will try to hold to His precious Word, though I am so weak in my flesh right now. I can hardly see through the tears to write this as I want it over....to just end. Please, Lord, healing!!
2 Corinthians 12:9-10
Finally, Dr. K stopped back by today, Saturday, to check in and said that he truly believes my case is one of the most rare he's seen and he's not willing to plan for the future. He just wants to try one thing at a time. We are very impressed with him and his willingness to think outside of the box and look for things no one else has considered.
This is a pic of us today when he stopped by to visit.
They did allow me to go on a walk which was nice. Mom & I wandered through the halls of the hospital. It was just nice to get out of the room and see daylight and breath fresh air.
So, as I say in many posts, if you are still reading (since I tend to type/talk way too much), thank you so much for your love, prayers, and devotion to walking this road with us. I can't do it alone and need my brothers and sisters in the Lord to help us carry this burden as I am so confused right now.
Friday, September 26, 2008
Friday 10:00 AM Update
I am sure that many are wondering what type of scans M is having done. Here are a couple of links that you can view to get caught up on the types of scans that M is having done. Today, the goal is get a SPECT scan done (without the isotope- establish a baseline) and then have her "camp" out in the MEG scan again (similar to Wednesday) and capture more seizures.
Epilepsy Links- types of scans
SPECT Scan(s)
SPECT Scan(s) 2
Thanks to all our faithful prayer warriors! This trip to Houston has been good. As M mentioned we have a different Epileptologist this week, which means we get more additional eyes on M's case. So far, we are continuing to be impressed with our time at Hermann. Dr. "K" has shared with M and her mom that having you here and getting the same results is not the best use of your time here....so, his focus is to try and get new data, new results and try some things that have not been tried before.
All along, we have felt that for M's case, there was more to it than just Epilepsy. Dr. "K" would also lead us to believe that. In fact, today M is supposed to have a consult today with a Thyroid Specialist to consider how M's thyroid and hormones may possibly play into her Epilepsy. So please pray for her time and the continued thoughtful consideration that the physicians and staff of Hermann are giving M.
Further Prayer: As M mentioned the other day, it appears that her seizures may in fact lie much deeper than the Temporal Lobe and might be originating in the Insular Cortex. While we might be getting closer to an answer, truly diagnosing, treating this might be difficult. We are anxious for the physician's insight and we'll probably know more after their conference this afternoon (around 1:00 - 3:00 pm).
More news- It appears that M is having seizures on both sides of the brain (both temporal lobes). Pray that this will not be so, but rather it is a spreading of the seizure...but if it is so, that the physicians will be able to treat the problem.
Thanks for checking in, and hopefully we'll get lots of answers from this trip. Dr. "K" is wanting to keep Meredith for as long as possible to get as much info as possible. So, this might mean that M will not be coming back home for a few more days. Again, we'll know more after this afternoon.
Epilepsy Links- types of scans
SPECT Scan(s)
SPECT Scan(s) 2
Thanks to all our faithful prayer warriors! This trip to Houston has been good. As M mentioned we have a different Epileptologist this week, which means we get more additional eyes on M's case. So far, we are continuing to be impressed with our time at Hermann. Dr. "K" has shared with M and her mom that having you here and getting the same results is not the best use of your time here....so, his focus is to try and get new data, new results and try some things that have not been tried before.
All along, we have felt that for M's case, there was more to it than just Epilepsy. Dr. "K" would also lead us to believe that. In fact, today M is supposed to have a consult today with a Thyroid Specialist to consider how M's thyroid and hormones may possibly play into her Epilepsy. So please pray for her time and the continued thoughtful consideration that the physicians and staff of Hermann are giving M.
Further Prayer: As M mentioned the other day, it appears that her seizures may in fact lie much deeper than the Temporal Lobe and might be originating in the Insular Cortex. While we might be getting closer to an answer, truly diagnosing, treating this might be difficult. We are anxious for the physician's insight and we'll probably know more after their conference this afternoon (around 1:00 - 3:00 pm).
More news- It appears that M is having seizures on both sides of the brain (both temporal lobes). Pray that this will not be so, but rather it is a spreading of the seizure...but if it is so, that the physicians will be able to treat the problem.
Thanks for checking in, and hopefully we'll get lots of answers from this trip. Dr. "K" is wanting to keep Meredith for as long as possible to get as much info as possible. So, this might mean that M will not be coming back home for a few more days. Again, we'll know more after this afternoon.
Wednesday, September 24, 2008
What a day!!
Update for the day:
Once we arrived, I got hooked up with all of the EEG leads...
Within a few minutes of that, our dear friend Dr. S (friend from college, now a big time doctor here) stopped by...
Then, the doc that is on the unit this week came in...
Went down to the MEG. Praise the Lord, I had a seizure within a few minutes of getting in the MEG. However, they don't know if they caught that one. Then, I had another one while they were in the room with me adjusting some stuff. So, they didn't get that one. Then, we waited another three hours and nothing. So, I will possibly go back tomorrow or Friday to try for more.
I got back to the room and took the brownies and cookies to the nurses that I made for them. On the way to them, we passed the neurosurgeon. So, Mom got to meet him. Then, the doc that is seeing me this week walked up...so, they all got to sit and talk about the proper way to treat me.
Once I was back in the room, I had a seizure and the doc on call was able to get in here and witness it. He was then able to do the exam he wanted to do during the seizure and stayed for about an hour afterward to ask questions. A lot of the concerns we've had from the beginning (that we've been told to not be concerned about) were concerns of his. He is going to order an Endocrinology consult tomorrow to look at how my thyroid or Diabetes Insipidus could play in to this. He agrees that it doesn't make sense for a 27 year old woman to start having seizures out of no where. He said he feels we need to really think outside of the box and try to uncover some answers. He also believes these are originating in the Insula. I had never heard of it until today. However, it makes a lot of sense with the research we've done. Our sweet friend, Dr. S, did some research tonight while on the phone with us, to confirm a lot of what he said. So, maybe we are finally moving in the right direction. I sure hope so.
Today has been a long day, as we had to leave the hotel by 7am, I've had nine seizures so far, we've packed and unpacked quite a few times, and didn't really get much food today due to the timing of all the tests. So, we are ready for bed.
