Thank you for all the suggestions.  A friend came up with "For Waverly.  For Oliver.  For a Cure."  I REALLY like it.  We will be working on the tees and as soon as they are available for purchase I will let you all know.

I think that I have mentioned in previous posts that Waverly has been having a very rough few weeks.  She has been crying - weeping - throughout the day and night.  Her school even called last week, because they were unable to console her.  For those of you who know Waverly, you understand just how unusual this is.  She *never* cries.  She has also been having some serious sleep issues.  She has been sleeping for as few as 4 hours each night!  I took her in to see the neurologist last week, hoping he might have some answers.  Unfortunately, these are symptoms of the disease.  He did prescribe a medicine to help her sleep. We have been adverse to putting her on anything due to complications, but we were all exhausted.  She has been on it for the past 4 nights.  She is sleeping solid for about 8 hours each night.  Still not enough sleep for a 6 year old girl, but we'll take it.  We were considering taking her in for a CT Scan, to be sure there wasn't any intracranial pressure, but she has been tear free all day.

This is the difficult part of Sanfilippo.  Is she crying because she is in pain and is that pain so great it is interrupting her sleep?  Or is she having sleep disturbances and she is so tired that she cries?  I wish she could tell me what hurts or what is bothering her!!

As long as the crying doesn't return, I think we are confident she is pain free.  Unfortunately, kids with Sanfilippo have SEVERE sleep issues.  Compared to a typical child, Waverly's sleep pattern is anything but normal.  It has never been as bad as it has been the past few weeks.

I have to remember that each time we settle into a routine and feel like we have things under control, a new change comes along to shake things up again.


mamabear said…
I'm glad you're getting the eight hours. Praying for more improvement. You honesty post was incredibly beautiful!
erin heiser said…
I LOVE the t-shirt slogan, Shannon. Let me know when they become available for purchase! and I agree with mamabear above, your honesty post was so moving. you amaze me every time I read your blog. thank you for your honesty and sincerity and for being so willing to live your life and your pain out loud like this. i really believe that the blog work you are doing is just that - work - important writing that touches people and makes an impact in the world.

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