Thursday, January 20, 2011


Still on a FB fast, but I feel like this is some info that you would all like to have, so I am blogging about it and then sharing on FB, technically still not spending time on FB :) 
We have an answer for Asher's headaches... Chiari 1 Malformation.  In a nutshell the back part of his brain doesn't quite fit in his skull.  This can be very serious or every livable depending on the length of the brain that is exposed, we don't have that answer yet because we are going to need to see a neurosurgeon to get the majority of our answers.  You can read more about Chiari 1 here...
This is a pretty rare disease only .1% of American's are affected, and amazingly enough here in small town USA I know 2 others.  Isn't God awesome?  I have become fast friends with a girl here who came from Charleston a few months ago, we have a ton of things in common,  including good friends, and when she heard about Asher's headaches she told me about her disease, Chiari 1.  She had suffered since she can remember with the symptoms of this and was only diagnosed a few years ago, thank you God that we didn't have to wait years for a diagnosis.  The minute I got off of the phone with our doctor I called her, I feel such peace now having an adult who can tell me what Asher is going through, how to best help him, and share with me all that she has learned.  (E, you are awesome and I am so thankful for you!).  Then we called our pastor for some prayer and as it turns out her grandson (also named Asher) has the same malformation!  So we prayed together and shared information on doctors and symptoms.  J is in the process of putting together a binder of information (If you know him you are giggling to yourself because J has a binder for EVERYTHING) and he is planning on making a few to share with those who we have been bonded together with in this war against Chiari.  If you are curious Asher's symptoms are as follows...
Severe and sudden headaches
Loss of balance
Sleep Apnea
Raspy Voice
and these are the ones that are obvious or he can communicate, my friend E has said that often her hands and feet go numb for no reason and she will have cloudy periods of time where she feels like she is living under a blanket, or in a stupor.  I think that I refer to these times with Asher as his "witching hour" when he whines or cries for no apparent reason and only wants to be held and comforted.
SO, we have an answer as to the what, now we need to find the answers as to the fix.  I will keep you all posted.  Thank you for your love and prayers during this time, I can feel them and I have a wonderful sense of peace that I know could only come from God.  I love and appreciate you all.


Head of the Clausen Clan! said...

I know you found some peace now that you know what is wrong. I'll pray for your next miracle to be a resolution to make little Asher better!

Stacey said...

Wow, Amber! I know you are so glad to have a diagnosis and get some answers. Praying for Asher and your family and thinking of you all.

Susie said...

Wishing I could give you a big hug! God is good and I'm praising Him for having E to comfort you with some answers & understandings!! We will continue to pray for sweet Asher and the doctors who can get you on the next path. Big Hugs!!!!
Susie B.