Thank you for your continued prayers. First, thanks for praying for Critter. She is doing better and is hopefully on her way to a full-recovery from her double ear infection. We absolutely love the opportunity that technology has afforded us as we have been able to have multiple Skype sessions with her. Certainly, we miss her soooooo much, but having Skype enables us to "see" her and the same for her to "see" us. Praise the Lord!
We are in the hospital today for day 2 of monitoring. Yesterday ended up being a very long day with us checking-in to the hospital around 7a and then getting set up, introduced to new nurses, detailing an 8 year history with the staff, and then pausing to take a breath. Fortunately, and unfortunately, Princess did have 7 seizures yesterday. The good news is that the unit did capture most of the seizures and so it will be interesting to learn if these seizures were any different from what has already been thoroughly documented.
We are continually grateful for our dear friends that we have made that are here in Rochester. They have been such a blessing by getting us to the grocery store, taking us from the airport to the Clinic, from the Clinic to the hospital, and even one our newest friends braiding Princess' hair before the EEG leads were attached yesterday! What a blessing YOU have been! We have truly been blessed by your generosity and friendship.
While the tough cases come to Mayo, you really want to hope that every tough case gets a cure or fix. As we mentioned earlier, it is becoming more and more apparent that there may not be a "man-made" cure for Princess. That said, we did become frustrated this morning after our first visit with the rounding team and doctor when it was stated that Princess was having seizures and therefore, we need to increase her medicine. That was just about the extent of our visit this morning and so it has left us fairly frustrated for a good portion of the day. We want to feel like Mayo is fighting for Princess. That, yes, there might not be a fix, but we are going to try to figure something out.
Over the last few years, the time and attention that has been given has set a standard in the treatment here. So, it is hurtful when that message is not consistent. And again, that is what happened today. Please pray that tomorrow will be better. We're not too sure if we'll get the chance to be out of the hospital tomorrow or not, but we do want to make sure that the information the docs are getting is going to provide further insight to Princess' situation.
We'll keep posting and in the meantime, thanks for praying!
Friday, January 31, 2014
Thursday, January 30, 2014
My little P and Big Precious Hearts!
First and foremost, will you each stop and pray for Miss P? She started feeling bad on Sunday and started running a fever. Gamma got it down with a bath, but she's continued to feel yucky. So, Gamma & Miss C took her to the doctor today and she has a double ear infection. It is so hard to already feel like I don't get to be her Mommy on a daily basis, but even harder to be stuck here at the Mayo Clinic while she is sick at home. I want to hold my baby girl and help her to feel better. Please pray that she heals quickly.
Next, many people have commented to B about how polite he is and so he must be from the South. It's an honor to be by his side. However, we have seen amazing hearts in Minnesota, as well. A precious friend that we met a few years ago picked us up from the airport, took us to the grocery store, and has checked in each day! Another friend picked us up this evening and took us back to the grocery store. Her husband is a radiologist and he has offered to give a second look at all of my scans. Then, the first friend that I mentioned, went above and beyond today. We check in to the hospital in the early morning for my epilepsy monitoring. We have found that it works much better if my hair is in braids/corn rows. They get cleaner readings and I'm not as big of a mess when it's all said and done. I mentioned it to her and she has a friend that is a cosmetology school graduate. They are going to pick us up super early tomorrow morning, take us to the hospital, and braid my hair and get it ready for the monitoring for the next 2-5 days! Aren't they precious? I don't want to wake up that early for my own appointments. However, these two precious ladies are waking up super early, taking us to the hospital, and making it possible for the docs to get good reads on the EEG for someone they barely know!!! WOW!!!
We'll try to share more about today's appointments once we get a chance tomorrow. However, I wanted to beg for prayers for healing for Miss P and blessing for our friends L & J that are going to help us with my hair!! Thank you for your prayers!