When we wake up in the morning, they are going to move me to the pediatric unit. They feel that they gave me the Radioactive Isotope too late last time (you have to get it within so many seconds of the start of the seizure). The hospital rule is that it has to be kept in this lead lined locker of sorts. At Medical City, they kept it in my room and so it was quick to get the injection. However, the "lead locker" is pretty far from my room here. It is in the pedi section. So, they will move me over there tomorrow morning and then we will start praying for another seizure once the isotope is ready.
Now, off to bed and I'll share more updates tomorrow.
Once we arrived, I got hooked up with all of the EEG leads...
Within a few minutes of that, our dear friend Dr. S (friend from college, now a big time doctor here) stopped by...
Then, the doc that is on the unit this week came in...
Went down to the MEG. Praise the Lord, I had a seizure within a few minutes of getting in the MEG. However, they don't know if they caught that one. Then, I had another one while they were in the room with me adjusting some stuff. So, they didn't get that one. Then, we waited another three hours and nothing. So, I will possibly go back tomorrow or Friday to try for more.
I got back to the room and took the brownies and cookies to the nurses that I made for them. On the way to them, we passed the neurosurgeon. So, Mom got to meet him. Then, the doc that is seeing me this week walked up...so, they all got to sit and talk about the proper way to treat me.
Once I was back in the room, I had a seizure and the doc on call was able to get in here and witness it. He was then able to do the exam he wanted to do during the seizure and stayed for about an hour afterward to ask questions. A lot of the concerns we've had from the beginning (that we've been told to not be concerned about) were concerns of his. He is going to order an Endocrinology consult tomorrow to look at how my thyroid or Diabetes Insipidus could play in to this. He agrees that it doesn't make sense for a 27 year old woman to start having seizures out of no where. He said he feels we need to really think outside of the box and try to uncover some answers. He also believes these are originating in the Insula. I had never heard of it until today. However, it makes a lot of sense with the research we've done. Our sweet friend, Dr. S, did some research tonight while on the phone with us, to confirm a lot of what he said. So, maybe we are finally moving in the right direction. I sure hope so.
Today has been a long day, as we had to leave the hotel by 7am, I've had nine seizures so far, we've packed and unpacked quite a few times, and didn't really get much food today due to the timing of all the tests. So, we are ready for bed.
When we wake up in the morning, they are going to move me to the pediatric unit. They feel that they gave me the Radioactive Isotope too late last time (you have to get it within so many seconds of the start of the seizure). The hospital rule is that it has to be kept in this lead lined locker of sorts. At Medical City, they kept it in my room and so it was quick to get the injection. However, the "lead locker" is pretty far from my room here. It is in the pedi section. So, they will move me over there tomorrow morning and then we will start praying for another seizure once the isotope is ready.
Now, off to bed and I'll share more updates tomorrow.
Tuesday, September 23, 2008
Once again...
...off to H-town.
Mom and I leave today to head to Houston. I will check in to the hospital tomorrow morning and almost immediately go camp out in the MEG. My understanding is that I will be in there until I have a seizure.
Then, the goal is to have the radioactive isotope ready, have another seizure, get the injection, and have the scan. Then, 24 hours after that seizure, I repeat the scan (this creates a baseline). The other goal is for me to have some seizures in the room, looking directly at the camera. They have never seen my face and eyes during a seizure. Since I am so sensitive to light and sound, I typically roll over, bury my head, and cover my eyes. The last time we were there, they told us what they needed. So, B tried to hold me still for the camera and hold my eyes open. I apparently convulsed a bit. So, prayers that Mom can have her game on and be ready to hold me still and hold my eyes open.
Also, please pray for Mom because she is quite sick. We don't know what is going on, but she's been sick for about two weeks. She saw the doc yesterday and they've given her an antibiotic and some other meds. However, it will be a few weeks before any of the test results are back. So, prayers that she can get well quickly for this trip.
B has a very important test for work tomorrow (if he doesn't take it, he gets a $1000 fine) and then he has some continuing education that he has to do on Thursday. So, it's not possible for him to go on this trip. I'm going to miss my hubby so much. He takes such good care of me.
So, please pray for B to do so well on his test and for Mom to get better. Please also pray that she is able to sleep while at the hospital. She stays up late, with the TV on until all hours of the night. B & I like to sleep in a dark, quiet room. So, this will be a challenge for her (not to mention she'll be in a fold out chair).
Thank you all for being such amazing prayer warriors. I've been a bit weepy about this trip. I have some ideas as to why, but in the end, have no clue as to why. I'm just so ready for this to be over so that everyone can get on with their lives. I feel like I am holding B back, holding Mom back, holding everyone back from living their lives. Again, thank you so much for your prayers!!!
Mom and I leave today to head to Houston. I will check in to the hospital tomorrow morning and almost immediately go camp out in the MEG. My understanding is that I will be in there until I have a seizure.
Then, the goal is to have the radioactive isotope ready, have another seizure, get the injection, and have the scan. Then, 24 hours after that seizure, I repeat the scan (this creates a baseline). The other goal is for me to have some seizures in the room, looking directly at the camera. They have never seen my face and eyes during a seizure. Since I am so sensitive to light and sound, I typically roll over, bury my head, and cover my eyes. The last time we were there, they told us what they needed. So, B tried to hold me still for the camera and hold my eyes open. I apparently convulsed a bit. So, prayers that Mom can have her game on and be ready to hold me still and hold my eyes open.
Also, please pray for Mom because she is quite sick. We don't know what is going on, but she's been sick for about two weeks. She saw the doc yesterday and they've given her an antibiotic and some other meds. However, it will be a few weeks before any of the test results are back. So, prayers that she can get well quickly for this trip.
B has a very important test for work tomorrow (if he doesn't take it, he gets a $1000 fine) and then he has some continuing education that he has to do on Thursday. So, it's not possible for him to go on this trip. I'm going to miss my hubby so much. He takes such good care of me.
So, please pray for B to do so well on his test and for Mom to get better. Please also pray that she is able to sleep while at the hospital. She stays up late, with the TV on until all hours of the night. B & I like to sleep in a dark, quiet room. So, this will be a challenge for her (not to mention she'll be in a fold out chair).
Thank you all for being such amazing prayer warriors. I've been a bit weepy about this trip. I have some ideas as to why, but in the end, have no clue as to why. I'm just so ready for this to be over so that everyone can get on with their lives. I feel like I am holding B back, holding Mom back, holding everyone back from living their lives. Again, thank you so much for your prayers!!!
Monday, September 22, 2008
Mommas
Let's also say a special prayer for all of the Mommas that have made the brave decision to allow families to adopt their precious angels.
