Today, I went to Philadelphia to see my Jefferson neurologist and have 2 more tests done. However, due to personnel being unavailable, I was not able to have the EEG done. I was able to have the ENG (used to test if the inner ear is the culprit for causing dizziness) done, which was negative. Between that test and the ANSAR test and MRA I had done 2 weeks ago, my doctor was able to rule out more of the concerning diagnoses like MS and any other auto-immune disease, vasculitis, and aneurism or other vessel disorders.
At this point, my lesion on my brain appears to be non-active. There is a chance that we may not know what it is and will just need to monitor it every 6-9 months for changes. I will be having the EEG on Dec. 27 at 1 p.m. I now also need to have a fine motor function test done by a physical therapist to determine the extent that my tremors and fine motor skills are affecting my ability to function (in my opinion, this is more problematic to me now than the pain since the pain is now at a functional level). I also need to see a neuropsychologist for testing to see how different stressors affect my function since the tremors and fine motor issues are seeming to be exacerbated by outside pressure/stress.
Because of troublesome side effects from the Elavil that I am on to control the migraine pain, I am going to wean off of that and start on a different drug that doesn't have those side effects but can cause other potentially troublesome side effects. So I guess we'll have to figure out which one is the lesser of the 2 evils. If I keep this up, I will be able to open a pharmacy with all of the drugs that I have that I cannot take anymore! (that is, if it weren't illegal :-) )
So, no answers and more tests to come at this point for me. I have to admit that it is really starting to get discouraging. All I wanted for Christmas was a diagnoses, and now, I will not have one before the beginning of the new year. I really want to be normal again. I want to be the wife and mother that I need to be to my family. Poor Josh in his Asperger way just wants to know when I will be better since the unknown causes so much anxiety for him!
However, I have to remember that God is in all of this. Everything is happening in His timing for His purpose. I simply need to be patient and rest in His grace during this difficult time. The temptation to doubt is definitely growing in its intensity. I am reminded of Paul's resolve to firmly believe and live in God's all sufficient grace knowing that God's strength is made perfect in weakness (II Corinthians 12:7-10).
Monday, December 19, 2011
Thursday, December 8, 2011
In the Holding Pattern
Ok, so not much more to report on the headache front, unfortunately. I found out today, that I definitely do not have vasculitis based on my blood test results. My Depakote levels are low, but the neurologist wants to see them lower before I try a new medication, so I will have to wait it out for a little more than a week with the pain coming and going as it has been with the Elavil keeping it in check for the time being.
As for the ANSAR test I had done at the neurologist's office Tuesday night, all I know is that she definitely wants me to have the EEG done during my appointment on Dec. 19th and that at that appointment, she will discuss everything with me then. So, until then, we WAIT.
At a time when waiting seems to be all I do - waiting for a diagnosis, for the right medication, to be pain-free, to have my body back to normal, to have our household back in order and normal function, etc - I fervently cling to the promise of God for His wondrous strength to keep me going each day:
"But they who wait for the LORD shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint."
(Isaiah 40:31 ESV)
In the meantime, in addition to waiting, I am doing my best to keep things running smoothly in our house and give the boys as much normalcy as my head and body will allow. After having our Christmas tree up for over a week, we were finally able to decorate it together as a family on Monday night. This put all of us in a festive spirit. When we put the boys to bed as soon as we finished, they chose David's favorite Christmas Carol as their lullaby. They sang it so nicely that Tim asked them to sing it for him to take a video. They were all too willing to perform and did an amazing job for an impromptu performance. Tim had a hard time not laughing at Josh's facial expressions, and I was just trying to keep the pain in my head at bay to keep the boys from thinking they needed to be quiet.
As for the ANSAR test I had done at the neurologist's office Tuesday night, all I know is that she definitely wants me to have the EEG done during my appointment on Dec. 19th and that at that appointment, she will discuss everything with me then. So, until then, we WAIT.
At a time when waiting seems to be all I do - waiting for a diagnosis, for the right medication, to be pain-free, to have my body back to normal, to have our household back in order and normal function, etc - I fervently cling to the promise of God for His wondrous strength to keep me going each day:
"But they who wait for the LORD shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint."
(Isaiah 40:31 ESV)
In the meantime, in addition to waiting, I am doing my best to keep things running smoothly in our house and give the boys as much normalcy as my head and body will allow. After having our Christmas tree up for over a week, we were finally able to decorate it together as a family on Monday night. This put all of us in a festive spirit. When we put the boys to bed as soon as we finished, they chose David's favorite Christmas Carol as their lullaby. They sang it so nicely that Tim asked them to sing it for him to take a video. They were all too willing to perform and did an amazing job for an impromptu performance. Tim had a hard time not laughing at Josh's facial expressions, and I was just trying to keep the pain in my head at bay to keep the boys from thinking they needed to be quiet.
Wednesday, December 7, 2011
No Aneurism!
Today I found out that my MRA from yesterday was negative, so I do not have a brain aneurism, for which we are very thankful. I have not received the results yet from my blood work I had done yesterday to check for vasculitis or the ANSAR test I had done last night to determine the functioning of my autonomic nervous system. I hope that I can get some answers tomorrow once the neurologist has had time to review the results and call me.
Two days ago, my neurologist doubled the dose of the Elavil that I am on for the pain, and it has brought considerable relief. I still have yet to be completely pain free for a day, but I am thankful for the longer breaks in pain where I have the unfamiliar feeling of being pain-free. The drug increase has also decreased a lot of my neurological symptoms that were getting quite worrisome as they affected my ability to function.
Our church and neighbors have been providing us with meals which has been a huge blessing. With the fatigue from the pain and the struggle with the neurological symptoms, it has become really difficult to take care of the boys, help with homework, and get dinner on the table at a reasonable time. Not having to make meals every day has allowed me to spend more of my energy and time on my family, which has become especially important during this stressful time of my illness.
God continues to sustain us and carry us through each day. I am so grateful for His perfect peace and His comfort. My sister in law shared this video with me, which is so utterly perfect for what I am going through. I thought I would share the richness of the message with you as well.
Two days ago, my neurologist doubled the dose of the Elavil that I am on for the pain, and it has brought considerable relief. I still have yet to be completely pain free for a day, but I am thankful for the longer breaks in pain where I have the unfamiliar feeling of being pain-free. The drug increase has also decreased a lot of my neurological symptoms that were getting quite worrisome as they affected my ability to function.
Our church and neighbors have been providing us with meals which has been a huge blessing. With the fatigue from the pain and the struggle with the neurological symptoms, it has become really difficult to take care of the boys, help with homework, and get dinner on the table at a reasonable time. Not having to make meals every day has allowed me to spend more of my energy and time on my family, which has become especially important during this stressful time of my illness.
God continues to sustain us and carry us through each day. I am so grateful for His perfect peace and His comfort. My sister in law shared this video with me, which is so utterly perfect for what I am going through. I thought I would share the richness of the message with you as well.
Thursday, December 1, 2011
Migraine Update
Today marks officially 1 month of having a migraine - definitely not something to brag about! However, today was also significant in 2 other ways: I found out that all but one of the Multiple Sclerosis results from my lumbar puncture last Monday are back and all negative (we are thankful for that; the other test result is more sensitive, but my neurosurgeon feels that in light of the others all being negative, there's really nothing to worry about),and I saw a Jefferson University Hospital neurologist (this is significant for this area because apparently, Jefferson has the best reputation when it comes to neurology). We are thankful I was able to get in to see her, and we were really impressed with her knowledge and ability to look into all aspects of my case and piece everything together.
I went into the appointment desperately praying that she would know what was wrong with me and know just how to fix things. That did not happen because she admitted that she does not know for sure what it is, although she has a couple of ideas. However, I feel she is my best shot of getting to the bottom of things because she is very aggressive in getting a diagnosis and is not content just trying to treat my pain.
So, the plan (as complicated as it's getting - sorry it's so long!):
1. I need to get a MRA (Magnetic resonance angiography), which is a brain MRI done differently in order to study the arteriole system - One suspicion is that I have an aneurism. -- I was able to schedule this for Tuesday, Dec. 6 at 6:45a.m. (they want me to be the first person in because of my latex allergy).
2. Next week I will also get more blood work done, this time to have a more extensive work-up to make sure I don't have vasculitis.
3. I had stopped taking Depakote as of Sunday to see if the tremors I was having would go away or not since I first noticed the tremors when I was taking 1000mg of it. The tremors have greatly lessened but are still present, and this neurologist thinks it may be another neurological symptom. To be sure, I am to stay off of the Depakote and allow it to fully get out of my system. My levels will be checked in my blood when I get my blood work done next week. If I am clear, I will start on Lamictal, another strong anti-seizure medicine that has been successful in treating migraines. To avoid drug interactions, I have to have Depakote completely out of my system. This will mean, that my pain will progressively get worse as the Depakote leaves. I have already begun to see this effect over the past few days, although the Elavil I am on is helping to prevent my pain from escalating to what it was before being hospitalized.
4. I need to see a neuro-opthamologist to get my depth perception checked out, because it appears that my depth perception is not right which culminated in an accident this morning when I was walking down the stairs with Josh's uniform. I thought I had just stepped off the last step, but actually had 2 more steps to go, so I fell down the stairs and sprained my ankle.
