I'm sad for you mommy

"Mommy, do people die from Guillian Barre?" Bennett asked this question tonight. Bennett is not a child who feels the environment around him. In fact, his constant silliness and joy in the midst of our difficulties has been a wonderful gift from God throughout this time. Still, as his question revealed, he's starting to understand everything a bit more. He went on to comment, "Mommy, are you sad you have Guillian Barre? I'm sad for you mommy."

Cody feels it all more--probably because his weekly schedule is much more chaotic than Bennett's. Throughout this whole time, he has struggled with mommy's sickness. Still, he also makes us smile. He now likes to be called Dr. Cody as he pretends that he is taking care of mommy.

Rhonda continues to feel improvement with her back soreness and pain. Her GB symptoms have also subsided to pre spinal tap levels, although they continue to flare up with increased activity. Rhonda's headaches and vision problems continue, although if Rhonda stays on top of the headaches she can control the severity of them.

Both of us are now struggling with how to think about this issue. We remain hopeful, but we also start to wonder if we need to change from living like this will slowly get better over the next six months to thinking more about this issue as a chronic problem. These are not easy discussions. We often feel too tired or emotionally drained to go that direction. We pray for wisdom and grace.

Headache

The good news is that Rhonda was able to walk around a bit more today and her back pain is also diminishing a bit more. Plus, the boys had a good day with the sitter who will be coming on Tuesday and Thursday. Cody was especially chatty with her, according to Rhonda, which is a blessing since he tends to be a bit preferential in his affections and openness.

Unfortunately, Rhonda's headache was so bad tonight that she spent the whole evening in bed. For some reason her headaches are the worst during windy days. It's times like these that I feel a bit like a single parent. Fortunately, I had a good time with the boys at the library and the Lord provides strength.

Saying good-bye to parents

We said good-bye to my parents this morning. We were all a bit weepy and sad. They came at such a difficult time and really ministered to us. I'm so thankful for their godly servants heart and example.

We're trying to settle back into life, although we're again starting recovery from further back. Rhonda's back is a little better, but her other symptoms remain the same. The effects of the four IVIG treatments usually take a few days. By the way, my brother sent a web site for a British group that he found quite helpful. I think it does do a good job of explaining CIDP in plain language. It is: http://www.gbs.org.uk/info/cidp.htm

One answer to prayer is that many of the needs I wrote about last blog have been met in various ways. We have found a college student to help us on Tuesdays and Thursdays. We've also had folks give us books on tape and point us to further resources. Thanks so much for your help.

Aggressive Treatment for CIDP and the future

We had a helpful visit with the nurse practioner in the neurologist's office yesterday. We agreed that it appears quite clear from all Rhonda's symptoms that she probably has Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) which is the chronic version of Guillain-Barré. In addition, in light of her deteriorating condition recently, the nurse practioner ordered four more treatments of intravenous immune globulin (IVIG). Rhonda will have those over the next four days In addition, it is likely that she will need one each month to help control the symptoms. The prognosis for CIDP patients, similar to GB patients, varies. Of course, we're hoping and praying for a full recovery.

Currently, Rhonda continues to experience back pain from the blood patch that was needed to address the problems caused by the spinal tap. In addition, her CIDP symptoms have worsened so that she can no longer walk as much around the house. Fortunately, she does not have the balance problems that she had right out of getting out of the hospital, so she can still take care of her basic needs without a walker. She also continues to have headaches and vision problems. The vision problems are actually some of the most difficult for Rhonda since she cannot read. Even helping with the kids homework, which is a big help, becomes more difficult. Of course, we're hoping that the IVIG treatments help further her progress next week.

Unfortuantely, while I was able to leave Rhonda with one or both of the kids for short times, I currently cannot do that. By God's providence and grace, my parents have been here for the past two and a half weeks. They've been a wonderful help and support. However, they will be leaving this Monday morning.

Folks have asked how they can help. Right now, we will be looking for someone to come and stay at our house with Rhonda and Cody (and later Bennett when he gets home from school) from Tuesday 12:30 to 5:30 and Thursday 2:30 to 5:30. In addition, this Monday, we'll need someone from 2:30 to 5:00. At the other times, Cody and Bennett have school or I can write/work from home.

In addition, if anyone has books on tape that you think Rhonda might like, I'm sure Rhonda would appreciate them (she likes Christian fiction or nonfiction, but I'm sure she's open to other options).

As always, we are so thankful for the support family and friends have given us. Thanks so much for all the meals, rides, gifts, prayers, etc. I can't imagine what it would be like without you.

one day of progress but then...

It's hard to ride this emotional rollar coaster ride. Yesterday, it finally felt like we had some forward movement. Rhonda's spinal headaches had went away and the GB symptoms had seemed to subside. However, this morning Rhonda said she had a horrible night of sleep due to back pain (from the blood patch procedure) and her GB symptoms seemed worse. It seems like we get one additional symptom from a medical test fixed but then that new fix now makes the problem worse (e.g., back pain).