Next, many people have commented to B about how polite he is and so he must be from the South. It's an honor to be by his side. However, we have seen amazing hearts in Minnesota, as well. A precious friend that we met a few years ago picked us up from the airport, took us to the grocery store, and has checked in each day! Another friend picked us up this evening and took us back to the grocery store. Her husband is a radiologist and he has offered to give a second look at all of my scans. Then, the first friend that I mentioned, went above and beyond today. We check in to the hospital in the early morning for my epilepsy monitoring. We have found that it works much better if my hair is in braids/corn rows. They get cleaner readings and I'm not as big of a mess when it's all said and done. I mentioned it to her and she has a friend that is a cosmetology school graduate. They are going to pick us up super early tomorrow morning, take us to the hospital, and braid my hair and get it ready for the monitoring for the next 2-5 days! Aren't they precious? I don't want to wake up that early for my own appointments. However, these two precious ladies are waking up super early, taking us to the hospital, and making it possible for the docs to get good reads on the EEG for someone they barely know!!! WOW!!!
We'll try to share more about today's appointments once we get a chance tomorrow. However, I wanted to beg for prayers for healing for Miss P and blessing for our friends L & J that are going to help us with my hair!! Thank you for your prayers!
Wednesday, January 29, 2014
There WILL BE Peaks and Valleys
Most of you have most likely seen the sharp, jagged lines of the waves of a heart on a heart monitor machine. While we did not necessarily witness this yesterday, our day for the most part, sure felt like we were those jagged lines. Experiencing the ebbs and flows, the peaks and valleys, the frustrations and joys, one doctor and another...
We went from Urology to Endocrinology, back to Urology, to Cardiology, and then finally Hematology- just to give you a glimpse of our journey yesterday. Most of our appointments were consults and opportunities to gain more insight into a very complex case. We generally look forward to these types appointments and enjoy the learning that can come from them. While a great deal of learning was done, we did have a bit of frustration this morning as we began as one of our consults proved more to be how much the doctor could prove we could be wrong as opposed to a colleague prior to the actual meeting was more than impressive in gaining insight and educating us. While this particular appointment was frustrating, it was just one appointment of the day, and did not dictate the rest of the day for us.
Yesterday's big appointment was actually with Hematology. From this appointment we were better able to understand Princess' iron deficiency anemia and how we would continue to treat her. We greatly appreciated their teaching approach but more importantly, their desire to listen to the patient. This typically is the case with most of our Mayo appointments. I think that is one of the things that has stood out about our whole Mayo experience.
From the Mayo Clinic's Model of Care:
We went from Urology to Endocrinology, back to Urology, to Cardiology, and then finally Hematology- just to give you a glimpse of our journey yesterday. Most of our appointments were consults and opportunities to gain more insight into a very complex case. We generally look forward to these types appointments and enjoy the learning that can come from them. While a great deal of learning was done, we did have a bit of frustration this morning as we began as one of our consults proved more to be how much the doctor could prove we could be wrong as opposed to a colleague prior to the actual meeting was more than impressive in gaining insight and educating us. While this particular appointment was frustrating, it was just one appointment of the day, and did not dictate the rest of the day for us.
Yesterday's big appointment was actually with Hematology. From this appointment we were better able to understand Princess' iron deficiency anemia and how we would continue to treat her. We greatly appreciated their teaching approach but more importantly, their desire to listen to the patient. This typically is the case with most of our Mayo appointments. I think that is one of the things that has stood out about our whole Mayo experience.
From the Mayo Clinic's Model of Care:
An unhurried examination with time to listen to the patient
At Mayo Clinic, we treat a whole person rather than an isolated disease entity. We recognize the additional time it takes to listen to patients and assess their needs in order to make sure that everything possible is done to provide quality care for our patients.
While we didn't get any "ah-ha" information or new links to Princess' seizures, we did find great value in furthering our education and learning so much more about our complex bodies.
We have many more appointments today before we head to the hospital tomorrow. Our prayer is that much can be accomplished today. We are also trying to figure out the details of our hotel. We don't know how long we'll be in the hospital and so we don't know when to tell them we'll check back in...we are praying that they might allow us to just leave our stuff in our room, since the hotel isn't full, but not charge us (wishful thinking? Yes, but God can do big things). Otherwise, we'll need to repack everything and put it in storage here at the hotel and then borrow their fridge for all of our food!
We are also praying that many of the scheduled appointments can be rescheduled as they are planned during the hospital admission which means we couldn't get to them. So, many details need to be worked out today. Please, Lord!!
