For those who have been following and faithfully praying, you will recall Critter was diagnosed back in June with Juvenile Arthritis. We have been blessed to work with Scottish Rite hospital for her diagnosis and treatments. Today was our third visit and all signs point to continued improvement and progress in her toes! The inflammation and swelling have gone down and her toes still seem to be doing exactly what the doc wants them to do. Great news! We will still continue her medicine, thus putting off chemo. So we'll keep with our current follow-up schedule to be evaluated very 3-4 months.
PS-please lift Princess up in prayer. Her seizures have continued to increase over the last two months and we have no answers. We are still making plans to be at Jefferson Hospital soon for evaluation, but would obviously would like to see a decrease in her seizures.
Monday, October 29, 2012
Friday, October 26, 2012
Thank you!
We've received a few e-mails requesting that we share some quick updates.
First, thank you all for your prayers!!
Second, thank you each so much for your sweet birthday wishes! Wow! My inbox is going crazy with blessings from each of you! What a precious gift!
Finally, the update:
We came home from the hospital that Thursday evening (two weeks ago). I had two decent days. Then, they started up again....That Sunday was incredibly rough. We had home health out to do some IVs and I have no real recollection of the nurse being here. That was the beginning of four rough days where I averaged close to three seizures per day. So, needless to say I was exhausted!!! Then, I had a bit of a break for a day or so, only having one each day.
Then, came Saturday. I had two seizures within 20 minutes of each other and another one a few hours later. So, I had to take the "rescue med" before 6am. I didn't have any more seizures Saturday or Sunday, but most of the days were "erased" and I was asleep.
Then, came Monday. The day that so many of you remembered, my birthday!!!! Thank you!! I only had one on Monday and one on Tuesday. So, the break was great. Thank you, Lord!
Wednesday hit with a bang, literally. I already had too many by 7am and had to take a rescue med which only lasted about five hours. A dear friend from college was coming over to "play" that day. She has two little ones. This was our first ever playdate. I had no idea what to do. No seizures while the kids were here! Thank you, Lord! However, soon after they left, chaos. I had four seizures in less than eight hours. So, B had me take another rescue med.
Here we are, today, Thursday. I've had four seizures today. So, more rescue meds and pleas for prayers for some days with rest included! Our pup also had a seizure tonight. Thus, it's been a bit crazy around here. Thank you all for your prayers!!
Here are some cute pics of P with the Halloween present she received from her grandmother tonight:
She absolutely loved it and walked all over the place with it...it's a little pumpkin bag with a pumpkin flashlight that she can shine all over the walls!!! ; )
First, thank you all for your prayers!!
Second, thank you each so much for your sweet birthday wishes! Wow! My inbox is going crazy with blessings from each of you! What a precious gift!
Finally, the update:
We came home from the hospital that Thursday evening (two weeks ago). I had two decent days. Then, they started up again....That Sunday was incredibly rough. We had home health out to do some IVs and I have no real recollection of the nurse being here. That was the beginning of four rough days where I averaged close to three seizures per day. So, needless to say I was exhausted!!! Then, I had a bit of a break for a day or so, only having one each day.
Then, came Saturday. I had two seizures within 20 minutes of each other and another one a few hours later. So, I had to take the "rescue med" before 6am. I didn't have any more seizures Saturday or Sunday, but most of the days were "erased" and I was asleep.
Then, came Monday. The day that so many of you remembered, my birthday!!!! Thank you!! I only had one on Monday and one on Tuesday. So, the break was great. Thank you, Lord!
Wednesday hit with a bang, literally. I already had too many by 7am and had to take a rescue med which only lasted about five hours. A dear friend from college was coming over to "play" that day. She has two little ones. This was our first ever playdate. I had no idea what to do. No seizures while the kids were here! Thank you, Lord! However, soon after they left, chaos. I had four seizures in less than eight hours. So, B had me take another rescue med.
Here we are, today, Thursday. I've had four seizures today. So, more rescue meds and pleas for prayers for some days with rest included! Our pup also had a seizure tonight. Thus, it's been a bit crazy around here. Thank you all for your prayers!!
