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 4.5.12

MRIs

Molly's neurosurgeon has now seen her new battery of MRIs. He says from a surgical perspective, there isn't anything wrong. Spinal fluid flow is excellent. Decompression (space created for flow from first surgery) is still good. They thought a lumbar puncture (spinal tap) might help if there is increased pressure from too much fluid, but she's had that looked at twice in the past and it's never been an issue.

They don't really have any suggestions otherwise. It's basically out of their hands. And that means we don't have reason to believe surgery of any sort is even a thought, at this point.

So for the moment we are keeping with the strategy Molly's neurologist has in place to relieve some of the intense & overwhelming reactions Molly is having to everyday things through some medication. So far they seem to be helping. It may just be that life is a bit more intense for her, and we just deal with the symptoms. It may be that over time the symptoms will subside, and we are certainly hoping that will happen.

MOLLY

As I said, Molly is having some positive reaction to some medicine she recently started. I can say that clearly the last three days have been significantly better than the last 30-40 days. She has more energy, though it's still not anywhere near normal. Yesterday we went shopping at Wal-Mart to see how she would react. She was better than weeks ago, but after coming hope fell asleep on the couch. 

Today, Molly went to work. So far she is a little overwhelmed, but seems to be dealing with it ok the last I heard. She is going to call in a bit during her lunchtime to let me know how she's doing.

We are encouraged by the last few days, but still very concerned and guarding her time until we see if this is a genuine turn toward the better. 

OTHER

Our church and community has been so generous. We've eaten well as many meals have been provided for us. Bags and bags of groceries have been bought and brought to us. Steaks for the grill are marinading in the fridge as I type. We are blessed and thankful for the many local friends who have helped so much.

We are overwhelmed with the many who have prayed, called, written notes and emails, given gift cards, and blessed both locally and from afar. We love all of you and you have made this difficult time more bearable. We don't know if we may be seeing a light at the end of this tunnel for Molly's struggles or if things could turn worse again. But we know you all have our back, and we are very, very thankful.

Last word for now: We have seen our kids learn to pray and trust God better during this time. God has been good to us and is teaching us a lot. I want to talk more about that, but I'm not ready to yet. And we are confident that He will continue to bless Molly and our family far beyond our expectations. To God be all the glory. 

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. :)