Everything to Me
If you'd like, here is the Story Behind the Song
Everything to Me
If you'd like, here is the Story Behind the Song
Soldiers
Let's all say a special prayer today for those fighting for us and for the sacrifices their families are making, too.
Watch this video
Remember our friend that came back from Iraq in April? He has been redeployed due to Hurricane Ike. Praise the Lord he is closer to home, but he's not at home with his family.
Watch this video
Remember our friend that came back from Iraq in April? He has been redeployed due to Hurricane Ike. Praise the Lord he is closer to home, but he's not at home with his family.
Saturday, September 20, 2008
It's the weekend!!
Well, it's been a crazy week. I hit the big 100 mark for seizures for the month. I'm already at 106. I am so ready for these to be over. That leads us to this next week. Now that insurance has approved the stay (thank you, LORD), I will be admitted to the hospital in Houston on Wednesday. Mom is going to go with me this time. She wants to meet the docs and get a feel for them.
We are finding that the more I drink water, the more likely I seem to be to have them. We have yet to find a doc that will humor the idea, other than the 4th year Med Student that rounded on me last time. He went home, researched it, and came back with some ideas. However, none of the docs would go with the idea. One day last week, I tested the theory and didn't drink anything until about 2:20p. I didn't have any seizures that day until about an hour after I started drinking the water. I had very little water that day and didn't have any more seizures after that one. The first one the next day was much later in the night than they usually are...I woke up the next morning and started drinking water and had five that day. Anyone want to contribute theories?
I will camp out in the MEG machine Wednesday until I have a seizure. Then, I will go back to my room and prepare to be injected with radioactive stuff!! It's called an Ictal Spect. They have to inject me with the radioactive stuff within so many seconds of the seizure occurring and then get me down to the Spect. Twenty four hours later, they will do the scan again. It is basically creating a baseline. Then, they want to catch some seizures with me actually looking at the camera in the room. I typically turn to the left and hide my head because I become so sensitive to light and sound. They need to see what my eyes and face are doing, though. Hopefully, we will be done by Friday and get to come home.
We got to have a fun date night last night. We intended to go have a quick dinner and get back home because B has to do a lot of studying this weekend for a big test he has for work this next week. However, B was given tickets to the Rangers game vs. the Angels. One of the guys B works with gave us the tickets. We just thought they would be bleacher seats.
When we arrived, we found we were in a box and some of the other reps from B's company were there with their wives. So, we had a great time with everyone. Apparently, the girl that is part of the Kidd Kraddick in the morning show, Candice Lopez, was there in the box, too. She was singing the intro song for some of the people right before we left.
B played Little League ball with Mark Teixeira (who now plays for the Angels, but used to be a Ranger). Mark burned some serious bridges in Texas when he left. I think B and I were the only two people in the ballpark that weren't booing when he was up to bat. When Mark played for the Rangers he apparently got us some tickets to one of the games, but we didn't get to see him because he was on the DL.
So, we decided at the bottom of the eighth to go to the Angels Dugout and say hello. Let's just say, it appears that baseball fame has gotten to his head or he is flat scared of Rangers' fans. We were standing at the dugout yelling for him. However, he would not look up at all. B also left a message at his parents' house letting them know we were going, just incase they were able to speak with him before the game. While we were down by the dugout, we looked over and there was Nolan Ryan.
We got a few shots of Mark. Sad to see fame and fortune get to people!
When we got back to the truck, the car next to us had a dead battery and asked if they could borrow jumper cables. B was talking to the guy and he told B that one of his best friends from college, SJ, was from Rockwall. That his parents still live there. Turns out his friend's Mom is one of my Mom's best friends!! To make it even more random, I even drove SJ's car once in high school when my car was broken down. Such a small world.
Anyway, we got back very late last night, but had a fun date night. I'll sure miss my sweet hubby this next week while I'm gone.
We are finding that the more I drink water, the more likely I seem to be to have them. We have yet to find a doc that will humor the idea, other than the 4th year Med Student that rounded on me last time. He went home, researched it, and came back with some ideas. However, none of the docs would go with the idea. One day last week, I tested the theory and didn't drink anything until about 2:20p. I didn't have any seizures that day until about an hour after I started drinking the water. I had very little water that day and didn't have any more seizures after that one. The first one the next day was much later in the night than they usually are...I woke up the next morning and started drinking water and had five that day. Anyone want to contribute theories?
I will camp out in the MEG machine Wednesday until I have a seizure. Then, I will go back to my room and prepare to be injected with radioactive stuff!! It's called an Ictal Spect. They have to inject me with the radioactive stuff within so many seconds of the seizure occurring and then get me down to the Spect. Twenty four hours later, they will do the scan again. It is basically creating a baseline. Then, they want to catch some seizures with me actually looking at the camera in the room. I typically turn to the left and hide my head because I become so sensitive to light and sound. They need to see what my eyes and face are doing, though. Hopefully, we will be done by Friday and get to come home.
We got to have a fun date night last night. We intended to go have a quick dinner and get back home because B has to do a lot of studying this weekend for a big test he has for work this next week. However, B was given tickets to the Rangers game vs. the Angels. One of the guys B works with gave us the tickets. We just thought they would be bleacher seats.
When we arrived, we found we were in a box and some of the other reps from B's company were there with their wives. So, we had a great time with everyone. Apparently, the girl that is part of the Kidd Kraddick in the morning show, Candice Lopez, was there in the box, too. She was singing the intro song for some of the people right before we left.
B played Little League ball with Mark Teixeira (who now plays for the Angels, but used to be a Ranger). Mark burned some serious bridges in Texas when he left. I think B and I were the only two people in the ballpark that weren't booing when he was up to bat. When Mark played for the Rangers he apparently got us some tickets to one of the games, but we didn't get to see him because he was on the DL.
So, we decided at the bottom of the eighth to go to the Angels Dugout and say hello. Let's just say, it appears that baseball fame has gotten to his head or he is flat scared of Rangers' fans. We were standing at the dugout yelling for him. However, he would not look up at all. B also left a message at his parents' house letting them know we were going, just incase they were able to speak with him before the game. While we were down by the dugout, we looked over and there was Nolan Ryan.
We got a few shots of Mark. Sad to see fame and fortune get to people!