5. The neurologist found weakness and diminished sensation in my left leg/foot which could be a result of the lesion on the right side of my brain. My neurologist will do 3 more tests on me at my next visit (Dec. 20) to help her get a better picture of what is going on. One of those 3 tests will be an EEG to make sure there is no connection with the 2 seizures I had back in 1999 when I was diagnosed with neurocardiogenic syncope and had the seizures after I had passed out both times.
As you can see, this neurologist is extremely thorough! We are praying that within a few weeks time, we may finally have a diagnosis and a plan of action. We remain confident that no matter what happens, God is in control and is working in through this whole situation for our good and for His glory!
Please continue to keep all of us in your prayers as my own condition weighs heavily on all of us. Joshua is continuing to have a lot of anxiety over my situation which causes behavior issues at school and home. As of today, he is going to have some medication adjustments to help him be able to function better in light of his Asperger's Syndrome. We are also looking for a good child psychologist who might be able to help Joshua process his feelings better. David is quiet in his reaction to this whole situation, which is easy for us to overlook, so we are trying to be better attentive to his needs. Since he's becoming the artist of the family, we are trying to encourage him to express his feelings through art. His health has been stable now for almost a month since his last infection of tonsillitis and pneumonia at the beginning of November. His antibody transfusions continue to go well, and this week, he finally got to stop his prophylactic antibiotic with the hope that the transfusions have reached a sufficient level in his blood to help his body fight off infection.
We are so thankful that God's grace is sufficient even in these "thorns" in our family's lives. His strength is what carries us through each day, and His peace keeps our hearts calm as we rest in His care.
I went into the appointment desperately praying that she would know what was wrong with me and know just how to fix things. That did not happen because she admitted that she does not know for sure what it is, although she has a couple of ideas. However, I feel she is my best shot of getting to the bottom of things because she is very aggressive in getting a diagnosis and is not content just trying to treat my pain.
So, the plan (as complicated as it's getting - sorry it's so long!):
1. I need to get a MRA (Magnetic resonance angiography), which is a brain MRI done differently in order to study the arteriole system - One suspicion is that I have an aneurism. -- I was able to schedule this for Tuesday, Dec. 6 at 6:45a.m. (they want me to be the first person in because of my latex allergy).
2. Next week I will also get more blood work done, this time to have a more extensive work-up to make sure I don't have vasculitis.
3. I had stopped taking Depakote as of Sunday to see if the tremors I was having would go away or not since I first noticed the tremors when I was taking 1000mg of it. The tremors have greatly lessened but are still present, and this neurologist thinks it may be another neurological symptom. To be sure, I am to stay off of the Depakote and allow it to fully get out of my system. My levels will be checked in my blood when I get my blood work done next week. If I am clear, I will start on Lamictal, another strong anti-seizure medicine that has been successful in treating migraines. To avoid drug interactions, I have to have Depakote completely out of my system. This will mean, that my pain will progressively get worse as the Depakote leaves. I have already begun to see this effect over the past few days, although the Elavil I am on is helping to prevent my pain from escalating to what it was before being hospitalized.
4. I need to see a neuro-opthamologist to get my depth perception checked out, because it appears that my depth perception is not right which culminated in an accident this morning when I was walking down the stairs with Josh's uniform. I thought I had just stepped off the last step, but actually had 2 more steps to go, so I fell down the stairs and sprained my ankle.
5. The neurologist found weakness and diminished sensation in my left leg/foot which could be a result of the lesion on the right side of my brain. My neurologist will do 3 more tests on me at my next visit (Dec. 20) to help her get a better picture of what is going on. One of those 3 tests will be an EEG to make sure there is no connection with the 2 seizures I had back in 1999 when I was diagnosed with neurocardiogenic syncope and had the seizures after I had passed out both times.
As you can see, this neurologist is extremely thorough! We are praying that within a few weeks time, we may finally have a diagnosis and a plan of action. We remain confident that no matter what happens, God is in control and is working in through this whole situation for our good and for His glory!
Please continue to keep all of us in your prayers as my own condition weighs heavily on all of us. Joshua is continuing to have a lot of anxiety over my situation which causes behavior issues at school and home. As of today, he is going to have some medication adjustments to help him be able to function better in light of his Asperger's Syndrome. We are also looking for a good child psychologist who might be able to help Joshua process his feelings better. David is quiet in his reaction to this whole situation, which is easy for us to overlook, so we are trying to be better attentive to his needs. Since he's becoming the artist of the family, we are trying to encourage him to express his feelings through art. His health has been stable now for almost a month since his last infection of tonsillitis and pneumonia at the beginning of November. His antibody transfusions continue to go well, and this week, he finally got to stop his prophylactic antibiotic with the hope that the transfusions have reached a sufficient level in his blood to help his body fight off infection.
We are so thankful that God's grace is sufficient even in these "thorns" in our family's lives. His strength is what carries us through each day, and His peace keeps our hearts calm as we rest in His care.
 |
| We were so thankful that we were able to continue with our Thanksgiving plans and go to my parents' house. My brother was kind enough to do our family portrait on my parents' property. |
Wednesday, November 23, 2011
Answered Prayers
God heard the prayers of our friends and family, and answered them according to His will! Today I got released from the hospital!
My spinal MRI showed no additional lesions for which we are thankful. There are still no answers as to what is causing my migraine, but we are checking more and more possibilities off the list. The new meds I started on last night helped get the pain under control, so I now will be taking them regularly. I have to follow up with my neurologist in about a week. I also have an appointment with a Jefferson neurologist for a second opinion.
Lord-willing, we will get definitive answers soon, and I will know what it's like to be completely pain free! At least the pain is manageable at this point, so I can function with it.
In the meantime, we are enjoying being reunited as a family. I got to spend some special cuddle time with the boys when they came home from school today. We have a lot to be thankful for this Thanksgiving!
Happy Thanksgiving to all of you!
My spinal MRI showed no additional lesions for which we are thankful. There are still no answers as to what is causing my migraine, but we are checking more and more possibilities off the list. The new meds I started on last night helped get the pain under control, so I now will be taking them regularly. I have to follow up with my neurologist in about a week. I also have an appointment with a Jefferson neurologist for a second opinion.
Lord-willing, we will get definitive answers soon, and I will know what it's like to be completely pain free! At least the pain is manageable at this point, so I can function with it.
In the meantime, we are enjoying being reunited as a family. I got to spend some special cuddle time with the boys when they came home from school today. We have a lot to be thankful for this Thanksgiving!
Happy Thanksgiving to all of you!
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| Josh cried tears of joy when he saw me and has given me lots of hugs and kisses. I was thankful that I got home 30 minutes before his bus dropped him off so that I could surprise him. I was glad it gave me enough time to get a real shower so I felt human again too! |
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| David has been giving me lots of hugs and cute smiles that say, "I'm so glad you are home" |
Tuesday, November 22, 2011
In the Midst of the Storm
So many times in the last year, we have asked ourselves, "What is God trying to do?" or "Why is Satan so insistent in preventing us from doing the Lord's work?" Ever since we have seriously started to pursue answering God's call to missions, we have been accosted on all fronts and so many times.
Right now we are in the midst of a very deep trial, and the whole family is feeling as if our world has been turned upside down. Tuesday, November 1, David woke me up in the middle of the night with a nightmare. I knew as soon as I was awake that something was terribly wrong with my head. I knew right away I had an extremely intense migraine with severe photophobia (intolerance to light) and nausea.
Two weeks before that, I had 2 migraines, 1 lasting 2 days and another lasting 1 that were pretty debilitating, so once I felt the pain I decided to call the doctor once the office opened up. My doctor had me come right in, gave me a shot of pain meds and a prescription to stay on the pain meds for 8 days. The shot took the edge off the pain and the pills did nothing. By Thursday, I was in so much pain, I could not function, so I called the doctor again who decided to order a STAT CTscan of my brain and got me a same-day appointment with a neurologist. Within an hour after getting the CTscan done, my doctor called me telling me the scan showed something in my brain and a STAT MRI was needed for a better picture and blood work needed to be done. The neurologist put me on steroids and gave me the strongest migraine medicine on the market. Both of which never helped with the pain. That Friday, I got the MRI which confirmed that I had a spot in my Right Parietal lobe of my brain sitting on top of my Right ventricle. The bloodwork showed nothing but an elevated White Blood Cell (WBC) count. My doctor got me in to see a neurosurgeon that following Friday who felt that the spot was not a tumor but was not sure what it was and wanted a repeat MRI in 3 months to see if there were any changes.
During this week, we were experimenting with other drugs in an attempt to get pain relief but to no avail. The neurosurgeon gave me another drug which also didn't help. A week later a week ago Monday), I was so desperate for pain relief that I called all of my doctors hoping to get some answers and some relief, so I started on 2 new drugs which helped bring the pain down significantly but not entirely, and more blood work was done. That catches you up to speed to this week.
