another sickness

Bennett woke up with a sore throad and low-grade fever, so we're home from church again. Fortunately, Cody appears to be better. At least we have one member of the family well. My thumb is getting better, but it's still probably only at 70 percent.

The good news is that Rhonda slept better and her headache has subsided a bit--both answers to prayer. She even got outside in the morning to the patio. This feels like the first good day for her in a while and I find myself being so cautious and wondering how she'll feel tonight and how she'll sleep.

By the way, a friend informed me that I had this blog set so that only registered users could comment. Sorry if you've tried to comment and couldn't. I've changed the setting so that anyone can easily comment.

delays

We got a call from the doctor's office that the eye exam failed due to electrical problems. Plus, they would not have the MRI results until early next week. As a result, our next appointment will not be until next Thursday. Rhonda will have to go in Monday again for the eye test.

She continues to face pounding headaches that prevent her from sleeping. Please pray for there relief.

four down one to go

Rhonda had her MRI today and an eye exam to check why one of her eyes is having a problem. Both were not as long and arduous as she was expecting. Still, it's been a long day. She still has a splitting headache tonight. Now, after four days of treatments and test, we have a doctor's app. tomorrow where we'll hear about the MRI and eye test and discuss future direcitons.

Cody seems to be doing better. He still had a low grade fever at times, so we're hoping this antibiotic works.

early day

The morning started early with Cody waking up at 5:30 with a fever. We're not sure the second antibiotic is working on his ear infection. We'll find out tomorrow morning. I was not give a guest lecture in a class at Baylor and again wonderful friends found help for us (someone to watch Cody while I lectured and Rhonda went to the hospital).

We did celebrate today as Rhonda finished her last of the 3 IGG treatments today early (4:30pm). Still, she was wiped out by the end of the day. The headache, head pressure and heaviness of head continue to plague her. MRI tomorrow.

Everything has left me a bit emotionally thin. I was talking about character today in class and sharing a common definition of a person with good character-"knowing, loving and doing the good." When I briefly mentioned what folks had done for us (the doing part), I broke down. Some of the students came up after classe and asked if they could pray for me--one of the many joys of teaching at Baylor. My prayer is that this thing does not suck the life our of our family but that we truly live abudantly in the midst of it.

Another long day

Another long day for Rhonda. Left at 8:30am, home at 7:00pm. She's struggling with headaches, head pressure and lack of sleep in the midst of it all. Please pray for her. It makes her wonder if the treatment is worth it. Cody is at least doing better after a day home with daddy and antibiotics.

long day

Rhonda went into the hospital at 9:00am and got out at 7pm. The IV itself is a four to five hour process. They got that started around 1:00. The IGG is so expensive they don't take it out of the freezer it until she gets there, and it takes three hours to thaw. Hopefully, tomorrow will be a little shorter. She's tired. I'm tired. Although I did enjoy a moment of escape and fun watching Bennett play soccer.

Please pray that we'd sleep well. We're both having trouble sleeping these days.

More medical

Cody woke this morning with a 102 fever, so we stayed home from church. We sure are thankful for children's motrin. The medical profession sure likes our family right now. Rhonda and I went to see doctors on Friday. Rhonda will be doing something in the hospital or with a doctor every day next week, while Cody will probably see the doctor on Monday and Bennett will get allergy shots Tuesday. My guess is the insurance company is starting to wonder about our family.

Rhonda had a bad morning yesterday. It is the same thing. The problems with the head are the worst--especially the vertigo. She was bit better by the evening. She can handle the head pressure and headaches as long as they are not accompanied by vertigo. She even says the burning in her legs has gone down. That would be great if she could walk more, but the head problems prevent her from walking much. She got past the bedroom door once again.

We find ourselves being one of those families that has their hopes pinned on God and the next medical thing (e.g., the three doses of IGG) in hopes that they will turn things around. Again, thanks for everyone's help with meals, kids and house. Those really help reduce the stress and emotional wear and tear.