When we got back to the truck, the car next to us had a dead battery and asked if they could borrow jumper cables. B was talking to the guy and he told B that one of his best friends from college, SJ, was from Rockwall. That his parents still live there. Turns out his friend's Mom is one of my Mom's best friends!! To make it even more random, I even drove SJ's car once in high school when my car was broken down. Such a small world.
Anyway, we got back very late last night, but had a fun date night. I'll sure miss my sweet hubby this next week while I'm gone.
Monday, September 15, 2008
High & Tight
For those of you that know my hubby, you will see the sacrifice in this. If I do have the surgery and they shave my head, B had said he would shave his head. I told him that wasn't that big of a sacrifice since:
1.) he's a boy (Man) & they like short hair
2.) he was in the Fightin' Texas Aggie Corps of Cadets
3.) he likes his hair short (high & tight)
So, instead, his sacrifice is going to be that he does NOT cut his hair until surgery occurs. This is HUGE for him!!! He does not like his hair long. So, encourage his long hair when you see him!!!
1.) he's a boy (Man) & they like short hair
2.) he was in the Fightin' Texas Aggie Corps of Cadets
3.) he likes his hair short (high & tight)
So, instead, his sacrifice is going to be that he does NOT cut his hair until surgery occurs. This is HUGE for him!!! He does not like his hair long. So, encourage his long hair when you see him!!!
Hmmmm...
....where to begin?!?!
Praise the Lord my hubby is cancer FREE!!! I can't thank the Lord enough!! Wow!!
Please pray for all those struggling in Houston. Many of our friends are without power, have damage to their homes, etc. Pray for their peace and safety during this time.
Due to all that is going on in Houston, we don't know when I will be admitted back in to the hospital. I am so ready for this to be over, though. I have had over eighty seizures since September 1st. Thus, I'm exhausted and just want to get to the bottom of this. We are still calling Mayo each day to see if they have earlier appointments.
A dear friend of ours is a Pediatric Neurologist in Houston. We were able to speak to her the other day and she went and had a face to face conversation with my Epileptologist to make sure that we were on the right path and leaving no stone unturned. She is now in agreement that we are on the right path. On that note, we haven't made a final decision, but we are beginning to wonder if we should go to Mayo or if we should just keep this ball rolling in Houston.
First, Mayo will be very expensive (i.e., airfare, hotel for at least a week, food, etc.).
Second, if they say, "yep, you're doing what you're supposed to," we've only delayed getting this taken care of...
Third, insurance has made this tough enough and adding one more clinic wanting to do tests could complicate coverage for surgery, if that is what is needed.
Finally, my Neurologist has a friend that is on staff in the Neurology clinic at Mayo. He has already contacted her on our behalf. We are going to see if he would be willing to get them to review my records before I arrive. That way, if we are on the right path, we can avoid the trip and delaying necessary treatment.
So, lots of balls up in the air right now.
We covet your prayers! Thank you so much!!
Praise the Lord my hubby is cancer FREE!!! I can't thank the Lord enough!! Wow!!
Please pray for all those struggling in Houston. Many of our friends are without power, have damage to their homes, etc. Pray for their peace and safety during this time.
Due to all that is going on in Houston, we don't know when I will be admitted back in to the hospital. I am so ready for this to be over, though. I have had over eighty seizures since September 1st. Thus, I'm exhausted and just want to get to the bottom of this. We are still calling Mayo each day to see if they have earlier appointments.
A dear friend of ours is a Pediatric Neurologist in Houston. We were able to speak to her the other day and she went and had a face to face conversation with my Epileptologist to make sure that we were on the right path and leaving no stone unturned. She is now in agreement that we are on the right path. On that note, we haven't made a final decision, but we are beginning to wonder if we should go to Mayo or if we should just keep this ball rolling in Houston.
First, Mayo will be very expensive (i.e., airfare, hotel for at least a week, food, etc.).
Second, if they say, "yep, you're doing what you're supposed to," we've only delayed getting this taken care of...
Third, insurance has made this tough enough and adding one more clinic wanting to do tests could complicate coverage for surgery, if that is what is needed.
Finally, my Neurologist has a friend that is on staff in the Neurology clinic at Mayo. He has already contacted her on our behalf. We are going to see if he would be willing to get them to review my records before I arrive. That way, if we are on the right path, we can avoid the trip and delaying necessary treatment.
So, lots of balls up in the air right now.
We covet your prayers! Thank you so much!!
Friday, September 12, 2008
P.S.
Yesterday was the two year anniversary of the day B was diagnosed with cancer. It was wonderful to be able to Praise the Lord that he is healed!!!
Thursday, September 11, 2008
Praise HIM!!
Take the shackles off my feet so I can dance, I just want to praise HIM!!!
Last night was a tough night with lots of seizures and then waking up knowing we weren't going to get to Houston due to the weather was frustrating.
Then, our sweet friend from the hospital that handles all of the insurance stuff just called and despite all odds...insurance approved THREE days. She only asked for two! Praise HIM! She said that she thought we were "prayed up!" It was special to say, "Yes, Ma'am," and tell her about this site and all of you amazing prayer warriors calling out to the Lord on our behalf!! Thank you and Thank HIM! He has heard our cries and answered in abundance!!!
Last night was a tough night with lots of seizures and then waking up knowing we weren't going to get to Houston due to the weather was frustrating.
Then, our sweet friend from the hospital that handles all of the insurance stuff just called and despite all odds...insurance approved THREE days. She only asked for two! Praise HIM! She said that she thought we were "prayed up!" It was special to say, "Yes, Ma'am," and tell her about this site and all of you amazing prayer warriors calling out to the Lord on our behalf!! Thank you and Thank HIM! He has heard our cries and answered in abundance!!!
yIKEs
Well, we have decided not to go to Houston due to Ike. I sent an e-mail to the Neurosurgeon last night, telling him our concern. He e-mailed me back in agreement and said he might try to call today. We had a friend call us this morning and give us an update on all of the evacuations. They are increasing the mandatory evacuations, have closed school districts, and are making all of the toll roads free to allow people to get out quicker...
Pray for safety for all of the families trying to get out of Houston now due to this storm.
Also, my sweet friend that came to visit with her three kiddos while I was in the hospital is still in Houston. Her hubby is out of town, but was able to get his flight changed to get home sooner. Pray that they are able to get out safely once he arrives home.
Pray for safety for all of the families trying to get out of Houston now due to this storm.