Here are some cute pics of P with the Halloween present she received from her grandmother tonight:
She absolutely loved it and walked all over the place with it...it's a little pumpkin bag with a pumpkin flashlight that she can shine all over the walls!!! ; )
Wednesday, October 24, 2012
Monday, October 15, 2012
Post Hospital Update and What's Next
Howdy to all! First, many and many thanks goes out to you for your constant prayers and emails. We had an extremely difficult week (see previous post) and are relieved to be back at home. Princess was discharged from the hospital on Thursday evening as the seizures had for the moment calmed. There are, and were not, any answers for what happened over the weekend or at the start of the week other than maybe a possible reaction to a new medication that was added to our regimen. That said, we were able to determine that particular medication is not an option for Princess.
Other than that it is back home and rely SOLELY on GOD for His strength that is becoming so evident in Princess' life each day. Truly, she is the most incredible woman in the world to get up each day and take care of our family. Her strength to endure and yet even just be part of life is amazing. While along this 6.5 year journey so far, God has continually blessed Princess with an amazing attitude and life. We truly don't know what today has...will Princess have no seizures? will she only have one? or could today be a day like we just experienced and will she have 15 seizures in a day? We don't know...As frustrating as the unpredicatablity can be we are still learning how to balance.
Balance...
While our balancing act can be somewhat challenging, both Princess and myself will first and foremost tell you that it is not anything we can do. But first things first, it is because of our foundation in Christ Jesus! We do, and have to start each and everyday with Him. He is the source of our strength. He is the Master Architect of our days. Princess and I do constantly tell ourselves that it is not a surprise to God about what we are enduring. And in addition, it is truly awe inspiring to witness Princess daily and see God's provision in her life.
But there's more. God is unfolding His plan to do great and mighty things in Princess' life and in yours and mine. While our trip to the hospital this week may not have been eye opening in providing a cure, it more or less confirmed the direction we are heading. This week our Neuro mapped out a plan of action that would lead us down a path to Philadelphia to start the initial steps for brain surgery. While surgery is not a desirable option, it appears that it is the only option that man can provide. What does this mean?
Next month we will be headed to Philadelphia to one of the leading Epilepsy Surgery centers in the nation. We will be somewhat starting from scratch with new sets of eyes, different EEG recording devices, different MRI scanners, and much more. We will have the advantage of bringing in all previously collected data and comparing it to what will be collected in this trip. Depending upon the results obtained, the physicians and specialist will make a recommendation to move forward or not with brain surgery. Should they want to go further with surgery, we'll most likely return in January of 2013 to begin again Princess' surgery we did in November of 2008 with the hopes of placing electrodes deeper in the brain and more of them covering the surface to potentially locate the seizures. Thereafter, assuming the seizures are located, our team would then "map" Princess' brain and determine how to remove the tissue where the seizure(s) is/are located. If January were to happen, we will have much more praying to do and will really have to weigh our options due to the potential cognitive, and who knows what else, impact this will certainly have.
Bottom line, God is and will be the hero. Princess has for years now said that God is the hero in this story. The stage is set again that as doctor's have said there really is nothing more that can be done. Our own Neuro reminded us again that we have to stop the seizures. The impact they are having is detrimental and there is grave concern for what Princess will be like should these continue for 5 or 10 more years.
So pray. Prayer comes first. God is Holy. God is God and He is the only answer for all of us. In Him, eternal life is found. He provides the strength for today and our time here on earth. We turn to Him and ask for healing and peace for Princess. We ask for wisdom and peace in the midst of this storm. We ask for guidance as we venture on this journey. We pray for the doctors in the path ahead. AND MOST IMPORTANTLY- that Christ would be communicated in ALL that we do. May God be glorified!
Thanks for sticking with us!
Other than that it is back home and rely SOLELY on GOD for His strength that is becoming so evident in Princess' life each day. Truly, she is the most incredible woman in the world to get up each day and take care of our family. Her strength to endure and yet even just be part of life is amazing. While along this 6.5 year journey so far, God has continually blessed Princess with an amazing attitude and life. We truly don't know what today has...will Princess have no seizures? will she only have one? or could today be a day like we just experienced and will she have 15 seizures in a day? We don't know...As frustrating as the unpredicatablity can be we are still learning how to balance.