Doctor visit

Yesterday, we both saw the doctor. During Rhonda's visit, the doctor confirmed our suspicisions that her slow recovery is "disconcerting." This coming week they're going to be much more agressive. Monday through Wednesday, she's going to have three infusions of Immunoglobulin (hospital outpatient). Then on Thursday, she's going to have another MRI to check about the neck pressure and headaches. She's also had a recurrance of some eye problems that she had in the hospital, so they will also do a test on her eye on Thursday. You can pray for Rhonda during all this activity. She actually felt fairly well at the end of the day yesterday which was a good sign. The doctor did mention that while GB is an acute autoimmune syndrome, it can also have chronic forms. We do pray that is not the case and that the agressive treatments help Rhonda on the road to recovery.

As for my visit, my case/splint is now off and my thumb seems to be on the road to recovery. It's still stiff and sore and is probably a month away from gaining something closer to full strength.

Peace

Peace. It's amazing how my emotions go up and down through this thing as I struggle to cast my axieties before the Lord and experience His peace which passes understanding. I memorized Phil 4:4-8 as a kid in Awanas. Yet ,despite the fact that its in my head, it often feels oceans away from my experience. I go from worry, to anger, to a just buckle down, to hardness of attitude in just an hour. While driving Cody to Mothers Day Out (I've heard it's called parents day out up north--still I don't feel any discrimination right now), I started trying to apply Phil 4:8 and just mediate on all that is good in the midst of everything--I have a sabbatical that allows me to work at home, I'm actually eating lunch with Rhonda (which I rarely ever get to do), I'm actually spending more time than most dads ever get with their kids, I'm probably working more productively in my 6 hours than my usual eight (It really is hard to write for more than 6 hours a day anyway), our kids are doing great, learning more responsibility, and seeing the compassion of Christ's body, we have experienced a tremendous outpouring of love from friends, neighbors, family, church, etc. I could go on and one.

Now to what you really want to hear. We achieved some stability today. Rhonda felt better largely by limiting her activity even more. She finds she feels better when she does very little (she did venture beyond our bedroom door once today). I probably should give you some idea of what she can do. She is able to get up, shower, and go to the bathroom. Plus, she can move around the room a bit, read when her head doesn't bother her, and interact with the boys (she helps Bennett with his homework, gives lots of hugs and also helps dress them, etc.). Nonetheless, it seems like we're just idling at that level and not moving forward. In the first two weeks after the hospital, she had actually abandoned using the walker around the house. After the relapse, she is extremely weak and must still use the walker even around the bedroom. As already mentioned, we sometimes feel even a little activity sets her back (Rhonda has had to cancel her physical therapy appointments the past couple days). We have a doctor's appointment tomorrow to try and ask some questions about this odd journey.

P.S. For readers to this blog who didn't see the earlier link to learn more about guillain-barre, it is: http://www.mayoclinic.com/health/guillain-barre-syndrome/DS00413

2 inches back

Today felt like a two inches back day. Rhonda did not make it out of the bedroom. Her head really bothers her (pressure and dizziness). We called the doctor, but he was not in today. We're starting to have more questions about the lack of even small progress.

We're still thankful that she can do things with the boys in bed. Tonight she had movie night with Cody (Toy Story2--his favorite) while Bennett went to church.

One month mark

Today, felt like an inch back day. Rhonda made two trips past the bedroom door and she could tell that was all she could do. We did use the office chair to wheel her out to dinner. In spite of it all, Rhonda's attitude seems good. I'm probably the one with some back of my mind stuggles. I find myself wondering. Why did we see steady improvement for two weeks and now since the relapse, it feels like we've gone no where? It's one month since she entered the hospital and it feels like we're stuck in the mud. I can tell the real battle for a good attitude has started in earnest.

Today seemed like an inch forward day. After talking with the physical therapist, she suggested that instead of trying an inch forward each day, Rhonda should try to go forward one day and then maintain that level of activity for a couple days before trying to go forward that next inch. So today, Rhonda got out of the room once for dinner and and an after dinner trip to the back patio. We'll probably try the same thing the next day or so.

I've entered the try and understand more about GB stage, so I've ordered a few books. We'll see if they help. What I find is that medical journals are quite good at providing some overviews of symptoms and the current state of treatment, but I have not found as much information about what to expect regarding the recovery process. We find ourselves continually asking, "Is this normal?" Part of the frustration is that the recovery process varies dramatically. I read things like "three months to three years" or "a few days to a few years" (e.g., http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm). Rhonda's case is certainly mild compared to those who had to be on respirators, but the relapse makes us wonder where she fits into the range now. The main thing the Lord is teaching us is that the recovery process requires those difficult Christian virtues of patience and hope.