At Mayo Clinic, we treat a whole person rather than an isolated disease entity. We recognize the additional time it takes to listen to patients and assess their needs in order to make sure that everything possible is done to provide quality care for our patients.
While we didn't get any "ah-ha" information or new links to Princess' seizures, we did find great value in furthering our education and learning so much more about our complex bodies.
We have many more appointments today before we head to the hospital tomorrow. Our prayer is that much can be accomplished today. We are also trying to figure out the details of our hotel. We don't know how long we'll be in the hospital and so we don't know when to tell them we'll check back in...we are praying that they might allow us to just leave our stuff in our room, since the hotel isn't full, but not charge us (wishful thinking? Yes, but God can do big things). Otherwise, we'll need to repack everything and put it in storage here at the hotel and then borrow their fridge for all of our food!
We are also praying that many of the scheduled appointments can be rescheduled as they are planned during the hospital admission which means we couldn't get to them. So, many details need to be worked out today. Please, Lord!!
Tuesday, January 28, 2014
Closed dooor, open window?
As B mentioned in the previous post, we were hoping for an "open window" yesterday afternoon with my neurologist, after the closed door we seemed to receive with the neuro-immunologist. However, he basically said that he didn't really see that there was much to do but live with seizures for the rest of my life and try new meds any time they come out and see if they work better than the other 12+ meds we've already done.
We brought up the idea of any other newer choices or options. The options seem to be bleak. The "aha" moment that we were hoping for just doesn't seem to be happening. He finally said we could talk to a neurosurgeon about a Vagus Nerve Stimulator. So, they are going to try to get that set up for us. However, that is a permanent implant that attaches to your vagus nerve and triggers something when a seizure starts to try to shorten it. It's kind of like a bark collar for a dog. Every time I seize, I run a magnet over it and it trains my body not to seize. They say it could take up to a year to get it set up and they would expect a 1-2% success rate.
I think the tough part is that we walked in to these appointments with a great deal of hope that we were on the road to answers. That it wouldn't be too long before I could just have Mommy & Miss P time where she doesn't have to be in a highchair or grocery cart strapped in....that I could be a wife to the most amazing husband ever and that I could be a daughter and any other role I'm called to be playing in life.
So, we start over today with a brand new list of docs to see if any of them see anything glaring that has been missed before...
Thank you for your precious prayers for us!
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. Philippians 4:4-6
We brought up the idea of any other newer choices or options. The options seem to be bleak. The "aha" moment that we were hoping for just doesn't seem to be happening. He finally said we could talk to a neurosurgeon about a Vagus Nerve Stimulator. So, they are going to try to get that set up for us. However, that is a permanent implant that attaches to your vagus nerve and triggers something when a seizure starts to try to shorten it. It's kind of like a bark collar for a dog. Every time I seize, I run a magnet over it and it trains my body not to seize. They say it could take up to a year to get it set up and they would expect a 1-2% success rate.
I think the tough part is that we walked in to these appointments with a great deal of hope that we were on the road to answers. That it wouldn't be too long before I could just have Mommy & Miss P time where she doesn't have to be in a highchair or grocery cart strapped in....that I could be a wife to the most amazing husband ever and that I could be a daughter and any other role I'm called to be playing in life.
So, we start over today with a brand new list of docs to see if any of them see anything glaring that has been missed before...
Thank you for your precious prayers for us!
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. Philippians 4:4-6
Monday, January 27, 2014
Day 1 Update.....Closed door?
A very WARM-hearted Howdy! from a very, very cold Mayo Clinic. The air temp reads -12 degrees Fahrenheit at this present time of posting, but the windchill has it feeling closer to -42. We have not ventured outside, but through the window, it definitely looks cold. Even the locals are commenting on how this just isn't right!!!
We began our day very early this morning and have literally not stopped. From mostly diagnostic testing and imaging, we did have one appointment this afternoon with our Neuro-Immunologist. We generally welcome this appointment with this doctor as he has been the lead in focusing in on Princess' autoimmune component of her seizures. He is a thinker and definitely educates us along the way, to that we are very appreciative.
A) Please pray for Princess. She has had four seizures today and is pretty exhausted due to her events. Additionally, because we have been going non-stop since about 5 AM it has been a long day.