Balance...
While our balancing act can be somewhat challenging, both Princess and myself will first and foremost tell you that it is not anything we can do. But first things first, it is because of our foundation in Christ Jesus! We do, and have to start each and everyday with Him. He is the source of our strength. He is the Master Architect of our days. Princess and I do constantly tell ourselves that it is not a surprise to God about what we are enduring. And in addition, it is truly awe inspiring to witness Princess daily and see God's provision in her life.
But there's more. God is unfolding His plan to do great and mighty things in Princess' life and in yours and mine. While our trip to the hospital this week may not have been eye opening in providing a cure, it more or less confirmed the direction we are heading. This week our Neuro mapped out a plan of action that would lead us down a path to Philadelphia to start the initial steps for brain surgery. While surgery is not a desirable option, it appears that it is the only option that man can provide. What does this mean?
Next month we will be headed to Philadelphia to one of the leading Epilepsy Surgery centers in the nation. We will be somewhat starting from scratch with new sets of eyes, different EEG recording devices, different MRI scanners, and much more. We will have the advantage of bringing in all previously collected data and comparing it to what will be collected in this trip. Depending upon the results obtained, the physicians and specialist will make a recommendation to move forward or not with brain surgery. Should they want to go further with surgery, we'll most likely return in January of 2013 to begin again Princess' surgery we did in November of 2008 with the hopes of placing electrodes deeper in the brain and more of them covering the surface to potentially locate the seizures. Thereafter, assuming the seizures are located, our team would then "map" Princess' brain and determine how to remove the tissue where the seizure(s) is/are located. If January were to happen, we will have much more praying to do and will really have to weigh our options due to the potential cognitive, and who knows what else, impact this will certainly have.
Bottom line, God is and will be the hero. Princess has for years now said that God is the hero in this story. The stage is set again that as doctor's have said there really is nothing more that can be done. Our own Neuro reminded us again that we have to stop the seizures. The impact they are having is detrimental and there is grave concern for what Princess will be like should these continue for 5 or 10 more years.
So pray. Prayer comes first. God is Holy. God is God and He is the only answer for all of us. In Him, eternal life is found. He provides the strength for today and our time here on earth. We turn to Him and ask for healing and peace for Princess. We ask for wisdom and peace in the midst of this storm. We ask for guidance as we venture on this journey. We pray for the doctors in the path ahead. AND MOST IMPORTANTLY- that Christ would be communicated in ALL that we do. May God be glorified!
Thanks for sticking with us!
Thursday, October 11, 2012
The day that would not end...
After Princess' trip to the hospital through the ER, we were finally on the floor of the hospital around midnight. Followed by another hour of getting settled in with the staff and getting Princess hooked up to her EEG. Soon it was 2 AM and we were just now able to think about falling asleep. Then around 3 AM we were moved to the EMU (Epilepsy Monitoring Unit) where we had to do more adjustments and introductions and it was now close to 4 AM and time for us to get some much needed rest.
Thereafter, Princess, by far, had one of her worst days in the last six years and actually had 15 seizures before going to bed last night. So, it was a rough day altogether. We are not really sure of what happeed yesterday with seizures but we were very thankful that the day was eventually over.
As for Princess, the talk most of yesterday was to figure out what was going on that got us into the hospital and what was going on that she was having more seizures. It was later in the afternoon that most of our conversation, now with Princess' Nuero, centered on adding another medication and getting ourselves to Philadelphia to Jefferson Hospital's Epilepsy Center. The thought with Jefferson is to eventually look toward another surgery....our most likely answer to getting Princess better, next to a miraculous healing from the Lord.
So as it is already late, we wanted to provide just a brief update and will be sure to post more very soon!
Thereafter, Princess, by far, had one of her worst days in the last six years and actually had 15 seizures before going to bed last night. So, it was a rough day altogether. We are not really sure of what happeed yesterday with seizures but we were very thankful that the day was eventually over.
As for Princess, the talk most of yesterday was to figure out what was going on that got us into the hospital and what was going on that she was having more seizures. It was later in the afternoon that most of our conversation, now with Princess' Nuero, centered on adding another medication and getting ourselves to Philadelphia to Jefferson Hospital's Epilepsy Center. The thought with Jefferson is to eventually look toward another surgery....our most likely answer to getting Princess better, next to a miraculous healing from the Lord.
