Molly & Chiari Update 4.27.12

Here's the latest on Molly, with a bit of an overall recap because I keep getting questions that I have only answered in some places. Here's where she (and we) arel. I have been cautious about posting some of this because when improvements come, sometimes they go away again. But things, at least at this point, are looking up in all areas.

MOLLY'S CHIARI SYMPTOMS

Molly's Chiari symptoms have included brain fog (significant difficulty thinking about most anything), balance, muscle fatigue, being easily overwhelmed, and more. I can say today that all these symptoms have been slowly going away for a couple of weeks now and mostly gone! She is back at work at our local elementary school. It's still more difficult than before all this, but she can do it now. Because the symptoms are going away, she's also able to be more involved with our church. Just a couple of weeks ago the slightest bit of loudness or being in a conversation with friends could easily overwhelm her. She would walk out during songs because it messed her up. And then it would devastate her ability to do anything for the rest of a day. Now those moments aren't happening nearly as fast or often, during gathered worship or elsewhere. I'm still protecting her quite a bit until I'm confident she's stable in her health, but things are improving significantly and she is able to do a lot more. God is so good.

MOLLY'S SLEEP

Molly's biggest problem at this point is sleep. Bad sleep = worse symptoms all around. But praise God her sleep is improving too!

Until a couple of weeks ago, she only had a slightly better night's sleep here and there, but nothing to write about. And when I say "slightly," I mean she slept maybe a couple of hours a night, and even that was intermittent. Now she's about 5 days in to an improving sleep schedule. A few days ago she mentioned that she was sound asleep when the alarm clock woke her. That was the first time that happened in months. Typically she was not falling asleep, not staying asleep, and wide awake long before time to wake up (which was 5am!). Now, all elements of sleep are getting better. But this is the area of greatest concern at the moment and we are guarding her sleep schedule.

Just to be clear on a couple of things...

• MRIs: Nothing shown to be wrong. Nothing can be surgically fixed.
• Neurologist: Dealing with symptoms and sleep issues. Seems to have helped slowly but surely. Probably won't meet or change anything with these solutions for a while.

Thanks for all your prayers. Pray her health and sleep continue to improve!

Molly & Chiari Update 4.12.12

Update 4.13: Molly slept terrible last night. Terrible. She is exhausted. She saw her neurologist today. He is trying to manage her sleep, or lack thereof, and we have no idea whether it will work. Nothing has helped so far. We should know in a couple days. I'm not sure I've seen her this frustrated over her health since 2008. Thanks for continued prayers.

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Brief update (4.12): Molly had about 5 better days in a row after some significant time off of her part-time job at the school and a lot of rest. Still not great, but better. More functional in daily life. Some of her brain fog issues have gone away for the most part, though she has remained easily exhausted.

The last two days things have turned worse again. She's barely sleeping, and we can't figure out why. We assume it's making symptoms much worse. It's been linked to times of increased symptoms in the past. I'm taking her to her neurologist tomorrow morning in the hope he'll take this another step and figure out what, if anything, can be done.

We are hoping for answers soon. We are praying for God's help and healing, and for her to continue to place all of her hope in Christ when circumstances at times feel hopeless.

Molly & Chiari Update 3.26.12

As we continue to wait for some news of Molly's MRIs from her neurosurgeon, we decided it would be good today to have her see her local physician. She got to see Molly's symptoms in full bloom. Really bad. Lots of tension, emotion, frustration. But those things helped her doctor to see all that's wrong and the need to do more.

Molly had a blood test to check a number of things. Her neurosurgeon thinks it's possible there are other issues that are making her symptoms worse. It's at least worth a try.

Molly now has a neurologist appointment tomorrow at 11:20am. We are hoping that will offer some answers, or at least get some fresh eyes on her problems and see what comes of it. 

Just trying to keep everyone in the loop. Thanks for your prayers! Many local friends have been generous and supportive. Very thankful for that.

