Today, we had a very good visit with a neurologist with Scott and White who specializes in nerve testing. He confirmed two things. He confirmed Rhonda's initial diagnosis of Guillian Barre and the fact that she does not have the chronic version (CIDP). The nerve conduction tests showed that she does not have permament nerve damage. In addition, he helped cleared up some of our questions or reminded us of things we needed to remember. For example, the question in my last blog was why Rhonda still had GB symptoms if the neurological tests indicated no nerve damage. He noted that GB patients will still have the symptoms of GB even if nerve conduction tests show there is no damage. After all, she is likely still fighting the triggering agents (which can be either virus or bacteria) that cause one's immune systems to attack and demylenate the nerves.
Additional blood tests we received back this week have also helped reinforce this point. Although blood tests cannot be used to diagnose GB, they do detect the antibodies to the microorganisms that trigger GB. Although we (or maybe I) intially thought the triggering agent may have come from the bacteria associated with food poisening (campylobacter jejuni), blood tests have shown that Rhonda has exceptionally high levels (more than 15 times normal) of antibodies associated with the Epstein-Barr virus (the virus that causes mono but is also a triggering agent for GB).
The doctor today also reminded us that GB recovery takes a long time (often 6 months to 3 years) and that we should continue to remain patient. Her body is likely still fighting the triggering agent and her immune system is still healing. We're only at the 6 month mark. He also said something that I had read in neurology journal survey studies of GB patients, but it was good to hear again. In a significant minority of GB patients, there will be some symptoms from GB that one must continue to battle for some time (and for some--through life), but this does not mean a person has CIDP (the chronic form of GB).
Overall, we drove home feeling like we had some clear answers and direction regarding the treatement of her GB symptoms. Of course, we still have some questions about her eye and headache problems, although the doctor did offer two thoughts about her headaces. He has seen cases of GB that do have these type of headache problems. In addition, he also notes that IVG treatments can also add to headache problems. Rhonda will see an eye doctor again on Monday to explore the eye issues further. As always, thanks for your prayers through this while time. We continue to pray for complete healing and recovery.
Actually, I have also neglected some good news. Rhonda has been walking more this past week, and she has started driving for short trips again. We're thankful that she's showing some progress (especially with regard to her legs and her strength).
Friday, February 29, 2008
Saturday, February 23, 2008
A family day out
Wow, I didn't realize it had been ten days since I last blogged. It's been a mixture of business, tiredness, and sometimes not knowing what to say (and not feeling like saying much). The past ten days have been quite an emotional rollar coaster ride. Two weeks ago, we had started to come to grips with a diagnosis of CIDP. Then, the visit to the doctor at Scott and White leads us down another path--the rejection of the CIDP diagnosis and more tests to gauge the extent of any nerve damage (this coming Friday). As you can imagine, we've felt a variety of emotions and thoughts (anger, frustration, feeling like we should have obtained a second opinion much earlier).
The rejection of the CIDP diagnosis is clearly good news. Nonetheless, no longer having a clear diagnosis makes us start to rethink everything we've been thinking and doing. If Rhonda's nerves are healing what is the source of the symptoms? Instead of making sure Rhonda rested to make sure her nerves healed and she does not have a relapse, do we need to really push more? The tests on Friday and some additional blood work may give us some answers but they may not. It has been especially hard on Rhonda as she has sorted through these issues. Please pray especially for our outlook in the midst of this uncertainty.
In our lives, we've started being a bit more active. Last weekend, we had our first family day out in quite some time as Rhonda joined us for ice cream. This weekend we enjoyed a great day at a friend's cabin near Belton. Rhonda was able to walk around by a creek a little and she feels like her legs are progressing (although the headaches remain). Even in the midst of these emotional ups and downs, I've especially felt our spirits lighten at times. We remain wary but hopeful and ever eager to find and rest in the truth.
The rejection of the CIDP diagnosis is clearly good news. Nonetheless, no longer having a clear diagnosis makes us start to rethink everything we've been thinking and doing. If Rhonda's nerves are healing what is the source of the symptoms? Instead of making sure Rhonda rested to make sure her nerves healed and she does not have a relapse, do we need to really push more? The tests on Friday and some additional blood work may give us some answers but they may not. It has been especially hard on Rhonda as she has sorted through these issues. Please pray especially for our outlook in the midst of this uncertainty.