At 1am Sunday, November 20 (Happy Birthday to me), I woke up in excruciating pain noting the pain had moved higher up in my head. I finally managed to fall back asleep at 4 to get up at 6:45 to discover that my equilibrium was totally off making it difficult to find my center of balance while sitting or standing. I called my neurologist who told me to go to the ER to be evaluated immediately. Realizing that my children's choir was supposed to sing during our church service in 2 hours, I decided to postpone the ER trip so that I could play the piano for the children's choir to sing (I was quite the site playing with sunglasses on, but at least that allowed me to pull it off). As soon as the children's choir was done, Tim and I left the boys with a friend at church and headed to the ER. They instantly gave me a strong narcotic to get control of the pain, but it didn't work, and the pain was only getting worse. Needless to say, they were quick to decide to admit me for further testing and drug experimentation. That was not what I was going for as a birthday present!
Today was day 3 in the hospital, and we still don't have any conclusive answers although we are getting closer. I've had a repeat CTscan showing no worsening of my brain lesion and no new lesions or bleeds. I've had a ton of blood work only revealing I'm anemic (no surprise with the anti-inflammatories I've been taking despite my blood clotting disorder) and a couple of other minor, insignificant issues. I had a lumbar puncture done yesterday to rule out several issues. I've received some of the results showing I have a few WBCs present which is abnormal but could also be a normal abnormality for me - not conclusive. We are still waiting on the tests for Multiple Sclerosis (MS) from the lumbar puncture as they take a few more days. The doctors all say that the lesion looks like what is seen in people with MS, but lesions show up farther along in the disease process, so I should have already been having typical MS symptoms which I have not had.
Today, the neurologist found a couple of concerning things in my neurological exam she did that she wants to investigate. She has ordered for me to get a MRI of my spine done in the morning to look for addition lesions in my spine and has changed my pain meds to try to get me relief and on drugs that I can actually take at home. Today has been a lot harder on pain especially since I had to "detox" this afternoon from the previous pain meds before starting the new ones tonight. However, the nausea is greatly improved, and I was able to finally tolerate normal food!
Ok, so enough about me. My boys are greatly suffering having me here at the hospital. They miss me and are worried about me. Josh has already verbalized concern of my dying, and David has gotten really aggressive with Josh because of his own worries which he has not been very good at verbalizing. The hospital has made exceptions for the boys so that they can visit me to help alleviate their anxiety, but it's still not like having their mommy home. Tim is wearing himself out trying to hold up the home-front, working a couple of hours, caring for me, and trying to be a single parent. We all are in desperate need of prayer!
Tonight there were tears shed over the worry that I may not be released from the hospital before Thanksgiving. We are praying desperately for a miracle and that things will improve and answers will be received so that we can try to pick up the pieces of our lives and try to gain a semblance of normalcy. Tonight Tim and I both recognized that even though our faith in God's goodness and sovereignty has remained rock solid through all of this and God's peace has been so amazing to us, our boys are at a crisis point in their faith and trust in God. They keep praying for mommy to get better (that's been their prayer now for 22 days) and for mommy to get out of the hospital (a fervent prayer for 3 days), and to them, God has remained silent. God is stretching them in ways in which most kids their age don't have to go through. We pray that God will use this scary time to open their eyes to His goodness and His perfect plan and timing.
This verse has taken on special meaning for our family during this current storm:
"Be anxious for nothing, but in everything by prayer and supplication with THANKSGIVING, let your requests be made known unto God, and the peace of God, which passes all understanding, shall keep your hearts and minds through Christ Jesus." Philippians 4:6,7
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| Our Yearly Family Picture |
Right now we are in the midst of a very deep trial, and the whole family is feeling as if our world has been turned upside down. Tuesday, November 1, David woke me up in the middle of the night with a nightmare. I knew as soon as I was awake that something was terribly wrong with my head. I knew right away I had an extremely intense migraine with severe photophobia (intolerance to light) and nausea.
Two weeks before that, I had 2 migraines, 1 lasting 2 days and another lasting 1 that were pretty debilitating, so once I felt the pain I decided to call the doctor once the office opened up. My doctor had me come right in, gave me a shot of pain meds and a prescription to stay on the pain meds for 8 days. The shot took the edge off the pain and the pills did nothing. By Thursday, I was in so much pain, I could not function, so I called the doctor again who decided to order a STAT CTscan of my brain and got me a same-day appointment with a neurologist. Within an hour after getting the CTscan done, my doctor called me telling me the scan showed something in my brain and a STAT MRI was needed for a better picture and blood work needed to be done. The neurologist put me on steroids and gave me the strongest migraine medicine on the market. Both of which never helped with the pain. That Friday, I got the MRI which confirmed that I had a spot in my Right Parietal lobe of my brain sitting on top of my Right ventricle. The bloodwork showed nothing but an elevated White Blood Cell (WBC) count. My doctor got me in to see a neurosurgeon that following Friday who felt that the spot was not a tumor but was not sure what it was and wanted a repeat MRI in 3 months to see if there were any changes.
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| Lesion (note, Right side of my brain is on the left of the picture) |
During this week, we were experimenting with other drugs in an attempt to get pain relief but to no avail. The neurosurgeon gave me another drug which also didn't help. A week later a week ago Monday), I was so desperate for pain relief that I called all of my doctors hoping to get some answers and some relief, so I started on 2 new drugs which helped bring the pain down significantly but not entirely, and more blood work was done. That catches you up to speed to this week.
At 1am Sunday, November 20 (Happy Birthday to me), I woke up in excruciating pain noting the pain had moved higher up in my head. I finally managed to fall back asleep at 4 to get up at 6:45 to discover that my equilibrium was totally off making it difficult to find my center of balance while sitting or standing. I called my neurologist who told me to go to the ER to be evaluated immediately. Realizing that my children's choir was supposed to sing during our church service in 2 hours, I decided to postpone the ER trip so that I could play the piano for the children's choir to sing (I was quite the site playing with sunglasses on, but at least that allowed me to pull it off). As soon as the children's choir was done, Tim and I left the boys with a friend at church and headed to the ER. They instantly gave me a strong narcotic to get control of the pain, but it didn't work, and the pain was only getting worse. Needless to say, they were quick to decide to admit me for further testing and drug experimentation. That was not what I was going for as a birthday present!
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| Family Time in the Hospital on Day 2 |
Today was day 3 in the hospital, and we still don't have any conclusive answers although we are getting closer. I've had a repeat CTscan showing no worsening of my brain lesion and no new lesions or bleeds. I've had a ton of blood work only revealing I'm anemic (no surprise with the anti-inflammatories I've been taking despite my blood clotting disorder) and a couple of other minor, insignificant issues. I had a lumbar puncture done yesterday to rule out several issues. I've received some of the results showing I have a few WBCs present which is abnormal but could also be a normal abnormality for me - not conclusive. We are still waiting on the tests for Multiple Sclerosis (MS) from the lumbar puncture as they take a few more days. The doctors all say that the lesion looks like what is seen in people with MS, but lesions show up farther along in the disease process, so I should have already been having typical MS symptoms which I have not had.
Today, the neurologist found a couple of concerning things in my neurological exam she did that she wants to investigate. She has ordered for me to get a MRI of my spine done in the morning to look for addition lesions in my spine and has changed my pain meds to try to get me relief and on drugs that I can actually take at home. Today has been a lot harder on pain especially since I had to "detox" this afternoon from the previous pain meds before starting the new ones tonight. However, the nausea is greatly improved, and I was able to finally tolerate normal food!
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| Despite my pain level being an 8, I was able to help David have an Indian Costume for his Thanksgiving party tomorrow. I was so thankful for my friend Joy who bought me the brown t-shirt and gave me the idea for making the costume. It was a special time for David and me, and it gave me so much joy to know that even though I was stuck in the hospital, I could still be a mom and provide my child with a costume for his special day |
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| Josh chilled out in my bed enjoying being close to me as I worked on David's costume. He also enjoyed watching the program on Animal Planet since we don't have a TV at home. |
Ok, so enough about me. My boys are greatly suffering having me here at the hospital. They miss me and are worried about me. Josh has already verbalized concern of my dying, and David has gotten really aggressive with Josh because of his own worries which he has not been very good at verbalizing. The hospital has made exceptions for the boys so that they can visit me to help alleviate their anxiety, but it's still not like having their mommy home. Tim is wearing himself out trying to hold up the home-front, working a couple of hours, caring for me, and trying to be a single parent. We all are in desperate need of prayer!
Tonight there were tears shed over the worry that I may not be released from the hospital before Thanksgiving. We are praying desperately for a miracle and that things will improve and answers will be received so that we can try to pick up the pieces of our lives and try to gain a semblance of normalcy. Tonight Tim and I both recognized that even though our faith in God's goodness and sovereignty has remained rock solid through all of this and God's peace has been so amazing to us, our boys are at a crisis point in their faith and trust in God. They keep praying for mommy to get better (that's been their prayer now for 22 days) and for mommy to get out of the hospital (a fervent prayer for 3 days), and to them, God has remained silent. God is stretching them in ways in which most kids their age don't have to go through. We pray that God will use this scary time to open their eyes to His goodness and His perfect plan and timing.
This verse has taken on special meaning for our family during this current storm:
"Be anxious for nothing, but in everything by prayer and supplication with THANKSGIVING, let your requests be made known unto God, and the peace of God, which passes all understanding, shall keep your hearts and minds through Christ Jesus." Philippians 4:6,7
Thursday, September 29, 2011
David's Infection Ends
Thanks to those of you who prayed so fervently for David and for your kind words. I always take the time to read such comments to David so that he knows how loved he is and how many people are praying for him.