Also, my sweet friend that came to visit with her three kiddos while I was in the hospital is still in Houston. Her hubby is out of town, but was able to get his flight changed to get home sooner. Pray that they are able to get out safely once he arrives home.
Wednesday, September 10, 2008
Neurosurgeon visit
Still praising the Lord that Ben is cancer FREE!! Thank you all for your prayers!
My appt. with the Neurosurgeon is at 1pm tomorrow. Mom is planning to take me. We are trying to make decisions for tomorrow. Ike shouldn't hit while we are there or affect my appt. However, due to all of the evacuations, we are afraid we might get stuck trying to get out of Houston tomorrow. So, we have put in some calls to a few of our friends in Houston to see what it looks like...
We are praying we can make this appt. work....
My appt. with the Neurosurgeon is at 1pm tomorrow. Mom is planning to take me. We are trying to make decisions for tomorrow. Ike shouldn't hit while we are there or affect my appt. However, due to all of the evacuations, we are afraid we might get stuck trying to get out of Houston tomorrow. So, we have put in some calls to a few of our friends in Houston to see what it looks like...
We are praying we can make this appt. work....
Tuesday, September 9, 2008
Cancer Free
Having just received the phone call from M, I had to quickly share our joy with our amazing prayer warriors......B is officially cancer free!! We have so needed good news as the path to wellness for M is still a bumpy road for all of us.
While our faith in God is unshaken, it is the road blocks thrown in place by the insurance company that challenge our spirit. I want to ask the person making these decisions, "What if this were your Child??" M is my baby and without the proper diagnostic tools (currently being denied) the surgeons cannot determine the origin of the seizures. They need to know "where to cut" as this is such a sensitive surgery!!
Please give thanks to God for B's all clear report and while you are on your knees, please pray that the bureaucrat that is refusing the necessary tests for M will experience a transformation and approve any and all modalities needed for her recovery. I long for the day we can share with you that good news!!
Love and Thanks,
Darlene
While our faith in God is unshaken, it is the road blocks thrown in place by the insurance company that challenge our spirit. I want to ask the person making these decisions, "What if this were your Child??" M is my baby and without the proper diagnostic tools (currently being denied) the surgeons cannot determine the origin of the seizures. They need to know "where to cut" as this is such a sensitive surgery!!
Please give thanks to God for B's all clear report and while you are on your knees, please pray that the bureaucrat that is refusing the necessary tests for M will experience a transformation and approve any and all modalities needed for her recovery. I long for the day we can share with you that good news!!
Love and Thanks,
Darlene
Monday, September 8, 2008
Just Kidding
Well, I was supposed to check back in to the hospital tomorrow (Tuesday) morning. The neurosurgeon wants to run a few more tests before he places the electrodes directly on my brain. However, as of today, insurance will not approve it. They say I've been admitted for monitoring too many times...you're telling me....however, we don't want him to go in blindly placing electrodes.
So, it appears that my stay in the hospital this week will not happen. B and I will drive to Houston tomorrow for his follow up visit with MD Anderson. He had all of his scans run last week and will get the results tomorrow...two days shy of the two year anniversary of his diagnosis. Please pray for clean results...cancer FREE!!!!
We need to drop a bunch of records off at the neurosurgeon's office and will go say hello to the nurses in the Epilepsy unit and then come straight back to Dallas. Thursday, Mom and I will go back to Houston. I have an appt. with the neurosurgeon to review all the options, etc...
We are praying that the right doors open and close, but also want to make sure that we are fighting for things when we should be...Please pray for our discernment in that.
The lady that handles insurance for the hospital said that this might make the Mayo visit super difficult (insurance-wise) since she's had so many problems getting things approved. So, again, more prayers...may HE give us a peace and obvious direction...safety in all of our travels this week.
So, it appears that my stay in the hospital this week will not happen. B and I will drive to Houston tomorrow for his follow up visit with MD Anderson. He had all of his scans run last week and will get the results tomorrow...two days shy of the two year anniversary of his diagnosis. Please pray for clean results...cancer FREE!!!!
We need to drop a bunch of records off at the neurosurgeon's office and will go say hello to the nurses in the Epilepsy unit and then come straight back to Dallas. Thursday, Mom and I will go back to Houston. I have an appt. with the neurosurgeon to review all the options, etc...
We are praying that the right doors open and close, but also want to make sure that we are fighting for things when we should be...Please pray for our discernment in that.
The lady that handles insurance for the hospital said that this might make the Mayo visit super difficult (insurance-wise) since she's had so many problems getting things approved. So, again, more prayers...may HE give us a peace and obvious direction...safety in all of our travels this week.
Saturday, September 6, 2008
Here we go again...
Sept 11 of 2006 my wife shared news with me that would change our lives forever. "You have cancer...." While many of you were praying that M would have a seizure as the isotope was expiring, we were actually visiting with M's Epileptologist and Neurosurgeon. The news that we received almost exactly two years ago was somehow a similar song. No, M does not have cancer... However, things are looking more and more to brain surgery as her only option. The major downfall though is that they still do not know where the seizures originate....
Grief and sadness were met as we were looking for a perfect answer to what has been such a long 2.5 years for M. At this time, they have the seizure located on the left hemisphere of the brain. From there, they are not quite sure if it is located in the frontal orbital, left temporal, or maybe even in the left occipital lobe. It is possible that the seizure originates in the frontal lobe and then propogates itself to the rear across the left temporal.
So, the game plan now is to bring M back on Tuesday for more scanning. The main objective and goal is for her to have a seizure while "camping" out in the MEG scan that we did earlier in the week. As you read before, the MEG scan is able to pinpoint the point of origin of the seizure without a seizure occuring. However, it would be best in M's case to have a seizure while in the scan. She had a seizure in the MEG Thursday, but the scan had just been turned off and they did not capture the seizure. So pack your bags and we'll see how long she will need to be in the scan until she has a seizure. Furthermore, they also need to to do an ictal spect and an inter-ictal spect scan.
Rambling...sorry, while visiting with the docs Friday afternoon, M had not had a seizure throughout the entire day. Right...so of all the days we needed her to have a seizure, she could not. As the docs are visiting with us, the isotope expires. So, no scan...but then 15 mins later she has one in the presence of the doc. We rush to get the isotope hoping we can still use it. M is then taken to the the Ictal Spect scan. After the scan she is able to review and look at some of the images from the scan. It would appear that the isotope worked as we were able to see "hot spots" in the frontal lobe and also in the left occipital...hmmmm.