In our lives, we've started being a bit more active. Last weekend, we had our first family day out in quite some time as Rhonda joined us for ice cream. This weekend we enjoyed a great day at a friend's cabin near Belton. Rhonda was able to walk around by a creek a little and she feels like her legs are progressing (although the headaches remain). Even in the midst of these emotional ups and downs, I've especially felt our spirits lighten at times. We remain wary but hopeful and ever eager to find and rest in the truth.
Wednesday, February 13, 2008
doctors visit
We had our visit with the neurologist at Scott and White today. Based on his initial assessment, he does not believe Rhonda has CIDP (the chronic form of Guillain-Barre). However, he wants Rhonda to have some more tests that will help to measure nerve damage/demylenation. We'll be visiting the specialist who will conduct those tests the last day of February. While we welcome this possibility, we still need to wait for the tests. In addition, even if CIDP is eliminated as a diagnosis (which may or may not happen), it does not help explain Rhonda's current symptoms. In that regard, the visit merely raised some more questions. Again, we await the next doctor visit.
Monday, February 11, 2008
Hope
It’s felt less stressful the past few days. The kids are not sick, Rhonda has not had any relapses., and we don't live in Calgary where it's minus 10. My baseline for the good life is a bit less these days.
Of course, even these circumstances can change. Rhonda and I had a good talk this weekend about what gives us hope. It can’t be health, the next doctor’s appointment or even the next round of IVG treatments. God and the hope of ultimate glory with him remain the ultimate source of what sustains us.
When I started this blog almost six months ago, I thought it would be a helpful way to communicate Rhonda’s progress. What I thought would be a blog of progress has turned into a blog of continuing struggle. Bennett now even talks about time and events recalling, "yes, that happened when mommy could run and wasn't so weak." Time for our family now seems to be marked now by pre CIDP and post CIDP.
When facing the possibility of a chronic condition that may change your life for the next 40 years you really do find out where your hope lies. It can’t be in what one will give to God. We thought we’d spend our lives serving God overseas and health issues struck that dream/hope down. Rhonda enjoys above all to give to others, but she is now limited in her ability to practice what she enjoys above all. I have a heart for researching what God is doing overseas, but now my travel will probably be limited. Hopes and dreams in this life, even good ones, can come crashing down. As Paul says in I Cor. 15:18, “If only for this life we have hope in Christ we are to be pitied more than all men.”
Of course, we also don’t abandon prayers for God’s kingdom to come and be manifest here on earth—the hope for healing certainly reminds us of the hope for God’s kingdom.
Wednesday we have an appointment with a neurologist at Scott and White. We do pray that the doctor might be able to shed some additional wisdom on Rhonda’s condition. While things have stabilized a bit, Rhonda is not moving forward in some areas. Her headaches and eyes remain a problem (she went to bed early with a bad headache tonight, because she did too much reading today). Her leg strength does seem better, but it remains limited. We pray, wait and hope.
Of course, even these circumstances can change. Rhonda and I had a good talk this weekend about what gives us hope. It can’t be health, the next doctor’s appointment or even the next round of IVG treatments. God and the hope of ultimate glory with him remain the ultimate source of what sustains us.
When I started this blog almost six months ago, I thought it would be a helpful way to communicate Rhonda’s progress. What I thought would be a blog of progress has turned into a blog of continuing struggle. Bennett now even talks about time and events recalling, "yes, that happened when mommy could run and wasn't so weak." Time for our family now seems to be marked now by pre CIDP and post CIDP.
When facing the possibility of a chronic condition that may change your life for the next 40 years you really do find out where your hope lies. It can’t be in what one will give to God. We thought we’d spend our lives serving God overseas and health issues struck that dream/hope down. Rhonda enjoys above all to give to others, but she is now limited in her ability to practice what she enjoys above all. I have a heart for researching what God is doing overseas, but now my travel will probably be limited. Hopes and dreams in this life, even good ones, can come crashing down. As Paul says in I Cor. 15:18, “If only for this life we have hope in Christ we are to be pitied more than all men.”
Of course, we also don’t abandon prayers for God’s kingdom to come and be manifest here on earth—the hope for healing certainly reminds us of the hope for God’s kingdom.
Wednesday we have an appointment with a neurologist at Scott and White. We do pray that the doctor might be able to shed some additional wisdom on Rhonda’s condition. While things have stabilized a bit, Rhonda is not moving forward in some areas. Her headaches and eyes remain a problem (she went to bed early with a bad headache tonight, because she did too much reading today). Her leg strength does seem better, but it remains limited. We pray, wait and hope.