This latest infection was pretty intense. David had high fevers for 5 days total making it seem as if the fevers were never going to go away to him and to us. It was stressful for me to stay on top of the Tylenol/ibuprofen cycle to maintain a full-strength level of an anti-pyrectic in David's body at all time because even with that, David's fevers soared to above 103, particularly in the evenings. David would wake up in the middle of the night burning up with a fever waking me up 1-2 times nightly making it so hard for me to function not to mention allow my body to fight the cold I had been fighting since last Monday.
My heart nearly broke when David asked me by the 4th night if he was going to die. I reassured him that God was in control and that his fevers were being controlled and that he would not die from his fevers at this point. David then asked why God wasn't answering his prayers since each day he was praying and asking God to take away his fevers. I then reminded him that sometimes God answers, "Wait." He seemed content with our discussion. When he woke up on the 6th day completely fever free and having had slept through the entire night, he was quick to tell me that now God answered his prayers, "Yes!" David's lung function has improved and he has been able to be weaned from his twice a day nebulizer treatments as well. After missing school Friday and Monday, David had a lot of make-up work to do. He has had such a good spirit about working so faithfully on his class work and is almost completely finished. Thankfully, his teacher gave him a few days to complete it.
This afternoon, David will be getting his 6th antibody blood transfusion, the last of the twice/week transfusions. Next week, he starts getting the transfusions once a week from here on out unless his body starts to kick into gear and starts producing a sufficient amount of antibodies on its own.
After next week, his body should be at a therapeutic antibody level and capable of fighting off infection, so time will tell whether these transfusions are working or not. Shortly after that, he will be weaned off his prophylactic antibiotic to see if the transfusions are sufficient.
Thanks for your continued prayers for our precious little boy!
This latest infection was pretty intense. David had high fevers for 5 days total making it seem as if the fevers were never going to go away to him and to us. It was stressful for me to stay on top of the Tylenol/ibuprofen cycle to maintain a full-strength level of an anti-pyrectic in David's body at all time because even with that, David's fevers soared to above 103, particularly in the evenings. David would wake up in the middle of the night burning up with a fever waking me up 1-2 times nightly making it so hard for me to function not to mention allow my body to fight the cold I had been fighting since last Monday.
My heart nearly broke when David asked me by the 4th night if he was going to die. I reassured him that God was in control and that his fevers were being controlled and that he would not die from his fevers at this point. David then asked why God wasn't answering his prayers since each day he was praying and asking God to take away his fevers. I then reminded him that sometimes God answers, "Wait." He seemed content with our discussion. When he woke up on the 6th day completely fever free and having had slept through the entire night, he was quick to tell me that now God answered his prayers, "Yes!" David's lung function has improved and he has been able to be weaned from his twice a day nebulizer treatments as well. After missing school Friday and Monday, David had a lot of make-up work to do. He has had such a good spirit about working so faithfully on his class work and is almost completely finished. Thankfully, his teacher gave him a few days to complete it.
This afternoon, David will be getting his 6th antibody blood transfusion, the last of the twice/week transfusions. Next week, he starts getting the transfusions once a week from here on out unless his body starts to kick into gear and starts producing a sufficient amount of antibodies on its own.
After next week, his body should be at a therapeutic antibody level and capable of fighting off infection, so time will tell whether these transfusions are working or not. Shortly after that, he will be weaned off his prophylactic antibiotic to see if the transfusions are sufficient.
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| David loves to dress up and was excited to get this Captain America costume for his birthday as well as the helmet and shield. This picture was taken 4 days before his body came down with the infection |
Friday, September 23, 2011
Quick David Update
The doctor thinks David has a viral infection, but given David's high fevers and history of bacterial infections that are difficult to treat, he doesn't want to take any chances, so he's doubled the dose of antibiotics that David has been taking prophylactically just in case. Also, David's lung function is decreased, so to prevent things from getting worse if the infection moves to his airways, he wants him to have nebulizer treatments twice a day until his infection clears up. Today, I had a hard time controlling David's fevers and they got really high, but I was thankful his fever started to drop as I got him tucked into bed for the night.
Thanks for your continued prayers. We are hoping David has a better night tonight. Last night was rough with two intense night terrors and then a raging fever because the ibuprofen and Tylenol had worn off. I am physically exhausted and have been fighting a cold since Monday that has now moved to my lungs. Tim and Joshua continue to be healthy, but Tim is getting just as worn down as I am.
Thanks for your continued prayers. We are hoping David has a better night tonight. Last night was rough with two intense night terrors and then a raging fever because the ibuprofen and Tylenol had worn off. I am physically exhausted and have been fighting a cold since Monday that has now moved to my lungs. Tim and Joshua continue to be healthy, but Tim is getting just as worn down as I am.
Thursday, September 22, 2011
David has a new infection
This afternoon, David came down with a high fever once again. He has not had an active infection since the beginning of August making it the longest stretch without infection this year. However, it is discouraging that he should get an infection considering that he is still on his prophylactic antibiotic and has had 3 antibody blood transfusions. However, I must be patient since David's doctor did say it would take the full 3 weeks of having transfusions twice a week to build up his antibody level which is why he wanted David to continue on the prophylactic antibiotic for 1 month after the transfusions started.
The good news is that David already has a follow-up appointment scheduled for tomorrow with his immune specialist, so I don't need to worry about getting a last-minute appointment for him. David just had his 4th transfusion tonight and did well with the transfusion despite burning up with a fever.
Please be in prayer that David will get better quickly and for wisdom for his doctor in treating the infection properly. Thanks so much for bringing our little boy before God's throne of grace!
The good news is that David already has a follow-up appointment scheduled for tomorrow with his immune specialist, so I don't need to worry about getting a last-minute appointment for him. David just had his 4th transfusion tonight and did well with the transfusion despite burning up with a fever.
Please be in prayer that David will get better quickly and for wisdom for his doctor in treating the infection properly. Thanks so much for bringing our little boy before God's throne of grace!
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| David doting on his cousin Grace when she was about 24 hours old |
Wednesday, September 21, 2011
And the blood transfusions continue
David continues to do well with the blood transfusions. By his second transfusion, I was declared "independent" in my ability to administer the transfusion by myself, so I have been on my own since then. Even with all of my nursing training and my experiences of sticking needles into people, I was never prepared for having to stick a needle into my own child. The first time I had to do it, I was sick to my stomach. It was also troubling to then sit down next to my child to cuddle with him as blood components from 70+ donors entered his little body. I'm hoping that as time goes on, the experience will get a little bit easier for me.
David is the trooper in the whole experience. Even through the torture of removing the sticky tape that holds the needle into place, David never complains. He likes to help and be a part of the process in any way he can including turning the pump on to start the transfusion. He even finds joy and humor out of the transfusion process as he shared with us this past Monday. We have to rotate sites used for the transfusion, so we used his thigh as opposed to his abdomen on Monday evening. When the transfusion is done, there is a large lump under the skin where the fluid takes time to be absorbed into the body. Because the transfusion was done on David's leg, the lump was much more noticeable, and it was inches directly above his knee. Once the needle was out and the injection site bandaged, David stood up, looked down at his leg and said, "Hey, look! I've got 2 knees on my leg!" Thinking he was disturbed by this discovery, I quickly reassured him that the swelling would go down overnight and be almost gone by the morning. He then responded, "Oh man! I want it to stay so I can make people laugh!"
It is so evident that the joy of the Lord is David's strength, even though David is only 5 years old. His faith is so strong and his trust in God so sincere. I pray that God would help me to find such strength in my joy of the Lord as well!
David is the trooper in the whole experience. Even through the torture of removing the sticky tape that holds the needle into place, David never complains. He likes to help and be a part of the process in any way he can including turning the pump on to start the transfusion. He even finds joy and humor out of the transfusion process as he shared with us this past Monday. We have to rotate sites used for the transfusion, so we used his thigh as opposed to his abdomen on Monday evening. When the transfusion is done, there is a large lump under the skin where the fluid takes time to be absorbed into the body. Because the transfusion was done on David's leg, the lump was much more noticeable, and it was inches directly above his knee. Once the needle was out and the injection site bandaged, David stood up, looked down at his leg and said, "Hey, look! I've got 2 knees on my leg!" Thinking he was disturbed by this discovery, I quickly reassured him that the swelling would go down overnight and be almost gone by the morning. He then responded, "Oh man! I want it to stay so I can make people laugh!"
Monday, September 12, 2011
David's Transfusion Update
David's 1st antibody blood transfusion went smoothly this evening. It took a little over an hour to infuse, and David did great - no adverse reactions or side effects! We are praising the Lord that it went so smoothly.
We are also grateful for all of the prayers of friends and families and the encouraging notes and phone calls and for those who are providing meals for us as we get used to the whole transfusion process. This whole ordeal has not been easy for us. We are thankful that David is such a tough and brave kid. He definitely makes an unhappy situation a little easier to handle since he's such a trooper.
David's next transfusion will be on Thursday at 4 p.m.
We are also grateful for all of the prayers of friends and families and the encouraging notes and phone calls and for those who are providing meals for us as we get used to the whole transfusion process. This whole ordeal has not been easy for us. We are thankful that David is such a tough and brave kid. He definitely makes an unhappy situation a little easier to handle since he's such a trooper.