So as it is already late, we wanted to provide just a brief update and will be sure to post more very soon!
Monday, October 8, 2012
ER, PRAYERS- JEHOVAH RAPHA
THE LORD THAT HEALS YOU...
Lord, I pray for healing today! Please take away this awful illness from Princess. Lord, it is my heart, mind and soul's desire to trust you and yet at times the journey is so difficult. You know all our fears, all our concerns, our frustrations, and our desires...Please bring healing into Princess' life right now. She is tired. She is weak. She is frustrated. Lord, I don't ask as in a request hoping you can heal her....What I know is that you are ABLE. YOU ARE ABLE! Father, You alone have sustained Princess for the last 6.5 years. You have protected her when docs have no answers. Lord, in continued and steadfast faithfulness we continue to seek You for your guidance, provision, and healing. Please Lord...let today be the day that you end this chapter. Father, I trust You. You have told me....You have told us...that you know our plans, our days... YOU, who has ordered the stars to their places and knows us so personally....our lives are held in the cup of your hands. So today, as long as it is called today, we turn to You and GLORIFY your HOLY name. Please Lord, bring rest and restoration to Princess today. Take away this illness. Thank you for providing Your strength. Please bring some calm and rest today.
Selah.
Amen.
Update: For a second weekend, Princess has not felt well. We have recently made some changes with our physician in hopes that we can stop these seizures. And what all of the changes have turned into is something very wrong for Princess. After another very difficult weekend we were finally able to reach our Neuro and Princess has been ADMITTED back into the hospital through the Pysician Referral ER. While not desired, the situation at hand warranted and necisitated the visit. Princess' mom graciously was able to be on call to start the process and I myself will be reunited with Princess shortly. At this present time we don't understand nor really know exactly what Princess is experiencing. All we can say is that something is not right...We hope that we can have answers soon. These recent events are all trailing our most recent doctor visit where our Nuero is presently trying to get Princess to Jefferson Hospital in Philadelphia to be monitored eventually for surgery in January of 2013. So we are prayerful today about all that has been laid before us and even what new medications we should consider, if we were to venture down that road, too.
Please pray for Princess.
Lord, I pray for healing today! Please take away this awful illness from Princess. Lord, it is my heart, mind and soul's desire to trust you and yet at times the journey is so difficult. You know all our fears, all our concerns, our frustrations, and our desires...Please bring healing into Princess' life right now. She is tired. She is weak. She is frustrated. Lord, I don't ask as in a request hoping you can heal her....What I know is that you are ABLE. YOU ARE ABLE! Father, You alone have sustained Princess for the last 6.5 years. You have protected her when docs have no answers. Lord, in continued and steadfast faithfulness we continue to seek You for your guidance, provision, and healing. Please Lord...let today be the day that you end this chapter. Father, I trust You. You have told me....You have told us...that you know our plans, our days... YOU, who has ordered the stars to their places and knows us so personally....our lives are held in the cup of your hands. So today, as long as it is called today, we turn to You and GLORIFY your HOLY name. Please Lord, bring rest and restoration to Princess today. Take away this illness. Thank you for providing Your strength. Please bring some calm and rest today.
Selah.
Amen.
Update: For a second weekend, Princess has not felt well. We have recently made some changes with our physician in hopes that we can stop these seizures. And what all of the changes have turned into is something very wrong for Princess. After another very difficult weekend we were finally able to reach our Neuro and Princess has been ADMITTED back into the hospital through the Pysician Referral ER. While not desired, the situation at hand warranted and necisitated the visit. Princess' mom graciously was able to be on call to start the process and I myself will be reunited with Princess shortly. At this present time we don't understand nor really know exactly what Princess is experiencing. All we can say is that something is not right...We hope that we can have answers soon. These recent events are all trailing our most recent doctor visit where our Nuero is presently trying to get Princess to Jefferson Hospital in Philadelphia to be monitored eventually for surgery in January of 2013. So we are prayerful today about all that has been laid before us and even what new medications we should consider, if we were to venture down that road, too.
Please pray for Princess.
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