the loud toilet

The kids seem to have enjoyed our slow holiday season. When we asked Bennett what he wanted to do for the holidays, he told us, "Stay home and play." We've been able to do that. Rhonda continues to inch forward and backwards. The result is that we both seem to be tired of talking and writing about how she's doing. One day her head pressure and legs seem better and the next day they are worse. We're not always sure why. Our main strategy right now is for Rhonda to take it easy. Fortunately, since we've been around the house most of the holidays, we've been able to accomplish that and still enjoy good family time. In addition, Rhonda was able to enjoy a few hours out of the house for Christmas at some friends.

We also have dealt with additional medical issues as well (we seem to always have at least two or three family members dealing with medical issues). Cody had surgery to have tubes in his ears this past Friday. His hearing had been quite limited due to fluid in both his ears. One of the first things he said when he got home occurred after he went to the bathroom. He came out and said, "Wow, when the toilet flushes it is really loud." We think the surgery was a success.

Thanks for your prayers and support. Please pray for our perseverence during this time. Rhonda's recovery seems quite slow at this time. After the first of the year, we may need to visit the doctor again to assess whether the recovery is stalled a bit. Right now, we're not quite sure.

a different sort of holiday season

I didn't realize it had been a whole week since I blogged last. It's felt a bit like some weeks before my trips. Rhonda has really had to scale back her activity in order to feel like she can get some relief from the head pressure. She does feel like it is better than last week. Today, however, she has felt a bit of the old vertigo that she had some time ago. We were hoping that she would be better for the holidays and possibly be able to drive in the new year but GB certainly knows how to put your hopes on a rollar coaster ride.

Please pray that Rhonda is able to get the rest and quiet she needs--especially with our two boys in the house all day for the holidays.

not quite the week we expected

I had hoped that I had turned over the blog to Rhonda for good, but it seems that things do not always quite go as we expect. This week has been one of those. Rhonda started experiencing her head pressure again after a busy Monday and Tuesday. Her legs are also really bothering her. In addition, her mom has been sick this week. So what we hoped would be a casual week with mom and dad has been a time of trying to heal. We'd appreciate your prayers. I always find the head pressure symptoms the toughest since it really effects the overall mood at our home (or perhaps its just me). Rhonda has also voiced a bit more how tired she is starting to get of the symptoms. She's really had a great attitude these past four months, but these little relapses are always difficult.

Mom and Dad are here!

Sometimes it is just nice to have your Mommy when you are sick. Do you ever get too old for that? On Monday night my parents arrived after a very eventful trip from Canada. I am amazed that they even arrived with their luggage. Since, I have often heard them comment how wonderful the weather is compared to the -25 degrees Celsius ( for those of you that don't know celsius it is very cold) in Canada. My mom is already dreading her return.

This week has been a big week for me not only because my parents are here, but also because I drove for the first time since August. Nothing too ambitious but trips to the doctor for Cody and myself as well as dropping off and picking up Cody from preschool on Wednesday. I really wanted to experiment while my parents were here because I knew they could come with me. That way if I got tired I could at least trade off. I think it went well and I feel like I can tolerate short trips. I feel like I continue to slowly improve and as long as I have times to rest in between activity I am managing. The key is not having to walk a lot and resting when I can.

The neurologist is pleased with my progress and feels like I am heading in the right direction. Amazingly, I don't have to see him until April. Makes me wonder if I will be back to normal by then.
I would appreciate your prayers for continued healing and good health. I feel like I get sick easily especially colds. I have had two in the last month and I have had terrible coughs. Thankfully it does end after about 10days. I am hoping to avoid the flu as this would really aggravate the Guillian Barre symptoms.
Thank you for continuing to support, pray and bless our family with meals. We are really enjoying having family here and even plan on making some homemade ice cream tomorrow( the boys are very excited). That sounds like a crazy thing to do in December ,but I get confused down here with the trees turning color and the warm weather. Perry often teases me that he can't believe that I grew up Canada because I was made for Texas.

What a strange day!