David's next transfusion will be on Thursday at 4 p.m.
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| David got to start his own transfusion |
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| This is David's disgusted look at Daddy for taking pictures of him |
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| David needs to have his temperature, blood pressure, and pulse monitored before, during, and after the transfusion. Big brother Joshua is supervising the vital sign assessment |
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| Chilling out on the couch during the transfusion watching a movie |
Sunday, September 11, 2011
David's Health Update
Tomorrow is the first treatment for David's (just turned 5 yrs old on Sept. 9) new antibody treatment. He has been diagnosed with Primary Immune Deficiency Disease - more specifically IgG Immunodeficiency Disorder. Basically, his body does not produce the IgG antibodies like it should causing him to get many bacterial infections like sinus infections, ear infections, pneumonia, bronchitis, etc. David has gone through extensive testing to try to find a cause for his immune deficiency, but there are not explanations at this point. We have exhausted all of the resources available at this point, and the prophylactic antibiotic treatment he has had off and on for the past 2 years has proven ineffective since he continues to get infections while on the low doses of antibiotics. Antibody blood transfusions is the last attempt to keep David healthy and off antibiotics to prevent any complications from long-term antibiotic use.
For the next 3 weeks we are going to have to give him 2 infusions a week to boost his immune system. Each infusion should last about an hour. I expect that the first one may take 2 hours from start to finish since the whole process will be so new to us. After the 3 weeks, David will receive the infusions weekly. These infusions will continue indefinitely. Since we don't have an explanation for his disorder, we don't know at this point, if he will need these transfusions for the rest of his life or just the next couple of years until his immune system starts functioning properly.
The transfusions will take place at our home. We will numb the area first. Then insert a subcutaneous needle which will be connected to a spring-loaded pump which will slowly push the antibodies over an hour's time.
He will be able to walk around and do normal activities while the transfusion takes place. Certainly, the typical light saber fights and wrestling matches in the living room will need to be postponed until the transfusion is complete.
We plan to make the first transfusion a family event and watch the movie "Cheaper By The Dozen" together. That should be fun.
Our church was graciously offered to provide us with meals as we adjust to the transfusions and a new weekly routine. This will be a huge blessing to us as the last few weeks have been very overwhelming with preparing for the transfusions as well as keeping up with David's and Josh's issues.
We both work all day tomorrow, so we will be arriving home in time to meet the nurse coming to our house at 5:00 tomorrow night to get things set up and start the transfusion. We will learn how to do the whole process so that after this first week, we can do the transfusions ourselves. It will be important to monitor David for any adverse reactions to the blood transfusions, so we will be taking his blood pressure, temperature, and pulse rate before, during, and after the transfusions.
Please pray with us that the transfusion will go smoothly with no adverse side effects and that these transfusions will allow David to stay healthy.
On an exciting note, God answered our prayers regarding David's hole in his heart! We found out at the end of August that David will not need surgery to close up his hole. We are thankful that God has chosen to spare David of yet one more surgery!
For the next 3 weeks we are going to have to give him 2 infusions a week to boost his immune system. Each infusion should last about an hour. I expect that the first one may take 2 hours from start to finish since the whole process will be so new to us. After the 3 weeks, David will receive the infusions weekly. These infusions will continue indefinitely. Since we don't have an explanation for his disorder, we don't know at this point, if he will need these transfusions for the rest of his life or just the next couple of years until his immune system starts functioning properly.
The transfusions will take place at our home. We will numb the area first. Then insert a subcutaneous needle which will be connected to a spring-loaded pump which will slowly push the antibodies over an hour's time.
He will be able to walk around and do normal activities while the transfusion takes place. Certainly, the typical light saber fights and wrestling matches in the living room will need to be postponed until the transfusion is complete.
We plan to make the first transfusion a family event and watch the movie "Cheaper By The Dozen" together. That should be fun.
Our church was graciously offered to provide us with meals as we adjust to the transfusions and a new weekly routine. This will be a huge blessing to us as the last few weeks have been very overwhelming with preparing for the transfusions as well as keeping up with David's and Josh's issues.
We both work all day tomorrow, so we will be arriving home in time to meet the nurse coming to our house at 5:00 tomorrow night to get things set up and start the transfusion. We will learn how to do the whole process so that after this first week, we can do the transfusions ourselves. It will be important to monitor David for any adverse reactions to the blood transfusions, so we will be taking his blood pressure, temperature, and pulse rate before, during, and after the transfusions.
Please pray with us that the transfusion will go smoothly with no adverse side effects and that these transfusions will allow David to stay healthy.
On an exciting note, God answered our prayers regarding David's hole in his heart! We found out at the end of August that David will not need surgery to close up his hole. We are thankful that God has chosen to spare David of yet one more surgery!
Friday, August 5, 2011
Update on David
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| David had to try on and pose with Josh's horse riding gear on |
I met with David's specialist today to discuss the blood test results from CHOP from long ago (it took 1 1/2 months for him to get the results) as well as other tests he had David get done last week. Unfortunately, the CHOP blood work came back negative for an underlying immune system problem which means that we still don't know the cause of his IgG Immune Deficiency (his body doesn't produce enough of the IgG antibody making him susceptible to all of the crazy bacterial infections he struggles with). This means the only other recourse is antibody blood transfusions! David can't stay on prophylactic antibiotics indefinitely because it's not good for his system. Plus, it doesn't work since for over a year now, he has been developing infections while on the antibiotics.
There is a new way of administering the antibodies which is subcutaneously. Although, all of the same disease transmission risks of a blood transfusion still apply (and is multiplied by 70 since the antibodies are from 70 donors rather than 1), there are not the typical allergic/adverse reactions to blood transfusions with this new method, unlike with the IV method. Screening and processing has improved greatly, and the last disease transmission scare was in 1997 with this kind of transfusion. Instead of needing a 3 hour IV every month, David will be getting a subcutaneous instillation of antibodies that will take 1-1.5 hours every week. We do not know if this will have to be lifelong or not. Young children with this disorder typically outgrow it by the time they are 4. David will soon be 5, so his future outcome with this disorder is unknown. The plan for now is to start as soon as the home health nursing agency can bring us the necessary equipment and teach us how to perform the procedure. David's doctor hopes that we can stop the infusions next summer to see if David can hold his own when the infection rate is at its lowest. This summer has been filled with multiple and recurring infections for David despite the prophylactic antibiotics.
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| David our crazy, daredevil child |
Thanks for your continued prayers on behalf of our precious little boy. Three weeks from today, we will find out if the hole in his heart has closed or whether he will require surgery down the road for that as well.
In case you missed previous posts explaining David's health issues, read David's Complicated Medical History and David's Current Situation and Prayer Needs.
Tuesday, August 2, 2011
Reminding ourselves of the TRUTH!
How often, Satan takes advantage of our hard and dark times of life to feed us his lies. When we are in this vulnerable position, it often is easy to buy into those lies and allow them to pervade the truth. We might refute the lies at first, forcing Satan to get clever. He does not give in easily and will even use the good things in life to make us question and start to doubt. We must stand resolute and not let Satan win! We must remind ourselves of the TRUTH!
God's Word is TRUTH! Spending time in God's Word daily will help us to remember the truth. Often, we need to read the same truths over and over again to truly believe them and to be able to access them to refute the lies Satan is feeding us. We need to remember to always evaluate our thoughts and feelings through the truths of the Bible. Is my thought God's truth or Satan's lie? Is my feeling a result of God's truth or Satan's lie? I have been finding myself asking these questions quite frequently lately. I must stand strong. I can't let Satan win. The TRUTH of God's Word must stand victorious in my life!
As life overwhelms me, I am reminded of God's TRUTH, and I refute my circumstances, thoughts, and feelings with it! I find that it helps me to write my thoughts and feelings down so that I can visually discern what is TRUTH and what is not. This helps me tremendously as I seek to glorify God in my thoughts, feelings, and actions.
(c) 2011 Christine Russell.
God's Word is TRUTH! Spending time in God's Word daily will help us to remember the truth. Often, we need to read the same truths over and over again to truly believe them and to be able to access them to refute the lies Satan is feeding us. We need to remember to always evaluate our thoughts and feelings through the truths of the Bible. Is my thought God's truth or Satan's lie? Is my feeling a result of God's truth or Satan's lie? I have been finding myself asking these questions quite frequently lately. I must stand strong. I can't let Satan win. The TRUTH of God's Word must stand victorious in my life!
As life overwhelms me, I am reminded of God's TRUTH, and I refute my circumstances, thoughts, and feelings with it! I find that it helps me to write my thoughts and feelings down so that I can visually discern what is TRUTH and what is not. This helps me tremendously as I seek to glorify God in my thoughts, feelings, and actions.
My Faithful Friend
By Christine Russell
Life has come crumbling down around me.
You stand behind me picking up the pieces.
The darkness envelops me making me stumble.
You go before me leading me on solid ground.
The burdens of life press down on me so that I fall.
You put your arms under me and carry me on.
I am all alone in my grief, without a friend.
You stand beside me offering Your hand.
You are my faithful Friend bringing me to an expected end.
You never fail me. Your grace sustains me.