A day in the hosptial

Today, Rhonda and I spent the holiday in the hospital. She received her blood patch for headaches caused by the leaking spinal fluid this morning and her Immunoglobulin (IGG) treatment for the Guillian Barre this afternoon. Fortunately, the patch seems to be working and Rhonda is getting some of the first extended hours of sleep she's had in a few days tonight. All the stress on her body seems to have caused the Guillian Barre symptoms to have flared up again. We're hoping the IGG helps. The staff at the hospital were great. When Rhonda left for the blood patch, one nurse popped her head in the room and told me she was praying for Rhonda. For some reason, it just caused a bust of tears that had been building up this weekend. The few quiet hours in the afternoon we both celebrated feeling the stress lighten a bit. Rhonda has voiced more, however, the weariness she feels from fighting GB. It's now been five months.

I was able to obtain the results of the MRI today. It came back normal. Tests have consistently ruled out MS.

In bed

Rhonda has remained in bed since her spinal tap on Wednesday except for trips to the bathroom and one bath. We're basically waiting to do the blood patch on Monday which should hopefully stop that spinal fluid leak that is causing the headaches. In addition, she will get an immunoglobulin treatment. We hope that will help with the GB symptoms. We have no idea when we'll hear about the results of the tests. We're also going to be looking into getting another opinion from another neurologist.

Cody is slowly doing better. We're thankful for the tubes in his ear since he's had quite a bit of drainage from one ear. The rest of our family is also on flu medicine to make sure we don't get the flu.

As always, thanks for your prayers. My parents being here has allowed us to stay sane. We both still feel the stress and find comfort in the words of Scripture to not fear, trust in the Lord and to cast our anxieities on him.

backwards

Sometimes one wonders whether some tests are worth it. The spinal tap on Wednesday has resulted in severe headaches for Rhonda (on top of the headaches she has from GB). In addition, her GB has flared up again. Usually, it only hurts in her legs when she does too much activity, but now she feels numbness and burning in her legs and arms. We're not sure why. We called to get the results which we had understood we could learn about on Friday. The doctor is out and won't be back until Jan. 28. Needless to say, we were quite frustrated.

On top of all this, Cody has come down with the flu. Only mommy could console him, so he slept in her bed one night and she hasn't gotten a lot of sleep. We don't know if Rhonda is also battling it and that is why she is feeling bad. She's taking tamaflu.

Please pray that Rhonda can make it through the weekend. She has an Immunoglobulin treatment on Monday that we hope will address her hand /eg symptoms. We're also praying that the spinal cord headaches subside so she does not need a blood patch. We also hope and pray she doesn't get the flu. Right now, it feels like a long time until Monday.

Thankfully, Cody does seem to be doing better.

More tests

Today, Rhonda completed the last of two tests (a MRI on Monday and a spinal tap today). We'll probably learn about the results on Friday. Basically, the doctor is checking to see if she has Chronic Inflammatory Demyelinating Polyneuropathy (see http://www.ninds.nih.gov/disorders/cidp/cidp.htm for a short summary). If so, the treatment options are largely the same as that for GB. For now, we wait.

Fortunately, in the midst of this hectic times, my parents have been here. It makes such a difference to have such wonderful help. Great parents are a wonderful blessing from the Lord.

Going backwards

Rhonda said tonight that she feels like she's moving backwards. Her legs are bothering her now more and her eyes and head continue to give her trouble. After five months of telling ourselves that we just need to be patient and allow for the long-term recovery, we're beginning to wonder. It looks like Rhonda will not be able to have the spinal tap and MRI until late next week. That means it will be another week and a half before the doctor is able to tell us anything. We continue to wait and pray.

A new year but more of the same tests

Today, we had two afternoon doctor visits. One was to check on Cody's ears and the other was to check on Rhonda's eyes and head which continue to bother her (she experiences eye fatigue and head pressure). Cody's ears appear to be fine, however, the neurologist has decided to order more tests for Rhonda (a spinal tap and a third MRI). According to the doctor, Guillain-Barre patients usually recover at a fairly steady pace. Rhonda's recurring symptoms may point to a chronic form of the disease (Guillain-Barre is another name for the acute autoimmune polyradiculoneuropathy. The chronic form is known as chronic inflammatory demyelinating polyneuropathy). Hopefully, the tests will help us learn more.

In the meantime, we're trying to get back into a normal routine with the boys at school. I'll also be teaching classes again this Fall. Fortuantely, Rhonda is able to watch the boys by herself now, so it makes things a bit easier. She is still not driving yet because of her eye troubles. We continue to ask for prayers for healing as well as energy.