B) The biggest update of the day came with the above mentioned Neuro-Immunologist. Bottom line, he basically indicated that Princess' condition is maybe not necessarily and auto-immune condition anymore. He indicated that since Princess has not responded more favorably to the prior auto-immune treatments that moving forward with chemo will probably not have any impact and that his concern with doing chemo was more focused on the side effects and the shot the immune system would take, over the potential for no favorable impact to Princess' seizures.
That said, he indicated that their is really nothing more that he can do and we would be best to focus our time and attention with our Epileptologist. This would lead to adding additional medications and/or other therapies like the vagal nerve simulator.
This news is obviously a hit and it is not fun hearing your doctor say that your current situation is probably not going to improve (from an autoimmune approach). So therefore, please pray for guidance and wisdom while we are here. Please pray for our upcoming Neuro appointment that will take place in about an hour. This next appointment will be with our Epileptologist, who is supposed to have been briefed on this previous appointment.
Thank you to you all. We'll continue to update along the way!
B
Saturday, January 25, 2014
Mayo, Trip 4
Some of you who have been following the blog know that we have been to Mayo before to specifically work with them on Princess' case. Due to the recent months and worsening of symptoms, we found it was necessary to make the trip once more as Chemo is possibly the next step in our journey.
So we bundled up and braced ourselves for the onslaught of cold weather and are now in Minnesota at the Mayo Clinic. We will definitely update while we are here and will keep you posted on the latest developments.
Please pray for our time here. First, that God would be glorified. There is a lot of opportunity here to share Christ and love on others, so we pray that we might be able to listen to others, and share Christ's love and hope in a challenging time. Second, that we would have great appointments and follow-ups. During our time here, we'll accomplish lots of tests (that could trigger more seizures) and consults with various specialists. We hope that we'll get a clear direction of what is next for Princess and most importantly guidance in stopping her seizures.
Finally, pray for our warmth!!! It's cold. The high on Monday is supposed to be -22 degrees F with a windchill of -51. In fact, it will be so cold that the schools in the area have already been cancelled!
Thanks for your continued support and prayers!
So we bundled up and braced ourselves for the onslaught of cold weather and are now in Minnesota at the Mayo Clinic. We will definitely update while we are here and will keep you posted on the latest developments.
Please pray for our time here. First, that God would be glorified. There is a lot of opportunity here to share Christ and love on others, so we pray that we might be able to listen to others, and share Christ's love and hope in a challenging time. Second, that we would have great appointments and follow-ups. During our time here, we'll accomplish lots of tests (that could trigger more seizures) and consults with various specialists. We hope that we'll get a clear direction of what is next for Princess and most importantly guidance in stopping her seizures.
Finally, pray for our warmth!!! It's cold. The high on Monday is supposed to be -22 degrees F with a windchill of -51. In fact, it will be so cold that the schools in the area have already been cancelled!
Thanks for your continued support and prayers!
Wednesday, January 22, 2014
Dances with Wolves
One of Miss P's favorite things to do on Sunday is go see the "old cars!" She loves them. Well, one Sunday, she got more than she bargained for...
However, one Sunday, there was more than just old cars waiting for P. There were wolves!!!! Yes, you read that correctly. One of the gentleman that comes up there has wolves. So, we all got to play with them.
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| Driving the truck! |
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| Checkin' out the fancy car...sorry that I don't know what any of them are called.... |
However, one Sunday, there was more than just old cars waiting for P. There were wolves!!!! Yes, you read that correctly. One of the gentleman that comes up there has wolves. So, we all got to play with them.
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| She wasn't sure at first! |
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| This guy really started to take a likin' to her... |
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| Then, she decided they should be best friends!!! |
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| Let's snuggle...and boy, did they ever try to give her kisses! |
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| One more stop in the old care before heading home!!! |
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| Isn't that a gorgeous face? |
Monday, January 13, 2014
Just what we need...
Most of you have seen our silly quote at the top of the page about God not giving us more than we can handle. As we clearly know, God definitely gives us more than we can handle so that we will rely on HIM! However, he knows exactly what we need and when we need it.