Have you even had one of those days when you say, "This is crazy?!!"Yesterday was one of them for me. I spent most the morning in bed because my legs felt weak and hurting and it was probably good because I had a lot of time to pray and rest. I was also on the phone back and forth to Canada because my brother had fractured a vertebrae in his neck and was in severe pain and having some numbness and weakness in his arms. They were waiting to see when he would go in for surgery. It was at the moment when my mom told me that he would have surgery as soon as they had a spot when Cody came in saying he had a stomach ache. For the next thirty minutes Cody screamed and clawed his stomach while rolling all over the floor (believe or not we have had episodes of this before). It is at this point I am calling Perry to come home because I need help and I think we need to take him in to the doctor. So with a neighbor getting Bennett from the school bus ,we are off to the doctor to find after x-ray that his intestines are full of gas with some possible constipation. The doctor is speculating that his stomach issues may have something to do with all the decongestants he has been on to try and help his chronic congestion and ear problems. Needless to say we are going to try and correct these issues as well as go to the ENT for discussion on tubes in his ears.
Thankfully today is a new day and I just heard that my brother's surgery went well and they were able to fuse two vertebraes together. He will wear a neck brace for the next three months and should recover without nerve damage. Cody is also his usual self and wanting to know when he can buy the next Star Wars toy.
So, in the midst of the craziness God is continually reminding me through his word to put my hope and trust in him. With that in mind, I will enjoy the quietness and the peace of the moment and remember a quote I read recently " Each day we are blessed by the gifts from a Father above who knows our needs befroe we voice them".
Thank you, Thank you for all the ways you remind us that you are still praying! We appreciate that so much.

So thankful

I so thankful that Perry is home now and even more thankful that he won't be making any more trips to Europe this year. No more transition sounds good to me.
I am even more thankful for friends and family who have prayed for us and helped us take care of our children, cooking, laundry, cleaning.... You have been such servants and have blessed us. Thank you for your faithfulness to us during my recovery.
I am most thankful for my husband. He has been amazing and so supportive and has been such a servant to me amidst the stress of juggling everthing. This has been a huge help.

I am inching forward and it feels so good. The last week I have had more relief than previously and it feels really good to be able to move around more. I attitribute this to of course answers to prayer but also a supplement that I have taken. I have been so sensitive to medicine that I have found it difficult to take the medicine that the doctors have wanted me to take. Of course, most of them come with quite a few side effects. I have prayed that God would show me what to do. I don't believe it was a coincidence that my best friend's husband in Canada has taken this supplement with amazing relief and encouraged me to try it. This supplement is all natural and is very effective for conditions where there is a lot of inflammation which is my problem.

So, I am grateful and hope that I will even be able to go out for Thanksgiving dinner. I am trying to take it slow and working on trying to take of the boys more so that Perry can work more. I still have to rest a lot and thankfully the boys are used to me lying in my bed while we read and play games and cuddle. They don't seem to mind.

Lastly, I want to give thanksgiving for the greatest gift of all... Christ Jesus who extended such amazing grace to us amidst our sinfulness. He suffered so much so that we might have life and forgiveness and most of all hope. I am so humbled that he would do that for me.

Transition

This week has felt challenging. I realize that even if I am not doing the greatest, as long as the boys are coping and well it seems to help tremendously. Bennett caught the cold that I had and Cody continues to struggle with congestion and drainage. Whether the cause is that or just being tried of transition I don't know. They have been particularly draining. They have been more disobedient and are constantly testing the boundaries. It has been even harder because Cody often refuses help from Grandma.
I am so thankful Perry is home today and so I pray that getting back into a regular routine will help. People frequently ask me how I am doing and quite honestly I don't know what to say. I think it is probably because this is a bit unusual. I am used to what it means to have a cold or the flu where it seems like you can see improvement more quickly after the worst is over. This is so much more gradual (so slow) and seems often like a roller coaster. I have to look at a week or month rather than a day to see the improvement.
So, emotionally and spiritually I feel like I am handling it well (of course I have my moments). Physically I think I am where I am suppose to be especially since it has only been three months. That is weird to say... only three months. I am optimistic obviously because I will recover, but sometimes quite honestly I wonder how to get from the three months to the six to nine months. That seems so gray.
Please pray that I will be able to rest in the midst of the chaos. I have no problem resting when the boys are not here. The hard part is when they are here. They need me and their lives continue despite this. Yes, for the most part they have amazingly thrived and I think that they have loved the extra cuddle and reading time. I pray that I will have the emotional energy and patience to be the parent I need to be during this time.