And the rest of the story...We have checked out of the hospital, checked into a hotel over night and will be headed home in a bit. We have felt like our time here may not have led us any closer, but maybe has confirmed that surgery is our only option. Prior to any surgery we still need to do two more scans, one of the docs wants her to start a new med, and then we need to enter into phase 2 and place electrodes on M's brain.
Like always, prayers:
- M will have peace throughout this process and God will continue to lead us.
- Docs will be able to pinpoint the exact location of the seizure.
- Docs will listen carefully to M & her symptoms.
- Mayo appointment will be able to be moved up
- When we come back on Tuesday, our time there will "show us everything."
- God to be glorified in all this!
B
Grief and sadness were met as we were looking for a perfect answer to what has been such a long 2.5 years for M. At this time, they have the seizure located on the left hemisphere of the brain. From there, they are not quite sure if it is located in the frontal orbital, left temporal, or maybe even in the left occipital lobe. It is possible that the seizure originates in the frontal lobe and then propogates itself to the rear across the left temporal.
So, the game plan now is to bring M back on Tuesday for more scanning. The main objective and goal is for her to have a seizure while "camping" out in the MEG scan that we did earlier in the week. As you read before, the MEG scan is able to pinpoint the point of origin of the seizure without a seizure occuring. However, it would be best in M's case to have a seizure while in the scan. She had a seizure in the MEG Thursday, but the scan had just been turned off and they did not capture the seizure. So pack your bags and we'll see how long she will need to be in the scan until she has a seizure. Furthermore, they also need to to do an ictal spect and an inter-ictal spect scan.
Rambling...sorry, while visiting with the docs Friday afternoon, M had not had a seizure throughout the entire day. Right...so of all the days we needed her to have a seizure, she could not. As the docs are visiting with us, the isotope expires. So, no scan...but then 15 mins later she has one in the presence of the doc. We rush to get the isotope hoping we can still use it. M is then taken to the the Ictal Spect scan. After the scan she is able to review and look at some of the images from the scan. It would appear that the isotope worked as we were able to see "hot spots" in the frontal lobe and also in the left occipital...hmmmm.
And the rest of the story...We have checked out of the hospital, checked into a hotel over night and will be headed home in a bit. We have felt like our time here may not have led us any closer, but maybe has confirmed that surgery is our only option. Prior to any surgery we still need to do two more scans, one of the docs wants her to start a new med, and then we need to enter into phase 2 and place electrodes on M's brain.
Like always, prayers:
- M will have peace throughout this process and God will continue to lead us.
- Docs will be able to pinpoint the exact location of the seizure.
- Docs will listen carefully to M & her symptoms.
- Mayo appointment will be able to be moved up
- When we come back on Tuesday, our time there will "show us everything."
- God to be glorified in all this!
B
Friday, September 5, 2008
12 Minutes
We have 12 minutes until the Isotope expires. I need to have a seizure in 12 minutes. Pray, pray!
PRAY
As crazy as it sounds, start praying now for a seizure to occur quickly. They need to do a test that requires me to have a seizure. The isotope is here and is only good for a few hours. They also need to get the results back in a few hours. So, it needs to happen soon! Start praying, you awesome prayer warriors!!!!!!
Thursday, September 4, 2008
MEGa MRI
Today was another crazy day. Sorry for no update yesterday. Don't know if you saw the comment, but our friend did well in surgery and is getting good hugs from his sweet little girl!
Yesterday was nutso...They came in, early in the morning, to take me for my MEG (Magnetoencephalogram). There are about eight of these machines in the entire U.S. which is one of the main reasons we came to this hospital. It is the test that should be able to pinpoint much more specifically where the seizures are originating. So, they walk in the room and ask if I have any metal in my mouth. I have two permanent retainers. They told me they would have to cancel the scan until I could have them removed. What?? I asked if they had a way to remove them. No! So, what should we do? Gosh, ma'am, we don't know. B reminded me that we were next door to the Dental School. So, I called the ortho department and they sent a student over to remove them. I was told if they were out by 12:30p, then I could have the scan done yesterday. She finished at 12:22p. However, they said it would have to wait until today.
B had an early morning appt. and my scan was scheduled for 8:30a. So, they came to get me (said it would take about an hour). B got back from his appt. and was able to meet me at the MEG scan. Then, they took all of the leads off my head and sent me for an MRI when the MEG was completed. I had a bunch of MRIs done in Dallas, but they needed one done with MEG protocol. I assumed it was about 11ish when they finished the MRI (it was after 1pm)!!! Thought I was hungry...that explained it. Also, they didn't have to put the leads back in because I have had so many seizures while here, they don't need to capture anymore on the EEG.
As we were getting off the elevator, I looked over and saw my sweet friend with her three little ones in the waiting room. So, the girls jumped on the guerney with me and rode to the room. When we got to the room, one of my Mom's dear friends from elementary school was waiting in the room for us. She had lunch, flowers, and a gift for me to give to one of the precious staff members here that helped us get in for this visit. Then, one of the nurses needed to come in and redo my IV. So, I had two sweet little girls sitting in my lap, bouncing, singing, laughing, and helping me eat my lunch as the nurse was trying to get the IV placed in my arm again. So, it was wonderful, mass chaos for a while. Then, my epileptologist walked down the hall and said he'd be back in a little bit to give me updates from the scan. Therefore, everyone but B left, but not before a group picture.
We assumed it would be a quick visit with the doc. B had an appt at 3:30p. to get to...The doc and his team spent over an hour and a half in here with us. Wow!! B completely missed his appt. and wasn't even able to step out to call his client and tell them he couldn't make it. I felt terrible. However, I praise the Lord that I have a husband that is so amazing and sacrificial that he was willing to stay here with me to get all of the info from the doc.
As of now, they are saying that they still aren't able to pinpoint the exact location. So, they believe I will need to come back, have electrodes implanted directly on my brain, and if they find a specific location, remove that...so, it's still up in the air for right now. However, they have one more test to do tomorrow. It is called an Ictal Spect. I had it done in Dallas, but they want to do one here, too. The way it works: They have a Radioactive Isotope sitting at their side. They have to inject it within the first 60 seconds of the seizure starting. If they miss that window, it is a loss and we have to wait for the next one. So, it is quite critical. They will order the isotope at 8am Friday, which means that it should arrive around 10am. I need to have had the scan by 11am for the results to be read in time tomorrow. Therefore, I need to have a seizure at about 10:05am Friday. Of all the random prayers, we would appreciate your help on that one...