The kids remain a wonder in the midst of it all. I notice they paused a little more when they saw someone else with a walker in church. You sense they feel the brokeness of the world a bit more. Yet, they also glimpse the work of God's redemptive community. They ask, "Why are people bringing all these meals?" Other times, it seems like things have not bothered them much at all (especially Bennett), which can be a blessing. Their energy and joy is a wonderful reminder of all that is good in this sometimes difficult world.

inches

I feel like we’re now taking two inches forward and one inch back. The past two days Rhonda was doing a bit better, so she tried to take some cautious steps forward. Two trips to sit outside yesterday, however, seemed to be too much. The burning, heaviness and weakness in her legs came back a bit stronger as well as the head pressure she feels. So today, she basically stayed in bed most of the day.

The kids compensate for our “no mom at meal times” by going to give her hugs, racing back to the table, and then arguing vehemently about who won. I wish I (or Rhonda) had boy’s energy. Although Cody has an ear infection and is on antibiotics, the only way you would know it is that he does not hear as well (especially when daddy asks him to pick up toys).

In the midst of caring for everyone and finding it difficult to write, it was nice this past week to receive my book back from the publishers, Christian Faith and Scholarship: An Exploration of Contemporary Developments. It's not exactly popular reading, but I did notice that amazon had a copy in case anyone wonders what I do besides help pick up toys.

Grace and gifts

This whole experience sure makes you appreciate the gifts from people that just lift your spirits at the right time. Each of the past two Saturdays I found my attitude was going in the wrong direction, and I found myself frustrated and angry quite easily. Both Saturdays friends (not knowing my state) happened to offer to keep the kids for a few hours. Both times Rhonda and I felt the gift of silence and time alone refreshed us immensely. These little gifts from God and others have been precious. We only hope we can return such wonderful gifts to others when they need them.

Rhonda is slowly doing a bit better. Recovery after the relapse has been much slower (we're also tryng to take it slower). She is still using the walker, but she did get outside for a brief moment this morning. This is the first time she's been outside since the doctor's appointment on Monday. Since she is spending a large amount of time in bed, she's catching up on lots of reading and watching more movies than she's watched probably the whole last year. She'll be open to any recommendations.

Improvement and Cody

Today, was the first noticable day of significant improvement for Rhonda since the second hit of the syndrome. We think the steroids may be helping with the inflamation which may be helping with the other symptoms. She's gotten out to the kitchen and living room twice today.

I think the boys will be happy to see some progress. Yesterday, I smiled at Cody across the table while typing some e-mail. Usually, he returns my smiles. Instead, he looked seriously at me and asked, "Daddy, when is mommy going to get better." I can tell he's feeling things a bit. Still, he also asked Rhonda excitedly last night, "Whose house do I get to go to next!" He's been loving the chance to experience lots of new friends and toys.

The other good news is that we've also had our other need met for Cody on Thursday. He'll be going to the Mother's Day out at our church where they had an opening. We're also continually blessed by folks offering help with the kids, helping with laundry and providing meals.

Yet, just as things improve a little, Cody has come down with a fever and cough. As a result, I'm home with him right now. Still, that doesn't seem so big when there are bigger challenges in the house. Perhaps, it is Lord bringing peace in the midst of caring for three. Thanks for your prayers.

Stable but weak

It feels like life has stabilized a bit for us. Rhonda is experiencing only mild stomach problems and head pressure. The main change from this second emergence of the syndrom is that she is now much weaker--even weaker than when she first went into the hospital. Currently, she uses a walker and tries to get up at least every hour to walk around the room. Still, a stroll to the kitchen is exhausting. Hearing the boys' fights is even worse (which makes dad glad the weather is getting cooler--more outside play is coming).

We did make it to the neurologists office yesterday. They thought that she should try a short dose of steroids to try and reduce the inflammation caused by the immune system's attack on the nerves. She started those this morning. Although one friend joked that they would give her more energy and strength we haven't seen it. Emotionally, as one can expect, this second round has emotionally been more difficult. The kids do not always seem so understanding and Rhonda feels helpless. Still, she's reading and listening to music to keep her spirit up and fed. We joked tonight that she now has what every mom dreams about--meals brought every week night and time to read, meditate and listen to music. However, I don't think she would recommend GB as a path to fulfilling those desires to anyone.