Good to laugh

Having my sister and brother in law has been good medicine for me. They are definitely kids at heart. I have found myself laughing quite often the last few days. I am not sure they totally knew what they were signing up for but have adjusted quite well to the Glanzer routine. They are making lunches, filling sippy cups, and finding missing toys like the best of them. There have been a few surprises. For example, when they returned from Baylor and both boys were soaking wet and proceeded to tell me that while they were looking at a 2Ft deep fountain and both boys accidentally fell in. Thankfully Conrad rescued them and Coralee agreed that she realizes she needs to have eyes in the back of her head. And last night I couldn't help but laugh when I saw Coralee with water pistol in hand sneaking around the corner to get Bennett. It seems we are having a water theme lately. I really laughed later when my brother in law told me that he was glad that the person bringing dinner didn't come five minutes earlier because they would gotten a cup full of water on them ( he had been waiting at the front door for the Coralee and the boys). Never a dull moment at the Glanzer household.

So we are in good hands I think. Thankfully no one else got fever and I remain the only one fighting a cold. I am back to my original routine of resting a lot during the day so that I have energy for when the boys come home and for the evening schedule. This seems to help. I am still having quite a bit of pain in my legs after walking and am hoping that that will lessen as time goes on. Thankfully the headaches and pressure in my head has gotten milder.
Thank you for your prayers. Perry arrived safely and has started his travelling around England.

inches back

So much for the times of emotional stability. It seems like things always happen at once. I'm a couple days from leaving on a 10 day trip. Bennett came down with a fever last night. And the last few days. Rhonda has been inching backwards. Her eye problems are back and her head pressure has worsened. Plus, she's battling some sinus issues.

Fortunately, Bennett seemed to be doing better today. In the midst of times like these, I really find the spiritual battle heat up. My thoughts feel heavy and humorless, and I continually feel like I must throw my shield up at the negative darts coming in. Rhonda, who has maintained a wonderful spirit and godly focus throughout these times also starts to feel the emotional weight of it all. We do appreciate your prayers.

Eratic progress

Since life hasn't felt quite so emotionally dramatic lately, I don't find myself posting as much. Rhonda continues to make eratic progress. After a bit of activity this weekend, Rhonda's first night out in two months with some friends and a wheelchair trip to the park for a picnic, she had to slow down and take it easy the past couple days (which means staying off her feet and in bed more). Still, it now feels like we're moving forward a few inches and then maybe going an inch back only once in a while. She can now move around the house more easily, but she still finds she has to plan her trips to the kitchen since they still must be limited. You can pray that she'd have wisdom about where to draw the line. She starts to feel better and then wants to help by doing more--which is her nature (even though I assure her the best help will be a slow, steady recovery).

We would also appreciate your prayers as I'll be leaving for another one of my research trips this Sunday. I'll be traveling to England for ten days to study Christian higher education in that country. Again, I'll be covering a lot of territory. Rhonda's sister and brother-in-law will be in town for the first six days and my mom will fly in for the last four. We hope we don't have any trips to the ER, broken fridges, or missed trains. While drama makes for good blog reading it's nice to have those regular days.

Encouraged

It has felt so good to be moving around more this week. It has been the first time in the last two months where I have desired to do more. That is good sign! The pressure in my head is mild and I think even my eyes are giving me some relief. It is at this point where I am so thankful and at the same time a bit overwhelmed. Have you ever thought about how much it takes to run a household?Wow! I have told Perry I almost don't even know what to add first (don't worry I don't feel any pressure to do it all but just even the most simple things).I have been quite removed from a lot of it for over two months. It is also hard to know how much my body can handle. This has always the hardest about Guillian Barre. No one is telling. I have definitely found that with increased activity comes more pain in my legs. I have found that I can handle that as long as the pressure in my head is bearable.
So, this past week I have tried to make my own lunch and Perry has started going to Baylor to work. I certainly get tired easily but thankfully my bed is close by and that is comforting. Going to the doctor for the nerve testing was encouraging because it confirmed that I do not have the chronic version which is a huge praise and other part is that nerves that were damaged are healing. Time is really the only thing that will help the healing process. I am constantly reminded of this. It is obvious that going out stresses my body and so I have become quite a home body and content to be at home at least for now.
Thank you for your prayers and encouragement. I know and feel that you are praying. How do I know? The times of discouragement and anxiety have been brief through all this. It really is amazing. I have felt God's presence and have learned so much. I have been keeping a small book of quotes and verses and I am constantly reading them. It has helped me refocus and recognize God's help and provision for me.