And my God will supply all your needs according to His riches in glory in Christ Jesus. Now to our God and Father be the glory forever and ever. Amen. Philippians 4:19-20
"Therefore I tell you, do not worry about your life, what you will eat, or about your body, what you will wear. For life is more than food, and the body more than clothing. Consider the ravens: the neither sow nor reap, they have neither storehouse nor barn, and yet God feeds them. Of how much more value are you than the birds!" Luke 12:22-24
"So do not worry about tomorrow, for tomorrow will bring worries of its own. Today's trouble is enough for today." Matthew 6:34
So, that takes us to today! In the last four days, I have only had three seizures. It was amazing because it gave me energy to care for B & P. As scary as it was, I put her to bed each evening. B wasn't able to touch her because of the flu and this was over the weekend. Thus, Mom was in charge. I did get to be a Mom for the first time in many ways. It was a delight to hold my sweet baby girl!!! Oh, how I loved it.
Then, came Monday. Yes, Today. Not a good day. I woke up having had a few seizures. Then, Ms C took us all to the store and as we were leaving the store, I had another one. Then, when we got back home, I was talking to my Mom on the phone and had another really bad one to equal four in less than ten hours. So, it's been tough to go from feeling like I was helping to feeling helpless.
Ben is a bit better today. He is still fighting a bad cough, but appears to be fever free. So, to the point of the title, the Lord knew what we needed. He allowed me to have a few good days so that I could care for my family when they needed me. Thank you, Jesus!!!!!!!!
And my God will supply all your needs according to His riches in glory in Christ Jesus. Now to our God and Father be the glory forever and ever. Amen. Philippians 4:19-20
"Therefore I tell you, do not worry about your life, what you will eat, or about your body, what you will wear. For life is more than food, and the body more than clothing. Consider the ravens: the neither sow nor reap, they have neither storehouse nor barn, and yet God feeds them. Of how much more value are you than the birds!" Luke 12:22-24
"So do not worry about tomorrow, for tomorrow will bring worries of its own. Today's trouble is enough for today." Matthew 6:34
So, that takes us to today! In the last four days, I have only had three seizures. It was amazing because it gave me energy to care for B & P. As scary as it was, I put her to bed each evening. B wasn't able to touch her because of the flu and this was over the weekend. Thus, Mom was in charge. I did get to be a Mom for the first time in many ways. It was a delight to hold my sweet baby girl!!! Oh, how I loved it.
Then, came Monday. Yes, Today. Not a good day. I woke up having had a few seizures. Then, Ms C took us all to the store and as we were leaving the store, I had another one. Then, when we got back home, I was talking to my Mom on the phone and had another really bad one to equal four in less than ten hours. So, it's been tough to go from feeling like I was helping to feeling helpless.
Ben is a bit better today. He is still fighting a bad cough, but appears to be fever free. So, to the point of the title, the Lord knew what we needed. He allowed me to have a few good days so that I could care for my family when they needed me. Thank you, Jesus!!!!!!!!
4am
Thought I posted this Saturday morning, but must have fallen asleep while typing...
It is 4am and we've just returned home from the ER. B's temp spiked to almost 104 and wouldn't respond to any of the meds. He got 3L of saline, more meds, and a breathing treatment. It finally started to drop a little after 2a or so. Then, they had to make sure his Heart Rate was below 100 before they could let him leave. It was crazy and exhausting.
We are finally home, exhausted, & praising the Lord for Ms C being here to make sure Miss P was safe.
Please pray for:
*B's rapid healing
*protection for Miss P, Ms. C, and the rest of us.
*that we are able to get rest and catch up on the lost sleep!!
It is 4am and we've just returned home from the ER. B's temp spiked to almost 104 and wouldn't respond to any of the meds. He got 3L of saline, more meds, and a breathing treatment. It finally started to drop a little after 2a or so. Then, they had to make sure his Heart Rate was below 100 before they could let him leave. It was crazy and exhausting.
We are finally home, exhausted, & praising the Lord for Ms C being here to make sure Miss P was safe.
Please pray for:
*B's rapid healing
*protection for Miss P, Ms. C, and the rest of us.
*that we are able to get rest and catch up on the lost sleep!!