Thanks again for all the wonderful help. Due to aid of friends we've had so many of our needs met. Thank you. About the only major pressing need we find right now is what to do with Cody on Thursdays. I'm at least trying to do a little of the research I'm supposed to do this semester during my sabbatical--around four to five hours a day--while still taking care of the boys and Rhonda. Right now, I'm able to do some things from home and still be there for Rhonda, but with either of the boys around I find writing and reading virtually impossible (no surprise). Cody is doing well with two days of preschool and going over to friends houses to play on other days, so we're trying to stick with those options for now since his world has already been turned around a bit.

The Body

The body of Christ has been wonderful. When I've been physically, emotionally and mentally wiped out, someone has called to offer help, etc. I thank you and the Lord for it all. For instance, the last blog was actually delivered over a neighbors unsecured e-mail connection (I figured they'd understand), because out internet went out. Then yesterday, a colleague from work just called to see if I needed anything. He went out and visited two stores to get the part I needed (note: trust Radio Shack and not Circuit City on those things). Others have offered help with the boys. Two others came over to clean up our house. We certainly couldn't do it without the wonderful help. Especially because this second recurrance of the symptoms really hit us all hard emotionally. It's hard to feel like we're starting recovery all over again (and even at times we've wondered--how soon is recovery starting again). I can even tell that Cody is feeling it. Bennett interestly is really responding as a servant leader for which I'm thankful. When I've asked him to rise to the challenge of helping he has done so. Cody also in his own way. He's been learning how to take water to mommy--a wonderful reversal since for his four years of life he has constantly asked mommy to get him drinks.

Rhonda is doing a bit better, since she has mainly been resting in bed. She is back to using the walker and she also feels like not only her lower body but also her upper body is weak again. We felt like we were taking revovery slow, but we realize we'll have to take it even slower. Fortunately, the stomach nauseu has subsided so she can eat and drink coffee (two things that help her strength and the headaches). The nausueu and headaches have really been the tough symptoms.

Spiritually, you learn a lot about yourself during this time. We don't ask the why questions really--we both know this kind of stuff fills our fallen and broken world--even for Christians. We have experienced the wonderful redemptive role of Christ's body in the midst of our body's being broken. Even now, it brings tears to my eyes. As for me personally, I find that in the midst of the flurry, those old habits come out--good and bad. It strips away the props and reveals you for who you are--sometimes a demanding, defensive person who wants the world to work right and people (espcially doctors and pharmacists) to be efficient for my family/ and sometimes a person who perseveres in the midst of struggle/ and sometimes someone who lets stress eat away my strength/ and sometimes someone who draws inspiration from the best of life's music, love and friendship. I appreicate your prayers for the spirit of God to guide, stenghten and heal us.

Steps backward

Rhonda got home from her hospital treatment at 8:30 tonight. She still feels very weak. This past two days have been disappointing and difficult. Ever since Rhonda left the hospital the first time, we felt like she was making slow but steady progress. Now, we feel like we've just lost two weeks of progress and that we're right back to where she was at the end of the first hospital visit. We pray that this booster IG treatment really helps.

Feeling symptoms again

We'd appreciate your prayers. Rhonda had a horrible night. She feels like she's feeling all of the same symptoms again with some other ones (nauseau). We called the neurologist at 6am this morning. He said it is unlikely it is a relapse, but said sometimes at three weeks they need to give a booster treatment. He will be ordering another treatment of immunoglobulin (outpatient) today. We're just waiting and enduring.

Activity hangover

Rhonda called me and asked me to come home from Baylor today. She was feeling horrible. We realized that her two outings yesterday (Cody’s b-day party and the neurologist’s visit) wiped her out. We’re also realizing that we’re going to need more consistent help with Cody on Tuesdays and Thursdays between 8:30 and 3:30 (I’m coming home at 3:30 these days). If anyone knows of someone (e.g., a Baylor student, an older woman from our church, etc.) who could come over for two to three hours on those days, we’d be glad to know. Cody has also enjoyed playing with the neighbors or other young children during those times as well.