You are the only one I can trust. I rest in Your love.
You are my faithful Friend.
My heart cries in the midst of my deepest struggles.
You hear my pain and offer comfort.
I find myself alone with no one to understand.
You remind me You know me better than I know myself.
There is no one to listen when I just need to talk.
You are always present ready to hear my prayers.
The storm rages around me threatening my life.
You offer peace and joy in the midst of it.
You are my faithful Friend bringing me to an expected end.
You never fail me. Your grace sustains me.
You are the only one I can trust. I rest in Your love.
You are my faithful Friend.
There is none like You. I do not deserve someone like You.
Yet, you embrace me; You protect me; You sustain me.
I am not faithful. I am not loving. I am not grateful.
Yet, You forgive me; You uphold me; You accept me.
You love me, my faithful Friend!
(c) 2011 Christine Russell.
Tuesday, May 31, 2011
Set Free from the Chains - Part III of Persevering in this Race of Life
<If you missed the previous parts to my story, checkout Part I and Part II>
Things improved greatly since my junior year of high school in my struggle to heal from being molested until my sophomore year of college. I had helped to organize a missionary forum through our Student Missionary Fellowship during a missions conference week. One of the missionaries who was on the forum looked, acted, and sounded like the man who molested me. I experienced for the first time the “feeling” of the sexual abuse rather than just “seeing” it as on onlooker. This sensation rattled every fiber of my being.
Now I must say that God definitely has a sense of humor, because He chose to use a guy friend of mine (the closest and one of the first male friends I was ever able to have after working through my issues in my junior year of high school) to be the one to minister to my deeply troubled soul. This friend called me on the phone that same night and realized something was terribly wrong. He met me outside my dorm where I poured out my heart to him. He held my hand to comfort me (and I didn’t even flinch) and stood at my side while I called to talk to my parents. God certainly does work in mysterious ways, and little did I know that God had ordained for this guy friend named Tim to become my husband in a few years.
A wonderful psychology professor at my Christian college offered to provide free counseling. Tim attended the sessions with me for moral support. Through those wonderful counseling sessions, I came to the realization that God was powerful enough to totally remove those scars that I had convinced myself that I had to live with. This professor used thought-stopping therapy with me by using specific Bible verses about thoughts that I had to memorize for the purpose to quoting in my head every time Satan had my mind drift to my struggles, which proved to be extremely helpful. In the end, I gained complete victory over being molested and was able to forgive my molester and live a life free of pain, fear, and hate. Like the songwriter Chris Tomlin wrote about the power of the forgiveness of sins in “Amazing Grace (My Chains Are Gone)”, I could say, “My chains are gone, I've been set free.”
Things improved greatly since my junior year of high school in my struggle to heal from being molested until my sophomore year of college. I had helped to organize a missionary forum through our Student Missionary Fellowship during a missions conference week. One of the missionaries who was on the forum looked, acted, and sounded like the man who molested me. I experienced for the first time the “feeling” of the sexual abuse rather than just “seeing” it as on onlooker. This sensation rattled every fiber of my being.
Now I must say that God definitely has a sense of humor, because He chose to use a guy friend of mine (the closest and one of the first male friends I was ever able to have after working through my issues in my junior year of high school) to be the one to minister to my deeply troubled soul. This friend called me on the phone that same night and realized something was terribly wrong. He met me outside my dorm where I poured out my heart to him. He held my hand to comfort me (and I didn’t even flinch) and stood at my side while I called to talk to my parents. God certainly does work in mysterious ways, and little did I know that God had ordained for this guy friend named Tim to become my husband in a few years.
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| Tim and me at the Christmas Banquet in 1999 (this was the first event that I had ever gone to with a guy escort besides my dad) - We were really good friends at this point but far from dating |
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| This picture was taken during Spring Break, days before the dark night of the Missionary Forum. Tim & another good friend from college came to my house for Spring Break. Also present in the pic are my sister & brother (this was taken outside our church) |
A wonderful psychology professor at my Christian college offered to provide free counseling. Tim attended the sessions with me for moral support. Through those wonderful counseling sessions, I came to the realization that God was powerful enough to totally remove those scars that I had convinced myself that I had to live with. This professor used thought-stopping therapy with me by using specific Bible verses about thoughts that I had to memorize for the purpose to quoting in my head every time Satan had my mind drift to my struggles, which proved to be extremely helpful. In the end, I gained complete victory over being molested and was able to forgive my molester and live a life free of pain, fear, and hate. Like the songwriter Chris Tomlin wrote about the power of the forgiveness of sins in “Amazing Grace (My Chains Are Gone)”, I could say, “My chains are gone, I've been set free.”
Monday, May 16, 2011
David's Current Situation and Prayer Needs
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| October 2010 |
On Wednesday, David will be having a Milk Scan done at Children's Hospital of Philadelphia. He had one of these done as an infant which revealed that his GERD was the cause of his blue spells. He has since been discharged by his GI doctor who said her GERD is resolved. His allergist and ENT both wonder if there's residual GERD going on causing the sinus infections. David is also going to be tested for Cystic Fibrosis, which could also be a culprit. David is going to also have a comprehensive immune work-up done, which will give a better picture of how his immune system is functioning to see if there are any other defects contributing to the IgG Immune Deficiency. These last 2 tests will be done at CHOP on June 14.
On August 26th, David will be having his 5 year echocardiogram done to check to see his the hole in his heart has closed. We are praying that the hole has closed on its own with God's help. If it hasn't, David will need heart surgery to close it by the time he becomes a teenager.
Today marks day 5 of really high fevers for David. He hasn't really been acting sick except for an unpredictable appetite, momentary complaints of an upset stomach, and a cough that went right to an asthma flare (it's not been fun waking up at night to his complaints of not being able to breathe, hearing him wheeze, and having to do nebulizer treatments while half asleep). He only gets lethargic when his fever gets over 103. It has gotten as high as 104 (under the arm). I took him to the doctor today, and he is being treated for strep throat. We will know for sure if that's what he has when we get the culture results in 2-3 days. This marked a full 3 week of no antibiotics for David, which sadly is a record for him since last year! He just came off of a 30 day treatment on Augmentin (a very strong antibiotic that's horrible on the belly), which seemed to buy him a little time, but definitely not enough.
So that pretty much sums up David's life, medically speaking. As you think about our family and our precious children, please lift little David up in your prayers! We praise the Lord for this unexpected child who brings us much joy with his big heart for God and people!
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| March 2011 |
David's Complicated Medical History
For those of you who are friends with me on facebook, you know David, my 4 year old son better than those of you who only follow my blog of the last few months. Now it's time for me to get my blog current with the life of precious David!
David is our sweet, thoughtful, shy-upon-first-meeting, easy-going, and obedient child. Everyone who meets him either tells us he's "so cute" or "so sweet!" Behind his lovable face and bubbling personality is a body that has known its struggles for all of its 4.5 years of life. Although David was born a healthy baby despite being borderline premature, within a few months, we knew something wasn't right. To make a very long and complicated story short, I'll give you a quick timeline of his young life:
3 months old - mouth area, hands, feet, legs started turning blue at various times when he was lying on his back
4 months old - found out David had 3 heart defects including a hole in his heart and an artery coming off of his aorta that was going the wrong way and pressing against his esophagus
5 months old - diagnosed with Gastroesophageal Disease (GERD - "reflux")
7 months old - scheduled for open heart surgery which ended up being canceled 2 weeks before the surgery when a cardiac MRI showed his heart defects weren't the source of his blue spells (ended up realizing his GERD was the culprit after a milk scan was done- he was aspirating on his relux)
9 months old - big month of development because he finally was put on the right medicine to control his acid reflux -- started babbling for the first time (delayed in speech because of pain from GERD); was no longer considered "failure to thrive" for his weight/height
0-1 years - several bouts of bronchiolitis and 1 bout of pneumonia during the winter and spring; exhibited allergic symptoms but tested negative for all allergy testing - put on allergy medicine anyway to control symptoms (doctors thought he just had an immature immune system and would outgrow it)
1-2 years - multiple ear infections; diagnosis of asthma
2-3 years - fractured and lacerated left index finger in heavy metal door at church requiring stitches and splinting; got a concussion because he talked his brother into sending him down the stairs in a laundry basket only to crash into the entertainment center; Surgery to drain infection in his ears that was resistant to 5 different antibiotics and to insert tubes in his ear drums (Jan. '09); start of multiple sinus infections
3-4 years - multiple sinus infections (at this point, he had been on antibiotics more months of his life than he had not been on an antibiotic); Surgery to remove his adenoids (Feb. '10); diagnosis of IgG Immune Deficiency
For a summary of David's current health concerns and needs for prayer, see the next blog.