Here are a couple of quotes that have made me ponder.
*From Betty Stam who was martyred in China- " Only worthwhile life is one of unconditional surrender to God's will and of living his way and trusting his love and guidance.
*"As long as I was doing, I was in control. Now I could not do and I had no control"(I have certainly had to let go of a lot of things )
My favorite books during this time: ( must reads!!)
Calm my Anxious Heart by Linda Dillow
Lessons I Learned in the Dark by Jennifer Rothschild

Be blessed. You have certainly blessed me and my family.

Thankful for progress

It's been wonderful to see Rhonda walking around the house on her own quite a bit more today. It's also great to feel like we finally have some momentum back. She visited the doctor yesterday and did not experience major side effects today from the increased activity.

The doctor's visit was to assess nerve damage. She only appears to have permanent demage in one nerve on the side of one leg. Otherwise, the doctor thought she is right where she is supposed to be. Lord willing, we won't have to see the doctor for another month--which will be a nice break. It has been a time to be thankful.

We also continue to be thankful for tremendous support from the body of Christ. Today for example, we received a wonderful gift from some friends who came and helped organize the kid's closets. They are now designed so that it will be easier for the kids to know where to put their toys. They must have peeked into their rooms this past month. Some things have taken a back seat these past few months and making sure the kids pick up their rooms has been one of them. It amazes us how needs we couldn't have even articulated have been met. Thanks.

Forward momentum

After enjoying my parents help for the past couple of days home, it was back to reality today after my parents left this morning. We continue, however, to enjoy the wonderful help of many friends. With their help I was actually able to spend a day on campus today taking care of various responsibilities. It also helps that Rhonda is now able to take care of herself more. She can now make lunch for herself and take a few extra trips to the kitchen. The challenge she faces now is figuring out her limits and which new things she should try. Emotionally, it feels good to feel like we have some forward momentum even if this remains a year-long process.

An eventful week

I'm back from my 8 day trip to Hungary, Slovakia and Romania. It was quite an eventful week both for me but especially for our family (including my parents who were here helping taking care of Rhonda an the boys).

Last Monday, Bennett accientally ate a peanut butter rice crispee after his soccer game. Since he is allergic to peanuts, Rhonda and my dad ended up in the ER. They got home around 11 pm after shots of epinephrin. Fortunately, Rhonda felt like she didn't pay too badly for the late night out.

To add to the weekly excitement on Wednesday morning, our fridge went out.

On Thursday I missed one of my trains (fortunately, I was able to get a second one). Still, there is nothing to improve your prayer life like taking a 9pm train into a Romanian town where I guy you don't know and have never met or seen is supposed to meet you.

Today, Cody wanted to get in on the excitement. He screamed/cried for 45 minutes straight (while writhing on the floor) after dinner until he fell asleep. We believe it was due to stomach cramps (we suspect perhaps an allergy).

All in all, we've all had a tiring week. Fortunately, in the midst of this all Rhonda still is inching forward. I've returned to find her walking around the room without her walker and being bit more active.

We're praying this next week will be better, especially since my parents leave Tuesday.

I’m writing this blog from Budapest to let everyone know that I arrived safe and sound and that you probably won’t see a posting for the next week unless Rhonda decides to do so.