Friday, January 10, 2014
FLU
Turns out that my man has the flu-Type A.
We were able to get him in to the doc today and he tested positive for the flu. So, no one is allowed to touch him until at least Monday. It is driving Miss P crazy. She wants to hug him as much as possible.
His fever keeps jumping back and forth. So, hopefully, we'll see some improvement in a few days. I already miss my man so much!!!!
We were able to get him in to the doc today and he tested positive for the flu. So, no one is allowed to touch him until at least Monday. It is driving Miss P crazy. She wants to hug him as much as possible.
His fever keeps jumping back and forth. So, hopefully, we'll see some improvement in a few days. I already miss my man so much!!!!
UPDATE: Quick Prayers!!
I know we are way overdue on updates. I hope to play catch up soon
and get things updated. However, most importantly, will you lift up the
overall health of our home?
This past weekend, Miss P picked up the stomach virus that is going around...then, I woke up Monday unable to really move. Mine progressed to the full stomach virus by Tuesday. Miss C & her fam & my Mom all have some type of sinus infection that they are all fighting.
B has been fighting all of it and experiencing some symptoms of each. However, he's been the rockstar that I so love and admire and he's continued trying to work, love on Miss P, etc. Today was the day it got him, though. His temp hit 102.5 tonight and it seems sinus/flu like. He was in bed by around 7p and hasn't really moved. UPDATE: Fever has jumped to 103.7. Now, I'm worried.
Yet, this man never complains. He's not winced, asked for anything at all, or even asked to be left alone. He has continued to try to serve us and love us. May the Lord abundantly bless his amazing heart and quickly heal his aching body!!
Thank you all for your prayers and love!
This past weekend, Miss P picked up the stomach virus that is going around...then, I woke up Monday unable to really move. Mine progressed to the full stomach virus by Tuesday. Miss C & her fam & my Mom all have some type of sinus infection that they are all fighting.
B has been fighting all of it and experiencing some symptoms of each. However, he's been the rockstar that I so love and admire and he's continued trying to work, love on Miss P, etc. Today was the day it got him, though. His temp hit 102.5 tonight and it seems sinus/flu like. He was in bed by around 7p and hasn't really moved. UPDATE: Fever has jumped to 103.7. Now, I'm worried.
Yet, this man never complains. He's not winced, asked for anything at all, or even asked to be left alone. He has continued to try to serve us and love us. May the Lord abundantly bless his amazing heart and quickly heal his aching body!!
Thank you all for your prayers and love!
Thursday, January 9, 2014
Quick Prayers!
I know we are way overdue on updates. I hope to play catch up soon and get things updated. However, most importantly, will you lift up the overall health of our home?
This past weekend, Miss P picked up the stomach virus that is going around...then, I woke up Monday unable to really move. Mine progressed to the full stomach virus by Tuesday. Miss C & her fam & my Mom all have some type of sinus infection that they are all fighting.
B has been fighting all of it and experiencing some symptoms of each. However, he's been the rockstar that I so love and admire and he's continued trying to work, love on Miss P, etc. Today was the day it got him, though. His temp hit 102.5 tonight and it seems sinus/flu like. He was in bed by around 7p and hasn't really moved.
Yet, this man never complains. He's not winced, asked for anything at all, or even asked to be left alone. He has continued to try to serve us and love us. May the Lord abundantly bless his amazing heart and quickly heal his aching body!!
Thank you all for your prayers and love!
This past weekend, Miss P picked up the stomach virus that is going around...then, I woke up Monday unable to really move. Mine progressed to the full stomach virus by Tuesday. Miss C & her fam & my Mom all have some type of sinus infection that they are all fighting.
B has been fighting all of it and experiencing some symptoms of each. However, he's been the rockstar that I so love and admire and he's continued trying to work, love on Miss P, etc. Today was the day it got him, though. His temp hit 102.5 tonight and it seems sinus/flu like. He was in bed by around 7p and hasn't really moved.
Yet, this man never complains. He's not winced, asked for anything at all, or even asked to be left alone. He has continued to try to serve us and love us. May the Lord abundantly bless his amazing heart and quickly heal his aching body!!
Thank you all for your prayers and love!
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