Side Note: Notice in the picture how Molly is gripping her knees tightly with her hands. She didn't know I was taking this, but she is continually experiencing that kind of physical tension and mostly can't help it. Thought it might be helpful for you to see something like that, which I didn't notice until after I took the picture. Also note, the room was decorated in Cubs paraphernalia, which means she's doomed to at least 100 years of frustration. :)

Molly & Chiari Update 3.21.12

MEDICAL

Molly had her MRIs done on Friday at the University of Wisconsin Hospital. They went relatively quickly, but it was a long day. Saturday we mailed the CD of the imaging to Dr. Frim at the University of Chicago Hospital. Hoping to hear from him today or tomorrow. I'll update when we know something.

MOLLY

As best as we can remember, the last 10 days have been the worst stretch of the worst symptoms ever for Molly, including the weeks leading up to her previous surgeries. Mentally for her this has been really difficult. She almost never finishes a sentence or thought without significant pauses to gather her thoughts. About half the time she just gives up trying to say it. 

She has very little balance. Extreme fatigue and weakness. She was so bad on Monday that when she got to work (part-time at local elementary school) a couple of friends in the school office saw how bad she was doing and had to drive her home. She's probably done driving unless things improve. She pretty much never walks anywhere unless she has something to help keep her balance. She's almost fallen a couple of times. 

As a whole, life itself is very overwhelming for her. Just leaving the house and being around anything that isn't very familiar causes her great mental stress and leads to physical tension. Her whole body will tense up very tight and see has difficulty stopping it. It's an internal reaction to things she can't control. 

With a couple of days off of work and staying home more, she's at least feeling a little less tension. The symptoms are still there, and she's very emotional. But we hope a rest might help.

ME

I'll be honest. I feel very frustrated. It's tough looking at my beautiful wife and see so much pain and frustration and sadness in her eyes. It's tough seeing her struggle to say even a simple thought. It was painful last week to see her near meltdown in a grocery store. I had to spend several hours last week dealing with doctors & insurance & hospitals on the phone and email because the hospital required something unnecessary from our insurance company. It was a total mess. In the end we got it straightened out. And I'm sure it was a simple mistake. But it made my week miserable.

GOD

We can't help but wonder about these difficulties and what God is doing. The things we are working on most in our church are the things we are finding most complicated now with Molly's needs and struggles. Spending time with others, even those we know the best at Doxa, is great strain and increases her tension, quickly leading to exhaustion and other symptoms. The spiritual warfare aspect of this seems clear. It's changing the way I'm praying.

We continue to talk and pray together about the goodness of God, His ability to heal and our request that He would heal Molly, and His power made perfect in weakness and the possibility of the weakness remaining rather than being taken away.

If you would, say a prayer for Molly and our family.

Molly Update 11.9.10

It's been a long time since I gave an update on Molly, mostly because there has been nothing new. She has been great. That started to change a month ago. 

Over the last month Molly started to experience small, though not insignificant symptoms from Chiari. Read all the old posts on Molly & Chiari. Or check out an initial post from 2007 on what Chiari I Malmformation is.) On Friday she woke with a massive headache that caused her to vomit most of the day. Late Friday that was done, but other symptoms began and were full-on. She easily loses her balance, struggles to finish thoughts (brain fog), gets easily overwhelmed, has significant muscle weakness and some numbness in her arms and legs, and more. It's been consistently bad since Friday.

That's not a long time, and she has dealt with some symptoms from time to time and had them subside. That happened last year. But it hasn't been this bad since before her last brain surgery. We still are hoping and praying for the symptoms to go away, but they are bad enough that contacting Molly's doctor was necessary.

I emailed Molly's doctor, Dr. David Frim, at the University of Chicago Hospital. He responded today and said that it's time to initiate another evaluation. We are waiting for his assistant to respond and, we assume, make an appointment for us at U of C. We don't know anything about what tests that may require (MRI, spinal tap, etc). 

We have prayed for the symptoms/problem to go away, but were talking today about how God's power will be made perfect through her weakness (2 Cor 12). I'm assuming that's why she wanted me to use the above graphic for this post. :)

I'll post more when we have more info. If anyone can pray, please pray for God to be glorified through this, and to be merciful to Molly.

Also, if you can, pray for me as I will be spending a significant amount of time with her as she is losing ability to be out of the house for an extended period of time on her own. We ran errands on Monday and I don't think she could have done it without me there. This is on top of tough times in our church where money is tight and I'm busier than I've ever been. This is going to put significant strain on our family and we need His strength for all of it.

Thanks friends. We appreciate you.