Trial and error

As you probably have figured out from reading the blog that every day and every week is a different experience. That is what makes it so challenging at times because I am always trying to figure out how much I can do based on how I respond (ie. can I go the kitchen and eat with my family this evening). My physical therapist described it well by saying that there is an invisible line and you don't always know when you have crossed it. So many times I felt okay at the time only to suffer from my activity the next day. I am learning unfortunately the hard way. My body is so sensitive and especially this week reading books and my Bible and even watching movies trigger headaches and pressure in the back of my head. So it is at this point where I don't have the things that I would normally use to distract me from the annoying symptoms. What do I do? I pray and memorize scripture that God has given me in the last 8weeks. "Find rest, O my soul in God alone, my hope comes from him. He alone is my rock and my salvation, he is my fortress I will not be shaken" Ps. 62:5, Isa 41:10, Josh 1:9 and many more. Thankfully this afternoon I am feeling a little reprieve from the intensity. Thank you for praying. I have been so blessed by your calls, notes and little gifts you have left on our door step.

Back again

We're finding that Guillian-Barre is a cruel disease on your emotions. Just when you think you're going forward a bit. Wham, it hits again. Rhonda said it feels like her nerves are screaming at her today and her head pressure is back. It knocks the emotional wind out of you at times. Thanks for your prayers.

inches forward inch back

It's been good to feel like we have forward momentum again. Sunday and Monday felt like inch forward days again. Rhonda's symptoms were more manageable, she was able to get out of the room a couple more times than usual, and she had some good nights of sleep. On Monday, she had a long afternoon at the eye doctor, so that set her back a bit last night and today. We're certainly finding that she has to be very careful about her activity.

The other good news is that the eye doctor found no major problems. He attributes the shadow in her eye to the Guillian-Barre. Hopefully, with time that will disappear.

Lord willing, we now have sixteen days off from doctor's appointments! That will be nice, especially since my parents take over for eight days on Saturday. We appreciate your prayers.

inching forward again

The last two days it has felt like we've almost reached some stability. The kids are both off antibiotics and seem well. Rhonda says she feels like she is inching forward again, although this time she is being very careful about her progress. Her headaches and head pressure have subsided to manageable levels and she's been sleeping decent. Thanks for your prayers.

We even went out for a family "walk" this evening. The boys took turns pushing mommy in the wheel chair. Even the wheel chair rides inflame Rhonda's healing nerves a bit, so we're making them short. But it sure is nice for her to get outside. As for her other activity, Rhonda is now consistently able to make it out for meals and an occasional living room visit. Plus, she feels up to interacting more with the boys which is a wonderful blessing.

With things stabilized a bit and my parents coming down next Friday, I will be leaving for a short research trip to Eastern Europe for eight days next Saturday. We'd certainly appreciate your prayers during that time.

No big news is good news

Both tests came back normal from the doctor's office today (the MRI and the test of the eye nerve). That was good news. Rhonda also continues to have some some relief from the worst of her symptoms, such as the vertigo, severe head pressure, and stinging nerve pain in her legs, which we believe is probably the result of the IGG treatments she had last week. We all agreed that we probably just need to keep dealing with the symptoms, engage in physical therapy and be patient. The nurse practioner perscribed some new drugs for the headaches that hopefully will not have severe side-effects for Rhonda. In addition, Rhonda will see an eye doctor on Monday just to make sure there is nothing non-nerve related wrong with the eye.

Overall, the doctor visit merely reinforced the conclusions we had suspected. I think it has helped that we've talked to some former GB patients who also shared Rhonda's unique symptoms (e.g., servere headaches and head pressure). The literature only occasionally refered to these symptoms and the doctor and nurse practioner have occasionlly suggested that they may not be GB related, so it often made us wonder. It also helps to talk to other GB patients to be reminded how long the recovery process is. Although it has been seven weeks since Rhonda started having symptoms, we find ourselves having to remember that recovery may be seven months or perhaps even longer (for one GB patient we talked to it was nine months, for others it has been over a year).

We're also thankful that Rhonda has enjoyed some good sleep the last couple of evenings. That makes a tremendous difference.

And as happened since the beginning, we continue to be blessed by wonderful friends who continue to support us with prayers, meals, child care, house cleaning, laundry, books on tape, movies and more. Thanks again to everyone for your concrete expressions of Christ-like love. It has made such a tremendous difference in our lives.

Back to school

Both kids are now back in school. So we are at least over fifty percent healthy as a family. Yesterday, we enjoyed our first quiet morning in a while, but quiet mornings also give you a chance to reflect. Rhonda had her first good cry in a while over lunch yesterday. Some of the lingering questions now seem to rise up a bit more. Did the three IGG's help? Am I making any progress? When will I feel better?