Because they are still so stumped as to the origination of the seizures, they will take my case to conference tomorrow afternoon. That means that the three main epileptologists and the nuerosurgeon will look at all of my records, scans, etc., and argue with each other for a while on the best option. So, we expect to see my epileptologist around 3ish tomorrow afternoon with his (their) recommendation on the best option for getting rid of the seizures. He implied today that he still believes surgery is going to be the option.
He was walking down the hall this evening and we stopped him to say hello. He is a Proud Democrat, his dad was Secretary of State for PA for over 20 years, etc. We've had a few short conversations about politics. However, tonight he came in the room and spent almost an hour telling us how to fix the U.S. I was afraid to argue with him and then I realized he won't actually have the knife. From that point on, the three of us had fun arguing about who the next president should be and why. Something cool we learned about him is that he has an eight year old daughter that he adopted from China!!! He showed us pictures!! Such a cutie. Those Asian eyes just get me every time.
We learned that my head would be shaved completely if I had to have the surgery. Ben has offered to shave his head if I have the surgery. I still say the true test is when Mom shaves her head!! ; ) Though I look quite frightening, this is a pic of me with the doc (he's already shaved his head for me-ha ha)!!
So, I should be released tomorrow evening. We plan to go to PF Chang's when we get out of here. However, it will probably be so late that we will need to stay in Houston. So, we're trying to find a place to stay tomorrow night and we should be home Saturday.
Please pray:
*for the results of the scans to come back with more conclusive evidence
*for a seizure to occur in the appropriate timing for the Ictal Spect
*wisdom for the docs
*willingness and humility on the docs' part to think outside of the box
*that we can get the appt. moved up even sooner with Mayo
Yesterday was nutso...They came in, early in the morning, to take me for my MEG (Magnetoencephalogram). There are about eight of these machines in the entire U.S. which is one of the main reasons we came to this hospital. It is the test that should be able to pinpoint much more specifically where the seizures are originating. So, they walk in the room and ask if I have any metal in my mouth. I have two permanent retainers. They told me they would have to cancel the scan until I could have them removed. What?? I asked if they had a way to remove them. No! So, what should we do? Gosh, ma'am, we don't know. B reminded me that we were next door to the Dental School. So, I called the ortho department and they sent a student over to remove them. I was told if they were out by 12:30p, then I could have the scan done yesterday. She finished at 12:22p. However, they said it would have to wait until today.
B had an early morning appt. and my scan was scheduled for 8:30a. So, they came to get me (said it would take about an hour). B got back from his appt. and was able to meet me at the MEG scan. Then, they took all of the leads off my head and sent me for an MRI when the MEG was completed. I had a bunch of MRIs done in Dallas, but they needed one done with MEG protocol. I assumed it was about 11ish when they finished the MRI (it was after 1pm)!!! Thought I was hungry...that explained it. Also, they didn't have to put the leads back in because I have had so many seizures while here, they don't need to capture anymore on the EEG.
As we were getting off the elevator, I looked over and saw my sweet friend with her three little ones in the waiting room. So, the girls jumped on the guerney with me and rode to the room. When we got to the room, one of my Mom's dear friends from elementary school was waiting in the room for us. She had lunch, flowers, and a gift for me to give to one of the precious staff members here that helped us get in for this visit. Then, one of the nurses needed to come in and redo my IV. So, I had two sweet little girls sitting in my lap, bouncing, singing, laughing, and helping me eat my lunch as the nurse was trying to get the IV placed in my arm again. So, it was wonderful, mass chaos for a while. Then, my epileptologist walked down the hall and said he'd be back in a little bit to give me updates from the scan. Therefore, everyone but B left, but not before a group picture.
As of now, they are saying that they still aren't able to pinpoint the exact location. So, they believe I will need to come back, have electrodes implanted directly on my brain, and if they find a specific location, remove that...so, it's still up in the air for right now. However, they have one more test to do tomorrow. It is called an Ictal Spect. I had it done in Dallas, but they want to do one here, too. The way it works: They have a Radioactive Isotope sitting at their side. They have to inject it within the first 60 seconds of the seizure starting. If they miss that window, it is a loss and we have to wait for the next one. So, it is quite critical. They will order the isotope at 8am Friday, which means that it should arrive around 10am. I need to have had the scan by 11am for the results to be read in time tomorrow. Therefore, I need to have a seizure at about 10:05am Friday. Of all the random prayers, we would appreciate your help on that one...
Because they are still so stumped as to the origination of the seizures, they will take my case to conference tomorrow afternoon. That means that the three main epileptologists and the nuerosurgeon will look at all of my records, scans, etc., and argue with each other for a while on the best option. So, we expect to see my epileptologist around 3ish tomorrow afternoon with his (their) recommendation on the best option for getting rid of the seizures. He implied today that he still believes surgery is going to be the option.
He was walking down the hall this evening and we stopped him to say hello. He is a Proud Democrat, his dad was Secretary of State for PA for over 20 years, etc. We've had a few short conversations about politics. However, tonight he came in the room and spent almost an hour telling us how to fix the U.S. I was afraid to argue with him and then I realized he won't actually have the knife. From that point on, the three of us had fun arguing about who the next president should be and why. Something cool we learned about him is that he has an eight year old daughter that he adopted from China!!! He showed us pictures!! Such a cutie. Those Asian eyes just get me every time.
We learned that my head would be shaved completely if I had to have the surgery. Ben has offered to shave his head if I have the surgery. I still say the true test is when Mom shaves her head!! ; ) Though I look quite frightening, this is a pic of me with the doc (he's already shaved his head for me-ha ha)!!
So, I should be released tomorrow evening. We plan to go to PF Chang's when we get out of here. However, it will probably be so late that we will need to stay in Houston. So, we're trying to find a place to stay tomorrow night and we should be home Saturday.
Please pray:
*for the results of the scans to come back with more conclusive evidence
*for a seizure to occur in the appropriate timing for the Ictal Spect
*wisdom for the docs
*willingness and humility on the docs' part to think outside of the box
*that we can get the appt. moved up even sooner with Mayo
Wednesday, September 3, 2008
Prayer for Friend
I believe I have told many of you about the precious young lady at our church that gives the best hugs in the world!!
Her Dad is having surgery today to reattach his ACL. Will you be in prayer for the procedure and his rapid healing?