Thursday, February 7, 2008
healthier kids
I had to laugh on Tuesday morning. It took two friends to help us take care of our sick family. One came to stay with Bennett while I took Cody to the doctor. Another came to take Rhonda to the doctor. Fortunately, things are a bit better. On Wednesday we got both kids back to school, so it feels like we're back to three out of four being healthy.
On Tuesday, the nurse practioner suggested that Rhonda try a new medicine that may help her with some of her nerve pain and headaches and perhaps evern her eyes. Since Rhonda does not always react well to medicines, please pray that it would work well and that she will have no adverse reactions. Rhonda will also continue to receive the IVG treatments once a month (sooner if needed). In March we have an appointment scheduled with a doctor at Scott and White to see if he has any other suggestions.
In the meantime, we continue to pray and hope for progress. Thanks for everyone's support. In fact, throughout this whole time we've continually had folks ask how they can help. Right now, the best way to help would be to contact Brandi Ross who is coordinating meals: tross14@hot.rr.com If that doesn’t appeal to some folks, gift cards to local restaurants are another option.
As for our other needs, the Lord has graciously provided. It’s been really good for Rhonda to have support from a college student on Tuesdays and Thursdays. She is a tremendous help with the kids and housework.
On Tuesday, the nurse practioner suggested that Rhonda try a new medicine that may help her with some of her nerve pain and headaches and perhaps evern her eyes. Since Rhonda does not always react well to medicines, please pray that it would work well and that she will have no adverse reactions. Rhonda will also continue to receive the IVG treatments once a month (sooner if needed). In March we have an appointment scheduled with a doctor at Scott and White to see if he has any other suggestions.
In the meantime, we continue to pray and hope for progress. Thanks for everyone's support. In fact, throughout this whole time we've continually had folks ask how they can help. Right now, the best way to help would be to contact Brandi Ross who is coordinating meals: tross14@hot.rr.com If that doesn’t appeal to some folks, gift cards to local restaurants are another option.
As for our other needs, the Lord has graciously provided. It’s been really good for Rhonda to have support from a college student on Tuesdays and Thursdays. She is a tremendous help with the kids and housework.
Sunday, February 3, 2008
no dull weekend nights
Now, that my thumb has healed I often have the feeling that I'm the one healthy one in the family. Today, we're home from church after dealing with a fever and and ear ache during the night. Actually, the last two nights have been eventful. Saturday night Bennett woke up having trouble breathing. It's really the first asthma attack he's had for a long time. Fortunately, Rhonda is still well enough to help do some nursing (asthma medication is also a wonderful thing). The attack seems to have been helped by a virus that also has produced a fever for the last couple nights. Last night at 4am, we had both kids up with Bennett complaining about a fever and Cody complaining about an ear ache. Thank God for motrin. This morning the kids are happy, listening to some kids praise songs (thanks for the praise CD from our choir ministry--the kids love it), and playing.
Fortunately, in the midst of all the sickness Rhonda has been doing a little bit better. Her GB symptoms and headaches are much more under control. Although the IVG treatments clearly helped these symptoms, her eye problems remain unchanged. Even helping Bennett with some reading homework strains her eyes. We have an appointment this Tuesday with a nurse practioner where we hope to revisit what we need to do regarding her eyes. We've already been to the eye doctor and he claimed that he did not see any nerve damage.
Again, thanks to everyone for your prayers and help. It's been incredible. We must admit that it's sometimes hard to receive (especially for my wife who has the gift of giving and serving). The Lord is sure teaching us some wonderful lessons about gratitude.
Fortunately, in the midst of all the sickness Rhonda has been doing a little bit better. Her GB symptoms and headaches are much more under control. Although the IVG treatments clearly helped these symptoms, her eye problems remain unchanged. Even helping Bennett with some reading homework strains her eyes. We have an appointment this Tuesday with a nurse practioner where we hope to revisit what we need to do regarding her eyes. We've already been to the eye doctor and he claimed that he did not see any nerve damage.
Again, thanks to everyone for your prayers and help. It's been incredible. We must admit that it's sometimes hard to receive (especially for my wife who has the gift of giving and serving). The Lord is sure teaching us some wonderful lessons about gratitude.
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