We focused on some of the positives--Rhonda's vertigo and head pressure are both dimenished. The headaches are not quite as severe. It also helped that Rhonda also enjoyed two encouraging calls from friends--one who has had GB that reminded her of the long-term recovery process. One huge praise is that Rhonda has been able to start reading a little more again. She's been able to read the Bible and her favorite books that help her.

usual fall day in Glanzer house

Well, it was a usual fall day in the Glanzer house. One of the kids went to school (Cody). One went to the doctor to get on antibiotics (Bennett for strep). Rhonda went to the hospital (to retake her eye test). And I tried to work at home between interuptions, trips to school or trips to the doctor.

Rhonda had a bad night of sleep again due to a reaction to some Advil PM. Some of you may wonder why some of her symptoms are not treated easily with medicine (e.g., sleep medicine, headache medicine, etc.). Part of the problem is that Rhonda has some weird reactions to medicines (she did even before GB). She'll feel dizzy, faint or one side of her body will tingle, etc. GB seems to have really aggravated this problem. As a result, she becomes very tenative about taking things. It also makes her nervious about nights--which feel so long when she can't sleep

So the one good night and day on Sunday seems to have been followed by a below average night and day. Her left eye continues to bother her as well, so she cannot read or watch videos like she used to. If any of you have good books on tape, it seems that will have to be our new route. We hope to learn more about the eye test at the appointment on Thursday as well as the MRI.

One other note. I appreciate your prayers as well. I've been doing decent, but Bennett's sickness this morning just made me angry, not necessarily at God, just angry about life's current circumstances. It get's compounded when I can't do certain things with my right thumb (open a jar) and can't get any work done. I worked through it, but just the emotions of it all wear me out--something I don't need right now.

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!

More cast time

Well, it was kind of a bummer day in some ways. I did not realize I would be wearing my cast for another three weeks. I did at least get the pin out of my hand that was holding the torn ligament to the bone.

Rhonda is still making progress, although she flunked the "drunk driving" test today at physical therapy and she did not even drink. The therapist asked her to stand with one foot in front of the other with her eyes closed and try to keep her balance. She couldn't do it. So it looks like no driving for her yet.

PT and tough mornings

Rhonda had her first day of more intense physical therapy yesterday and she felt it this morning. Her legs felt weak and heavy. Mornings still remain tough. Overall though, it is good to see her slowly gaining her strength back.

It helps that Cody is enjoying preschool and Bennett is enjoying first grade. When Bennett asked him what his favorite part of school was yesterday, he said, "Everything." Cody said it was celebrating another kid's birthday because "they got rice krispee treats"

First day of first grade

When I picked Bennett up from school and asked him how his day was, he said, "Fantastic." Rhonda when I got home said her day was "fair." Since Cody did not have his "best brother Bennett" for play time, mommy was constantly asked things (even with Grandma's best efforts to play knights, etc.). The new expecations and demands wiped her out a bit. Rhonda said tonight one of the toughest things is feeling a little bit better. You start to do a few things and then the weariness hits. She is still walking better, but the headaches and weariness are constant companions on the walks.

We did enjoy some firsts today in addition to the first day of first grade. The boys had their hair cut by someone else other than mommy. Due to someone's generosity, we all enjoyed in-house haircuts. It was a great blessing. Bennett was fine, but Cody had to be bribed with some Smarties (the Canadian version).

To all the MOPS from Rhonda: "Thank you, Thank you for your thoughtfulness. I loved the baskets and the pajamas were wonderful. How did you know that I needed some? I have felt so loved and taken care of. The meals have been so wonderful and so helpful. Thanks also to Kim for the yummy birthday cake. It made our birthdays really special. I continue to make progress each day and have started outpatient physical therapy. Thankfully I don't need the walker anymore and hope that my legs and body will strengthen quickly. I hope to see you soon."

Walking more

Today, Bennett proclaimed, "Mommy, you're walking around without your walker!" She still occasionally holds on to things because she does not always trust her balance. Our visit to the physical therapist today gave us some insight into why. We discovered that her thigh and torso muscle areas are quite weak. As a result, she does not feel steady at times. She will continue exercises to strengthen those areas.