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| One of David's Birth Announcement Pictures |
David is our sweet, thoughtful, shy-upon-first-meeting, easy-going, and obedient child. Everyone who meets him either tells us he's "so cute" or "so sweet!" Behind his lovable face and bubbling personality is a body that has known its struggles for all of its 4.5 years of life. Although David was born a healthy baby despite being borderline premature, within a few months, we knew something wasn't right. To make a very long and complicated story short, I'll give you a quick timeline of his young life:
3 months old - mouth area, hands, feet, legs started turning blue at various times when he was lying on his back
4 months old - found out David had 3 heart defects including a hole in his heart and an artery coming off of his aorta that was going the wrong way and pressing against his esophagus
5 months old - diagnosed with Gastroesophageal Disease (GERD - "reflux")
7 months old - scheduled for open heart surgery which ended up being canceled 2 weeks before the surgery when a cardiac MRI showed his heart defects weren't the source of his blue spells (ended up realizing his GERD was the culprit after a milk scan was done- he was aspirating on his relux)
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| David at 7 months |
0-1 years - several bouts of bronchiolitis and 1 bout of pneumonia during the winter and spring; exhibited allergic symptoms but tested negative for all allergy testing - put on allergy medicine anyway to control symptoms (doctors thought he just had an immature immune system and would outgrow it)
1-2 years - multiple ear infections; diagnosis of asthma
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| Almost 2 years old |
2-3 years - fractured and lacerated left index finger in heavy metal door at church requiring stitches and splinting; got a concussion because he talked his brother into sending him down the stairs in a laundry basket only to crash into the entertainment center; Surgery to drain infection in his ears that was resistant to 5 different antibiotics and to insert tubes in his ear drums (Jan. '09); start of multiple sinus infections
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| David sporting his fractured and stitched up finger (Jan. '09) |
3-4 years - multiple sinus infections (at this point, he had been on antibiotics more months of his life than he had not been on an antibiotic); Surgery to remove his adenoids (Feb. '10); diagnosis of IgG Immune Deficiency
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| David in June 2010 - he and Josh were ring bearers for their Uncle Tim's wedding |
For a summary of David's current health concerns and needs for prayer, see the next blog.
Sunday, May 15, 2011
Sudden Change of a Life's Course - Part II of Persevering in this Race of Life
I stated at the end of my previous blog in this series about my salvation experience at the age of 4 being a testament to God's perfect timing, "for in a year’s time, my life would be turned upside down." The continuation of my testimony below explains why.
When I turned five, I faced a huge trial. I was molested by a deacon in my church, my Sunday School teacher’s husband. My world came crashing down, and I became a shy and frightened child afraid to talk about what happened to me and desperately afraid of and hateful toward the male race. That short moment changed the whole course of my life. In many ways, it robbed me of my childhood. Whenever I had to buy something at the store, I would choose a female cashier unless there were only males available. I would try to brace myself, but every time there was an innocent touch of my hand by a male cashier’s hand in the exchange of money, I would visibly shudder. This was an embarrassment to me and struggle for me until college. Prone to keep my feelings to myself, I harbored my pain and fears in my heart with God as my only source of comfort until everything came to a head my junior year of high school. I found out I was going to have the same male history teacher I had had the year before who consistently violated my very large personal space, so I tried desperately to get out of the class. Left the only options of having this teacher or giving my dad a good reason to not have him, my fears forced me to reveal what I had been harboring in my heart for all of those years. Despite the circumstances, I had to have this teacher in order to have the class and be able to graduate. Even though he was warned to keep his distance from me and I was allowed to sit in the back of the class, the year was difficult and forced me to cling to God even more.
God used this time to help me come to terms with the whole ordeal and give my pain over to him. My struggles were out in the open, and I was finally ready to let go of the hate and let God start the healing work inside of me. Romans 8:28-39 became really meaningful to me and and comforted my disconsolate heart. Even a horrible act that I was victim to could not separate me from the love of God! God would work even this horrible thing out for my good and His glory! I told myself that from that point forward, I could live with the scars that event left in my life and let God lead me on. (This wouldn't be the end of God's work in this area - more on this later).
Romans 8:28-39: "And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified. What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? Who shall bring any charge against God's elect? It is God who justifies. Who is to condemn? Christ Jesus is the one who died—more than that, who was raised—who is at the right hand of God, who indeed is interceding for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written,'For your sake we are being killed all the day long; we are regarded as sheep to be slaughtered.' No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord."
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| Me at 5 years old (my Kindergarten picture) |
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| 5 Years Old |
When I turned five, I faced a huge trial. I was molested by a deacon in my church, my Sunday School teacher’s husband. My world came crashing down, and I became a shy and frightened child afraid to talk about what happened to me and desperately afraid of and hateful toward the male race. That short moment changed the whole course of my life. In many ways, it robbed me of my childhood. Whenever I had to buy something at the store, I would choose a female cashier unless there were only males available. I would try to brace myself, but every time there was an innocent touch of my hand by a male cashier’s hand in the exchange of money, I would visibly shudder. This was an embarrassment to me and struggle for me until college. Prone to keep my feelings to myself, I harbored my pain and fears in my heart with God as my only source of comfort until everything came to a head my junior year of high school. I found out I was going to have the same male history teacher I had had the year before who consistently violated my very large personal space, so I tried desperately to get out of the class. Left the only options of having this teacher or giving my dad a good reason to not have him, my fears forced me to reveal what I had been harboring in my heart for all of those years. Despite the circumstances, I had to have this teacher in order to have the class and be able to graduate. Even though he was warned to keep his distance from me and I was allowed to sit in the back of the class, the year was difficult and forced me to cling to God even more.
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| Me in 11th grade - Horses have been a huge passion of mine for pretty much all of my life |
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| 11th Grade - I had been training horses since 9th grade - Abi was the 3rd horse of my training career |
God used this time to help me come to terms with the whole ordeal and give my pain over to him. My struggles were out in the open, and I was finally ready to let go of the hate and let God start the healing work inside of me. Romans 8:28-39 became really meaningful to me and and comforted my disconsolate heart. Even a horrible act that I was victim to could not separate me from the love of God! God would work even this horrible thing out for my good and His glory! I told myself that from that point forward, I could live with the scars that event left in my life and let God lead me on. (This wouldn't be the end of God's work in this area - more on this later).
Romans 8:28-39: "And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified. What then shall we say to these things? If God is for us, who can be against us? He who did not spare his own Son but gave him up for us all, how will he not also with him graciously give us all things? Who shall bring any charge against God's elect? It is God who justifies. Who is to condemn? Christ Jesus is the one who died—more than that, who was raised—who is at the right hand of God, who indeed is interceding for us. Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written,'For your sake we are being killed all the day long; we are regarded as sheep to be slaughtered.' No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord."
Wednesday, May 11, 2011
Saving Faith - Part I of Persevering in this Race of Life
I year ago this month, I started writing a book about my life mainly for my own sake to remind me of what God has brought me through and the lessons He has taught me each step of the way. A few months ago, I had the privilege of sharing my testimony at a women's prayer retreat giving me even more incentive to get my story written. It has been a blessing to marvel at God's goodness in my life and see a broader glimpse of His Master Plan for my life. It has also been comforting to see how God has used certain trials to prepare me for even bigger ones or equip me with more tools for ministering to others. I chose the title/theme of my book/life "Persevering in this Race of Life" because I feel that concept totally sums up what I've been doing. We are all in a race striving to reach the goal for the prize of the upward call of God (Philippians 3:14).
Anyway, Tim has encouraged me to put samples of my book/life on our blog as a way to allow others to rejoice with me in God's faithfulness and be encouraged by the fact that "...He who began a good work in you will bring it to completion at the day of Jesus Christ." (Philippians 1:6). So, in response to his prodding, here I go!
Hebrews 12:1, 2: Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, 2 looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.
Endurance is definitely what I have needed to continue on in my race of life. My life, thus far, has not been easy, to say the least, but at the same time, it has been so much easier to endure because God has been with me every step of the way. With his strength and grace, I have continued in my race because I have been able to keep my eyes on Jesus, the founder and perfecter of my faith.
In each step of my life, God has kept His promises of never leaving me or forsaking me. Throughout my life, God has been my hope, my comfort, my peace, and my joy. If it were not for God’s hand on my life, I would not be alive today and filled with such wondrous peace.
God blessed me with the privilege of growing up in a Christian home. From infancy on, I was taught the truths of the Bible. I am indebted to my parents who taught me from the beginning and who instilled in me the importance of going to church to learn more about God and to worship Him with a body of believers. When I was four years old, I made a profession of faith. I still to this day remember that evening. I was looking at one of my favorite books, which halfway through had a picture of a baby in a baby carriage. Having always been fascinated with babies, I made a comment about the baby to my mom who used the opportunity to remind me that Jesus came to this earth as a baby to grow up and die for my sins, which I had heard multiple times. Looking at that tiny, innocent baby, I was struck unlike ever before about the magnitude of God’s love and was awed by how a baby had to be condemned to a life that would end in a cruel death on the account of ME! Right then and there, I prayed and asked God to forgive me of my sins and to save me. I thanked him for sending Jesus to the earth as a baby to grow up and die for my sins. I asked him to be Lord of my life. From that point forward, God has done just that! His timing in calling me to Himself was perfect, like always. For in a year’s time, my life would be turned upside down. (See Part II for continuing story)
Anyway, Tim has encouraged me to put samples of my book/life on our blog as a way to allow others to rejoice with me in God's faithfulness and be encouraged by the fact that "...He who began a good work in you will bring it to completion at the day of Jesus Christ." (Philippians 1:6). So, in response to his prodding, here I go!
Hebrews 12:1, 2: Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, 2 looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.