It's the end of the day now. Today, for the first time it felt like we took some steps back. After feeling like we were making small but consistent baby steps, the couple steps back were an unwelcome and jarring interuption. Rhonda spent most of the day in bed with a headache, weird nerve sensations and some other symptoms that had disappeared for quite a few days. Hoping and praying we don't have many of these.

Life after mom

We're settling into life without the help of my mom. We've survived two days so far. Actually, we're getting lots of wonderful help from church friends and neighbors (e.g., meals, buying groceries, and even putting clean sheets on beds--the last one is especially a bit challenging for both of us right now).

Rhonda saw the nurse practioner (NP) at the neurologists office today. Another test for MS had come back negative which merely reinforced the GB diagnosis. The NP said Rhonda is progressing as well as can be expected. She reminded us that it usually takes GB patients six months to recover, although since Rhonda experienced a mild case we're hoping for a shorter recovery time. When the NP sees Rhonda in a month she said she'll have a better idea if she has an permanment nerve damage. She recommended that Rhonda not drive for that month--we'll see.

Rhonda did get up to Cody's school today for his school birthday party. We felt like seventy year olds--me helping Rhonda slowly walk through the door with my one good arm. Still, it was fun to experience out now outgoing Cody's preschool class. He's already asking when his next birthday will take place and if he will get toys for that one. All the help Rhonda is receiving seems to have made him look beyond himself though. He says he wants to be a doctor when he gets older. He says he's also going to be a "cooker." He told us in the car, "mommy, when I get older I'm going to cook for you all day and make you peas and broccoli and all kinds of good stuff." As good parents, we think we need to try and help him reach his childhood dream.

Reality

I had tears in my eyes when I said good-bye to my mother-in law last night. We sure needed her and she certainly kept the house going during a very unusual time. It was especially great to have her for Cody's four year old birthday. That made it extra special and the help with making cupcakes and clean-up was wonderful.
I continue to make small improvements and even went for a very small stroll down the path behind our house. I think we looked very funny with Perry's right hand in a cast and the other arm holding me up. I am sure that people must have wondered if we had been in an accident. Our pace was extremely slow but that is okay. At least we were moving. Someone last week actually ventured to call us gimpy and limpy(I am not mentioning names on that- we thought it was funny). Of course my stamina is not the greatest but it is improving and as long as I don't have to be on my feet alot or walk a long way I can tolerate it.
Reentering normal life( if you want to call that) is at times overwhelming. Even when you are not quite well your kids still fight, the house still gets dirty, and there are still bills to pay and calls to make. It is amazing how many details there are to running a household. It is during these times when I choose to thank God for the gift of today. He will give me strength and wisdom in how to manage and pace myself.

So Thankful

It is hard to believe two weeks ago I was wondering whether I should go to the hospital or not. I am so glad that I did. I am so thankful that they quickly diagnosed me and started the gammaglobulin infusion right away. A lot has happened in the last two weeks and there are times I find myself wondering if it really happened. Of course that doesn't last long when I get up and try to walk to the kitchen.

When Perry told me that he was going to start a blog it overwhelmed me. Thankfully he was the one writing and so I rested. It is not until recently that I have had any motivation to write. Needless to say I have had lots of time to think and read and of course lots of time to pray and reflect. It has been so good!! and really I have felt so peaceful. Thank you for praying! I have really felt God's presence and know without a doubt that I could not do this without him. There are many times during the day where we have little pep talks (especially in the morning). God has helped me so much in choosing to be thankful, choosing to recognize his presence and control during this time, and recognizing all the answered prayer.
I wanted to share a couple of answered prayer
*Prior to the summer my sweet Cody was still pretty clingy and really found new situations difficult. He even cried when I mentioned that he would be going to preschool in the fall. He made a dramatic transformation this summer and I hardly recognize this mature boy. Is that a coincidence? No way. The adjustment to preschool has been easy, he got rid of his pull-ups at night with no problem, and is much more independent. God was preparing him.
*Some of you may know that Perry has a sabbatical this semester. What a blessing that has been for him to work when he can but not have the stress of teaching classes. Praise God he still gets paid and we have benefits. We were even blessed with some extra money this summer which God knew we would need to help pay for medical bills.
*It certainly is no coincidence that one of my favorite verses in the last few years is so applicable. Romans 15:13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

So, I am so blessed by all your encouragement and help. Pray for continued peace and especially this week as we adjust to not have grandma around. She has been amazing!