We're all excited about the continual progress. Emotionally, I think it also helps all of us to see the continued steady improvement. Every couple hours Rhonda still has to lay in bed for an hour or so. Nonetheless, she slowly feels like her strength is returning every day.

We continue to be lavished with wonderful generosity thanks to our Sunday school class, MOPS, friends, and family. Thanks to everyone for our wonderful support and prayers! We are continually thanking God for such Christ-like love and care.

Happy Birthday 2

Ok, my last post was wrong. We did not have quiet birthdays. My wife and other accomplises surprised me with a night out on the town (and I needed it). The boys had been great all week, but Saturday was certainly not one of our better days. I enjoyed some adult conversation instead of refereeing.

Rhonda was also surprised. She was treated to an evening of Bush's chicken, chocolate covered strawberries, brownies, and a housefull of wonderful friends at her beck and call. They even cleaned the house! One awesome gift was a in home pedicure (the boys were especially wondering what was being done to mommy's feet. Rhonda is wondering how she will ever return to normal life again after all this wonderful pampering. She has felt very loved and spoiled. Thanks again to everyone for all the sacrificial love you've shown us.

Happy Birthday 1

Last night Rhonda enjoyed relaxing with my mom by watching a movie while I took the boys swimming at a friends' pool. We've really appreciated all the wonderful help from friends (the offer of a swimming pool for the boys, lots of wonderful meals, Mitch Thompson mowing our yard in the hot Texas heat, a ride to the car repair shop). After I got home she seemed to be wheeling the walker around quite quickly. This morning we were wakened by Bennett coming in and singing happy birthday (it's my birthday today and Rhonda's tomorrow). We have found mornings are still quite difficult. Rhonda still wakes up in the night and in the morning feeling the odd nerve sensations associated withe the GB syndrome in her legs. This morning Rhonda had breakfast and immediately went back to bed saying she felt exhausted. We'll probably enjoy rather quiet birthdays.

As things have slowed down, we've had more time to reflect upon the whole whirlwind of events spiritually. Giving all your fears to God is something that we've had to constantly face each day (it's amazing how easy it is to let your fears start going on the drive between Hewitt and Hillcrest and not take the whole situation to the Lord in prayer). We also think it quite odd that it seems we've been hit with ailments that directly effect our gifting. I write and love to play sports and I'm now had to limit my typing and my major sport is chasing the boys around the house. Rhonda loves to serve other people and now she is the one that needs to be served. We are certainly reminded of how fragile we are and are need for God's grace and strength as well as the body of Christ. We are not the type of people to ask for help (it is especially tough for me to see someone else sweating while mowing our yard), but God is also teaching us some humility as well as our need for Christ's body when we are so weak and helpless.

First full day home

We're enjoying our first full day with Rhonda home. The kids are enjoying doing puzzles with mommy on her bed. Rhonda is able to move around some with the walker, and she can at least shower on her own with the assistance of the walker. It just takes lots of time and breaks. She still feels incredibly weak. The mornings are especially difficult and she shed some tears this morning and commented, "You wake up and just remember the reality of it all." Thanks again for everyones support. The meals have been wonderful and they sure help my mom and I focus on Rhonda and the boys.

The Walking Stick

The boys are sure enjoying having mommy home. Bennett said, "I'm so glad you're home mommy because now I can hug you whenever I want." We also got a laugh from Cody calling Rhonda's walker her walking stick.

Rhonda's home

Yeah. Rhonda just got home from the hospital and we are adjusting. Of course, the boys are glad and the great thing is that although mommy can't get up and find that favorite lost toy, she can give lots of hugs. Currently, she still has some numbness and burning in her hands and legs. She also feels very weak and needs help getting to the bathroom and walking around. Emotionally, the reality of the long term recovery process is starting to sink in and that has brought some tears. Rhonda will soon be starting a regimen of physical therapy three times a week.

Thanks everyone who has prayed for us and offered their support. We'll keep you posted and hopefully you'll hear from Rhonda soon.

P.S. For those who might want a good summary of Guillan-Barre Syndrome you may want to see: http://www.mayoclinic.com/print/guillain-barre-syndrome/DS00413/DSECTION=all&METHOD=print