Endurance is definitely what I have needed to continue on in my race of life. My life, thus far, has not been easy, to say the least, but at the same time, it has been so much easier to endure because God has been with me every step of the way. With his strength and grace, I have continued in my race because I have been able to keep my eyes on Jesus, the founder and perfecter of my faith.
In each step of my life, God has kept His promises of never leaving me or forsaking me. Throughout my life, God has been my hope, my comfort, my peace, and my joy. If it were not for God’s hand on my life, I would not be alive today and filled with such wondrous peace.
God blessed me with the privilege of growing up in a Christian home. From infancy on, I was taught the truths of the Bible. I am indebted to my parents who taught me from the beginning and who instilled in me the importance of going to church to learn more about God and to worship Him with a body of believers. When I was four years old, I made a profession of faith. I still to this day remember that evening. I was looking at one of my favorite books, which halfway through had a picture of a baby in a baby carriage. Having always been fascinated with babies, I made a comment about the baby to my mom who used the opportunity to remind me that Jesus came to this earth as a baby to grow up and die for my sins, which I had heard multiple times. Looking at that tiny, innocent baby, I was struck unlike ever before about the magnitude of God’s love and was awed by how a baby had to be condemned to a life that would end in a cruel death on the account of ME! Right then and there, I prayed and asked God to forgive me of my sins and to save me. I thanked him for sending Jesus to the earth as a baby to grow up and die for my sins. I asked him to be Lord of my life. From that point forward, God has done just that! His timing in calling me to Himself was perfect, like always. For in a year’s time, my life would be turned upside down. (See Part II for continuing story)
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| Me at 4 years of age |
Thursday, May 5, 2011
Complete Submission
Exhaustion, confusion, struggle, doubt, fear, pain, heartache, frustration...all sum up our time since returning from Bulgaria and trying to recover from jet lag. We haven't even been back a week, and so much has happened that being in Bulgaria seems like a thing of the distant past. All we can say is that our adversary, the Devil is seriously coming down hard on us attacking our faith and trust in God in a relentless manner. It all came to a head for me two days ago, and although my faith was greatly shaken, it was not lost. Through the Godly counsel and wisdom of a friend yesterday, the faint light I saw in my dark world became a beacon that strengthened my resolve to put myself at the feet of Jesus in complete submission to His will for my life.
For the first time in my life, I have come to the realization that my circumstances are completely beyond my own control. I have no clue how things are going to work out or what my future is going to look like, and there's absolutely nothing I can do about but surrender my will and heart's desires to my omnipotent, sovereign Lord. However, this is so much easier said than done. I am getting a glimpse of how Joshua feels in his Asperger's mind when he realizes when a situation is happening and there's nothing he can do to control it. It's frightening, anxiety provoking, and very unsettling. I am so thankful that I don't have to deal with these feelings alone but can cast my cares and anxieties on the Lord, for He will answer my prayers and sustain me (Psalm 55:22; Philippians 4:6,7; I Peter 5:7). The struggle is far from over, but by God's grace and strength, I will endure, and I will be victorious. There's nothing better than being in the very capable arms of God and being at His mercy for direction in my life. Along with turning to the Bible and prayer for my spiritual battles, I find it helpful for me to write my feelings and the things that I am learning down in the form of poetry. Just like many of the great Psalms we have were written during David's times of struggles and challenges of faith, most of my poems are an outpouring of my heart's cries to the Lord or the quiet peace and assurance God fills within my spirit. In my pleas to God yesterday, I wrote this prayer to God:
The Cry of My Heart
By: Christine Russell
O Lord, I cry out to you today
Because my heart is bleeding and my broken spirit is weak--
Life's circumstances have crumbled around me and look bleak.
Through my human eyes, my situation looks dark and drear,
Yet deep within my soul, I find comfort that You are near.
My faith is faltering -- Help my unbelief, I pray.
O Lord, I am floundering to know Your will.
I know in my heart my own plans of what I want to do,
But I know following Your plan will carry me through
The struggles and fears, the bitterness and strife,
The pain and sorrows of this fallen world and life.
My plans I lay at your alter -- Your will I must fulfill.
O Lord, I ask for Your abundant mercy and grace,
The strength to mount up on wings as eagles is what I need.
Help me to acknowledge You in all my ways and straighten my paths I plead.
You alone are the maker and keeper of my soul.
It's in Your peace that I rest even when billows roll.
My body is frail -- Give me the strength to finish this race.
(c) 2011. Christine Russell.
For the first time in my life, I have come to the realization that my circumstances are completely beyond my own control. I have no clue how things are going to work out or what my future is going to look like, and there's absolutely nothing I can do about but surrender my will and heart's desires to my omnipotent, sovereign Lord. However, this is so much easier said than done. I am getting a glimpse of how Joshua feels in his Asperger's mind when he realizes when a situation is happening and there's nothing he can do to control it. It's frightening, anxiety provoking, and very unsettling. I am so thankful that I don't have to deal with these feelings alone but can cast my cares and anxieties on the Lord, for He will answer my prayers and sustain me (Psalm 55:22; Philippians 4:6,7; I Peter 5:7). The struggle is far from over, but by God's grace and strength, I will endure, and I will be victorious. There's nothing better than being in the very capable arms of God and being at His mercy for direction in my life. Along with turning to the Bible and prayer for my spiritual battles, I find it helpful for me to write my feelings and the things that I am learning down in the form of poetry. Just like many of the great Psalms we have were written during David's times of struggles and challenges of faith, most of my poems are an outpouring of my heart's cries to the Lord or the quiet peace and assurance God fills within my spirit. In my pleas to God yesterday, I wrote this prayer to God:
The Cry of My Heart
By: Christine Russell
O Lord, I cry out to you today
Because my heart is bleeding and my broken spirit is weak--
Life's circumstances have crumbled around me and look bleak.
Through my human eyes, my situation looks dark and drear,
Yet deep within my soul, I find comfort that You are near.
My faith is faltering -- Help my unbelief, I pray.
O Lord, I am floundering to know Your will.
I know in my heart my own plans of what I want to do,
But I know following Your plan will carry me through
The struggles and fears, the bitterness and strife,
The pain and sorrows of this fallen world and life.
My plans I lay at your alter -- Your will I must fulfill.
O Lord, I ask for Your abundant mercy and grace,
The strength to mount up on wings as eagles is what I need.
Help me to acknowledge You in all my ways and straighten my paths I plead.
You alone are the maker and keeper of my soul.
It's in Your peace that I rest even when billows roll.
My body is frail -- Give me the strength to finish this race.
(c) 2011. Christine Russell.
Sunday, May 1, 2011
Leaving Bulgaria
Since we did not have a "lighting bolt" experience confirming or negating God's call for us to serve in Bulgaria full-time, we have decided to continue to pray about and pursue serving God in Bulgaria until God clearly shuts the door. The next steps include the team leader talking to the other team members on the field. It is ultimately up to the team to decide to extend an invitation to us to join them in their work there in Bulgaria. Also, in July, we go to the REV which is an assessment/boot camp of sorts in which we are observed and carefully scrutinized to determine whether or not, we are fit for missionary service. At the end of the week, we are either given a green light to serve as missionaries, a caution in which certain things need to be worked on before we can serve or a red light saying we are not up to the rigors or serving on a foreign field. All of these are ways in which God can use to direct us. If we are given the "go-ahead" from the REV but are not offered an invitation to serve in Bulgaria, we will start looking at other fields.
The biggest concern for serving in Bulgaria is education for Joshua. However, we know that if it's the Lord's will for us to serve Him in Bulgaria, He will work those details out. We will be looking into the options that are before us for Josh's schooling to decide what would work best if we did end up there.
Please pray with us as we seek God's will for our future service. Pray that God would make His will clear to us and equip our family with whatever is needed to serve God effectively. Thank you to all who prayed for us while we were in Bulgaria. God answered all of our prayers and those we didn't even think to pray about. The boys did extremely well with my parents and Tim's parents. God sustained David's health and gave Josh the strength he needed to cope with his anxieties about our being gone. Josh did not have any of the behaviors we were seeing right before we left. We were able to either video skype or talk on the phone with the boys every day, and many times, they were having too much fun to talk to us for more than a couple of minutes, which is fine with us. We'd rather that then having them crying for us to come home. We are praising the Lord for His goodness to us as we were away and to our boys while they remained here in the States.
Tuesday, April 26, 2011
The unique beauty of Bulgaria
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| Part of the view from the 10th floor of a block where we are staying in Musagenitsa, which is part of Studenski Grad (Student City) |
The food here is awesome. There are parks all over. Various transportation options are available and easy to use to get around the city. The pottery made here is absolutely amazing! Here is sample of pictures that we've taken to give you an idea of what we are seeing and experiencing:
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| Feeling the hot springs water that come up from the ground and have been routed through walls of these spouts. People come here to bottle the water for drinking or drink right from there hands while standing at the spout. |
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| I bought myself some cute shoes for wearing around the house and paid less than $2 US for them. |
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| Front of the church in Center City (before the service began) |
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| The choir did a wonderful job performing a special cantata for Easter |
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| A building the church in the Southern part of Sofia (poorer area of town) rents for worship |
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| Another view from the 10th floor of the block where we are staying |
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| View of the snow capped mountains to the south of Sofia |
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| Sun setting over Sofia |
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