Her Dad is having surgery today to reattach his ACL. Will you be in prayer for the procedure and his rapid healing?
Tuesday, September 2, 2008
Sweet Visit
First, here are some frightening pics of me. This time, I not only have the leads, but the lady said it's better to wrap the gauze around my head to protect my hair. So, I actually look like I did have surgery. We took these pics to send to our friends that were going to come by tomorrow with their kiddos. We didn't want the kids to be scared when they walked in...we thought this would help prepare them.
Right after I sent the e-mail to them with the pics and as we were starting to shut down for the night, we got a wonderful surprise. Our dear friends and their three sweet angels came walking through the door with a "Get Well" balloon, roses, sweet cards, pictures, and artwork they colored for me!! Wow! What an absolute joy!! Especially after the rough start to the day!! They didn't act scared either!
I got lots of sweet hugs from the little girls.
For those of you that know these friends of ours, you know that the Momma sang in our wedding. Each night they have Family Worship & Prayer time before they go to bed. Tonight, they had their worship time with us. When it was time to get started, Momma asked the youngest little girl what song she wanted to sing tonight. Her choice was Amazing Grace. Most of you also know that the last song I sang to Granny in the hospital before she passed away was Amazing Grace. So, it was a very emotional moment, but very special. Then, the oldest, chose to sing Jesus Loves Me. They were both such precious reminders that He does love us and He is here with us.
Here is a pic of the entire crew before they left.
Right after I sent the e-mail to them with the pics and as we were starting to shut down for the night, we got a wonderful surprise. Our dear friends and their three sweet angels came walking through the door with a "Get Well" balloon, roses, sweet cards, pictures, and artwork they colored for me!! Wow! What an absolute joy!! Especially after the rough start to the day!! They didn't act scared either!
I got lots of sweet hugs from the little girls.
For those of you that know these friends of ours, you know that the Momma sang in our wedding. Each night they have Family Worship & Prayer time before they go to bed. Tonight, they had their worship time with us. When it was time to get started, Momma asked the youngest little girl what song she wanted to sing tonight. Her choice was Amazing Grace. Most of you also know that the last song I sang to Granny in the hospital before she passed away was Amazing Grace. So, it was a very emotional moment, but very special. Then, the oldest, chose to sing Jesus Loves Me. They were both such precious reminders that He does love us and He is here with us.
Here is a pic of the entire crew before they left.
Memorial Hermann
Well, here we are at the world famous Houston Medical Center...Memorial Hermann. After a whirlwind start to our morning in the EMU (Epilepsy Monitoring Unit) we were met by a very sweet friend, who happens to work with the Neurosurgeon that we might be working with should M have surgery after all our phase 1 studies are done, that was able to bring comfort and a smile to our day!
Thanks for your prayers. They are truly felt and we even got an answer today as we had an awesome nurse that was able to make us have total ease after our rocky start. So, as our day has come to an end, M has had 2 seizures recorded on the video monitoring system. Please pray that our time with the Epileptologist tomorrow morning will be productive and we will get a more clear direction to our time and answers in this long battle. We also anticipate that we will be having the MEG scan done fairly soon. The MEG is the main reason for us to be here as there are less than a dozen or so in the U.S. that can do this scan. From our understanding, this scan is able to better pinpoint the seizure's location in the brain without having to go into surgery. This scan will also be a good indicator if M is truly a surgery candidate or not.
Prayer requests:
M's peace
M's strength to endure another week in a hospital
Clear direction
Dr. S's openness to his approach and treatment plan
That we both would be vessels for Lord while here.
B's PET Scan at MD Anderson tomorrow would continue to show no cancer
Thank you all for your prayers! We should be meeting with Dr. S tomorrow morning sometime around 9.
B
Thanks for your prayers. They are truly felt and we even got an answer today as we had an awesome nurse that was able to make us have total ease after our rocky start. So, as our day has come to an end, M has had 2 seizures recorded on the video monitoring system. Please pray that our time with the Epileptologist tomorrow morning will be productive and we will get a more clear direction to our time and answers in this long battle. We also anticipate that we will be having the MEG scan done fairly soon. The MEG is the main reason for us to be here as there are less than a dozen or so in the U.S. that can do this scan. From our understanding, this scan is able to better pinpoint the seizure's location in the brain without having to go into surgery. This scan will also be a good indicator if M is truly a surgery candidate or not.
Prayer requests:
M's peace
M's strength to endure another week in a hospital
Clear direction
Dr. S's openness to his approach and treatment plan
That we both would be vessels for Lord while here.
B's PET Scan at MD Anderson tomorrow would continue to show no cancer
Thank you all for your prayers! We should be meeting with Dr. S tomorrow morning sometime around 9.
B
Monday, September 1, 2008
New Prayer Request
The more we consider the time we are going to spend in Houston, the more concerned we are about the docs taking a whole body approach. Each specialty wants to defer to another specialty. That's what we've discovered here and truly want to get away from...
We spoke with a friend yesterday that said, despite how amazing Memorial Hermann is, the specialties still don't work together very well. An example would be, when I asked the Epileptologist about how my hormones could play into this, he said that he needed to defer to an Endocrinologist and if we had the surgery, the pathologist could tell us the problem once they removed that part of my brain! YIKES!! I would like to know the issue before we go removing brain...you know?
So, prayer that a specialist arrives that gets it and can put all of the pieces together or that the docs I am currently seeing will truly consider the big picture and approach this from a whole body perspective.
Thank you all for being such great prayer warriors. We leave today and Mom will be keeping our cuties. It is eating her up that she won't be there, but she is going to go with me to Mayo. So, please pray for her peace, as well. Also, safety for our time there since Gustav is headed that way...
We spoke with a friend yesterday that said, despite how amazing Memorial Hermann is, the specialties still don't work together very well. An example would be, when I asked the Epileptologist about how my hormones could play into this, he said that he needed to defer to an Endocrinologist and if we had the surgery, the pathologist could tell us the problem once they removed that part of my brain! YIKES!! I would like to know the issue before we go removing brain...you know?
So, prayer that a specialist arrives that gets it and can put all of the pieces together or that the docs I am currently seeing will truly consider the big picture and approach this from a whole body perspective.
Thank you all for being such great prayer warriors. We leave today and Mom will be keeping our cuties. It is eating her up that she won't be there, but she is going to go with me to Mayo. So, please pray for her peace, as well. Also, safety for our time there since Gustav is headed that way...
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